tag:blogger.com,1999:blog-32540784824907680032024-03-14T06:18:57.182+00:00(Dementia Just Ain't) SexyNot a daily care blog or advice site, this is a place to share thoughts about the impact of dementia on those who live with it – who could be any of us. My mum, Glenys, had mixed Alzheimer's and vascular dementia for over twenty years; she died in January 2020.
(NB: All content copyright Ming Ho. Link shares welcome, but please do not reprint posts without permission. Contact via form below for permissions or commissions. Thanks!)Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-3254078482490768003.post-49573760460080391102021-01-08T16:47:00.012+00:002021-01-11T12:00:00.178+00:00Snapshot of a Life<p style="text-align: justify;"><span style="font-family: verdana;"><span>My mum, Glenys, died a year ago today. It was not unexpected.</span><span> </span><span>She’d lived with dementia for more than twenty years, survived several near-death episodes, and had remarkable strength of spirit that kept her going, but this time she was irredeemably frail and had finally stopped eating before Christmas.</span><span> </span><span>For more than two weeks I kept vigil at her bedside; it was clear she would not see much, if any, of 2020. Given the subsequent <a href="http://dementiajustaintsexy.blogspot.com/2020/11/care-home-visiting-covid-19.html">traumas of the pandemic</a>, I’m thankful she did not and we were able to have those precious last days together.</span></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">So I’d had many years to prepare, practically and emotionally. I’d already done so much of my grieving. But when the time came to write her eulogy, it was a challenge. Not the writing itself - as a professional scriptwriter, it’s been my job to condense vast swathes of narrative into a pithy broadcast slot, to weave multiple story strands and themes with a broad canvas of characters. But this was my mum. How could I do justice to her <a href="http://dementiajustaintsexy.blogspot.com/2019/10/ninety-three-birthdays.html">93 years of life</a> – nearly half before I was born – and honour the person she was, beneath the dementia that had eroded her own memory of herself? <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"></span></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU0xQ1WBM6Fq-x1KQG6FTkhNBr2wXYLZ0byQVctUAGc90SXHuHi8vfRcZ-880q3ErbDSZ54FY2Rz3xTWqfQWQ6SLCT647i49irhDMfGS5aj5e5aAsDO1cDpN0COlwbc4E9JSWydZu809Y/s638/Glenys%252C+Jean+%2526+friend%252C+eating+ice+cream+copy.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="638" data-original-width="576" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU0xQ1WBM6Fq-x1KQG6FTkhNBr2wXYLZ0byQVctUAGc90SXHuHi8vfRcZ-880q3ErbDSZ54FY2Rz3xTWqfQWQ6SLCT647i49irhDMfGS5aj5e5aAsDO1cDpN0COlwbc4E9JSWydZu809Y/w290-h320/Glenys%252C+Jean+%2526+friend%252C+eating+ice+cream+copy.jpg" width="290" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">Student days in Bangor: mum, right</span></td></tr></tbody></table><span style="font-family: verdana;"><div style="text-align: justify;">Mum had lived for nearly a decade in care, and although I’d tried to keep up with friends on her behalf, she’d lost the ability to engage with them directly and maintain an ongoing relationship. As an only child and the only remaining close family, I had long since become the custodian of her identity: writing up the bare bones of her life story as background for care staff at her nursing homes, creating a photo album to archive memories that no longer lived inside her head, advocating for her to services and in legal terms, to determine her “best interests”. But I was painfully aware that this could never capture all that my mum was – and all that Glenys had been, before she took on that role. </div><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">A person’s life in action is a kaleidoscope of experience, feeling, and collective memory, drawn together from fragments of many sources. It evolves over time, with the addition of new colours and textures, the view constantly shifting. Now there was only one source – me - and that kaleidoscope had crystallised somewhere in the early 2000s, when mum was last “herself” and properly <a href="http://dementiajustaintsexy.blogspot.com/2015/03/knowing-me-knowing-you.html">knew me as her daughter</a>. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><span style="font-family: verdana;"><div style="text-align: justify;">Of course dementia professionals will tell you a person is still themself throughout their lifetime; it depends what we mean by “herself” - we have to learn to accept that in the moment, whatever it may be. And this is the difficulty for family. How do you reconcile the spirit of the person you knew, before dementia took its hold, with the physical person who remains present for maybe decades after, as my mum did? </div></span><div><span style="font-family: verdana;"><span style="text-align: justify;"> </span><br /><div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTv-atsshJpPT9TTIXA4mNYxQgpwTcsDBjV4wYJ4-y8ZkKPO_zjwD9GgqxPRdJEo83D7ThkdOPmCRoTCSaEhW6oR8S5LdBUlq7kcS3Xc9AwA-SloDC44AvGhKUsw6YAddaVyrncUZ3BV0/s910/Glenys%252C+Botanical+Gardens%252C+Oxford+1960s.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="650" data-original-width="910" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTv-atsshJpPT9TTIXA4mNYxQgpwTcsDBjV4wYJ4-y8ZkKPO_zjwD9GgqxPRdJEo83D7ThkdOPmCRoTCSaEhW6oR8S5LdBUlq7kcS3Xc9AwA-SloDC44AvGhKUsw6YAddaVyrncUZ3BV0/s320/Glenys%252C+Botanical+Gardens%252C+Oxford+1960s.jpg" width="320" /></a></div>A few years earlier, when struggling with the most turbulent stage of mum’s <a href="http://dementiajustaintsexy.blogspot.com/2013/04/a-stranger-in-my-home-town.html">forgetting our shared life</a> and <a href="http://dementiajustaintsexy.blogspot.com/2014/05/i-dont-know-who-you-are.html">my very existence</a>, I <a href="http://dementiajustaintsexy.blogspot.com/2019/04/an-act-of-remembrance-update-2019.html">wrote a play</a> that aimed to explore this emotional and philosophical challenge. Once she had died, however, it became a question of drawing all that together in a valediction of no more than ten to fifteen minutes. Fifteen minutes to sum up a life. I realised that it would have to be a snapshot, not a feature film, and started with the tangible…</div></span></div><div><span style="font-family: verdana;"><br /></span><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"></p><span style="font-family: verdana;"><div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG6MCRjwuv6Qn1UM6jQTc-lb1c_IXHQ0nzoBkcH76BSJ8yvGEVunyxhLPPXhO73o0TwnsO8KtDTZpvCfgYYKD0Oyv2iv4sYKy7l2deeMpMSsFqmcIygUIGUkjgn0E3ZnutHe_JITAA9gE/s977/Glenys+pre-teen.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="977" data-original-width="627" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG6MCRjwuv6Qn1UM6jQTc-lb1c_IXHQ0nzoBkcH76BSJ8yvGEVunyxhLPPXhO73o0TwnsO8KtDTZpvCfgYYKD0Oyv2iv4sYKy7l2deeMpMSsFqmcIygUIGUkjgn0E3ZnutHe_JITAA9gE/s320/Glenys+pre-teen.jpg" /></a></div>An only child, like me, Glenys was born in Chorley, Lancashire, to Welsh parents, Margaret and David, whom she adored; her first language at home was Welsh. Chorley was still a mill town in the 1930s, and she remembered the “knocker-up” going along the street, tapping on the windows to wake the mill-workers.</div><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Mum showed an early promise for singing, and began to train from childhood, when a neighbour, who happened to be a music teacher, heard her singing in the hallway. She quickly began to win prizes, including an engagement to sing on the BBC radio programme, Children’s Hour. The song she sang was ‘The Trout’ ('<a href="https://youtu.be/Ti90SaaYu8Y">Die Forelle</a>') by Schubert, which stayed in her repertoire when she became a professional; I used it in my radio play, <a href="https://www.bbc.co.uk/writersroom/scripts/radio-drama/the-things-we-never-said">The Things We Never Said</a>. </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">After Chorley Grammar School, she was all set to go the Royal Manchester College of Music, where she’d already been a part-time student, but it was during WW2, and her parents were worried she’d be called up into the services. Her father was a teacher (a reserved occupation), so she was encouraged to follow in his footsteps, training at St Mary’s College, Bangor, in North Wales, with relatives nearby. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"></p><div class="separator" style="clear: both; text-align: justify;"><span style="font-family: verdana;"><span style="text-align: left;">She had some regrets that she had allowed herself to be persuaded into this, later thinking that she might have had more exciting opportunities to further her singing career in </span><a href="https://en.wikipedia.org/wiki/Entertainments_National_Service_Association" style="text-align: left;">ENSA</a><span style="text-align: left;">, the Forces’ entertainment service; but she enjoyed her time in Bangor, making good friends there, and turned out to have a gift with children. </span></span></div><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"><span style="text-align: left;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4ngcLOKXNkE_bb4S8yqz4V6hJZD4yaHGEGtViEQgz_yboI4KQswj8CAQ9Utt1dwbyHXU1UJ2Nvh1n4eFfwxpiwsGiSv2Dk2dQeZY25o5elBe2aFB39EnduRQI9t6lPzN2FDav5frMSU/s1024/Glenys+-+singing+brochure+001+edit+copy.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="1024" data-original-width="785" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4ngcLOKXNkE_bb4S8yqz4V6hJZD4yaHGEGtViEQgz_yboI4KQswj8CAQ9Utt1dwbyHXU1UJ2Nvh1n4eFfwxpiwsGiSv2Dk2dQeZY25o5elBe2aFB39EnduRQI9t6lPzN2FDav5frMSU/s320/Glenys+-+singing+brochure+001+edit+copy.jpg" /></span></a></div><span style="font-family: verdana;"><div style="text-align: justify;">After the war, her parents, who had always been homesick for Wales, moved back to the Llandudno area, where most of their family lived. Glenys moved down to London with a number of fellow students from Bangor, and worked as a supply teacher, while resuming her training as a singer. She pursued a professional singing career in the 1950s and early 60s, performing oratorio and Lieder, mostly in Wales and the north of England. <a href="https://en.wikipedia.org/wiki/Janet_Baker">Janet Baker</a> (now Dame) was one of her contemporaries on the Northern choral circuit.</div></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">It was while she was appearing in a concert in Oxford that she met my father, Wai Kwong Ho. Born in Shanghai, he had come to the UK to study nuclear engineering at Imperial College, London University, and was at that time working at <a href="https://en.wikipedia.org/wiki/Atomic_Energy_Research_Establishment">Harwell atomic research centre</a>, near Oxford. He and mum found themselves staying in the same boarding house, and the rest is history! </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7iXsO8kZNwVyjhdBxAlwV5YP618DaS7rIqxdrzROjTbbErORMYvHjywgrPDYa8mMgeOhVKy7KYdfHpCOyP51r2UDpUtN3m3gkgbgqnWC2L_W-aExPcRRsY2EjuZjjeDCHBhiCaHYscI/s1024/Glenys+%2526+Wai+confetti.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="1024" data-original-width="792" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM7iXsO8kZNwVyjhdBxAlwV5YP618DaS7rIqxdrzROjTbbErORMYvHjywgrPDYa8mMgeOhVKy7KYdfHpCOyP51r2UDpUtN3m3gkgbgqnWC2L_W-aExPcRRsY2EjuZjjeDCHBhiCaHYscI/s320/Glenys+%2526+Wai+confetti.jpg" /></span></a></div><span style="font-family: verdana;"><div style="text-align: justify;">They were married in Oxford and began their life together on the remote Romney Marsh in Kent, where dad had been appointed to the newly opened <a href="https://en.wikipedia.org/wiki/Dungeness_nuclear_power_station">Dungeness Power Station</a>. I was born a year later – on their first anniversary, in fact! – and mum became a full-time primary school teacher. </div><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Just before my eighth birthday (a time of power cuts and three-day weeks), we moved to Cheltenham in Gloucestershire, where the Central Electricity Generating Board, for whom dad worked, was opening a new headquarters. From that time to her retirement in 1990, mum taught at a local primary school and I accompanied her there for the first three years. </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Anyone who knew her in those days would recall her warmth, generosity, kindness, and sense of fun. If she saw the ice cream van stopping outside the school, she would go out and buy ice creams for her whole class. The Christmas stockings she made with the kids, and filled with treats, became a much-loved tradition. One year she sent me out to buy the stocking-fillers, including jumping beans that were a fad in those days. I had a terrible time trying to count them out in the shop, because as soon as my hand was getting full, they would all jump out! (We couldn’t use them anyway, as it turned out, because they looked too much like antibiotics – a choking risk…) </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><span style="font-family: verdana;"><div style="text-align: justify;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFfoq1Hv_ukkhZBWT4abPH_H0QikVgakdgAo7RJTZVxf9ruhjxePZcW9MEX9MCeqqM5FNfhjhl38QeeV3Dytbr4NEARDLBsNn8uVUfNsIp03Y_fG7vSg0JUXnmGjknIRO0bebGzSqALLQ/s529/Glenys+Painswick+001+copy.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="529" data-original-width="501" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFfoq1Hv_ukkhZBWT4abPH_H0QikVgakdgAo7RJTZVxf9ruhjxePZcW9MEX9MCeqqM5FNfhjhl38QeeV3Dytbr4NEARDLBsNn8uVUfNsIp03Y_fG7vSg0JUXnmGjknIRO0bebGzSqALLQ/s320/Glenys+Painswick+001+copy.jpg" /></a></div>She loved music and theatre, animals (specially small dogs, like our little bichon frisé, Dill), perfume, sunbathing and the seaside, and was most <a href="http://dementiajustaintsexy.blogspot.com/2013/02/a-thankless-task.html">particular about her hair</a>, taking day trips up to a top salon in London after she retired, and enjoying the whole experience as a social occasion. All the shop assistants in town knew her, because she loved to talk, particularly in the jewellers’; she loved to look at pretty things, and to buy presents for me. Not just expensive things, but endless small trinkets from practically every trip into town, that said I was always in her thoughts. Keepsakes I treasure to this day.</div></span><div><span style="font-family: verdana;"><br /></span><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">My beloved dad, Wai, died of cancer at the age of only fifty-two, nine months after diagnosis, when I was in my final year at university, leaving mum widowed just before retirement and in the year that I left home. With hindsight, I believe that shock was the trigger for her earliest symptoms of dementia, heralding decades of escalating trauma that heartbreakingly took her memories, affected her personality, and ultimately <a href="http://dementiajustaintsexy.blogspot.com/2015/03/knowing-me-knowing-you.html">made strangers of us</a>. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Sadly, she did lose some friends over the years, because of her condition; but others proved touchingly loyal and have kept in contact with me to the last. In her latter years, I was immensely grateful for the kindness and dedication of staff who looked after her in two care homes; we could not have managed without them. Given mum’s great age when she died and her many years away from the outside world, I feared her funeral would be sparsely attended, but was moved to see many of her old friends and carers there – and to know that I was not the only person to remember her.<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><o:p><span style="font-family: verdana;"> </span></o:p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9nS39aqTy766qzh2UP115t_PYhr3J8Stxojlr9hyphenhyphenDbDQzvrPwX3Am4yDNWI1QpWnWjDwqa6AxubyUGQqM8pBzkO26MtcnOaOfZQfHwRPK71MVTM4Q05i326qAMSYrJUOkzrW9ybKIm-M/s524/Glenys+%2526+MIng+Evesham+copy+2.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="510" data-original-width="524" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9nS39aqTy766qzh2UP115t_PYhr3J8Stxojlr9hyphenhyphenDbDQzvrPwX3Am4yDNWI1QpWnWjDwqa6AxubyUGQqM8pBzkO26MtcnOaOfZQfHwRPK71MVTM4Q05i326qAMSYrJUOkzrW9ybKIm-M/s320/Glenys+%2526+MIng+Evesham+copy+2.jpeg" width="320" /></a></span></div><span style="font-family: verdana;"><div style="text-align: justify;">Of course, this snapshot is subjective. We editorialise all the time. If mum had continued to live for those last twenty years without dementia, the kaleidoscope would have turned. My memory of her would have evolved too, with imperfections as well as virtues, and all the secrets she took to the grave that even she had forgotten by the time she died. There’s much more to be said about mum and my relationship with her; I’m sure I’ll write about it again. But for now, today, I’ll just say this: <a href="http://dementiajustaintsexy.blogspot.com/2020/01/nos-dawch-cariad.html">nos dawch, cariad</a>! Goodnight, my lovely mum. xx</div></span><p></p></div></div>Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com0tag:blogger.com,1999:blog-3254078482490768003.post-38510316963750772112020-11-11T14:42:00.007+00:002021-02-01T18:32:39.171+00:00Care Home Visiting & COVID-19<p style="text-align: justify;"><span style="font-family: verdana;">My mum, Glenys, <a href="http://dementiajustaintsexy.blogspot.com/2020/01/nos-dawch-cariad.html">died in January 2020</a>; she had <a href="http://dementiajustaintsexy.blogspot.com/2019/10/ninety-three-birthdays.html">lived with dementia for over 20 years</a>. As an only child, I was her sole family carer, shuttling back and forth at least weekly for most of that time to support her, at first in our family home 100 miles away from my own flat in London, and since 2011 in two care homes in that same town. (By 2011, she was already too frail to travel further than 20 minutes, and there was no suitable care near me.) </span></p><p style="text-align: justify;"><span style="font-family: verdana;">Conceding her to <a href="http://dementiajustaintsexy.blogspot.com/2015/08/my-biggest-lie-part-1.html">residential care</a> was a huge trauma in itself, but had become the only practical solution to her escalating needs, too extensive for me to manage on my own. She settled better than I had expected, and over the years I was immensely grateful for the kindness and dedication of the staff, who enabled her to survive for nearly a decade beyond the <a href="http://dementiajustaintsexy.blogspot.com/2013/02/the-crisis-we-all-dread_8629.html">crisis</a> that had brought her into their care.</span></p><p style="text-align: justify;"><span style="font-family: verdana; text-align: left;"><span style="text-align: justify;">Now I am also eternally grateful that she died before the advent of COVID – because I know only too well the anguish of those who are cruelly separated by visiting restrictions. For some, this means never seeing their loved ones again.</span><span style="text-align: justify;"> </span><span style="text-align: justify;">For all those years, when my weekly routine was that 200-mile round trip, anxious of what I might find, conflicted about having to leave, primed every moment of every day in between for the phone call that meant emergency or the ultimate bad news, those visits were my lifeline to my mum – the sole thread of our relationship.</span></span><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: left;"></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: justify;"><tbody><tr><td style="text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2SqPPZsXzhiidrEAo7OUDczsEuLLNQLwOvQnWbU9LFz5l3eT1pvSUnZ2lrBEnHsj0Vh90xqgikDYz1qQOI09q1xGaUEe229WXu12AWrGv5W9uv_B21_8f7i3T3Oo3eQAG_9Y4cEu8XxA/s1077/Glenys+birthday+2019+2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" data-original-height="730" data-original-width="1077" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2SqPPZsXzhiidrEAo7OUDczsEuLLNQLwOvQnWbU9LFz5l3eT1pvSUnZ2lrBEnHsj0Vh90xqgikDYz1qQOI09q1xGaUEe229WXu12AWrGv5W9uv_B21_8f7i3T3Oo3eQAG_9Y4cEu8XxA/s320/Glenys+birthday+2019+2.jpg" width="320" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-family: verdana; font-size: x-small;">Mum's last birthday, 2019</span></td></tr></tbody></table><span style="font-family: verdana;"></span><p></p><div style="text-align: justify;"><span style="font-family: verdana;">Every time I left, I feared I might never see her alive again; latterly, my bag was always packed for the emergency dash. I was always afraid I wouldn’t get there in time. But, crucially, I didn’t have to fear being denied access to her in her last days or hours. </span></div><span style="font-family: verdana;"><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">When the time finally came, I was able to spend nearly two weeks at her bedside, day and night, playing her favourite music, holding her hand, telling her I was there and I loved her. </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"><br /></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">By that time, indeed for at least six years before, she didn’t know who I was or even that she had a daughter. </span><span style="font-family: verdana;">But I knew her, better than anyone. I was there to watch over her, to speak up for her, to fight for her, to ensure that she had everything she needed – including palliative drugs - and as much comfort, security, and peace as possible, to ease her passage from a life of 93 years. I was there to show her she was loved. </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">So yes, there are supposedly exemptions for care home residents in end of life to have visits from family members. But how do you define “end of life”? My mum had medically been on “end of life care” since 2014, when she first became bed-bound in a nursing unit, and had an acute episode of decline that she wasn’t expected to survive. Back then, I also spent two weeks at her bedside, but on that occasion she rallied to have another six years of life ahead. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuPSGlguHqF2YzFNq4MmnyYzzDKanp-kz-r4wII5_8z6-rC3mDvhGPG0a8etkXOQfd7ewlBE7gRf1TDNOqKYahmJ-WCTFMOOgMHtWk6hfTHQAthDu1B1iGTKBhdpQD4KHlo_9y7NqJ7n0/s1024/Glenys+birthday+2019+1.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><span style="font-family: verdana;"><img border="0" data-original-height="768" data-original-width="1024" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuPSGlguHqF2YzFNq4MmnyYzzDKanp-kz-r4wII5_8z6-rC3mDvhGPG0a8etkXOQfd7ewlBE7gRf1TDNOqKYahmJ-WCTFMOOgMHtWk6hfTHQAthDu1B1iGTKBhdpQD4KHlo_9y7NqJ7n0/s320/Glenys+birthday+2019+1.jpg" width="320" /></span></a></div><span style="font-family: verdana;"><div style="text-align: justify;">During those six years, there were numerous other “near death” incidents, when I got in the car with my emergency bag, heart in my mouth, crying as I drove and trying not to kill myself on the road, but again and again, she pulled through; and each time, because I wasn’t local, I had to check into hotels to stay nearby overnight. I was lucky I could afford that. Very lucky. </div><div style="text-align: justify;"><br /></div></span><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Imagine having neither a car to take flight at any time of day or night, nor the funds to pay for travel and accommodation in those desperate situations, having to rely on patchy public transport or lifts from friends for maybe one last round trip goodbye. And then imagine being told you can’t go there at all; you just won’t be allowed in, unless management deems your relative to be imminently at point of death – when you might not be able to reach them.<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">How many times can you go through that?<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Even for professionals, the signs of imminent death can be minutely subtle in a person who is already bed-bound and barely conscious, with severe cognitive impairment – a small change in breathing pattern, an almost imperceptible change of skin colour or temperature. In mum’s case, the supposedly tell-tale cold hands and feet never occurred – her dead hand in mine remained warm, even after her breathing had stopped. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">With the best will in the world, care staff don’t have time to sit with a resident 24/7 and observe these fatal subtleties. Without me there, it’s likely mum would simply have been found dead in her bed at suppertime, and that’s the call I would have received, a hundred miles away. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Pre-COVID, families with relatives in care would know and accept that there are occasions when public health dictates temporary visiting bans. Outbreaks of norovirus or chest infections are common, and you might be asked to stay away for a week or two; this is hard enough, when every week might be your loved one’s last, but you can endure it, knowing there is an end in sight. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOUFuxyzYIikxQg73oVND20vDMrcObPgkpiZWqPQLBzI10sjaRJHc9VR0jDejf1aWosAfYa7XwR2QYBIcGaCLH6OCt6JRYQjT9RbhftZsPRTFX23zECW4U6_9C7uPJVjy-dLoYhEBMyxs/s1024/Mum%252C+Xmas+2019.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><span style="font-family: verdana;"><img border="0" data-original-height="768" data-original-width="1024" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOUFuxyzYIikxQg73oVND20vDMrcObPgkpiZWqPQLBzI10sjaRJHc9VR0jDejf1aWosAfYa7XwR2QYBIcGaCLH6OCt6JRYQjT9RbhftZsPRTFX23zECW4U6_9C7uPJVjy-dLoYhEBMyxs/s320/Mum%252C+Xmas+2019.jpg" width="320" /></span></a></div><span style="font-family: verdana;"><div style="text-align: justify;">Even so, many local relatives are accustomed to visiting once or twice a day, primarily to help with meals. Care homes are often short-staffed and meal times are labour-intensive, particularly in dementia care, where a person in end stage may need spoon-feeding or have swallowing problems, dictating special diets and close supervision. In these instances, strict quarantine for those common pre-COVID viruses may sometimes have been waived for a relative or friend whose assistance is essential. In homes that are chronically under-staffed or subject to temporary management, relatives may feel they <i>have </i>to go in, ban or not, to ensure that their loved one has a meal at all. Imagine then being told you can’t do this for nine months or more.</div><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">So what about window visits, FaceTime, and plastic screens? Aren’t they the COVID solution? Well, as you can see, they don’t help in the situations I’ve described above, where practical support is vital and the reassurance of physical presence and touch may be the </span><a href="http://dementiajustaintsexy.blogspot.com/2013/05/its-not-so-funny-how-we-dont-talk-any.html" style="font-family: verdana;">only communication left</a><span style="font-family: verdana;">. </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">Yes, they’re better than nothing, when the resident is able to participate, but a bed-bound person living in a secure unit on the upper floor of a home (like my mum) will never be able to go to a window or garden to be seen by their family, and cannot understand a person behind a screen; and yes, over-stretched care workers go to amazing lengths, often on their own time and using their own phones, to help families keep in touch via tech – but that tech is often meaningless to a person in end stage dementia and arguably distressing to relatives who can only witness, with no agency, their loved one’s decline through the screen.</span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"><br /></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: left;"></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: center;"><tbody><tr><td style="text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZMYpqUJks7xV6Fj7GRFZ1ULDgj3dHtlsaTeZ3rZIpuNuzYdhwZtdjwtIVXsDyoX0AHV2hl3Ocjin7iAYB0q_HxuiHl0l-IqhHjANmjSi7Afbyw_GSxqzpeoYu3_Mi8uRcl0YSeMDyKGA/s1024/Ming+%2526+Glenys%252C+Xmas+2019+1.jpg" style="margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" data-original-height="768" data-original-width="1024" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZMYpqUJks7xV6Fj7GRFZ1ULDgj3dHtlsaTeZ3rZIpuNuzYdhwZtdjwtIVXsDyoX0AHV2hl3Ocjin7iAYB0q_HxuiHl0l-IqhHjANmjSi7Afbyw_GSxqzpeoYu3_Mi8uRcl0YSeMDyKGA/s320/Ming+%2526+Glenys%252C+Xmas+2019+1.jpg" width="320" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-family: verdana; font-size: x-small;">Christmas 2019, a few days before mum's death</span></td></tr></tbody></table><span style="font-family: verdana;"></span><p></p><div style="text-align: justify;"><span style="font-family: verdana;">This is the reality of dementia care, not fully appreciated by government or the wider public. Tech solutions and outdoor visits that are merely a minor inconvenience to the fit and healthy (but still resented for that inconvenience) might as well be trips to the moon for those living in care with dementia. </span></div><div style="text-align: justify;"><span style="font-family: verdana;"><br /></span></div><div style="text-align: justify;"><span style="font-family: verdana;">Care-workers come and go in and out of homes every day, passing through the community. The residents’ relatives need priority vaccination* on a par with those staff, to enable them to do the same.</span></div><span style="font-family: verdana;"><o:p></o:p></span><p></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">A callous person (and there are sadly plenty of those) might say that if a person doesn’t know you, they don’t miss you, they lose nothing by your absence; you should simply resign yourself to a remote goodbye. But to accept this is to abandon our humanity and consign ourselves to psychological damage for years to come. I was not just mum's only immediate family; she was mine.</span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">The fact that I was there to the last for my mum, whether she knew it or not, gives me the comfort that there was nothing unknown, no gruesome imagined distress or suffering I could have ameliorated; I said everything I needed to say; I know, even if she did not, that she was not alone. That has helped me come to terms with her loss - I wish nothing less for thousands of others in this heart-breaking situation with COVID.<o:p></o:p></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"> </span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;"><br /></span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><span style="font-family: verdana;">* Amended from "testing" on 1 February 2021, when vaccination had become available.</span></p><p class="MsoNormal" style="margin: 0cm 0cm 0.0001pt; text-align: justify;"><br /></p>Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com8tag:blogger.com,1999:blog-3254078482490768003.post-14996113776180377782020-01-16T11:08:00.002+00:002023-12-23T12:15:07.377+00:00Nos Dawch, Cariad<span style="font-family: verdana;"><span face=""verdana" , sans-serif">My beloved mum, Glenys, died peacefully on 8 January 2020, with me by her side. She was 93 and had lived with dementia for probably over 20 years. At rest now: nos dawch, cariad. xx</span><br />
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<span style="font-family: "verdana";">Last week, my mum was 93. She wouldn’t know that, but I do. An only child, I’ve been alive for about half of those 93 birthdays, and I wish I’d paid more attention. I wish I’d taken more photos in the pre-digital days when she still looked like herself, recorded more of her voice, but we didn’t make much of a fuss back then. Until my early twenties, there were three of us, mum, dad, and me, going out for a meal or to a show. Then he died. So it was just mum and me, keeping up the rituals. </span></div>
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<span style="font-family: "verdana";">There were cards, of course, and presents. But I didn’t know I’d need to remember for both of us – not the special occasions, but the precious ordinary days whose passing they marked. </span></div>
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<span style="font-family: "verdana";">This is 2006: the last holiday we took together for mum’s 80th. We were lucky with the weather, a week of Indian summer on Anglesey. I love this photo of us, full of warmth, the light still there in mum’s eyes. She’d had her <a href="http://dementiajustaintsexy.blogspot.com/2013/02/a-thankless-task.html">hair done</a> to go away, something that had been important all my life – never an “old lady” shampoo and set, a modern choppy cut & blow dry that kept her looking more “with it” than her 80 years. I’m so glad we had that last hurrah. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">But it wasn’t an entirely happy trip.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">She’d been in highly <a href="http://dementiajustaintsexy.blogspot.com/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoid mood</a> with me in the preceding days, almost refusing to come.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">The morning we’d set off on the long drive up to Wales it had taken me hours to get her ready, with the minimum of clothes packed in her suitcase. I’d had to find socks and underwear for her at the last minute, because she hadn’t thought to put any in.</span><span style="font-family: "verdana";"> </span></div>
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<span style="font-family: "verdana";">One night we had enjoyed a meal in a restaurant when she suddenly grew agitated, asking loudly, “Who’s that woman singing?” It was Ella Fitzgerald on CD. Mum, however, was convinced that she was there, singing live in the room - and she wasn’t much cop. “She’s singing off key!” Somewhat embarrassed, I asked for the bill, and mum insisted on paying, leaving a twenty-pound note for the tip (way too much), which I just about managed to retrieve, thinking she’d probably had one too many glasses of wine…<o:p></o:p></span></div>
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<span style="font-family: "verdana";">I didn’t fully understand it then, but dementia had already rooted itself deep inside her, like Japanese knotweed, rapaciously colonising its territory. Most of that week we spent quietly sitting on the breezy seafront, soaking up the spectacular Menai Straits view; nevertheless, it was exhausting, being constantly alert to her unspoken reliance on me. When we finally headed home, I knew we couldn’t do this again – it was too much for me, on my own.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">There are no photos of the next few birthdays. Life became too tense. There was always something more urgent than recording the occasion, though we undoubtedly went through the motions. By that time, though I didn’t yet know it, mum had already begun to forget who I was, and our relationship became increasingly fractious. I didn’t want to photograph her then, when she had begun to look frail, empty-eyed, dishevelled (quite unlike her formerly well-groomed self), and sometimes, frankly, malevolent. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Her birthday in 2011 was a watershed: the <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">first in care</a>. The preceding months had been some of the <a href="http://dementiajustaintsexy.blogspot.com/2013/02/the-crisis-we-all-dread_8629.html">most traumatic of our lives</a>, and I finally <a href="http://dementiajustaintsexy.blogspot.com/2015/08/my-biggest-lie-part-2.html">had to find a residential care place for her</a>. I was heartbroken, but she settled better than I had expected, perhaps somewhere inside relieved to have the twenty-four hour security that I could not provide alone. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">She had only been there a couple of weeks by the time of her birthday, and I didn’t know what to expect. There would be some kind of celebratory tea, I gathered, but I was not yet versed in the ways of the care home, and decided to take her out for a pub lunch first, as would have been our old routine.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">It was not a success. Mindful of the need to avoid driving anywhere near our family home, which I was having to pack up to sell, and anxious about getting mum back in time for tea, I found it impossible to relax or be upbeat. The rich steak pie I’d chosen gave me indigestion; mum could barely make a dent in her vast plate of ham, egg, and chips (chosen because it seemed the lightest thing on the menu). She spent most of the trip railing about a fellow resident. Back at the home, there was a cake – a beautifully iced cake, first of many – but I took no photos. It was all too rushed and stressful, too sad; not a day I wanted to remember.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">2012: Mum was settled in the home and doing well. A</span><span style="font-family: "verdana";"> fleeting glimpse of her in a pale blue jumper, blowing out the candles on her cake.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">Her hair, once so pristinely styled and religiously tinted brown as long as I could remember, is now white and unkempt, because she could <a href="http://dementiajustaintsexy.blogspot.com/2013/02/a-thankless-task.html">no longer tolerate hairdressing</a>. </span><span style="font-family: "verdana";">It’s the most blurry of images, snatched in haste, but I treasure it now, because it was probably the last time she was able to stand up and blow those candles out herself, even if she was in a tetchy mood.</span><span style="font-family: "verdana";"> </span></div>
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<span style="font-family: "verdana";">2013:</span><span style="font-family: "verdana";"> A</span><span style="font-family: "verdana";">nother cake. I took a photo of that, but not of mum. I can’t remember why; she may have been unwilling to pose. At this stage, her moods could be very volatile; I’d have to catch her in the right moment of bonhomie. </span><span style="font-family: "verdana";">By Christmas of that year, she would be in a wheelchair; by spring she had <a href="http://dementiajustaintsexy.blogspot.com/2014/05/i-dont-know-who-you-are.html">forgotten who I was</a>; and by her next birthday in 2014, she was bed-bound…</span></div>
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<span style="font-family: "verdana";">2014: the first birthday I really didn’t expect her to reach. When she had taken to her bed in mid summer, she had more or less stopped eating, drank very little, and had started to <a href="http://dementiajustaintsexy.blogspot.com/2014/10/confabulations-no-celebrations.html">hallucinate</a> vividly, often talking to a person in the wall beside her and complaining of a “man with a big, fat bottom”, and another in “clerical robes”, whom she saw at the end of her bed. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">For two weeks I kept a vigil at the bedside, one day driving back to London when she had seemed to stabilise, and coming straight back (a 200-mile round trip) when she took a turn for the worse. At times, I had to call in the nurse to check if she was still breathing and to monitor the colour of her skin, so comatose did she appear in sleep. And yet, by her birthday, a couple of months later, she had rallied; still bed-bound, but eating and drinking again, articulate and capable of banter. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">She’s smiling or laughing here, but not really looking at what's going on. At the time, I focused only on mum in this photo; but now I see I look pretty awful myself – three stone overweight with undiagnosed Type 2 Diabetes, brought on by years of comfort eating and drinking while coping with mum’s condition. Like many carers, I didn’t think to check out my own health; there was always something more important.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">2015: another bed-bound celebration. I thought then that mum looked pitifully frail in bed, but compared to later years, she is relatively robust. </span><span style="font-family: "verdana";">It’s touching to see her </span><span style="font-family: "verdana";">looking tenderly at me, although it was only a fleeting moment and possibly deceptive in terms of her engagement with me. </span><br />
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<span style="font-family: "verdana";">Little did I know that a turbulent time was to come at the home, with a <a href="http://dementiajustaintsexy.blogspot.com/2016/08/five-star-hotel-five-star-care-part-2.html">change of management</a> and cuts to service. </span><span style="font-family: "verdana";">December 2015 saw mum <a href="http://dementiajustaintsexy.blogspot.com/2016/08/five-star-hotel-five-star-care-part-3.html">hospitalised</a> with a potentially fatal aspiration pneumonia (after she had been moved into a new room without my knowledge), and I found myself embroiled in nearly three years of subsequent strife with the provider.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">A terrible time.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";"> </span></div>
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<span style="font-family: "verdana";">Nevertheless, mum rallied once more, and, supported by caring staff, by spring she was well enough to be got up out of bed to sit in a chair and eat her lunch in the dining room. That summer and the next, we even had a few afternoons sitting out in the garden. </span></div>
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<span style="font-family: "verdana";">This is her 90<sup>th</sup>birthday tea in 2016 – not on the day itself, as I had to be in London, but the next day. By this time, she had long forgotten the significance of the date, but was able to participate to some degree in the celebration - although she could not manage the creamy cake, needing to eat with her hands at that stage and unwilling to be fed. </span><br />
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<span style="font-family: "verdana";">Despite her detached look here, she's physically surprisingly strong; it's moving to see the attention staff have given to her hair and dress for the occasion. I’ll never forget their kindness.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">2017 was much less happy. By then, the <a href="http://dementiajustaintsexy.blogspot.com/2016/08/five-star-hotel-five-star-care-part-4.html">home was in crisis</a>, having undergone several changes of management and a mass exodus of staff. Earlier in mum’s birthday week, I had been down to attend a public meeting between management, residents and families, at which various commitments were made by the provider. </span></div>
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<span style="font-family: "verdana";">I returned at the weekend for mum’s birthday, expecting at least a show of good intentions – to find mum still in bed at 1.40pm, the curtains drawn, having apparently been abandoned mid personal care by a new young staff member, who had never worked in care before and unsurprisingly could not cope unsupervised on her first day with the tough demands of a dementia nursing unit, under-staffed by 50% on that shift. She had fled the building and the job without telling anyone.</span></div>
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<span style="font-family: "verdana";">I had to go down and remonstrate with the deputy manager (himself new in post and over-stretched), before an experienced care-worker could be found to get mum up and dressed and bring her birthday cake up from the kitchen (another cream gateau that she couldn't pick up with her hands). </span></div>
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<span style="font-family: "verdana";">We are putting on a brave face here, but it was an upsetting episode for mum’s 91<sup>st</sup>birthday, one that might well have been her last; you can see from my waxy complexion, puffy face, and skin lesions on my arms that I was actually quite unwell with the stress. Two months later I collapsed in a public place and was diagnosed with diabetes. It was the beginning of my recovery; I have since lost 3 stone on a low-carb diet and medication.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">By the spring of 2018, almost all the familiar staff at the home had left. With <a href="http://dementiajustaintsexy.blogspot.com/2016/08/five-star-hotel-five-star-care-part-4.html">continuity of care</a> gone, I took the decision to move mum into a different home, where some of the old staff had preceded her. It was a risk, but once more I was heartened by her resilience. </span><span style="font-family: "verdana";">She’s looking a bit imperious here on her 92</span><sup style="font-family: verdana;">nd</sup><span style="font-family: "verdana";">birthday, but the atmosphere of calm order, with relaxed staff and another beautifully decorated cake, was a relief.</span><br />
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<span style="font-family: "verdana";">And mum’s 93<sup>rd</sup>, last week? </span><span style="font-family: "verdana";">Well, another episode of near-fatal illness in November 2018 has left her more impaired. It may have been some kind of stroke – it’s hard to tell, now that she is too frail for medical tests. She was not expected to survive that day, but has so far pulled through, nearly a year later. There is remarkable strength inside her, though she is less able to </span><a href="http://dementiajustaintsexy.blogspot.com/2013/05/its-not-so-funny-how-we-dont-talk-any.html" style="font-family: verdana;">communicate</a><span style="font-family: "verdana";"> nowadays – another tragedy for a former singer, teacher, and lifelong chatterbox. But I’m grateful she seems content. She can no longer pick up food with her one good hand and swallowing is more difficult; she mostly accepts being fed, and still enjoys cake, custard, ice cream. </span></div>
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<span style="font-family: "verdana";">So this was her 93<sup>rd</sup>: resting in bed, barely awake in truth – but still here. Still loved. You might think these photographs somewhat grotesque, an intrusion of mum’s privacy, as I would have done in the past. There is admittedly an air of desperation in my attempt to look upbeat alongside her obvious frailty (below). When I started this blog, I didn’t post pictures of her with dementia, as a matter of principle – I didn’t think she’d want to be seen like that and I too preferred to remember her as she was before. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">But in the intervening years I have come to see that every day is still precious, potentially more positive than those to come, however hard it might be to discern those positives at the time. </span><br />
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<span style="font-family: "verdana";">Anniversaries are generally important to us all; and when someone has a degenerative disease, it may be all the more meaningful to mark the passage of time. Above all, I think it’s important to record the truth. This is the story of my love for my mum and hers for me (when she knew me) – and of dementia’s impact on us both. </span></div>
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<span style="font-family: "verdana";">So to anyone else on this journey I would say take photos, video, make voice recordings, at whatever stage of the road: mark the days, not just the special occasions - the everyday, the commonplace. One day, they will be your legacy.</span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com7tag:blogger.com,1999:blog-3254078482490768003.post-72482123219764440152019-04-15T15:28:00.010+01:002024-02-09T15:16:48.776+00:00An Act of Remembrance - Update 2019<div class="MsoNormal" style="font-family: Calibri; margin: 0cm 0cm 0.0001pt;">
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<span style="font-family: "verdana";">This Mother’s Day – just like every other day of the year – I’ll be thinking of my lovely mum, Glenys, who has lived with dementia for over twenty years. She’s in residential care now in my home town, and I’ll visit her on the day, as I do most weekends and public holidays. For many years, until 2011, I was her sole carer in our family home and by distance during the week (my own flat being 100 miles away in London). <o:p></o:p></span></div>
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<span style="font-family: "verdana";">I’m a drama scriptwriter by profession, and in May 2017 my play <a href="https://www.bbc.co.uk/writers/scripts/radio-drama/the-things-we-never-said">The Things We Never Said</a> </span><span style="font-family: "verdana";">went out on BBC Radio 4, starring Lia Williams and Siân Phillips. It later won the <a href="https://writersguild.org.uk/writers-guild-awards-winners-2018/">Writers' Guild Best Radio Drama Award 2018</a></span><span style="font-family: "verdana";">. In the past, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the production. Even if it was not to her taste, I suspect she would have praised it anyway – for I was her beloved daughter.</span></div>
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<span style="font-family: "verdana";">Today there is none of that. Mum has never heard the play or even known it was on; I didn’t tell her, as I knew it would mean nothing. And yet it’s all about her, about “us” – the people we were, and the strangers we have become. </span><span style="font-family: "verdana";">I have written before about that <a href="http://dementiajustaintsexy.blogspot.com/2014/05/i-dont-know-who-you-are.html">journey of unknowing</a></span><span style="font-family: "verdana";">, the subtle, devastating <a href="http://dementiajustaintsexy.blogspot.com/2015/03/knowing-me-knowing-you.html">difference between recognition and connection</a></span><span style="font-family: "verdana";">; mum and I have now drifted even further apart. </span></div>
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<span style="font-family: "verdana";">Such fracture would have been unthinkable to either of us twenty years or more ago. Both only children (mum widowed, I single), we were each other’s only immediate family, each other’s best friend. But somehow, in those twenty years, the umbilical cord of all our life’s experience started to detach.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">Mum has been in care for over seven years now, in two different homes. The rupture began long before that. I see it now, in odd, malevolent looks she would sometimes cast me, as we sat at home watching TV; in strangely inappropriate gifts, more suited to a child; in <a href="http://dementiajustaintsexy.blogspot.com/2013/05/paranoia-and-other-fear-that-dare-not.html">wild rages and accusations</a> </span><span style="font-family: "verdana";">of uncharacteristic vitriol; in the bewilderment on her face, when I let myself in with my key. Now I see: already, she didn’t know who I was.</span></div>
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<span style="font-family: "verdana";">Back then, in our family home, she still had the social facility to cover it up, pretend to be “au fait” (one of her favourite phrases). She took her cues from the context: this woman is in the house; she knows me; I must know her. And (crucially) there’s no-one else here… </span></div>
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<span style="font-family: "verdana";">Looking back, I realise that around this time she <a href="http://dementiajustaintsexy.blogspot.com/2013/05/its-not-so-funny-how-we-dont-talk-any.html">stopped driving conversation</a></span><span style="font-family: "verdana";">. Always a prodigious and entertaining talker, she became not mute, but unusually tight-lipped. As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head. I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">Yet this unspoken estrangement didn’t make her less dependent on me. On the contrary. She became unbearably clingy. Increasingly unsteady on her feet, she would refuse a stick on trips out, preferring to clutch limpet-like to my arm. At home, I could hardly leave the room by myself, let alone the house. On days when I had to drive back to my own flat in London, it would take until mid-afternoon to extricate myself from her maddening ploys to stall me. As I finally pulled away down the road, I would find myself screaming in the car.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">My mother’s <a href="http://dementiajustaintsexy.blogspot.com/2013/03/diagnosis-why-label-matters.html">as-yet-undiagnosed condition</a> </span><span style="font-family: "verdana";">trapped us both and locked us away from the world. Her intense, suffocating neediness convinced me that I was uniquely necessary to her and any attempt to regain my own independence would mean abandonment of her. It caused terrible guilt and trauma when those needs became too great for me to manage alone and I <a href="http://dementiajustaintsexy.blogspot.com/2015/08/my-biggest-lie-part-1.html">had to place her in care</a>. </span><span style="font-family: "verdana";">I feared she would never settle, the distress would be too much. But in fact she has done well. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">She needed someone with her 24/7. She needed someone. She didn’t need <i>me</i>. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">In those latter years in our own home, mum relied on me not as myself, as “Ming”, or even her daughter; she relied on me as her carer (though she never saw it as that) - the person who shopped, and cooked, and cleaned, did the washing, managed the builders, handled the boring finance and admin; the person who always came when she called, who generally kept her alive. She relied on me, just as I had relied on her as an unknowing helpless baby. That most primeval impulse: to reach out to the one who nurtures, cry out in the darkness for “Mummy!”</span></div>
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<span style="font-family: "verdana";">Rewind a decade or so, to when I worked on the TV series EastEnders. Each new episode of mine would delight her, long after I’d become blasé. She’d call her friends, tell shop assistants, write proud notes in her diary: “Ming’s EastEnders today! </span><i style="font-family: verdana;"><u>Very good</u></i><span style="font-family: "verdana";">!!” A few years on, things had changed, although I didn’t understand it then.</span></div>
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<span style="font-family: "verdana";">One Saturday night, I was visiting for the weekend and had an episode of Casualty on. Mum showed no interest in the programme. In fact, she paid no attention – just carried on with her crossword, talked all through the dialogue, dozed off for a while. And when it was over, nothing. I was hurt, I have to confess. (OK, so it’s not Shakespeare, but come on, you’re my mum!) I too said nothing, though. What could I say? I told myself she was getting on and could be forgiven for dozing off; and it was just another episode of soap. Not big news any more…</span></div>
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<span style="font-family: "verdana";">A few months later: another episode of something. This time, I was in London. As the credits rolled, the phone rang. It was mum, as usual. But she didn’t mention the show. We chatted for some time, and finally I asked, “Did you see it then?” “See what?” I named the programme. “Oh, yes”, she said flatly. “Well, what did you think?” A long, blank pause. “Not much”, she said at last. “Stupid story, wasn’t it?” <o:p></o:p></span></div>
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<span style="font-family: "verdana";">By then, I realised she had forgotten that any of these programmes were anything to do with me, if she was aware of them at all. She didn’t mean to be unkind. But still it did hurt. Because I had to ask myself, are these her honest thoughts? Is this what she really thinks of my work, stripped of motherhood’s indulgence? <o:p></o:p></span></div>
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<span style="font-family: "verdana";">For her first two years in care, this encroaching “unknowingness” existed alongside our old relationship. She would not remember the context of my life or our relationship outside my visits, or the visits themselves once I’d gone. But in the bubble of those few hours over lunch and then tea, we were still mother and daughter – even if, in her eyes, I was the former and she the latter. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Christmas 2013 marked another watershed. Each week, I would find mum in the lounge, already seated at the table by the staff for me to join her for our lunch. Her mobility now greatly impaired, she had acceded to a wheelchair in recent weeks, so I was doubly surprised to meet her walking (stick-less!) toward me down the corridor from the lounge. I went to take her arm, and instinctively she recoiled, her face aghast with mistrust. “What’s the matter?”, I asked. But as I said it, I knew. “It’s me”, I said. “I’m Ming.” “Ming?”, she said, bewildered. “Oh, Ming…” It did come back, but I knew: out of the familiar context of the lounge, I could have been anyone. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">I hugged her to me; she hugged me back with skeleton arms. “Don’t forget me”, I pleaded - though I knew I shouldn’t, it wasn’t a promise she could give. “Please, don’t forget me!” “How <i>could </i>I forget <i>you</i>?”, she said. “You’re my Ming. You’re my little girl.”<o:p></o:p></span></div>
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<span style="font-family: "verdana";">But by the spring of 2014 she had.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">So where are we now? What am I to her? The harsh truth is probably nothing. She has not just forgotten me as the person I am today - she has no memory of the young woman I was, the teenager, the little girl, the baby in her arms. She does not believe she ever had a daughter.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">Yet dementia is not a one-way street; it has countless meandering byways. Up to a couple of years ago, mum might greet me with pleasure on a good day and say I was “a lovely girl”, regardless of who I was. On a bad day, I’d be met by antagonism or just a blank. Sometimes she’d still call me by name, as if I’d just stepped out for a moment and we could pick up where we left off. But there was no longer any root to that knowledge; it was no more than a reflex – and now even that much has gone. Her eyesight declining, she barely registers my presence at all. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Her speech too, once so animated, is now eroding, along with the context that had long preceded it. Over the years, I had grown to accept that attempts at conversation must be on her terms, referencing her life before I was born. Now even those memories of her youth, the stories she told me about herself, are remembered only by me. What she yearns for most are her parents – and I can’t give her that.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">So I put on a CD; TV has long since become too confusing. She still enjoys music, though not necessarily the same kind as before. I bring flowers, feed her fruit and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…</span></div>
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<span style="font-family: "verdana";">As dementia shrinks down your world, small pleasures become more precious. Very occasionally in recent years, I have been able to wheel mum down to the garden in fine weather. I treasure those rare occasions when she can still enjoy the breeze, the birds, the warmth of sun on her face. I enjoy them too. But I can’t say we do it together. Side by side we are separate now. I miss the light of connection in her eyes.</span></div>
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<span style="font-family: "verdana";">Some time ago, I had a review with the Office of Public Guardian Visitor, who supervises Court of Protection Deputies like me, who manage the financial affairs of a person lacking capacity. As we went through the bank accounts, he asked me why I visited my mother so often (it’s a two-hundred-mile round trip). I was taken aback. Surely it’s obvious? She’s my mum. She’s over ninety, with advanced dementia; I’m her only family. Yes, but what is the </span><i style="font-family: verdana;">purpose </i><span style="font-family: "verdana";">of these visits, he persisted? </span></div>
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<span style="font-family: "verdana";">I have to see how she is, I said; to make sure she’s all right, that she has everything she needs. You could do that by phone, he said. Some deputies visit only once a year. I was perplexed at this approach. She’s forgetting me, I said; I come as often as I can to keep up the connection…<o:p></o:p></span></div>
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<span style="font-family: "verdana";">Is that for her though, he asked; or is it really for you? <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Afterwards, I realised that he wasn’t criticising me, merely pointing out the distinction between my legal obligations as deputy and the personal actions of a daughter. But it gave me pause for thought. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Each week, I drive down past the country pub where we used to go for Sunday lunch; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets; the park we used to pass every day on the way to school, where families walk their dogs. It’s as if I’m driving past our old life and it won’t let me in. <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Intimacy has gone; our shared history is erased.<o:p></o:p></span></div>
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<span style="font-family: "verdana";">My mother is not dead, but I mourn her every day. I mourn myself too, and that long-gone life we shared. But I will never abandon her. I will never give up. So long as she is still there, I will always continue to visit. Why? <o:p></o:p></span></div>
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<span style="font-family: "verdana";">Because I love her; and I know that she loved me. I do this as an act of remembrance.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRocl82OOVR10CFyHM3Zde-PeTvJt2fO4cSI0mNv0OtP-G4hsu4psf7g6vi4nkmULy31G3-5urE18o19qwYzP53vlmQrzk0ftNxAFqFggPiLAcCSUf11Gwp2f-Rfzbo6xCbV5rBH8dWyQ/s1600/Cake+2019+oblique.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="986" data-original-width="1024" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRocl82OOVR10CFyHM3Zde-PeTvJt2fO4cSI0mNv0OtP-G4hsu4psf7g6vi4nkmULy31G3-5urE18o19qwYzP53vlmQrzk0ftNxAFqFggPiLAcCSUf11Gwp2f-Rfzbo6xCbV5rBH8dWyQ/s320/Cake+2019+oblique.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""verdana" , sans-serif" style="font-size: xx-small;">Cake: Dunn's Bakery, Crouch End, London</span></td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRocl82OOVR10CFyHM3Zde-PeTvJt2fO4cSI0mNv0OtP-G4hsu4psf7g6vi4nkmULy31G3-5urE18o19qwYzP53vlmQrzk0ftNxAFqFggPiLAcCSUf11Gwp2f-Rfzbo6xCbV5rBH8dWyQ/s1600/Cake+2019+oblique.jpg" style="margin-left: 1em; margin-right: 1em;"></a></div>
<span style="font-family: "verdana"; text-align: justify;"><span style="font-family: "verdana"; text-align: justify;"><div><span style="font-family: "verdana"; text-align: justify;"><span style="font-family: "verdana"; text-align: justify;"><br /></span></span></div>If you are caring for someone who has moved into residential care or is facing that transition, charity <a href="https://dementiacarers.org.uk/">Dementia Carers Count</a> offers support tailored to this stage of the journey and end of life issues, among its range of core resources for friends and family carers of people living with dementia.</span><span style="font-family: "verdana"; text-align: justify;"> </span><span style="font-family: "verdana"; text-align: justify;"><a href="https://dementiacarers.org.uk/contact/">Contact them</a></span><span style="font-family: "verdana"; text-align: justify;"> for details. </span></span><br />
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<span style="font-family: "verdana"; text-align: justify;">My play, The Things We Never Said, is not currently on <a href="http://www.bbc.co.uk/programmes/b08pfqqg">BBC Sounds</a>, but can be downloaded to read from the <a href="https://www.bbc.co.uk/writers/scripts/radio-drama/the-things-we-never-said">BBC Writersroom Drama Script Archive</a></span><span style="font-family: "verdana"; text-align: justify;">. You can also hear an extract from the radio production and discussion on BBC Radio 4’s <a href="http://www.bbc.co.uk/programmes/p0542xfy">Fortunately podcast</a> with Jane Garvey and Fi Glover (@ 10’ 33”)</span><span style="font-family: "verdana"; text-align: justify;">.</span><br />
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<span style="font-family: "verdana";">This updated post was published on the <a href="https://dementiacarers.org.uk/">Dementia Carers Count</a> website in three parts for Mother's Day 2019: </span></div>
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<div style="text-align: justify;"><a href="https://dementiacarers.org.uk/blog/an-act-of-remembrance-part-1/"><span style="font-family: verdana;">Part 1</span></a><br /></div>
<div style="text-align: justify;"><a href="https://dementiacarers.org.uk/blog/an-act-of-remembrance-part-2/"><span style="font-family: verdana;">Part 2</span></a><br /></div>
<div style="text-align: justify;"><a href="https://dementiacarers.org.uk/blog/an-act-of-remembrance-part-3/"><span style="font-family: verdana;">Part 3</span></a><br /></div>
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<br /></div><div style="text-align: justify;"><span style="font-family: verdana;">[Update 2020: Mum <a href="http://dementiajustaintsexy.blogspot.com/2021/01/snapshot-of-life.html">died in January 2020</a>. We were fortunate that it was before the restrictions of COVID-19 and I was able to be at her side, day and night, for two weeks before she died. At peace, at last.]</span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com2tag:blogger.com,1999:blog-3254078482490768003.post-63547029492486972052017-05-08T02:00:00.001+01:002020-09-21T18:22:39.580+01:00An Act of Remembrance<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">On Thursday, 11 May, my
play, <a href="https://www.bbc.co.uk/writersroom/scripts/radio-drama/the-things-we-never-said">The Things We Never Said</a>, will go out on BBC Radio 4, starring <a href="http://www.imdb.com/name/nm0931165/">Lia Williams</a> and <a href="http://www.imdb.com/name/nm0680795/?ref_=nv_sr_1">Siân Phillips</a>.<span style="mso-spacerun: yes;"> </span>In years gone by, mum
would have been thrilled to share such news, would have tuned in with
excitement, and called me after to enthuse about the performance.<span style="mso-spacerun: yes;"> </span>Even if it was not to her taste, I suspect,
she would have praised it anyway – for I was her beloved daughter.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">This time, there will be
none of that.<span style="mso-spacerun: yes;"> </span>Mum won’t listen, or even
know it’s on; I won’t tell her, as it will mean nothing.<span style="mso-spacerun: yes;"> </span>And yet it’s a play all about her, about “us”
– the people we were, and the strangers we have become.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">I have written here before
about that <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/i-dont-know-who-you-are.html">journey of unknowing</a>, the subtle, devastating <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/03/knowing-me-knowing-you.html">difference between recognition and connection</a>; mum and I have now drifted further apart in that
bleak and lonely landscape…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "verdana";">Such fracture would have been unthinkable to either of us twenty years or more ago. </span><span style="font-family: "verdana";">Both only children (mum widowed, I single),
we were each other’s only immediate family, each other’s best friend.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">But somehow, in those twenty years, the
umbilical cord of all our life’s experience started to detach.</span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ9ROrkQs-wRFjwqT-GDE33NMAR6HAJ6PXqjEI5WsRY2H8hkTJnmP1iYezZoGvyz0leX-Q9soDA74COC1YZZczDNaCGefdsBYJ3tF43zn5v6-E0cPeP8o69iQjdyx1TLgw13sfuP1c4qo/s1600/Clearwell+1995+edit.jpg" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ9ROrkQs-wRFjwqT-GDE33NMAR6HAJ6PXqjEI5WsRY2H8hkTJnmP1iYezZoGvyz0leX-Q9soDA74COC1YZZczDNaCGefdsBYJ3tF43zn5v6-E0cPeP8o69iQjdyx1TLgw13sfuP1c4qo/s320/Clearwell+1995+edit.jpg" width="282" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""verdana" , sans-serif" style="font-size: xx-small;">Mum, as I best remember her... (Me, behind in the mirror)</span></td></tr>
</tbody></table>
<span style="font-family: "verdana";">Mum has been in
residential care for over five years now.</span><span style="font-family: "verdana";">
</span><span style="font-family: "verdana";">The rupture began long before that.</span><span style="font-family: "verdana";">
</span><span style="font-family: "verdana";">I see it now, in odd, malevolent looks she would sometimes cast me, as
we sat at home watching TV; in strangely inappropriate gifts, more suited to a
child; in <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">wild rages and accusations</a> of uncharacteristic vitriol; in the
bewilderment on her face, when I let myself in with my key.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">Now I see: already, she didn’t know who I
was.</span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Back then, in our family
home, she still had the social facility to cover it up, pretend to be “au fait”
(one of her favourite phrases).<span style="mso-spacerun: yes;"> </span>She took
her cues from the context: this woman is in the house; she knows me; I must
know her.<span style="mso-spacerun: yes;"> </span>And (crucially) there’s no-one
else here…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Looking back, I realise
that around this time she <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">stopped driving conversation</a>.<span style="mso-spacerun: yes;"> </span>Always a prodigious and entertaining talker,
she became, not mute, but unusually tight-lipped.<span style="mso-spacerun: yes;"> </span>As if there were some passive-aggressive sulk
going on beneath the surface – a silent antagonism that said I had done her some
inexplicable wrong.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">When I served her meals,
she would thank me courteously, somehow too polite, ingratiating almost; and as
she ate, she might look up now and again and comment, “this is very nice, thank
you”, with a gracious nod of the head.<span style="mso-spacerun: yes;"> </span>I
couldn’t put my finger on it at the time, but now I see: she was addressing me
as a waitress.<o:p></o:p></span></div>
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<br /></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Yet this unspoken
estrangement didn’t make her less dependent on me.<span style="mso-spacerun: yes;"> </span>On the contrary.<span style="mso-spacerun: yes;"> </span>She became unbearably clingy.<span style="mso-spacerun: yes;"> </span>Increasingly unsteady on her feet, she would
refuse a stick on trips out, preferring to clutch limpet-like to my arm.<span style="mso-spacerun: yes;"> </span>At home, I could hardly leave the room by
myself, let alone the house.<span style="mso-spacerun: yes;"> </span>On days
when I had to drive back to my own flat in London, it would take until
mid-afternoon to extricate myself from her maddening ploys to stall me.<span style="mso-spacerun: yes;"> </span>As I finally pulled away down the road, I would
find myself screaming in the car.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">My mother’s (as yet
<a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/diagnosis-why-label-matters.html">undiagnosed</a>) illness trapped us both and locked us away from the world.<span style="mso-spacerun: yes;"> </span>Her intense, suffocating neediness convinced
me that I was uniquely necessary to her and any attempt to regain my own
independence would mean abandonment of her.<span style="mso-spacerun: yes;">
</span>It caused terrible guilt and trauma when those needs became too great
for me to manage alone and <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">I had to place her in care</a>.<span style="mso-spacerun: yes;"> </span>I feared she would never settle, the distress
would be too much.<span style="mso-spacerun: yes;"> </span>But in fact she has
done well.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">She needed someone with
her 24/7.<span style="mso-spacerun: yes;"> </span>She needed someone.<span style="mso-spacerun: yes;"> </span>She didn’t need <i style="mso-bidi-font-style: normal;">me</i>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "verdana";">In those latter years in
our own home, mum relied on me not as myself, as “Ming”, or even her daughter;
she relied on me as her carer (though she never saw it as that) - the person
who shopped, and cooked, and cleaned, did the washing, managed the builders,
handled the boring finance and admin; the person who always came when she called,
who generally kept her alive.<span style="mso-spacerun: yes;"> </span>She relied
on me, just as I had relied on her, as an unknowing helpless baby.<span style="mso-spacerun: yes;"> </span>That most primeval impulse: to reach out to the
one who nurtures, cry out in the darkness for “Mummy!”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Rewind a decade or so, to
when I worked on the TV series <a href="http://www.bbc.co.uk/programmes/b006m86d">EastEnders</a>.<span style="mso-spacerun: yes;">
</span>Each new episode of mine would delight her, after I’d become blasé.<span style="mso-spacerun: yes;"> </span>She’d call her friends, tell shop assistants,
write proud notes in her diary: “Ming’s EastEnders today!<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;"><u>Very
good</u></i>!!”<span style="mso-spacerun: yes;"> </span>A few years on, things
had changed, although I didn’t understand it then.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">One Saturday night, I was
visiting for the weekend; we’d gone out early to eat.<span style="mso-spacerun: yes;"> </span>I had an episode of <a href="http://www.bbc.co.uk/programmes/b006m8wd">Casualty</a> on and wanted to
get back quickly to watch.<span style="mso-spacerun: yes;"> </span>Mum showed no
interest in the programme.<span style="mso-spacerun: yes;"> </span>In fact, she
paid no attention – just carried on with her crossword, talked all through the
dialogue, dozed off for a while.<span style="mso-spacerun: yes;"> </span>And when
it was over, nothing.<span style="mso-spacerun: yes;"> </span>I was hurt, I have
to confess.<span style="mso-spacerun: yes;"> </span>(OK, so it’s not
Shakespeare, but come on, you’re my mum!)<span style="mso-spacerun: yes;">
</span>I too said nothing, though.<span style="mso-spacerun: yes;"> </span>What
could I say?<span style="mso-spacerun: yes;"> </span>I told myself she was
getting on and could be forgiven for dozing off; and it was just another
episode of soap.<span style="mso-spacerun: yes;"> </span>Not big news any more…<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">A few months later:
another episode of something.<span style="mso-spacerun: yes;"> </span>This time,
I was in London.<span style="mso-spacerun: yes;"> </span>As the credits rolled,
the phone rang.<span style="mso-spacerun: yes;"> </span>It was mum, as usual. <span style="mso-spacerun: yes;"> </span>But she didn’t mention the show.<span style="mso-spacerun: yes;"> </span>We chatted for some time, and finally I
asked, “Did you see it then?”<span style="mso-spacerun: yes;"> </span>“See
what?”<span style="mso-spacerun: yes;"> </span>I named the programme. “Oh, yes”,
she said flatly.<span style="mso-spacerun: yes;"> </span>“Well, what did you
think?”<span style="mso-spacerun: yes;"> </span>A long, blank pause.<span style="mso-spacerun: yes;"> </span>“Not much”, she said at last.<span style="mso-spacerun: yes;"> </span>“Stupid story, wasn’t it?” <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">By then, I realised she
had forgotten that any of these programmes were anything to do with me, if she
was aware of them at all.<span style="mso-spacerun: yes;"> </span>She didn’t
mean to be unkind.<span style="mso-spacerun: yes;"> </span>But still it did
hurt.<span style="mso-spacerun: yes;"> </span>Because I had to ask myself, are
these her honest thoughts?<span style="mso-spacerun: yes;"> </span>Is this what
she really thinks of my work, stripped of motherhood’s indulgence?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Now I visit her in the
care home most weekends.<span style="mso-spacerun: yes;"> </span>For the first two
years, this encroaching “unknowingness” existed alongside our old
relationship.<span style="mso-spacerun: yes;"> </span>She would not remember the
context of my life or our relationship outside those visits, or the visits
themselves once I’d gone.<span style="mso-spacerun: yes;"> </span>But in the
bubble of those few hours over lunch and then tea, we were still mother and
daughter – even if, in her eyes, I was the former and she the latter.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Christmas 2013 marked
another watershed.<span style="mso-spacerun: yes;"> </span>Each week, I would
find mum in the lounge, already seated at the table by the staff for me to join
her for our lunch.<span style="mso-spacerun: yes;"> </span>Her mobility now
greatly impaired, she had acceded to a wheelchair in recent weeks, so I was doubly
surprised to meet her walking (stick-less!) toward me down the corridor from
the lounge.<span style="mso-spacerun: yes;"> </span>I went to take her arm; and
instinctively she recoiled, her face aghast with mistrust.<span style="mso-spacerun: yes;"> </span>“What’s the matter?”, I asked.<span style="mso-spacerun: yes;"> </span>But as I said it, I knew. “It’s me”, I said. “I’m
Ming.”<span style="mso-spacerun: yes;"> </span>“Ming?”, she said,
bewildered.<span style="mso-spacerun: yes;"> </span>“Oh, Ming…” <span style="mso-spacerun: yes;"> </span>It did come back, but I knew: out of the
familiar context of the lounge, I could have been anyone.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">I hugged her to me; she
hugged me back with skeleton arms.<span style="mso-spacerun: yes;">
</span>“Don’t forget me”, I pleaded - though I knew I shouldn’t, it wasn’t a
promise she could give.<span style="mso-spacerun: yes;"> </span>“Please, don’t
forget me!”<span style="mso-spacerun: yes;"> </span>“How <i style="mso-bidi-font-style: normal;">could </i>I forget <i style="mso-bidi-font-style: normal;">you</i>?”, she
said.<span style="mso-spacerun: yes;"> </span>“You’re my Ming.<span style="mso-spacerun: yes;"> </span>You’re my little girl.”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">But <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/i-dont-know-who-you-are.html">by the spring she had</a>.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">So where are we now?<span style="mso-spacerun: yes;"> </span>What am I to her?<span style="mso-spacerun: yes;"> </span>It’s impossible to say.<span style="mso-spacerun: yes;"> </span>Dementia is not a one-way street; it has countless
meandering byways. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">On a good day, mum will
greet me with pleasure and say I’m “a lovely girl”, regardless of who I
am.<span style="mso-spacerun: yes;"> </span>Sometimes she’ll call me by name, as
if I’d just stepped out for a moment and we can pick up where we left off.<span style="mso-spacerun: yes;"> </span>But there’s no root to that knowledge.<span style="mso-spacerun: yes;"> </span>It’s no more than a reflex.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">We <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">don't talk much</a>; I have
to accept it must be on her terms, her life before I was born.<span style="mso-spacerun: yes;"> </span>Now even those memories of her youth, the
stories she told me about herself, are remembered only by me.<span style="mso-spacerun: yes;"> </span>What she yearns for most are her parents –
and I can’t give her that.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">So I put on a CD; TV is
too much stress.<span style="mso-spacerun: yes;"> A former singer, s</span>he still enjoys music,
though not necessarily as before.<span style="mso-spacerun: yes;"> </span>I
bring flowers and cake, make her a cup of coffee; she used to drink tea like me,
but so many tastes have changed…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">There are things for which
to be thankful.<span style="mso-spacerun: yes;"> </span>As dementia shrinks down
your world, small pleasures become more precious.<span style="mso-spacerun: yes;"> </span>If the weather’s fine, I might wheel mum down
to the garden and we’ll sit out there for a while.<span style="mso-spacerun: yes;"> </span>We’ve only been able to do this a few times
since last spring; she was bed-bound for eighteen months before.<span style="mso-spacerun: yes;"> </span>So I treasure those rare occasions when mum
can still enjoy the breeze, the birds, the warmth of sun on her face.<span style="mso-spacerun: yes;"> </span>I enjoy that too.<span style="mso-spacerun: yes;"> </span>But I can’t say we do it together.<span style="mso-spacerun: yes;"> </span>Side by side we are separate now.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">This picture was one of
those “good days”.<span style="mso-spacerun: yes;"> </span>Dressed in her
favourite bright pink jumper, hair newly washed, mum looks animated here,
caught in mid-conversation.<span style="mso-spacerun: yes;"> </span>Except she
isn’t talking to me.<span style="mso-spacerun: yes;"> </span>Her incessant
stream of whispered monologue is directed at a person on the other side of her,
whom only she can see.<span style="mso-spacerun: yes;"> </span>Her <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/a-thankless-task.html">hair looks nice</a>; the staff have blow-dried it with care.<span style="mso-spacerun: yes;">
</span>But it’s not her style, the mum I used to know; and if she looks at me,
it’s with a stranger’s eyes…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">The other week, I told a friend
how hard I find this now - to see mum looking so changed.<span style="mso-spacerun: yes;"> </span>“She’s ninety”, said my friend, “no-one looks
the same”.<span style="mso-spacerun: yes;"> </span>But it’s not just the
physical change.<span style="mso-spacerun: yes;"> </span>I look at other friends’
mothers of a similar age: white-haired, yes, and frailer, but still
emphatically themselves.<span style="mso-spacerun: yes;"> </span>Hairstyle, clothes,
and make-up are only part of the equation.<span style="mso-spacerun: yes;">
</span>I miss the light of connection in her eyes.<o:p></o:p></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span face=""verdana" , sans-serif" style="font-size: xx-small;">Another garden afternoon: mum is oblivious to me</span></td></tr>
</tbody></table>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">We don’t share lunch any
more.<span style="mso-spacerun: yes;"> </span>Mum eats little and early.<span style="mso-spacerun: yes;"> </span>I bring a sandwich to eat in her room; and in
the awkward intimacy of that act, each bite audible in the silence, she watches
me with something approaching distaste.<span style="mso-spacerun: yes;"> </span>The
mechanics of eating are not pretty, I admit.<span style="mso-spacerun: yes;">
</span>Yet such clumsy-grotesque bodily function can be endearingly familiar in
those we love.<span style="mso-spacerun: yes;"> </span>Her distaste tells me I
am no longer of her flesh.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">On a bad day, she won’t
engage with me at all.<span style="mso-spacerun: yes;"> </span>Sometimes barely
awake, others alert with antagonistic spark.<span style="mso-spacerun: yes;">
</span>Last week, for something to say, I showed her a photo of us together that
I’d glued to an Easter card (the written word mere hieroglyphics to her now).
“I’m not interested!”, she said and batted it away.<span style="mso-spacerun: yes;"> </span>On days like these, anything I say,
everything I try, will be met with a blank, a dismissal – at best a humouring
nod.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">That day, I slipped out
early.<span style="mso-spacerun: yes;"> </span>Across the fields at the back of
the home, lambs bleated in the distance.<span style="mso-spacerun: yes;">
</span>I walked down to take in the view; sat for a few minutes, breathing in
the peace and cool air before my long journey back to the city.<span style="mso-spacerun: yes;"> </span>How strange, I thought, to be sitting here on
my own, while behind me there’s mum’s window, and behind that she will be
sitting alone there too, oblivious to my presence a few short metres away.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">A couple of months ago, I
had a review with the <a href="https://www.gov.uk/become-deputy/supervision-support-and-visits">Court of Protection Visitor</a>, who supervises appointed <a href="https://www.gov.uk/become-deputy/supervision-support-and-visits">Deputies</a> like me, who manage the financial affairs of a person
lacking capacity.<span style="mso-spacerun: yes;"> </span>As we went through the
bank accounts, he asked me why I visited my mother so often (it’s a
two-hundred-mile round trip).<span style="mso-spacerun: yes;"> </span>I was
taken aback.<span style="mso-spacerun: yes;"> </span>Surely it’s obvious?<span style="mso-spacerun: yes;"> </span>She’s my mum.<span style="mso-spacerun: yes;">
</span>She’s ninety, in end stage dementia; I’m her only family. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Yes, but what
is the <i style="mso-bidi-font-style: normal;">purpose </i>of these visits, he
persisted?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">I have to see how she is,
I replied; to make sure she’s all right, that she has everything she needs.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">You could do that by phone, he said.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">Some deputies visit only once a year. (If you are in care with no immediate family, your deputy may be a distant relative or legal professional.) I was perplexed at this approach.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">She’s forgetting me, I said; I come as often
as I can to keep up the connection…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Is that for her though, he
asked; or is it really for you?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Afterwards, I realised
that he wasn’t criticising me, merely pointing out the distinction between my
legal obligations as deputy and the personal actions of a daughter.<span style="mso-spacerun: yes;"> </span>But it gave me pause for thought.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Every week, I drive down
past the country pub where mum and I used to go for Sunday lunch; the spa hotel where she once booked us a swanky post-Christmas meal that proved to be a wash-out;
the garden centre where we spent many a happy afternoon, choosing bedding
plants and hanging baskets.<span style="mso-spacerun: yes;"> </span>It’s as if
I’m <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html">driving past our old life</a> and it won’t let me in.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Intimacy has gone; our
shared history is erased.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">My mother is not dead, but
I mourn her every day.<span style="mso-spacerun: yes;"> </span>I mourn myself
too, and that long-gone life we shared.<span style="mso-spacerun: yes;">
</span>But I will never abandon her.<span style="mso-spacerun: yes;"> </span>I
will never give up.<span style="mso-spacerun: yes;"> </span>I will always
continue to visit.<span style="mso-spacerun: yes;"> </span>Why?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana";">Because I love her; and I
know that she loved me.<span style="mso-spacerun: yes;"> </span>I do this as an act
of remembrance.</span><br />
<span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";">[</span><span style="font-family: "verdana";">In January 2018, the play won Best Radio Drama in the </span><a href="https://writersguild.org.uk/writers-guild-awards-winners-2018/" style="font-family: verdana;">Writers' Guild Awards 2018</a><span style="font-family: "verdana";">. </span><a href="http://www.bbc.co.uk/programmes/p0542xfy" style="font-family: verdana;">Listen to a discussion and extract from the play on BBC Radio 4 Fortunately (@ 10' 33")</a> <span face=""verdana" , sans-serif">and <a href="https://www.bbc.co.uk/writersroom/scripts/radio-drama/the-things-we-never-said">read the script here</a> via BBC WritersRoom.</span><br />
<span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";">There is also <a href="http://dementiajustaintsexy.blogspot.com/2019/04/an-act-of-remembrance-update-2019.html">an updated version of this post</a> as at April 2019.]</span><br />
<span style="font-family: "verdana";"><br /></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com18tag:blogger.com,1999:blog-3254078482490768003.post-3820862539804334842016-08-24T17:56:00.003+01:002020-10-20T10:34:42.922+01:00Five-Star Hotel, Five-Star Care? Part 4: Conclusion<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">New Year 2016: with mum
thankfully recovering from an <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">emergency admission</a> from her care home to
hospital just before Christmas (and another acute episode at the beginning of
January), I made a formal complaint to the General Manager about a number of
issues that had led up to this crisis.<span style="mso-spacerun: yes;"> </span>I
was shocked to find myself in this situation, as prior to summer 2015 I had had
nothing but praise for the home.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">I did not blame the staff,
who were clearly doing their best as before, but with ever-greater demands on
their time since <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">a new wing had opened</a> in mum’s unit, doubling capacity.<span style="mso-spacerun: yes;"> </span>As the complaints process progressed through
the subsequent months and indeed years, it also became evident that most of the problems
could not be solved unilaterally by the manager, but had their roots in
corporate culture and finance.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">The company, which still
trades on the person-centred ethos of its founder, had changed its structure
and aims: it was now run by a corporate board with City objectives. These
structural and strategic changes occurred back in 2013, but were never
communicated to the residents and families dependent on its extensive network
of homes.<span style="mso-spacerun: yes;"> </span>It took a couple of years for
their effect to filter down.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">In the last decade, a
number of new operators have entered the market – many from a background of
“hospitality”, rather than nursing or social-care. In short, hotels.<span style="mso-spacerun: yes;"> </span>They have looked at the demographics and seen
that there is a burgeoning demand for <a href="https://www.theguardian.com/money/2015/jul/20/old-age-retirement-communities-village-developments">retirement apartments</a> and care homes, but
may not appreciate the difference between them.<span style="mso-spacerun: yes;">
</span>We know about <i style="mso-bidi-font-style: normal;">accommodation</i>,
they think; we can do that.<span style="mso-spacerun: yes;"> </span>And if we
make it glossy and build in richer parts of the country, we can charge premium
rates.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">And yes, active and
affluent retirees in their sixties and seventies may well enjoy a cinema,
swimming pool, café bar, and the kind of cool minimalist décor they have grown
used to at home or in upmarket hotels and restaurants.<span style="mso-spacerun: yes;"> </span>These are lovely facilities, if money is no
object and you are fit and well.<span style="mso-spacerun: yes;"> </span>Even
so, I would argue that the qualities you seek for a short break in a luxury
hotel or time-share complex are not the same as your own home comforts.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">And if you are over
eighty, frail, confused, living with dementia or other degenerative disease,
and looking for a <i style="mso-bidi-font-style: normal;">home</i> with intensive
practical support, they are <b style="mso-bidi-font-weight: normal;">not</b> the
most important factors.<span style="mso-spacerun: yes;"> </span>What you need is
<b style="mso-bidi-font-weight: normal;">people</b>.<span style="mso-spacerun: yes;"> </span>This cannot be said enough.<span style="mso-spacerun: yes;"> </span>People can give care.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">Fancy
curtains can’t hold your hand when you’re dying.<o:p></o:p></b></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">The much-vaunted
“person-centred care”, touted on every website and brochure, needs two
essential ingredients: staff and time.<span style="mso-spacerun: yes;">
</span>Enough well-trained, well-paid, kind, empathetic staff; and enough time
for those staff to spend with their residents outside practical care tasks, to
engage with them as people, not room numbers.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">So it frustrates and
depresses me to see care home companies all hurtling sheep-like down the road
of spa hotel one-upmanship, at the expense of investment in the basics.<span style="mso-spacerun: yes;"> </span>And it breaks my heart that mum’s provider,
that once led the field in genuine person-centred care, now feels the need to
compete on these terms – offering a staff/resident ratio just a little bit
better than its competitors (but significantly worse than its own prior to 2015),
and achieving that “little bit better” by making stealthy cuts to service
elsewhere (catering, housekeeping, maintenance) and by keeping staff on minimum
wage.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">It’s well-known that the
<a href="https://www.gov.uk/government/publications/national-living-wage-and-national-minimum-wage-government-response-to-the-low-pay-commissions-autumn-2018-recommendations">National Living Wage</a> has placed greater <a href="https://www.theguardian.com/uk-news/2016/mar/29/national-living-wage-services-breaking-point-funding-crisis-elderly-disabled-people">financial strain on both care providers and funding bodies</a>.<span style="mso-spacerun: yes;"> </span>Good care isn’t
cheap, it never will be, and should not depend on the exploitation of
workers.<span style="mso-spacerun: yes;"> </span>But if there is a <a href="https://www.theguardian.com/business/2015/oct/31/care-homes-crisis-dwarf-steel-industry-problems-four-seasons-terra-firma">crisis in funding</a> and priorities have to be chosen, that’s a conversation providers
should be having <i style="mso-bidi-font-style: normal;">with </i>residents and
families, not a unilateral decision to be deployed by sleight of hand to
maintain profit.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh926gwq9G_wuxxm8zsAYpSqrfp2XUzCjQXKbbdBdz83EoIOJI1DI8RXygVnSpaqvk_hwlNH-8Joa4ly587Qzp8-XrJK2U__HaxbtIw26jWMYtNrloh-4vt4COuhmF-o08rFH_2HFxZwUw/s1600/Mum%2527s+90th+edit+4.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="509" data-original-width="649" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh926gwq9G_wuxxm8zsAYpSqrfp2XUzCjQXKbbdBdz83EoIOJI1DI8RXygVnSpaqvk_hwlNH-8Joa4ly587Qzp8-XrJK2U__HaxbtIw26jWMYtNrloh-4vt4COuhmF-o08rFH_2HFxZwUw/s320/Mum%2527s+90th+edit+4.jpg" width="320" /></span></a></div>
<span style="font-family: verdana;">In my view, there’s a
moral imperative for transparency; but if commercial arguments are all that
count, I would point out that at the time of mum’s crisis in December 2015, we
had personally paid over £200,000 to that company.<span style="mso-spacerun: yes;"> </span>That represents the sale of our family home,
our collective lifetime assets.<span style="mso-spacerun: yes;"> </span>Surely
that buys us some rights of consultation?<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">(The annual residents and
families survey had quietly been dropped around the time of the corporate
changes, and communications from the company were minimal; the one meeting with
the new manager was held on a weekday afternoon when most relatives could not
attend.)<o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">While there was apparently
scant budget for daily running costs, money was available in relative abundance
for cosmetic improvements and gimmicks. Focusing on kerb appeal to attract new
business in this way, to the <a href="https://www.theguardian.com/society/2014/jun/09/financial-strategy-southern-cross-care-homes-blamed-deaths-old-people">detriment of basic daily care and humanity</a>, is a
pernicious economy.<span style="mso-spacerun: yes;"> </span>I suspect a cynical calculation
that, as the average stay in care is two-and-a-half years, some providers concentrate on
point of sale, rather than providing an ongoing standard of service, because their “customers” have a natural shelf life and won’t be around to complain.
Please prove me wrong.<o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">So what happened to my
complaint?<span style="mso-spacerun: yes;"> </span>(For details, see previous
posts, <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">Problems</a>, and <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">Crisis</a>.) After many months of extensive correspondence,
meetings, and stress that escalated the case to Divisional Manager level (three
stages up; a saga in itself), at one point it appeared to be resolved to relative
satisfaction, but after another change of senior management, the main issues persisted*.<span style="mso-spacerun: yes;"> </span>Early on, I had accepted
that the <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">hospital admission</a> was necessary in the circumstances, and that night
staff, faced with a life-threatening emergency, acted in good faith, to the
best of their ability. I had no complaint against them.<o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">My main concern was to
address the issue of <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">staffing levels</a> on mum’s unit (which had fallen 40%
between July and December 2015, from 1:3 to 1:5/6), a general <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">fall in service provision</a> throughout the home, and the circumstances that led to mum’s <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">sudden deterioration</a> in the latter half of 2015.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimSdn_OOoLASnG_XnT560t_99nePbY2eQekchzKIBbaqANF-mm18Gbvtv6DWp_r4de7hoAmlKfdmLp34ZjiBqRHH2717EzssE9-BdMOHJOhsu7fBmetCq5SRDp0ufba9DAoKpqY_9Nyck/s1600/Badgeworth+fete+2016.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="787" data-original-width="1024" height="245" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimSdn_OOoLASnG_XnT560t_99nePbY2eQekchzKIBbaqANF-mm18Gbvtv6DWp_r4de7hoAmlKfdmLp34ZjiBqRHH2717EzssE9-BdMOHJOhsu7fBmetCq5SRDp0ufba9DAoKpqY_9Nyck/s320/Badgeworth+fete+2016.jpg" width="320" /></span></a></div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">With improved monitoring
in 2016, she rallied from this crisis, and by summer had improved enough to be
able to sit out in the garden on some days.<span style="mso-spacerun: yes;"> </span></span><span face=""verdana" , sans-serif">By that summer of 2016, there was a staff/resident ratio of 1:4/5 in daytime – although at times this slipped back down to 1:6 - but there were no plans to
restore the original ratio of 1:3 or the proportion of nursing cover within
that, which remained half that of pre-2015.</span><span face=""verdana" , sans-serif">
</span><span face=""verdana" , sans-serif"> </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">(Staffing ratios overall need to be higher in dementia nursing units than in purely residential care, because
residents’ physical dependency becomes intense, with help needed for eating, drinking, continence, and two care-workers required to lift a person and sometimes to
manage distressed behaviour.)<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">The squash dispenser was restored (but with cheap and very diluted squash, not fresh juice); whiteboards in both lounges and some of the
<a href="http://dementia.stir.ac.uk/design/virtual-environments/virtual-care-home">dementia-friendly design features</a> were reinstated, but application of these was patchy. </span><span face=""verdana" , sans-serif">The atmosphere on the new wing became more homely; but although decorations on the
old wing were finally completed, that lounge remained less used and less
welcoming in character.</span><br />
<span face=""verdana" , sans-serif"><br /></span></span><span style="font-family: verdana;"><span face=""verdana" , sans-serif">The residents and families
survey resumed in October 2016, with a new staff survey supposedly to follow.</span><span face=""verdana" , sans-serif"> One of the nursing stations was allocated </span><span face=""verdana" , sans-serif">a computer and a unit email address, but the latter still did not allow care staff and families to communicate directly, only via the deputy manager or receptionist as before – the company reneged on a short-lived commitment to provide direct access.</span><span face=""verdana" , sans-serif"> </span></span></div>
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<span style="font-family: verdana;"><br /></span></div>
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<div class="separator" style="clear: both; text-align: center;">
</div>
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</div>
<span style="font-family: verdana;">I lobbied hard on all
these issues, but of course it’s difficult to say if the few gains were a direct result of my complaint.<span style="mso-spacerun: yes;"> </span>One thing I did count as a significant
achievement was a new protocol for emergency transfers of residents to hospital,
which the home introduced in April 2016. <o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
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<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">This aimed to ensure that
no resident is ever <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">sent to hospital unaccompanied in emergency</a> (as mum was in December 2015), through a rota
of off-duty staff to be summoned as cover, and sets out a checklist of
personal effects, contacts, and documents to support any such transfer. </span>I'd be surprised if this protocol has survived in the face of further cuts and staff shortages... </span><br />
</span><div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">(I canvassed other major care providers for their policy on emergency admissions to hospital; shockingly <b>none </b>was willing to guarantee that residents would always be escorted - because that requires a degree of slack in their staffing levels above <b>bare minimum cover, the standard for their budgets.</b> Ask yourself, would it be acceptable for a terminally ill child to be sent alone to ED? No? Then why do providers - charging up to £2,000 per week - believe it to be so for a frail elderly person with severe cognitive impairment or for an adult with learning disability? You won't find that in any glossy sales brochure.)<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">One key question remains
unanswered: were the actions of mum’s care provider (in downgrading its service) motivated by need or greed?<span style="mso-spacerun: yes;"> </span>Did
they make cuts simply to survive, or rather to maximise profit?<span style="mso-spacerun: yes;"> </span>The latter being negotiable, the former, not.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_HNuFbzGFrIXG8zNPBUlinGNhjUCLA2s5Q36hRhLXey40NNWEmMWTE7LgW2NjsfWfPQXBuPhLxv9jv0ugufik8rC31d9czvW-quituDK1L9sHQzEcAFW9OVzNMdpP_4Py8Lo925CC4xQ/s1600/Mother%2527s+Day+2017+crop.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="718" data-original-width="777" height="295" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_HNuFbzGFrIXG8zNPBUlinGNhjUCLA2s5Q36hRhLXey40NNWEmMWTE7LgW2NjsfWfPQXBuPhLxv9jv0ugufik8rC31d9czvW-quituDK1L9sHQzEcAFW9OVzNMdpP_4Py8Lo925CC4xQ/s320/Mother%2527s+Day+2017+crop.jpg" width="320" /></span></a></div>
<span style="font-family: verdana;">The spectre looming over all of this is that of care companies, such as <a href="https://www.theguardian.com/business/2011/jun/01/rise-and-fall-of-southern-cross">Southern Cross</a>, suddenly going bust.<span style="mso-spacerun: yes;">
</span>The regulator, the <a href="http://www.cqc.org.uk/">Care Quality Commission</a>, now has a scheme called
<a href="http://www.cqc.org.uk/content/market-oversight-adult-social-care">Market Oversight</a> that monitors the financial viability of key providers and
aims to warn local authorities if services they purchase are vulnerable to
collapse.<span style="mso-spacerun: yes;"> </span>As far as I know, there is no
equivalent protection for self-funders, who remain entirely reliant on providers
themselves (and their own independent research) for information.<o:p></o:p></span></div>
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<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">The financial background
of providers is <a href="https://www.opendemocracy.net/uk/andrew-dolan/britains-care-homes-have-been-turned-into-complex-financial-instruments-how-could-this-possibly-go-wrong">notoriously labyrinthine</a> and hard to interpret for the layman.
I would like to see residents and families entitled to receive the same annual
reports as shareholders – we are indeed the principal stakeholders in that
business.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Throughout the UK, there
is a known <a href="http://www.bbc.co.uk/news/health-36729108">shortage of nurses</a> in general, let alone specialist dementia
nurses (and <a href="https://www.rcn.org.uk/professional-development/publications/pdf-006981">Brexit threatens to exacerbate this situation</a>).<span style="mso-spacerun: yes;"> </span>The appointment and retention of
suitably qualified staff is undoubtedly a challenge for providers in a competitive
market, and the Divisional Manager of mum’s company argued that they offer structured training, promotion, and bonuses to provide opportunities for career
progression; but while these may look attractive on paper, from my observations I would suggest that staff retention is less
about long-term corporate incentives (that take staff away from hands-on care) than decent daily working conditions:<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Listen to the staff, value
their opinions and expertise, and act on it; give them proper meal breaks and meals; pay them a good basic rate for very hard work (13-hour shifts in some
cases); subsidise child-care or at least try to accommodate staff with fixed rosters; treat them with as much kindness and respect as is due to residents
and families. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">Above all, value the bond
between residents and care-workers who know them well; see it as an asset, not a threat.</span><span face=""verdana" , sans-serif"> </span><span face=""verdana" , sans-serif">(Don’t, for instance, deliberately roster staff
away from their accustomed units to render them interchangeable for corporate
efficiencies; “personal” care should be just that.)</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span>Finally, whatever the
financial challenges, never forget that residents are not inanimate “units of business”, but people - whose lives depend on you.<span style="mso-spacerun: yes;"> </span>If a genuine desire to provide <b>care</b> is not
your prime motivation, look elsewhere to make your profits.<span style="mso-spacerun: yes;"> </span>A home is not a hotel. </span><span>This is what it's about: </span></span><br />
<span face=""verdana" , sans-serif"><span><br /></span></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrCCuVmKpoQfgc62zL8GT5U5AVyB1B4vkpOTv3NDrvDM4uIdCtEgaNhrDrcNxgGjVPLdIQpJEcf9kPGHdfmeBIfiVPD2V_PahCXpwvixUWICFg88sZ6SFErFiyusGukiSLHYiCZf-LgD0/s1600/Mum%2527s+Room+Xmas+2018+crop.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="889" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrCCuVmKpoQfgc62zL8GT5U5AVyB1B4vkpOTv3NDrvDM4uIdCtEgaNhrDrcNxgGjVPLdIQpJEcf9kPGHdfmeBIfiVPD2V_PahCXpwvixUWICFg88sZ6SFErFiyusGukiSLHYiCZf-LgD0/s320/Mum%2527s+Room+Xmas+2018+crop.jpg" width="276" /></span></a></div>
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<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span>
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">*Updated @November 2016, August 2017, May 2018, April 2019, April 2020 (see postscript below).</span></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span></span>
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">NB: During 2017 and 2018, this situation escalated further to crisis for the home as a whole (not just my complaint), with it being rated "Requires Improvement" in all categories by the CQC in 2018, where it had formerly been "Good" or above. In May 2018, regretfully I felt I had to move mum out of this once excellent home; it was a huge decision, but thankfully she settled well into her new home in the same area, due in no small part to some familiar staff who had preceded her there. Continuity of care is paramount for those with dementia and I was grateful that she had that once more. However, I am also aware of our good fortune as self-funders in being able to make this move; others were not so lucky, and many of the issues described here persisted in the original home for some time after she left. </span></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span></span>
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">Update: as per summer 2019, I was pleased to find that the original home had received a good rating once more, but in her state of advanced age and frailty I didn't feel mum had time in 2018 to wait for this improvement. Crucially, I now know no provider is immune from them; they are part of the overall landscape of the sector, due to funding models that remain contentious.</span></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span></span>
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">Update: In January 2020, my <a href="http://dementiajustaintsexy.blogspot.com/2020/01/nos-dawch-cariad.html">mum died</a>. I'm thankful it was peaceful, before the COVID19 outbreak, and I was able to spend the whole time with her in the weeks preceding her eventual demise, holding her hand until the last; eternally grateful for the wonderful care she received in her final home and to kind and dedicated staff in both homes who supported us throughout her more than eight years in care. </span></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span></span>
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">Sadly, I hear that the original home, having received a good CQC report in 2019, "promoted" the new manager to an executive post overseeing a group of regional homes (a familiar pattern), leaving that home once more under temporary leadership - and once more spending lavish sums on cosmetic refurbishments, when extensive redecorations had been completed barely a year earlier, at a time when staffing across the whole sector continues to be the top operational issue. Desperately disappointing, the more so when care homes are suffering so much from government funding neglect in the face of COVID19.</span></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span></span></span>
<span face=""verdana" , sans-serif">Meanwhile, a </span><a href="https://chpi.org.uk/wp-content/uploads/2016/11/CHPI-SocialCare-Oct16-Proof01a.pdf">report into privatised adult social care</a><span face=""verdana" , sans-serif"> by Professor Bob Hudson indicates that the detrimental changes I have witnessed in mum's home are common symptoms of the drive among providers to maximise profit by cutting down on their major expense and main budget variable: staff. (See in particular points 12 & 13 on page 9 of </span><a href="https://chpi.org.uk/wp-content/uploads/2016/11/CHPI-SocialCare-Oct16-Proof01a.pdf">the report</a><span face=""verdana" , sans-serif">...)</span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">[NB: This post was written in 2016, pre-COVID-19. Coronavirus has placed further strains on the care sector, and restrictions on visiting care homes may now apply; please check with the provider.]</span> </span></div><div class="MsoNormal" style="text-align: justify;"><span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span><span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-1.html">Part 1: a Good Home</a></span></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">Part 2: Problems</a></span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">Part 3: Crisis</a></span></span><br />
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com6tag:blogger.com,1999:blog-3254078482490768003.post-2850366320517332302016-08-24T17:51:00.001+01:002020-10-20T10:31:03.661+01:00Five-Star Hotel, Five-Star Care? Part 3: Crisis<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">Mum had been in care for
four years, and for the vast majority of that time I had been <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-1.html">more than happy with the home</a>.<span style="mso-spacerun: yes;"> </span>I knew how fortunate we
were to be able to afford good care in pleasant surroundings.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">In summer 2015, however, <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">a number of changes began</a> that altered the character of the place and made me
uneasy.<span style="mso-spacerun: yes;"> </span>Chiefly, a new wing had opened
in mum’s dementia nursing unit, which doubled capacity, without double the
staff.<span style="mso-spacerun: yes;"> </span>Resources overall appeared to be
stretched more thinly, while an extensive programme of cosmetic refurbishments
continued.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">Throughout the autumn I
was increasingly concerned that mum and other bed-bound residents in the old
wing were being left unattended for long periods of the day, while staff were
fully occupied in care tasks or supervising the new lounge at the other end of
the unit.<span style="mso-spacerun: yes;"> </span>The old lounge outside mum’s
room and the nursing station next door were now empty.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif"><span style="font-family: "verdana";">I usually visit each
Saturday, but one Friday in December, with bad weather forecast the next day, I
decided to postpone my weekly visit until the following Wednesday, to attend
the Christmas party on the unit. </span><span style="font-family: "verdana";">I phoned to check that all
was well meanwhile - and was taken aback to learn that mum had been moved into
a new room a couple of days earlier.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">I
had been there the previous Saturday and am always available by phone and email,
but no-one had spoken to me about any plans to move her or otherwise consulted
me.</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">Given mum’s extreme
frailty, I had misgivings about such a hasty and inexplicably furtive move, but
reasoned that perhaps it was the manager’s way of addressing my concerns about
her spending too much time alone; the new room, I was told, was next door to
the nursing station in the new wing.<span style="mso-spacerun: yes;">
</span>Having been assured that she was OK and “beginning to settle”, I decided
to give benefit of the doubt until I had seen the room on Wednesday.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">With hindsight, I should
have heeded my instinct.<span style="mso-spacerun: yes;"> </span>Because at
7.00am on that Wednesday, I received a call from night staff – paramedics were
in attendance, and were about to take mum to hospital.<o:p></o:p></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">This was a complete shock,
as there had been no prior suggestion of acute illness.<span style="mso-spacerun: yes;"> </span>She is mildly asthmatic and prone to
low-level chest infections, but medication was routinely in place to treat
these, there had been nothing untoward when I had last seen her, and no concern
had since been expressed to me by staff; furthermore, I had signed an <a href="http://www.ncpc.org.uk/sites/default/files/AdvanceCarePlanning.pdf">advance care plan</a> which stated that mum should not be taken out of the home, except in
life-threatening circumstances that could not otherwise be managed – and never
unaccompanied. </span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">(Her dementia symptoms were such that she had not been out of
the home since 2012, or even out of her old room <i style="mso-bidi-font-style: normal;">in</i> the home for over a year; changes of environment caused her too
much distress.)<span style="mso-spacerun: yes;"> </span>Was there anyone to go
with her?<span style="mso-spacerun: yes;"> </span>No. It was the last hour of
night shift and no staff could leave the premises.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">I spoke to a paramedic,
who insisted that mum had “severe breathing difficulties” and unless they took
her immediately, she could die. It was their job to keep her alive; the advance
care plan was irrelevant. (I have since learned that there is a difference between an <a href="http://www.ncpc.org.uk/sites/default/files/AdvanceCarePlanning.pdf">advance care plan</a> and <a href="http://www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx">advance decision</a>. The former is merely an expression of wishes agreed between a person - or their representative, if they have already lost mental capacity - and a private care provider; the latter has legal force, but can only be drawn up by the patient themselves while still having capacity, and pertains to NHS services. The advance care plan can be overridden by doctors or paramedics in what they consider to be the patient's "best interest" in an emergency, and has no force outside the premises of the private care provider, ie. in an ambulance or hospital.)<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">All I could do was get
straight into the car and race the 100 miles in morning rush-hour traffic to join her. (What
if that hadn’t been possible?)<span style="mso-spacerun: yes;"> </span>I knew it
would take me up to three hours to get there – in which time my beloved mum, a
vulnerable 89-year-old with severe cognitive disability, could die alone and
terrified in the back of an ambulance or in a strange Emergency Department, with
no-one who knew her to comfort her.<span style="mso-spacerun: yes;"> </span>This
was not meant to happen.<span style="mso-spacerun: yes;"> </span>Everything I
had done in the preceding decade or more to care for her was aimed at avoiding
such an undignified and desolate end.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">En route, I spoke to the
day nurse, who was trying to find someone to go ahead of me to the
hospital, as I had begged, but reiterated that there was no-one available from
shift.<span style="mso-spacerun: yes;"> </span>They simply did not have any
slack in the system. (Mum’s local friends are now also very elderly and could
not attend such a distressing emergency.)<span style="mso-spacerun: yes;">
</span>At my request, the nurse called a particular care-worker who knew mum
well, and she agreed to go – on her day off, using her bus pass.<span style="mso-spacerun: yes;"> </span>She was there when I arrived, a kindness for
which I’m eternally grateful.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">I’ll discuss the hospital
experience in another post.<span style="mso-spacerun: yes;"> </span>Suffice it
to say, by the time I got there (and indeed before the care-worker had arrived),
mum had been treated with IV fluids and antibiotics.<span style="mso-spacerun: yes;"> </span>No medical records had been sent with her, so
doctors had no drug history; they only obtained this by phone after I
arrived.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKrh76gIr8m1tiWdQj0oc2rEV_I6iufJzuB3WgQZETKcUXjzMCCgYOTJb0_QcNHf8E9W2QPf4YF4ZGRc517lFWqaLzdgT1R_lAA-dtIzpu1tbq32_4LhXdj-1epaeYca2RAnRV34vZ29g/s1600/Suction+machine+Feb+2016.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span face=""verdana" , sans-serif" style="font-family: verdana;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKrh76gIr8m1tiWdQj0oc2rEV_I6iufJzuB3WgQZETKcUXjzMCCgYOTJb0_QcNHf8E9W2QPf4YF4ZGRc517lFWqaLzdgT1R_lAA-dtIzpu1tbq32_4LhXdj-1epaeYca2RAnRV34vZ29g/s320/Suction+machine+Feb+2016.jpg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">The diagnosis was
aspiration pneumonia - a prime cause of death in people with dementia.<span style="mso-spacerun: yes;"> </span>This occurs when a person inhales a piece of
food or fluid and develops an infection on the lung.<span style="mso-spacerun: yes;"> </span>Symptoms can look like choking (and choking
may have caused the inhalation), but the mechanism is different; suction
equipment, available at the home for choking emergencies, can only remove an
obstruction in the throat, not the lung.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">People with dementia often
develop problems with chewing, <a href="http://www.nhs.uk/conditions/Dysphagia/Pages/definition.aspx">swallowing</a>, and inhalation – three subtly
different processes in the mouth – due to both diminished motor skills and
cognitive malfunction. <span style="mso-spacerun: yes;"> <a href="https://www.alzheimers.org.uk/info/20029/daily_living/10/eating_and_drinking">Supervision with meals</a></span> is therefore vitally important in the latter stages of the disease. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">I had seen mum only 10
days earlier, but I was shocked at her changed appearance.<span style="mso-spacerun: yes;"> </span>Her weight had already been very low (about 5
stone), but in the interim her face had become skull-like and one of her eyes
was gummed shut with infection.<span style="mso-spacerun: yes;"> </span>She had
evidently lost weight in that week.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">As far as medics were
concerned, her treatment was over.<span style="mso-spacerun: yes;"> </span>She
was admitted overnight for observation, mainly in order to arrange transport
back to the home, and to ensure that she was strong enough to withstand it.<span style="mso-spacerun: yes;"> </span>A social worker from the Older Adult Liaison
team intimated that I had to seize the right moment, as elderly people
transferred in such circumstances often do not survive the trauma: where would
I rather she died?<span style="mso-spacerun: yes;"> </span>Here in hospital, or
back in the home?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">While mum was being
prepared for discharge the next day, I went to the home to fetch a clean
nightie (she had not been sent with any personal effects or change of
clothes).<span style="mso-spacerun: yes;"> </span>This was my first opportunity
to see the new room – and again I was shocked at what I found.<span style="mso-spacerun: yes;"> </span>Yes, I was pleased that it was next to the manned
nursing station and close to the new lounge; but it was a smaller room with
less storage space than her old room – and it had been left in a terrible state
of disarray.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">This was not a result of
the paramedic attendance, but of the room move a week earlier.<span style="mso-spacerun: yes;"> </span>Mum’s belongings had been dumped willy-nilly
on any available surface, including the bathroom; a number of things had gone
missing (some never to be recovered, with no explanation).<span style="mso-spacerun: yes;"> </span>Everything was covered in dust.<span style="mso-spacerun: yes;"> </span>The wardrobe was more than half full of other
people’s clothes.<span style="mso-spacerun: yes;"> </span>The toilet flush was
broken; and in the bathroom there was no paper towel dispenser, but a <a href="https://www.caring.com/articles/what-to-do-when-mirrors-upset-someone-with-dementia">mirror</a> –
a real no-no in a dementia unit.<span style="mso-spacerun: yes;"> </span>It all
spoke of haste and lack of time even to make good after the event.<span style="mso-spacerun: yes;"> </span>What was so urgent that she had had to be
moved in this insensitive way, without my knowledge?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana;">I had experienced possibly
the worst 36 hours of my life, desperate to ensure that my dear mum, whom I had
sought to protect for so many years, would not die alone in sordid
conditions.<span style="mso-spacerun: yes;"> </span>Now I stood in this room –
for which we were paying over £1,200 per week – and struggled to understand how
all this could have happened in a previously exemplary home, for which I had
written glowing reviews and even <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/a-thankless-task.html">editorial in praise of the wonderful staff</a>.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">Over the next four months,
as I pursued a complaint against the provider, I <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">began to find some answers</a>…</span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">Part 4: Conclusion</a></span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-1.html">Part 1: a Good Home</a></span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">Part 2: Problems</a></span><br />
<span face=""verdana" , sans-serif"><br /></span></span>
<span face=""verdana" , sans-serif"><br /></span></div>
Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com1tag:blogger.com,1999:blog-3254078482490768003.post-80043413942563398202016-08-24T17:44:00.001+01:002020-10-20T10:30:23.752+01:00Five-Star Hotel, Five-Star Care? Part 2: Problems<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">2015: Mum had been in residential
care since 2011, becoming mostly bed-bound in the last eighteen months. We had
progressed further along the dementia journey, which brought new emotional
challenges at every stage; but during those four years, I <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-1.html">never had cause for concern</a> about the home or its staff, in whom I had complete faith.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">That summer brought
insidious change that would rock my former certainties. First came news in June
that the long-standing manager would be leaving at the end of August.<span style="mso-spacerun: yes;"> </span>A highly experienced nurse, she had
established the home in the 1990s under the original person-centred ethos of
the operating provider – pioneering at the time – and maintained those
exemplary standards for the next twenty years of her tenure.<span style="mso-spacerun: yes;"> </span>I had hoped she would remain at the helm
throughout my mother’s time there, but knew that impending retirement might
make that impossible; I was therefore disappointed, but not surprised, by her
announced departure.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">What did surprise me,
however, was that she was not retiring, but leaving to take up a post at a new
home, rather than spend her final years in situ; and that she suddenly
disappeared in mid July, more than a month before her notice period. There was
no advance warning from the provider, only a somewhat perfunctory letter
introducing her successor after the event.<span style="mso-spacerun: yes;">
</span>I did not even receive this letter myself until I enquired some weeks
later, mystified as to what had happened. The early departure was clearly
unplanned, as it left the home without a manager for two weeks.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Around the same time, one
of the two nurses in charge of mum’s unit also left, as did the
housekeeper.<span style="mso-spacerun: yes;"> </span>In the ensuing weeks and
months, there followed a stream of other departures: the Deputy Manager (an award-winning
nurse of long service); several other nurses from both day and night shifts; a
number of care assistants; the chef; the long-standing receptionist and her
replacement (who lasted only three months). <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Residents and families
received no forewarning or explanation, which struck me as very odd, given that
I knew these staff to be decent, caring, and considerate of the frail elderly
people who depended on them and of whom they had been fond.<span style="mso-spacerun: yes;"> </span>I later learned that the company had barred
them from telling anyone (residents, families, or colleagues) more than
twenty-four hours before their departure. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">While such practices may
be common in finance, law, retail, and the media, one might (perhaps naively)
expect care to operate under different values – because residents are not
“customers” who can exercise market choice on a daily basis, but extremely
vulnerable people who have sold their own homes and given their life savings to
fund a place in which to live out their final days, whose well-being hinges on
trust and continuity, and for whom any upheaval poses a risk.<span style="mso-spacerun: yes;"> </span>The contract between care provider and
resident is more than financial, but this company evidently deemed its own
commercial sensitivities more important than the security of its residents; and
of course one may ask why so many good staff of long-standing and expert
experience should suddenly wish to seek employment elsewhere…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">The physical environment
was also thrown into flux.<span style="mso-spacerun: yes;"> </span>Refurbishments
had indeed been due – but proved far more extensive than simply refreshing worn
out furniture, curtains, carpet, and paintwork. Public areas downstairs (seldom
used by residents or families) became palatial, with luxurious fabrics,
expensive contemporary furniture and lighting.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Upstairs, meanwhile, the
dementia nursing unit was suddenly stripped of all familiar features and left
in a state of bareness for several months thereafter, because there was no
budget to hire outside contractors to complete the job – the two maintenance
staff were expected to add these major refurbishments, including
kitchen-fitting, to their routine duties (which also suffered as a
result).<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">I was dismayed to find
that previously exemplary features of <a href="http://dementia.stir.ac.uk/design">dementia-friendly design</a> – brightly
coloured doors, picture signage, contrast handrails, rummage materials and
orientation aids – had been removed without consultation and replaced with
cold, minimalist, all-white décor.<span style="mso-spacerun: yes;"> The whiteboard in the lounge, that signalled which staff were on duty (and how many) was taken down, as were residents' names from their room doors. The effect was depersonalising for both parties. It seemed that the management was keen to erase anything that made this look like a care home.</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhA1mmhgcnYH0hJkz5A6zlDQjD-P91vhWiJ67hggaEe-NUd8oue2lKHD_N67hlmFh3bKETbWu9rEKq5iLHC-jM6hzOu3iuBYWpomp_mDk3K_3vKjfumcfiDD00l_d5RTIQeTS4ck0Sq14/s1600/Badgeworth+cat+under+table+edit.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><span face="Verdana, sans-serif" style="font-family: verdana;"><img border="0" height="246" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhA1mmhgcnYH0hJkz5A6zlDQjD-P91vhWiJ67hggaEe-NUd8oue2lKHD_N67hlmFh3bKETbWu9rEKq5iLHC-jM6hzOu3iuBYWpomp_mDk3K_3vKjfumcfiDD00l_d5RTIQeTS4ck0Sq14/s320/Badgeworth+cat+under+table+edit.jpg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Pets too were quietly
phased out; the soft toys and live plants that had created a homely atmosphere
in a small conservatory area (and initially sold the home to me) were disposed
of with no explanation.<span style="mso-spacerun: yes;"> </span>Even relatively
new features, such as two charming seaside corners, were summarily ripped out
to create a uniform look – that of a spa hotel. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Worst of all, mum’s unit
was notably understaffed.<span style="mso-spacerun: yes;"> </span>In 2014, when
she had become frailer and mostly bed-bound, mum had been moved into a room next door to the nursing station and directly abutting the lounge,
so that she could easily be monitored and have company close at hand.<span style="mso-spacerun: yes;"> </span>But in the autumn of 2015 I was frequently
disturbed to find both the lounge and the nursing station empty.<span style="mso-spacerun: yes;"> </span>Mum, and several other bed-bound residents,
was effectively alone in her bed.<span style="mso-spacerun: yes;"> </span>Few
staff were visible at all on the wing, and if I did glimpse them, they would be
rushing down corridors en route to a task, with no time to talk.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">I had vaguely known that a
formerly disused corridor at a right angle to mum’s unit had been refurbished
to provide more accommodation, but I never had occasion to go there; it had
previously been behind a key-pad door. Only belatedly did I learn that this was
in fact a whole new wing, with a separate lounge, that doubled capacity of the
nursing dementia unit – without a commensurate increase in staff.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">While a few new care
assistants had been engaged, others had left or been seconded to other units,
and, crucially, no second nurse per shift had been hired for the extended wing
that now catered for up to twenty-four residents with advanced dementia,
instead of the previous twelve.<span style="mso-spacerun: yes;"> </span>A
daytime staff/resident ratio of 1:3 (including a nurse) had by stealth become
1:5 (with the nursing element diluted by half), and 1:7 at night, instead of 1:6.<span style="mso-spacerun: yes;">
</span>Furthermore, fewer of those staff knew the residents in depth (or indeed
at all); by Christmas 2015, only one day-shift nurse on that wing had worked at
the home for more than three months, and there was a marked increase in casual
agency cover.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">When the wing previously had
only 12 residents and four day-staff, it felt like a family unit; staff knew
everyone’s personal foibles.<span style="mso-spacerun: yes;"> </span>Residents
had a key worker, who would have primary responsibility for their wardrobe and
personal care.<span style="mso-spacerun: yes;"> </span>Even I, as a regular
visitor, could tell you what style of dress each person wore and match up any
stray laundry items; but in the months leading up to Christmas, racks of
unidentified clothes began to appear in corridors, inviting staff to try and
pick them out.<span style="mso-spacerun: yes;"> </span>The laundry itself went
badly awry, with much of mum’s nightwear being shrunk to child-size.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">The new manager had been
in post since the beginning of August, but her introductory meeting with
families was not held until mid October – on a weekday afternoon, when most
working relatives would not have been able to attend.<span style="mso-spacerun: yes;"> </span>By then, I already had serious concerns, so
made a special effort to be there (involving a 200-mile round trip ahead of my
usual weekend visit to mum).<span style="mso-spacerun: yes;"> </span>I raised
the issue of staffing levels on the dementia nursing unit and the desolate
atmosphere on the original wing.<span style="mso-spacerun: yes;"> </span>The new
lounge at the other end of the unit was much more cheerful, and this is where
all the mobile residents and most of the staff spent the day.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">Of course this made sense,
given that the old lounge and kitchen were in a continued state of disarray,
and one nurse could not be in two places at the same time (she was now based in
the second nursing station by the new lounge). If you have few staff to monitor
an increased number of residents, you need to corral the majority in one place,
in order to keep them in sight together.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">But what of the bed-bound
people in the old wing?<span style="mso-spacerun: yes;"> </span>Staff did their
best to ensure their basic needs were met, making the required scheduled checks
and bringing meals across from the kitchen at the other end of the unit.<span style="mso-spacerun: yes;"> </span>This was, however, a long walk away; and in
between such task-based attendances, there was no ongoing company or activity
on the wing.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">The manager said this was
temporary, due to the refurbishments, and both lounges and nursing stations
would be manned in due course.<span style="mso-spacerun: yes;"> </span>No action
was taken and the situation persisted into the New Year.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">I later discovered that
she had been powerless to address the staff shortage, as the budget for daily
running costs did not allow for any more personnel, and funds could not be
diverted from the ongoing programme of lavish redecorations - that money was
ring-fenced at source.<span style="mso-spacerun: yes;"> </span>Thus it seemed
the company had prioritised kerb appeal to “brand new customers” over practical
care for existing residents.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">As autumn turned to
winter, my sense of unease grew.<span style="mso-spacerun: yes;"> </span>Mum’s
right hand had become severely contracted, meaning that she couldn’t use it to
grip; she had taken to eating tiny portions of food with only her left hand and
struggled to manage cutlery and china (ideally she needed a light, plastic,
bright-coloured beaker, but these were scarce, while heavy new white china
double-handled mugs were in plentiful supply).<span style="mso-spacerun: yes;">
</span>If she did not have supervision, food and drink were more liable to
spillage than consumption.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiwwmLDNAR7crLpGGeaHAnvmFtTa0YxQmkYAtGBiM0aZ82lnDRK-sSw_5Y6MqO98Pow6-ZwzuxIVL1o_TfGejpJ06qpEj15x-0wkh1dy0uLShvFR5lifKmA62k9yrD3DRBycNI4C56p7g/s1600/Badgeworth+drinks+Feb+2016.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span face="Verdana, sans-serif" style="font-family: verdana;"><img border="0" height="274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiwwmLDNAR7crLpGGeaHAnvmFtTa0YxQmkYAtGBiM0aZ82lnDRK-sSw_5Y6MqO98Pow6-ZwzuxIVL1o_TfGejpJ06qpEj15x-0wkh1dy0uLShvFR5lifKmA62k9yrD3DRBycNI4C56p7g/s320/Badgeworth+drinks+Feb+2016.jpg" width="320" /></span></a></div>
<span face="Verdana, sans-serif" style="font-family: verdana;">One November afternoon, I
had come to meet the <a href="http://www.nhs.uk/conditions/social-care-and-support-guide/pages/nhs-continuing-care.aspx">NHS Continuing Healthcare</a> Assessor to go through mum’s
funding review (she had been turned down for CHC the previous year and
continued to be self-funding, but I thought her needs had increased).<span style="mso-spacerun: yes;"> </span>While we were in the empty old nursing
station, looking at paperwork, a cup of coffee had been brought to mum in bed
next door.<span style="mso-spacerun: yes;"> </span>When we went in to see her,
we found that she had spilled it all down herself and the bedclothes, and had
been sitting for about an hour in her wet nightie.<span style="mso-spacerun: yes;"> </span>There were no staff about.<span style="mso-spacerun: yes;"> </span>If we had not been there, it might have been
another couple of hours before she was changed.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">I also noticed that the
cold drink dispensers in both kitchens on mum’s unit were frequently empty or
disconnected.<span style="mso-spacerun: yes;"> </span>These had previously
offered a continuous supply of squash, day and night, which passing staff could
routinely take to residents every time they were monitored.<span style="mso-spacerun: yes;"> </span>Now drinks appeared to be prepared “on
demand” from bottled mix – but people with dementia are often unable to ask for
what they need.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;">When I raised this, again
I was told it was temporary, while the refurb was in progress; but as time went
on with no change, I concluded that it was more likely a catering economy.<span style="mso-spacerun: yes;"> </span>The delicious cream cakes, trifle, meringues,
and gateaux that had regularly appeared at mealtimes to tempt fragile appetites
were now replaced with a limited choice of cheaper plain cake and bulk-buy
biscuits.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span face="Verdana, sans-serif" style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face="Verdana, sans-serif">In the weeks up to
Christmas, I continued to flag my concerns to staff, but heard nothing more
from the manager.<span style="mso-spacerun: yes;"> </span>There was no follow-up
from the meeting.<span style="mso-spacerun: yes;"> </span>And in December,
<a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">concern suddenly turned into crisis</a>…<o:p></o:p></span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">Part 3: Crisis</a></span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">Part 4: Conclusion</a></span><br />
<span face="Verdana, sans-serif"><br /></span>
<span face="Verdana, sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-1.html">Part 1: a Good Home</a></span></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com2tag:blogger.com,1999:blog-3254078482490768003.post-52953128830466653942016-08-24T17:36:00.002+01:002020-10-20T10:34:21.704+01:00Five-Star Hotel, Five-Star Care? Part 1: a Good Home<div class="MsoNormal" style="text-align: justify;"><span style="font-family: verdana;">[NB: This post was written in 2016, pre-COVID-19. Restrictions on visiting care homes may now apply; please check with the provider.]</span></div><div class="MsoNormal" style="text-align: justify;"><span style="font-family: verdana;"><br /></span></div><div class="MsoNormal" style="text-align: justify;"><span style="font-family: verdana;">Back in 2011, when I
faced an <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">emergency search for a care home</a> for my mum, choice was limited.<span style="mso-spacerun: yes;"> </span>There were simply not enough homes.<span style="mso-spacerun: yes;"> </span>Since then the market has rapidly expanded,
and today we see an explosion of predominantly upmarket “luxury” developments
boasting lavish facilities and “five-star dining”. The cost of a room in such
an establishment and the inequalities of funding provision is another story; but, assuming you (or a funding body) can
afford it, does five-star decor mean five-star care?<span style="mso-spacerun: yes;"> </span>Not necessarily…<o:p></o:p></span></div>
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<span style="font-family: verdana;">Back in 2011 when I
started my quest, I found that most homes were geared either to early stages of
dementia (where residents are still able to feed and dress themselves and to
socialise with only light supervision), or to late stage (where they are mostly
bed-bound and in need of full nursing care).<span style="mso-spacerun: yes;">
</span>The difficult mid stage – still mobile, active, and sociable, but
increasingly confused, paranoid, and needing secure keypad entry and exit – was
the hardest to accommodate.<o:p></o:p></span></div>
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<span style="font-family: verdana;">Our situation was exacerbated
by the fact that mum could not by then tolerate any journey longer than twenty
minutes from the family home where she still lived, and I am based a hundred
miles away (up to three hours’ drive from that hometown).<span style="mso-spacerun: yes;"> </span>Should I look for somewhere local and
reasonably familiar to her, where she could keep her own GP and have visits
from friends, or move her closer to me, where the environment would be
completely alien and I would be her only visitor, but could see her more often?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">I investigated both, but in
the event the choice was made for me.<span style="mso-spacerun: yes;">
</span>Options were so few that only one stood out as suitable: a well-established
home ten minutes away from mum’s house, which had a strong local reputation and
was already known to us from a family friend, whose relative had lived happily
there in former years.<span style="mso-spacerun: yes;"> </span>It was still run
by the same manager, a nurse of long-standing experience in elderly and
dementia care, who had been in charge since the home opened and won consistently
excellent inspection reports. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEreWQR10_UMtomFBJWPzhQMo3h0tYJZNC5WKnT5C4YnowjOGo8Mxj5dpgOSgug-KdigeyYeHCZE_m3lA-JaN3KsIe1bRJLY3OhQq8UcCBFO0nzLZPPpvlcAyyLbMCB81loZsUTFe-Pqw/s1600/Badgeworth+2012+teddies.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEreWQR10_UMtomFBJWPzhQMo3h0tYJZNC5WKnT5C4YnowjOGo8Mxj5dpgOSgug-KdigeyYeHCZE_m3lA-JaN3KsIe1bRJLY3OhQq8UcCBFO0nzLZPPpvlcAyyLbMCB81loZsUTFe-Pqw/s320/Badgeworth+2012+teddies.jpg" width="320" /></span></a></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif">As soon as I stepped onto
the premises, I knew this was the place. It was tranquil, with beautiful
gardens, tasteful furnishings (similar to mum’s own home), and good food - including a fine daily selection of homemade cakes and desserts, designed to tempt fragile elderly appetites and boost calorie intake, if main courses proved a challenge.<span style="mso-spacerun: yes;"> </span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">It was bright,
fresh, and clean, with no tell-tale “smell of wee and cabbage”.<span style="mso-spacerun: yes;"> </span>Residents were smartly dressed in well-laundered clothes, and looked cheerful
and relaxed.<span style="mso-spacerun: yes;"> </span>Yes, it was expensive, but
no more than others I considered (in such parts of the country, no residential
care is cheap!); and, crucially, it was <b>not</b> the decorative surroundings that impressed me -
the <i style="mso-bidi-font-style: normal;">atmosphere</i> felt right.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></span></div>
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<span style="font-family: verdana;">Arriving unannounced one
Saturday lunchtime for my exploratory visit (meals are always early in care homes and the busiest times
of day; I didn’t know that then), I was taken on an impromptu tour by a
care-worker.<span style="mso-spacerun: yes;"> </span>It’s a good sign when visitors
are always welcome and staff are happy to show you around without
appointment.<span style="mso-spacerun: yes;"> </span>At that time, I barely knew
what I should be asking, but with hindsight can see that my instinctive response
picked up on features I have since learned are best practice in dementia care. <o:p></o:p></span></div>
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<span style="font-family: verdana;">While clean, the place was
not overly tidy – there was a degree of “clutter” (knickknacks, photos, books,
pot plants, soft toys) that made it feel homely and gave the residents familiar
landmarks to orientate them to their rooms; toilet doors were painted bright
yellow with big, clear picture signs, and there were contrast-coloured
handrails around the corridors (people with dementia often have <a href="https://www.alzheimers.org.uk/info/20064/symptoms/110/perception_and_hallucinations">visual, spatial, and balance problems</a> and may not be able to see white-painted rails or
doors that blend into walls); meals were served on bright yellow or blue
crockery for the same reason; there were no mirrors or shiny surfaces,
which can be disturbing to people with dementia who do not recognise their own
reflection.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">As mum had always been
fond of animals, I was pleased to see there were pets (three cats, a budgie,
and a tank of fish). </span><span face=""verdana" , sans-serif">There were plenty of
informal seating areas around the building for residents to rest on their
perambulations and have some quiet space – for instance, a charming
seaside-themed corner. I was particularly taken by the welcoming feel of a
small conservatory area, where people could sit and look out at the gardens,
surrounded by a cosy jumble of plants, watering-cans, windmills, and an array
of dolls and soft toys – spontaneously arranged as if in dialogue, with a sense of humour
and affection.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhol4BUufKakUHEVhQecuiiIm2XdyY_7EJtV35b30jDh9d03VP9r9KeWNm1ouvti0r_r6lfP_9OpL0R9QIYgGhFw_baRPcOS3eX-c2TjxSThDzmgnSftmDg9Hi6NdSNKkhvRwpGjzESLJE/s1600/Badgeworth+doorstop+2012+edit+4.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: verdana;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhol4BUufKakUHEVhQecuiiIm2XdyY_7EJtV35b30jDh9d03VP9r9KeWNm1ouvti0r_r6lfP_9OpL0R9QIYgGhFw_baRPcOS3eX-c2TjxSThDzmgnSftmDg9Hi6NdSNKkhvRwpGjzESLJE/s320/Badgeworth+doorstop+2012+edit+4.jpg" width="320" /></span></a></div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">The latter immediately
struck a chord with me, because mum had for years been obsessed with collecting
soft toys, amassing a whole spare-room-full, which she would religiously “put
to bed” each night.</span><span face=""verdana" , sans-serif"> </span><span face=""verdana" , sans-serif">These toys instantly
told me that the staff understood and respected the emotional needs and perceptions
of people with dementia.</span><span face=""verdana" , sans-serif"> </span><span face=""verdana" , sans-serif">It was evident
that everything in the home was geared to the comfort and well-being of the
residents – it was first and foremost, </span><i>their
home</i><span face=""verdana" , sans-serif">.</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">When I met the care staff,
I knew nothing of their formal qualifications, but felt that they possessed the
most important attributes – <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/a-thankless-task.html">kindness and empathy</a>; and though I could not have
defined it at the time, there was a sense of firm leadership running through
every aspect. These things you can’t learn from a website or inspection rating;
you have to go there, feel the vibes.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">And so it was that I took
a room in this home, before I knew if mum would accept it, dreading her
reaction, but conscious that I could not afford to lose the chance of such a
rare good place. Despite my <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">misgivings about having to place her in care at all</a> and the <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-2.html">emotional and practical hurdle of that move</a>, she settled more readily than I expected.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">Once we had weathered this upheaval, I thought we were on an
even keel at last; and for the next four years, while I <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/08/everything-must-go.html">packed up and sold our house</a> to
pay the fees, took over <a href="https://www.gov.uk/become-deputy/overview">legal management of mum's affairs</a>, started to rebuild
my own life, and continued to make the regular 200-mile round-trip to support
her, I had complete trust in the
home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif" style="mso-spacerun: yes;"><br /></span></span>
<span face=""verdana" , sans-serif">By autumn 2015, mum had been resident for almost twice the national average stay - a testament to the quality care she received. Dementia is a degenerative syndrome, so of course her condition deteriorated in that time and will continue to do so. But having experienced so much trauma in the preceding decade, when I had struggled to keep her safe at home, I knew she would otherwise have come to grief and was immensely grateful to have her still “with us”.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">People often ask me, “Is she happy there?” - sometimes in front of her; please don’t! Firstly, there’s an underlying judgmental implication that if she isn’t, I must have put her there for my own selfish convenience, while there remains a happier alternative elsewhere. Secondly, the honest answer is too complex. Although she can still experience pleasure and has good days (as well as bad), I can’t say mum would be truly “happy” anywhere now as a general state, given that she has no context of memory and relationship, and constantly yearns for long-dead parents and the home of her childhood, which can never be restored. She was already tormented by such feelings when still living in our own house.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">Paranoia</a>, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">delusion, hallucination</a>, and <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/confabulations-no-celebrations.html">confabulation</a> are her dominant symptoms of dementia and often result in distress, because to her everyone is a stranger and potentially means her harm. Rather than “happiness” therefore, I find it more realistic to think in terms of peace, contentment, and security – which the home provided.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">Continuity is key. In 2011 mum had first moved into the residential dementia wing, but by 2014 she was no longer independently mobile and needed continence care; she was able to move seamlessly across into the dementia nursing unit – at that time, a small wing of 12/13 residents, with four care staff (including a nurse) on duty by day and two at night. This is a very good staff/resident ratio and made for excellent care. As a regular visitor, I knew all the residents and staff and they knew mum and me; they became, in effect, our family.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">As mum’s condition progressed, there were times when she seemed to be fading, and plans for end of life care were made. Although she rallied, I prepared myself, confident in the belief that when the time did come, both of us would be supported by familiar people, who cared about us, in peaceful, familiar surroundings.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">But just before Christmas 2015 that confidence was brutally shaken. A <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">crisis brewing throughout the autumn</a> came to a <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">shocking head</a> - and I learned that, even if you have found a good home, vigilance must never be relaxed…</span></span><br />
<span face=""verdana" , sans-serif"><br /></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-2.html">Part 2: Problems</a></span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-3.html">Part 3: Crisis</a></span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif"><a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">Part 4: Conclusion</a></span><br />
<br /></span>
<br /></div>
Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com4tag:blogger.com,1999:blog-3254078482490768003.post-62527198834697455712015-08-22T00:55:00.002+01:002019-09-13T14:28:21.700+01:00My Biggest Lie: Part 2<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">It was the summer of 2011.</a><span style="mso-spacerun: yes;"> </span>After many years of struggle, I had finally
accepted that mum’s dementia had progressed to a stage where I could no longer keep
her safe at home; encouraged by the social worker, I had found her a
residential place.<span style="mso-spacerun: yes;"> </span>But as mum <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">believed there was nothing at all wrong with her</a>, how could I persuade her to move?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I had spent the August
Bank Holiday with her at our family home as usual, but had returned to London
to make the final arrangements.<span style="mso-spacerun: yes;"> </span>This
might seem odd, given that the care home was in mum’s town; but I could not
visit it openly (or indeed go out by myself at all, except briefly to the shops),
neither could I use the computer or phone in mum’s presence, because, if I were
out of sight for even a moment, she would come looking for me, and would
interpret any outside communication as suspicious.<span style="mso-spacerun: yes;"> </span>She’d had <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoid symptoms</a> for years; it was
a horrible irony that I was now really plotting behind her back.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I needed to wait a few
days to speak to the unit manager at the home, who was away on holiday.<span style="mso-spacerun: yes;"> </span>I was also waiting for the psychiatrist to return,
in order to assess mum’s mental capacity for my <a href="https://www.gov.uk/become-deputy/overview">Court of Protection Deputyship</a> application.<span style="mso-spacerun: yes;"> </span>This would give me legal
authority to manage her finances, which I would need to pay the care fees.<span style="mso-spacerun: yes;"> </span>The psychiatrist and I had agreed that I
would always stay away when she visited, so that she could see how mum was on
her own, and so that I would not be associated in mum’s mind with any unwelcome
professional approaches.<span style="mso-spacerun: yes;"> </span>She would usually
visit with Jenny, the independent care-worker mum liked, in order to maintain her trust.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">A couple of days before
this visit was due, I was disturbed to receive a phone call from an old friend
of mum’s, whom she had not seen for a while. This friend told me that mum had
rung her out of the blue, and said some very strange and upsetting things.<span style="mso-spacerun: yes;"> </span>She did not go into detail, but the fact that
I never heard from her again, despite continuing to send Christmas cards, good
wishes, and letters of explanation, suggests that it must have been something
extremely offensive.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The psychiatrist’s visit
passed apparently without incident, although she did call me at the time to ask
some background details, such as whether our dog and various relatives were
dead; as so often the case, mum presented well verbally and socially, but what
she said and believed was highly delusional – something you would only know by checking the
facts.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana";">I was reasonably assured
that all was proceeding to plan.<span style="mso-spacerun: yes;"> </span>The
next day, Jenny reported that she had looked in on mum and supervised her
eating an early supper, so I felt it was safe to go out for a few hours with
friends.<span style="mso-spacerun: yes;"> </span></span><span style="font-family: "verdana";">Little did I know that mum’s
symptoms had been building to an <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">acute psychotic episode</a>…</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">It was on my way home that
I received a call from her Aid-Call alarm service, asking me to ring the
police, who were at our house.<span style="mso-spacerun: yes;"> </span>At the
time, all they could tell me was that some neighbours had found mum in distress
and called the police to take her home.<span style="mso-spacerun: yes;"> </span>It was not until later in the week that I learned <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">the full story</a>.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Desperate to find someone
to stay with mum until I could get there, I rang round her close friends and
next-door neighbours, who had often helped us in crisis – but they were all
away.<span style="mso-spacerun: yes;"> </span>Social services out of hours were
also unable to help, and I could not contemplate sending her anywhere alone in
an ambulance.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">By this time, it was
nearly midnight and I knew I was over the alcohol driving limit, but even so, I
would have set off there and then, had I not needed to speak to the care home
manager the next morning, when she was due back. I knew that once I returned to
mum’s, all verbal communications would be impossible.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3zbdevPMh3cMqONvDv27jTefA-ffhbneNPQGp25W97oZ9UsOEy7WG4exzTWfp9mP7_VuAwFFG4frh5A6qWc0OOnyQs-hSjgSfX1o-aHm_eh2GmMP3LPOPngXZij6XYPTsXUodMeMQovY/s1600/Christmas+Day+2011+edit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1329" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3zbdevPMh3cMqONvDv27jTefA-ffhbneNPQGp25W97oZ9UsOEy7WG4exzTWfp9mP7_VuAwFFG4frh5A6qWc0OOnyQs-hSjgSfX1o-aHm_eh2GmMP3LPOPngXZij6XYPTsXUodMeMQovY/s320/Christmas+Day+2011+edit.jpg" width="265" /></a></div>
<span style="font-family: "verdana" , sans-serif;">I shall never forget the
despair of that night, lying awake waiting for daylight, fearful that mum might
go out again in my absence and come to grief.<span style="mso-spacerun: yes;"> </span>In the morning, as soon as I had spoken to the care manager, I set off,
stopping at the petrol station to stock up on food, as I would not be able to
leave mum to go out shopping unless someone could sit with her.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">En route, I also spoke to
the social worker and updated her on events.<span style="mso-spacerun: yes;"> </span>When I arrived, I found all the curtains drawn, every light in the house
blazing.<span style="mso-spacerun: yes;"> I</span>n the living room, a cold cup
of tea and plate of toast that I had asked the kind policemen to prepare the
night before stood untouched on a side table.<span style="mso-spacerun: yes;"> </span>There was no response to my arrival.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I found mum upstairs in
bed, totally inert.<span style="mso-spacerun: yes;"> </span>Momentarily alarmed
that she might actually be unconscious, I woke her.<span style="mso-spacerun: yes;"> </span>She looked at me with no curiosity, as if
nothing had happened and I had been there all along.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">For the rest of that week
until the date of her admission to the home, we were both prisoners in the
house. I had arranged for Jenny to come and sit with mum, while I went “to the
shops” – in reality, an appointment at the care home, to go through paperwork
with the manager. It was a nauseatingly stressful round-trip of a couple of
hours, culminating in a frantic “supermarket sweep”, as I had to return with
goods to support my cover story.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">As the days ticked by,
tension mounted. How, how could I ever raise the subject of the impending move
with mum? Slipping out for another
supermarket trip (covered by the next-door neighbour), I called the home from
the car park.<span style="mso-spacerun: yes;"> </span>The room, they confirmed,
would be vacant in a couple of days; ready when you are.<span style="mso-spacerun: yes;"> </span>Amid the groceries, I had stashed away
toiletries and make-up for mum’s sponge bag; it seemed so pitifully underhand
and final. I broke down and sobbed in my car, as boisterous children scooted by
on trolleys and mothers loaded their weekly shop. I have lost count of the car-parks and lay-bys I have now wept in.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So how did I do it?<span style="mso-spacerun: yes;"> </span>What did I say?<span style="mso-spacerun: yes;"> </span>In the end, it was mum who raised it first.
Watching TV in silence, she suddenly turned to me and said: “What’s going to
happen to me?”<span style="mso-spacerun: yes;"> </span>It was a heart-stopping
moment.<span style="mso-spacerun: yes;"> </span>How did she know?<span style="mso-spacerun: yes;"> </span>What did she know?<span style="mso-spacerun: yes;"> </span>It seemed that somehow, despite having no
reasoned knowledge of the situation, she sensed that she <i style="mso-bidi-font-style: normal;">was</i> in crisis and that something was afoot.<span style="mso-spacerun: yes;"> </span>How could I answer?<span style="mso-spacerun: yes;"> </span>I had never lied to her, but neither could I
explain the full truth.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">“I think you need to go
somewhere, where you can have people around you”, I said.<span style="mso-spacerun: yes;"> </span>“People to keep you company when I’m not here
and look after you at night, when you get frightened.”<span style="mso-spacerun: yes;"> </span>“I don’t get frightened”, she said, despite
having repeatedly told me that she was, without ever really knowing why.<span style="mso-spacerun: yes;"> </span>Miraculously, we managed to have a tentative
discussion along these lines and she didn’t go berserk at me, as I had feared for
so long - although there remained an uncomfortable silence at the end.<span style="mso-spacerun: yes;"> </span>I was hugely relieved to have it out in the
open at last.<span style="mso-spacerun: yes;"> </span>And yet…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">By the time I had put the
kettle on to make a restorative cup of tea, the whole tortuous conversation had
of course been forgotten.<span style="mso-spacerun: yes;"> </span>I would have
to broach it again the next day – the very day of the move.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWUxaUxGxxhNDvwQVLYBcTOvXM5IX0HW4_0NvYTBrq_cUZcGJ1yZqwHkCaaxEGAc_2iCJyO3J_lglYDT_dt0HRgLk4zr-zE28dNl53ZalbcHmJL93Wj884CC81KC5tYXO2Gr3bqhcayEs/s1600/Badgeworth+Xmas+2016.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1024" data-original-width="922" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWUxaUxGxxhNDvwQVLYBcTOvXM5IX0HW4_0NvYTBrq_cUZcGJ1yZqwHkCaaxEGAc_2iCJyO3J_lglYDT_dt0HRgLk4zr-zE28dNl53ZalbcHmJL93Wj884CC81KC5tYXO2Gr3bqhcayEs/s320/Badgeworth+Xmas+2016.jpg" width="288" /></a></div>
<span style="font-family: "verdana" , sans-serif;">That night, as I lay curled
up, weeping, in my bed, mum opened the door and looked at me, strangely
dispassionate, more bemused than upset.<span style="mso-spacerun: yes;">
</span>“What’s the matter?”, she asked.<span style="mso-spacerun: yes;">
</span>“Why are you crying?” What could I say?<span style="mso-spacerun: yes;">
</span>That this was our last night together in our own home?<span style="mso-spacerun: yes;"> <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/08/everything-must-go.html">The house we had moved into in Christmas 1973</a>, when it was new and my father was still alive? </span>Her last night in the outside world?<span style="mso-spacerun: yes;"> </span>The beginning of the end of a relationship
that had started with my birth?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Impatient at my inability
to respond, she chided: “Now come on!<span style="mso-spacerun: yes;"> </span>Stop
that.”<span style="mso-spacerun: yes;"> </span>Then: “I love you, you know.<span style="mso-spacerun: yes;"> </span>As if you were my own daughter.”<span style="mso-spacerun: yes;"> </span><i>As if? </i>Then who did she think I was?<span style="mso-spacerun: yes;"> <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/03/knowing-me-knowing-you.html">Were we strangers already?</a></span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">On the day of the move, I
surreptitiously packed an overnight bag, as instructed by the manager - best
not to take too many things at once, you can bring in more once she’s settled –
and put it ready in the back of the car.<span style="mso-spacerun: yes;"> </span>Mum came downstairs at lunchtime; I made us something to eat.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I had forwarded her “life
story” information (material facts, key events, likes and dislikes) to the home
from my phone, filling in the form in my bed overnight. Far from ideal, but the
best that I could manage in the circumstances. <span style="mso-spacerun: yes;"> </span>I had emailed the social worker to ask if she
could stand by to come with me if needed, but she had to be in a meeting that day.<span style="mso-spacerun: yes;"> </span>All that remained was to get mum into the
car.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">After lunch, we sat in
silence, while I steeled myself to come out with it.<span style="mso-spacerun: yes;"> </span>And once again, mum took the lead.<span style="mso-spacerun: yes;"> </span>“What are we doing?”, she asked.<span style="mso-spacerun: yes;"> </span>“We’re going to look at this place”, I
replied.<span style="mso-spacerun: yes;"> </span>“What place?”<span style="mso-spacerun: yes;"> </span>“A place for you to stay in the week, when
I’m not here.<span style="mso-spacerun: yes;"> </span>Where they can take care
of you…<span style="mso-spacerun: yes;"> </span>Shall we go then?<span style="mso-spacerun: yes;"> </span>Just have a look?<span style="mso-spacerun: yes;"> </span>We can have a cup of tea…?”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">And that was my biggest
lie.<span style="mso-spacerun: yes;"> </span>The only way I knew, to do what had
to be done.<span style="mso-spacerun: yes;"> </span>“Just a look… Just a cup of
tea…”<span style="mso-spacerun: yes;"> </span>When I knew it was forever.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">She let me zip her into
her jacket and got into the car.<span style="mso-spacerun: yes;"> </span>The
staff, from the manager to the receptionist and finance controller, had been primed
to greet her as a visiting guest for tea.<span style="mso-spacerun: yes;">
</span>I took her upstairs to the unit at tea-time, and, as instructed by the
manager, waited for her to be distracted in conversation, and slipped out
quickly without any fuss.<span style="mso-spacerun: yes;"> </span>Just like a
mother, taking a little child for her first day at school.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwtnVYIhTNeZm7mL3lKqJVX1eyq-ifH4KuYou6OE4faq3heLnu5ah_Qd5pnkKWtcpgfiRNCdb1AnOwaeJYm4IDZJ6nBbhSX1XdI3PpAZfn6diGMxDjlJtA2mFHuXoSP5a8S_wJhLVnL14/s1600/Mum+outside+Merestones+mid+90s.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="231" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwtnVYIhTNeZm7mL3lKqJVX1eyq-ifH4KuYou6OE4faq3heLnu5ah_Qd5pnkKWtcpgfiRNCdb1AnOwaeJYm4IDZJ6nBbhSX1XdI3PpAZfn6diGMxDjlJtA2mFHuXoSP5a8S_wJhLVnL14/s320/Mum+outside+Merestones+mid+90s.jpeg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">A move into residential
care is at least as much a watershed for the family carer, as for the person
with dementia – and the grief arguably greater, for we know the full story of
loss.<span style="mso-spacerun: yes;"> </span>No-one does this lightly.<span style="mso-spacerun: yes;"> </span>One might consider it similar to abortion: a
choice you make when it has become the only viable option. A similar stigma, maybe.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">To carers, I say it may
seem an impossible decision, an overwhelming task.<span style="mso-spacerun: yes;"> </span>But sometimes you have to face it and you <i style="mso-bidi-font-style: normal;">can</i> survive.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">To parents, I say please,
please don’t elicit impossible promises from your children; have the courage to
confront your own mortality before you lose capacity; have the discussions
while you can, be realistic, <a href="https://www.gov.uk/power-of-attorney/overview">draw up power of attorney</a>, put some plans of your own in place.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">To everyone: <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/whose-low-expectations.html">don't fear care homes</a>.<span style="mso-spacerun: yes;"> </span>The sector is woefully
underfunded and undervalued, yes; there are bad homes, true.<span style="mso-spacerun: yes;"> </span>But there are also many good ones and
wonderful people doing essential work to support the most vulnerable in
society.<span style="mso-spacerun: yes;"> </span>Don’t let’s stigmatise them. It
is <i>not</i> a fate worse than death.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyoAzXGwu9a0eggO9Kh4A6Ie1k1-Cp_GQE9TpdpCrN-UuVztOOWS0nngPu8dhcAbxyX1lsy_WtZNsonWb74jremOfuxrKKSmPm2mD8APniRXvAt-DwqoNWN-S4jC0lFqYaE7gVD3QVa04/s1600/Ming+outside+Merestones+mid+90s.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyoAzXGwu9a0eggO9Kh4A6Ie1k1-Cp_GQE9TpdpCrN-UuVztOOWS0nngPu8dhcAbxyX1lsy_WtZNsonWb74jremOfuxrKKSmPm2mD8APniRXvAt-DwqoNWN-S4jC0lFqYaE7gVD3QVa04/s320/Ming+outside+Merestones+mid+90s.jpeg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Here are mum and I, as I
prefer to remember us, about twenty years ago, outside our home, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/08/everything-must-go.html">now sold to pay mum's fees</a>.<span style="mso-spacerun: yes;"> </span>(Not, by the way, a
“mansion”, as so often assumed of those <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/social-care-is-not-lifestyle-choice.html">liable for 100% self-funded care </a>at circa £1,000 per week, just
an ordinary suburban house.)<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So if anyone thinks it’s
easy to “put your mother in a home”, read this back.<span style="mso-spacerun: yes;"> </span>Imagine all those lonely years, when I had
dreaded having to break mum’s trust in me, her only child.<span style="mso-spacerun: yes;"> </span>I did it to save her.<span style="mso-spacerun: yes;"> </span>She is still alive today. I have no-one
left.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">It will be a long time, if
ever, before I can think of August as a happy holiday season.<o:p></o:p></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";">(This two-part post - <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">read part one here</a> - is a companion piece to an earlier post concerning the issue of <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">"truth-telling" in dementia care</a>.)</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com4tag:blogger.com,1999:blog-3254078482490768003.post-72297688819707455632015-08-22T00:55:00.001+01:002019-09-13T14:31:13.842+01:00My Biggest Lie: Part 1<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I have put off writing
this for a long time – an episode I’d rather forget.<span style="mso-spacerun: yes;"> </span>But as August has come around again, the city
familiarly desolate, friends posting happy family snaps from far-flung beaches
and villas, I find myself back in the bleak summer of 2011: the year I put my
mum into care.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Ever since I was a little
girl, mum had said to me, “never put me in a home”.<span style="mso-spacerun: yes;"> </span>It became a mythic dread, a calamitous fate I
would do everything in my power to avoid; but even then, at the age of seven,
eight, or ten, I was reluctant to commit myself to a promise. Another little girl would perhaps have said
“promise”, knowing this was what a beloved mother wanted to hear and hoping the
word would be enough; but as a serious and scrupulously honest only child, even
then I sensed it might be too big a guarantee – and if I didn’t <i style="mso-bidi-font-style: normal;">know</i> for sure that I could keep my
promise, I could not say the word.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">What I do know is that mum
had never imagined the situation we would face in that summer of 2011, when she
was almost eighty-five.<span style="mso-spacerun: yes;"> </span>Her own parents
had both died of acute illness in their early seventies, her mother of cancer,
her father of a heart attack six weeks later.<span style="mso-spacerun: yes;"> </span>My father too died of cancer, at the age of only fifty-two, when I was a
student.<span style="mso-spacerun: yes;"> </span>Shocking, yes; traumatic,
certainly.<span style="mso-spacerun: yes;"> </span>But not protracted, nor
degrading. Morphine for pain relief
brought hallucinations, but, though distressing, these were temporary – they did
not fundamentally change the personality of those we loved or our relationship
with them; both my grandparents and my father were still themselves when they
died, cognisant of us and of our love for them.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaCJ5TnBaEEIgKbOfkGdhppHwHu6NSBKkyW_U1BuXsuV4XQK8vxCvTMDm_JmnCGpGVYsEZPJwJWozeiirrwXVYir0I43NgDEYM7RhTuQr9f35Em2dyEvJRe9g9Ped6RHcPZcYgoRkre1Y/s1600/Glenys%252C+Ming%252C+Willy+-+1972+001a.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaCJ5TnBaEEIgKbOfkGdhppHwHu6NSBKkyW_U1BuXsuV4XQK8vxCvTMDm_JmnCGpGVYsEZPJwJWozeiirrwXVYir0I43NgDEYM7RhTuQr9f35Em2dyEvJRe9g9Ped6RHcPZcYgoRkre1Y/s320/Glenys%252C+Ming%252C+Willy+-+1972+001a.jpg" width="320" /></span></a></div>
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">(Tellingly, when my grandmother
was diagnosed with inoperable stomach cancer back in 1978, mum begged the
doctors not to tell her, arguing that she would “give up”. So both medics and family were forced into a
deception that she merely had “kidney stones” and “a fissure of the bowel”,
from which she could in time recover - rather than an untreatable terminal
illness, that in fact killed her eight months later. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Even as a twelve-year-old,
I thought mum was wrong: my grandmother, a highly emotional person, would
undoubtedly have been devastated by the news, but she was not cognitively
impaired – she could have understood, if not come to terms with it. And as a family we would not have had the
added burden of secrecy; we would have been able to plan for her care and that
of my grandfather, whom the rest of us knew would soon be widowed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Mum, in my view, deluded
herself that “not giving up” could cure her mother of an organic disease that
had already spread unstoppably through her body. This starkly illustrates the difference in
personality between us: she was an escapist, who thought that if you ignored
problems, they would somehow go away; whereas I have always been a realist –
equally upset by bad news, but believing that you have to face it, in order to
deal with the practical consequences. All this came into play in the dilemma I faced
in 2011.)<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<!--EndFragment--><span style="font-family: "verdana" , sans-serif;">Mum remembered her
grandmother who, with hindsight, had dementia.<span style="mso-spacerun: yes;">
</span>But “Nain”* Thomas had lived in
a mountain village in the early years of the 20<sup>th</sup> century, where
doors were left open, everyone knew everyone and could guide a confused elderly
lady gently home - and, crucially, families were large and women stayed at
home. There was always a daughter or a
sister, a niece or daughter-in-law at hand; and living into very old age with
multiple health problems was comparatively rare.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So mum’s impression of her
grandmother’s condition was benign - <span style="mso-spacerun: yes;"> </span>affectionate
anecdotes of mildly “dotty” behaviour, remembered from her distant childhood.<span style="mso-spacerun: yes;"> </span>She had never herself witnessed the more
extreme symptoms of late-stage dementia, much less had to cope with them as
sole carer; and all those years ago, when she had said “never put me in a
home”, she had not known anyone to whom that had actually happened, nor
understood why it might. <span style="mso-spacerun: yes;"> </span>She had no
template for decades of chronic degenerative disease or of bed-bound
dependency, believing that “one day I’ll just pop my clogs”.<span style="mso-spacerun: yes;"> </span>She could not know what she asked of me.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I have written elsewhere
about the <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/not-beige-cardigan.html">long progression</a> of her own dementia – twenty years or more from the
earliest symptoms to present date – and the <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html">blunt reality of end stage needs</a>.<span style="mso-spacerun: yes;"> </span>By 2011, mum was almost completely unable to
take care of herself, yet equally unaware of that incapacity.<span style="mso-spacerun: yes;"> </span>There is a name for this: <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">anosognosia</a> –
commonly known as “lack of insight” or “lack of awareness”.<span style="mso-spacerun: yes;"> </span>It is a <i style="mso-bidi-font-style: normal;">clinical</i>
condition, resulting from brain damage (caused by trauma, stroke, or disease), which
renders a person unable to acknowledge that they are experiencing disability.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I didn’t know this.<span style="mso-spacerun: yes;"> </span>So for many years l had struggled to support
mum on my own (often against fierce antagonism from her), desperately hoping
and believing that surely one day, when things got bad enough, she would have
to admit there was something wrong and accept professional help.<span style="mso-spacerun: yes;"> </span>But that day never came.<span style="mso-spacerun: yes;"> </span>It never could, because she was not “in
denial”, as I thought – the brain damage that caused her symptoms of dementia
also prevented her from recognising them.<span style="mso-spacerun: yes;"> </span>As far as she was concerned, she was absolutely fine; <i style="mso-bidi-font-style: normal;">I</i> was the one behaving strangely.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqhG2y9UrszgMLbztBd_ltRyT_K_cCLWlQlfZrhyphenhyphenPRyAmoShQ8Io-1RebeUkommZnhwMMGprTeu_7Y3lNp7GaZ3eGW2WjUNtG7c8W4kwcbt_MyhYnc2TTh548eY00gUwxgXsHDKVrC_yI/s1600/Glenys%252C+Ming+%2526+Willy%252C+Llandudno+1970s+00.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqhG2y9UrszgMLbztBd_ltRyT_K_cCLWlQlfZrhyphenhyphenPRyAmoShQ8Io-1RebeUkommZnhwMMGprTeu_7Y3lNp7GaZ3eGW2WjUNtG7c8W4kwcbt_MyhYnc2TTh548eY00gUwxgXsHDKVrC_yI/s320/Glenys%252C+Ming+%2526+Willy%252C+Llandudno+1970s+00.jpg" width="320" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So it was not until the previous
autumn of 2010 – after another dreadful August that brought her into the general
hospital – that she had finally been referred to social services at my request.<span style="mso-spacerun: yes;"> </span>I had been finding it increasingly hard to
cope, and hoped the hospital admission would pave the way for regular home
support. But anosognosia struck once
again.<span style="mso-spacerun: yes;"> </span>Mum discharged herself early and
refused the hospital’s follow-up services.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Already at breaking point,
I persisted behind the scenes, and mum was later assigned a <a href="http://www.theguardian.com/social-care-network/2015/mar/17/the-social-worker-who-changed-my-life?CMP=share_btn_tw">social worker</a>, occupational
therapist, and consultant psychiatrist from the community mental health team;
but because she did not accept that she had any problems, all these professionals
had to tread softly, in order for her to accept them.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">She would not attend
clinics, for instance, so they had to visit her at home, alongside familiar
community nurses from the GP’s Older Adult Nursing Team, giving the impression
that they were all routine “health visitors from the surgery”.<span style="mso-spacerun: yes;"> </span>Even then, she would not always let them in
and rejected all their suggestions; there was little they could do.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">(She would not agree to
any kind of formal testing, so diagnosis could only be made by the
psychiatrist’s informal observations, and was not registered until the
following autumn of 2011, when I had to apply for <a href="https://www.gov.uk/become-deputy/overview">legal authority to manage mum's affairs</a>.) <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The social worker, to whom
I shall always be grateful, put me in touch with a wonderful independent care-worker,
Jenny, whom I engaged to visit mum a couple of times a week – just to look in
and make sure she was safe, help her to prepare a hot meal, and get to know
her, with a view to introducing daily care in due course.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">First signs were
encouraging; mum warmed to Jenny.<span style="mso-spacerun: yes;"> </span>But
from spring 2011, her symptoms dramatically escalated, repeatedly putting her
at risk, and it became clear that she needed 24-hour care that no one person
could provide.<span style="mso-spacerun: yes;"> </span>The social worker urged
me to seek a residential place, but although I agreed this was now the only
practical solution, I just could not see how to achieve it.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Wasn’t this mum’s greatest
fear?<span style="mso-spacerun: yes;"> </span>The very thing she had always
warned me against?<span style="mso-spacerun: yes;"> </span>Bad enough to go
against her wishes; but, given that she believed there was nothing wrong with her
at all, how could I even broach the idea of moving her out of her own house, to
end her days in a “home” - let alone actually get her to go there?<span style="mso-spacerun: yes;"> </span>It seemed insurmountable.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDjxJXG8AHDB_A7ACOPJMPhgdmwPAyZYfWKt-k1KZh6oq4JvtS9N585WCE6ii_qXhwvYPXD8C-rpS4oP6KMZkiLAQO3pZJ_-d0nlIxvIS6VAHX6J-R9r7p0lggc0zHAaNtkc_Fjhg09U/s1600/Glenys+%2526+Ming+donkey+derby+edit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="722" data-original-width="1089" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrDjxJXG8AHDB_A7ACOPJMPhgdmwPAyZYfWKt-k1KZh6oq4JvtS9N585WCE6ii_qXhwvYPXD8C-rpS4oP6KMZkiLAQO3pZJ_-d0nlIxvIS6VAHX6J-R9r7p0lggc0zHAaNtkc_Fjhg09U/s320/Glenys+%2526+Ming+donkey+derby+edit.jpg" width="320" /></a></div>
<span style="font-family: "verdana" , sans-serif;">By the summer, however, I
was shocked to realise that she no longer recognised our family home, where she
had lived for nearly forty years; she couldn’t remember which of the two main bedrooms
was hers, or recall any room on the other side of a door.<span style="mso-spacerun: yes;"> </span>Distressed by the apparent “strangeness” of
the place, she obsessively packed shopping bags to flee, sometimes sallying
forth at night to try and get her bearings.<span style="mso-spacerun: yes;">
</span>I knew then that the home she had loved was no longer a cherished
sanctuary, but a frightening jail to her; and if it was not a comfort, nor even
familiar, would she not at least be physically safer in care?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So in that terrible summer
of 2011, I began my lonely and frantic search of care homes.<span style="mso-spacerun: yes;"> </span>Lonely, because I could not consult mum about
it or involve her in this, the biggest choice I would ever have to make; and
frantic, because I had to contact and visit all these places in snatched
moments, behind her back, en route between my flat and our family home, a
hundred miles away.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Novelist <a href="http://www.independent.co.uk/life-style/health-and-families/features/the-search-for-care-home-comes-with-guilt-but-there-are-10-key-things-to-look-out-for-10459608.html">Penny Hancock has written about the heartbreak and guilt</a> of choosing a care home <i style="mso-bidi-font-style: normal;">with</i> her mother, and <a href="http://www.totally4women.com/2013/03/28/the-longest-cruellest-goodbye/">writer Pippa Kelly has detailed a similarly harrowing experience</a> alongside her father and siblings.<span style="mso-spacerun: yes;"> </span>Imagine the pain of having to do it alone in
secret, bearing sole responsibility for that decision.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I soon discovered that
residential care for those in the mid stages of dementia (as mum then was) is
the hardest to find, as most homes cater either for early stage (where
residents are still mobile and sociable, and don’t require secure, key-pad
entry/exit or all-day supervision) or late stage, where they are mostly
bed-bound, in receipt of nursing care.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">This narrowed down the
options considerably (something I may discuss in a future post), but I was
lucky to secure a provisional place in an excellent specialist unit ten minutes
from our family home – by that time, mum could barely endure a twenty-minute
journey in the car, so even if I had been able to find a suitable home near me
in London, it would have been far too traumatic a move.<span style="mso-spacerun: yes;"> </span>The problem remained of how to persuade
her.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">With no other immediate
family, I knew I would have to do this alone.<span style="mso-spacerun: yes;"> </span>I considered involving one or two of her close friends, but decided it
was too big a request, as I wanted mum to maintain a positive relationship with
them in future.<span style="mso-spacerun: yes;"> </span>I canvassed the
professionals for advice on how to open the discussion with her, but they
admitted that, given both her lack of insight and lack of short-term memory
(that meant any conversation would instantly be forgotten) there was no easy
answer.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The only practical
suggestion, which totally shocked me, was this: as mum and I had been
accustomed to going out for lunch and still managed this occasionally, if the
worst came to the worst, I might have to take her out one day for our usual pleasant
meal and then drive her straight to the home.<span style="mso-spacerun: yes;">
</span>Unimaginably brutal!<span style="mso-spacerun: yes;"> </span>How could I
possibly do that to my mum?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">With any other illness or
disability, you would of course expect to plan such a major life change openly
and equally with the person needing care over a gradual time-scale, take them
to look at potential homes, and help <i style="mso-bidi-font-style: normal;">them</i>
to make the choice.<span style="mso-spacerun: yes;"> </span>But dementia is not
like other disabilities: <a href="http://personalhealthrecords.in/index.php/2015/08/19/tips-for-dealing-with-people-who-dont-know-they-have-dementia/">anosognosia</a>, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoia</a>, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/confabulations-no-celebrations.html">confabulation, delusion,</a> and <a href="http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1408">hallucination</a> (all of which mum experienced) are mind-altering symptoms that
trample the parameters of judgment and normal social exchange.<span style="mso-spacerun: yes;"> </span>And sometimes they confront us with terrible decisions
and actions that would otherwise be unconscionable, in order to safeguard our
loved ones.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The social worker offered
to come with me on the day if I couldn’t manage, and I was glad of this
notional support, although wary that her unaccustomed appearance at our house
might inflame an already volatile situation.<span style="mso-spacerun: yes;"> </span>I had reserved the only available room in the unit, and knew that if mum
didn’t take it up on the due date, we might lose the chance of a place in the best
home in the district, the only one I considered to be at all suitable.<span style="mso-spacerun: yes;"> </span>With this date fast approaching, I still had
no idea how I was going to effect the move.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Could I go through with
it?<span style="mso-spacerun: yes;"> </span>Wracked with guilt at the impending
betrayal of mum’s lifelong trust, I became physically sick with apprehension.<span style="mso-spacerun: yes;"> </span>But one final, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">awful incident</a> just after the
August Bank Holiday convinced me I could not turn back: whatever it took, I had
to get mum into the home…</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-2.html"><span style="font-family: "verdana" , sans-serif;">Continued in Part 2</span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">* Welsh for grandmother (pronounced "nine").</span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";"><br /></span>
<span style="font-family: "verdana";">(This two-part post is a companion piece to an earlier post concerning the issue of <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">"truth-telling" in dementia care</a>.)</span></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com2tag:blogger.com,1999:blog-3254078482490768003.post-26665315681673638962015-07-06T13:27:00.001+01:002017-04-23T00:27:09.222+01:00An Economically Viable Unit<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I woke this morning to <a href="http://www.bbc.co.uk/news/health-33382976">news</a> of an <a href="https://www.alzheimers.org.uk/info/20093/reports/253/dementia_2015">Alzheimer's Society report</a> that states that over 50% of GPs think that patients with dementia don't get enough support from the NHS, and 67% think those patients don't get enough support from Social Services. (The NHS budget being ring-fenced, while the social care budget - encompassing most of those living with dementia - is not.) </span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZYqvEggwkG8jFo5rItW0rEPHy94zpS5bo860-nBfHdtd0IzAOajcqMaKHpKIto8KhuSb4hhA0rF5xlhqLURdk3728UMjTpbgLzfT8UilSdeBXIPtNSQOz5cSjffhSlpkN4unnSJdb_Pg/s1600/Ming+baby+edit.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZYqvEggwkG8jFo5rItW0rEPHy94zpS5bo860-nBfHdtd0IzAOajcqMaKHpKIto8KhuSb4hhA0rF5xlhqLURdk3728UMjTpbgLzfT8UilSdeBXIPtNSQOz5cSjffhSlpkN4unnSJdb_Pg/s320/Ming+baby+edit.jpg" width="233" /></a></div>
<span style="font-family: "verdana" , sans-serif;">This is not news at all to anyone living with dementia or their family carers. But still. It has made headlines and people are talking - indeed arguing - about it on social media. And of course money is at the root of it.</span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">In response to a long exchange with someone on Twitter, who argued (in somewhat extreme terms) that the "greater good" of economics is always more important than personal need, here is my dramatic riposte:</span><br />
<span style="font-family: "verdana" , sans-serif;"><b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "verdana" , sans-serif; mso-ansi-language: EN-US;"><br /></span></b>
<b style="mso-bidi-font-weight: normal;"><span lang="EN-US" style="font-family: "verdana" , sans-serif; mso-ansi-language: EN-US;">INT. NON-DENOMINATIONAL
APOLITICAL CELEBRATORY BUILDING - DAY</span></b></span><br />
<i style="font-family: verdana, sans-serif;"><br /></i>
<i style="font-family: verdana, sans-serif;">A function room with podium.<span style="mso-spacerun: yes;"> </span>Ambient
music.<span style="mso-spacerun: yes;"> Taking</span> the podium, the CELEBRANT
motions for the music to be lowered, opens a large register, and addresses the
audience. <span style="mso-spacerun: yes;"> </span>In the front row, a young
couple, MAL and TRIX, sits with a baby in arms, an empty reserved seat beside
them.</i><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Welcome,
friends, to this happiest of days! <span style="mso-spacerun: yes;"> </span>An
occasion of both joy and solemnity. A rite of passage that confirms our place
in the community. <span style="mso-spacerun: yes;"> </span>Ladies, gentlemen, and
those of any other identification, we are gathered here, in the sight of secular
state - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>A young
man, ANDY, bursts in from the back of the auditorium.</i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Sorry,
sorry!<span style="mso-spacerun: yes;"> </span>Not too late, </span></span><span style="font-family: "verdana" , sans-serif;">am I?
Signal failure on the Circle Line -</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
If you please? Quick as you can. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>ANDY
hurries to join MAL; takes the seat beside him, out of breath.</i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We are
gathered here, in the sight of secular state, to celebrate with (<i>glances at
register</i>) Mal and Trix the arrival of a brand new Economically Viable Unit. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>A flustered
ANDY leads the audience in applause. <o:p></o:p></i></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Would the
Genetic Donors of the Unit step forward, please? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>MAL and
TRIX step up with the swaddled baby. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">You are the
registered Genetic Donors?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL/TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We are.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Congratulations.
You are to be commended for your contribution to society. Do you have your
certificates of Economic Viability? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL/TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We do.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>They
proffer two certificates. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Thank you. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s all in
order - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Verified
and sealed. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>to MAL</i>) </span></span><span style="font-family: "verdana" , sans-serif;">I see you
have a period of two months out of employment in the last ten years?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It was
before the new rules came in... (<i>indicates</i>) 2015: I was made redundant, in the
cuts... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Redundancy
is no excuse; you were evidently deemed unviable at that place of work - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Only because
my job was phased out. It wasn’t me per se, they didn’t replace me. Efficiency
savings, that’s what they said - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Which
means you were inefficient. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Not me
personally, no; that role. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">“Inefficient”’s
not “unviable”, is it? Just a little bit surplus to requirements... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">That is a
semantic distinction. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Yeah,
thanks, Trix, I can handle this. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Just trying
to help... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>to
CELEBRANT</i>) </span></span><span style="font-family: "verdana" , sans-serif;">It was
2015! Before the rules came in. You’ve got to take that, by law!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Quite
right, sir. Rules are rules. (<i>refers to documents; to TRIX</i>) You, however, have reduced
Viability Points? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Because of the baby - sorry, "Unit". I took the minimum time
off, just the afternoon, but I physically had to be in the hospital because
there were complications - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
The Unit is not healthy? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX/MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">No!
Yes! She’s healthy! Nothing wrong with her now! <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>Silence.
Tension. Worried looks all round. <o:p></o:p></i></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">She is
Viable, trust me. At least as a future Genetic Donor and Incubator - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
Supporting the economy with future tax-payers, increased GDP. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">I know I’ve
got to take a hit on Viability myself, but that’s my choice, don’t take it out
on her. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Very
well. Let us proceed. You have a name?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Prudence. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We’ve
always been supporters of government economic policy. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>The
CELEBRANT raises an eyebrow. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>rises
in testimony</i>) </span></span><span style="font-family: "verdana" , sans-serif;">They have,
they have! Praise be!</span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>He jollies
the audience along to agree. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Surname?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Goodheart. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">TRIX </span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s an old
family name. We got a dispensation to keep it - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- We paid
the dispensation fee. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">And your sponsor? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">That’s
me! <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>He bounds
up. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Andy
Fairweather. At your service. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Do you,
Andrew Fairweather, undertake sponsorship of this Unit, Prudence Goodheart? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">I do! <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Socially,
morally, legally, and </span></span><span style="font-family: "verdana" , sans-serif;">financially?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>less
sure</i>) </span></span><span style="font-family: "verdana" , sans-serif;">I do.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">To be a
guarantor, from this day forth, should the said Unit encounter difficulty in
meeting approved behaviour or achievement, placing Viability at risk? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">... I
guess... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">The terms
of the contract have been explained? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>ANDY shrugs,
uncomfortable. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">They
have, yes. (<i>to ANDY; low</i>) I did tell you, when I first asked - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- In
the pub, when we’d necked ten pints and JD chasers to wet the sprog’s head - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
It is all in the small print, Mr Fairweather. You cannot claim to have been
mis-sold? Because you had the statutory fourteen days “no quibble” cancellation
period. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">I signed
the forms, yeah; but - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
You’re my best mate, Andy; my Best Man... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We’re
relying on you. You owe us. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>MAL and
TRIX eyeball ANDY. A beat. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">May we
proceed? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Yeah, OK.
It’s cool. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>The
CELEBRANT takes up the register. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">You, the
registered sponsor, Andrew Fairweather, agree to guarantee the continued
Viability of this Unit, throughout its lifetime (or yours, whichever should end
sooner); to maintain a healthy lifestyle commensurate with Economic Viability,
to fund support of the Unit during any periods of Unviability or to arrange
private funding for such at your discretion - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Now, wait
a minute. Wait a minute! How long does this “funding” go on for? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s just a
formality - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Like
“renouncing all evil”. That’s what they said in the old days; no-one took it
literally. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">A kind of
insurance policy - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- An
excess, if you like. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">All being
well, she’ll never have to make any claim. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">All being
well? But what if it’s not? What if - ?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Well then
we hope you’d step up to the plate. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">As our best
mate. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Isn’t that
the point? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s all in
the T&Cs, Mr Fairweather. In coming here today, you have entered into the
contract. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">No, hang
on, I came to support my mate’s kid. She’s cute. He showed me the photos on his
mobile, the night she popped out. All welled up, he was - like when Arsenal won
the double; and we’d had a few bevvies. So I was up for it, you know? Thought
I’d pay for her Prom or something, maybe chip in for driving lessons or Uni
fees, if she gets in, if there’s still a Uni, if I can afford it by then and
don’t have kids - sorry, Units - of my own; but a whole lifetime...? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We’ll
pledge the same for you, when the time comes. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Quid pro
quo. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s quids
I’m worried about... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">The terms
are quite clear. There’s been a multi-million pound cross-platform government
campaign. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">But who
takes any notice of that? It’s for old codgers, isn’t it? Losers? Load of blah,
blah, blah - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Well
maybe you should. You might need to avail yourself of it one day. If you have
not paid due attention - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Sorry, do
we have to go into all this now? I’m sure we can sort it out. Prudence is
getting tired. And we’ve got guests; they’ve come over for the do... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Cut us some
slack here, will you? It’s our first time as donors - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- We do
want to contribute to the greater good. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>re
ANDY</i>) </span></span><span style="font-family: "verdana" , sans-serif;">And he
doesn’t mean to be disrespectful -</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- It’s just
a blip - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Nerves - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">-
Immaturity. He’s never had a Unit himself. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Who are you
calling immature? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Let’s just
get on with it, yeah; get stuck into the buffet? We’ve got handmade Scotch
eggs. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">No, but - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Please,
Andy! We can’t do it without you. We need her to be on the Register - or else
she doesn’t exist. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">OK... (<i>to
MAL; pointed</i>) But we’ll talk later, right? Do a deal? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">You can
make whatever arrangement you like between yourselves, so long as government
requirements are met and you claim nothing from the state. You mind your own
business, we mind ours. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>appeals to
ANDY</i>) </span></span><span style="font-family: "verdana" , sans-serif;">We’ve only
got this room for a one-hour slot; there’s penalties...</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>to CELEBRANT</i>) Just cut to the chase. I could murder a pint. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Thanks,
mate. Appreciate it. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>The
CELEBRANT refers back to the register. <o:p></o:p></i></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">You, the
Registered Sponsor, or any Deputy Sponsor you assign by deed of variation to
take on your responsibilities in the event of your prior demise or incapacity,
agree to notify the authorities at once and without delay of any ongoing and
irreversible Unviability - including, but not confined to, persistent
vegetative state, quadriplegia, loss of communicative senses, incurable brain
injury, genetic or acquired mental defect, or any form of dementia. (<i>proffers
register</i>) Sign here. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">My nan’s
got dementia... <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX </span></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Ssshh!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Have the authorities been notified? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">It’s a different case, not your remit - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- You
didn’t hear that, OK? (<i>re ANDY</i>) He was confused - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- Not “confused”! There’s nothing wrong with <i>my </i>Viability! <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">What did
you have to say that for? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Your nan could
be reported. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL </span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">We’ll
be here for hours now!<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">No-one
touches my nan.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Forget your
nan - <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">- She’s
forgotten you.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>ANDY and
MAL look at her. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Sorry. I
just mean, your nan’s got nothing to do with it. This is our Prudence’s day. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Yeah, it’s
all about Prudence. We want to take care of our girl. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>to ANDY</i>) I
could overlook the remark about your relative, as it does not concern anyone
here present today. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">TRIX <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Thank you.
(<i>to ANDY</i>) That’s good, isn’t it? Understanding...? <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">MAL <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Very civil.
<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;"><i>A beat.
ANDY nods, not quite sure. </i><o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Just one
more question…<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">(<i>looks at
watch</i>) Of course.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">This
notification thing?<span style="mso-spacerun: yes;"> </span>When you have to
contact the authorities?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Yes?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Well what
actually happens?<span style="mso-spacerun: yes;"> </span>When you give notice?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">Then we
come.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">ANDY<o:p></o:p></span></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">And do
what?<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US" style="mso-ansi-language: EN-US;"><span style="font-family: "verdana" , sans-serif;">CELEBRANT</span></span><br />
<span style="font-family: "verdana" , sans-serif;">Euthanise
the Unit.</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">It’s all in the T&Cs – and
the government campaign.</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">You must
know?</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">That’s the basis of our existence:
an Economically Viable Unit.</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">(</span><i style="font-family: verdana, sans-serif;">proffers
register</i><span style="font-family: "verdana" , sans-serif;">)</span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">Sign here?</span></div>
</div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">BLACKOUT.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com0tag:blogger.com,1999:blog-3254078482490768003.post-89638009541479652462015-03-03T03:31:00.001+00:002016-06-21T20:55:02.437+01:00Knowing Me, Knowing You<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“Does she still recognise
you?”<span style="mso-spacerun: yes;"> </span>That’s what everyone asks.<span style="mso-spacerun: yes;"> </span>Answer: for the moment, to some extent, yes.<span style="mso-spacerun: yes;"> </span>My mum does
still recognise me.<span style="mso-spacerun: yes;"> </span>She knows me by sight.<span style="mso-spacerun: yes;"> </span>But what does that phrase really mean?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Think of the many people <i style="mso-bidi-font-style: normal;">you</i> “know by sight”: members of your gym
class, a cashier in your local supermarket, fellow commuters on your train, regulars
at your favourite coffee shop or bar.<span style="mso-spacerun: yes;">
</span>You might exchange the odd word, perhaps even know their name and ask
after their family, their health, their plans for the weekend.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">But meet them out of
context – fully-clothed in the street, instead of lycra-clad in the gym, or on
the Tube, not at the till – and you may be thrown.<span style="mso-spacerun: yes;"> </span>You know you “know” them, but are not sure
where or how.<span style="mso-spacerun: yes;"> </span>So you nod and smile, make
small talk, or just keep quiet while they speak, in the hope they’ll give you
some clue, and maybe it will come back. Maybe it won’t; but through this
non-committal pantomime, you will have covered up your mental blank, met social
expectations – and the other person need not know you don’t fully remember
them.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">This is now the level of
my relationship with mum.<span style="mso-spacerun: yes;"> </span>Yes, she
responds to my face; I worry that her sight is declining and still value
that.<span style="mso-spacerun: yes;"> </span>I know I am lucky she can still
speak and hear; we can engage to some degree.<span style="mso-spacerun: yes;">
</span>She <i style="mso-bidi-font-style: normal;">acts</i> as if she knows
me.<span style="mso-spacerun: yes;"> </span>But all intimacy is gone.<span style="mso-spacerun: yes;"> </span>An only child in my forties, I am no more
significant to her than some tolerably pleasant woman she might have nodded to
in a café, when she still went shopping in town.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">That’s not to say she doesn’t
care about her daughter.<span style="mso-spacerun: yes;"> </span>Ask her, and
she will say she loves her very much.<span style="mso-spacerun: yes;">
</span>But that daughter, or that “Ming”, is an abstract notion, an amorphous
idea of a young girl.<span style="mso-spacerun: yes;"> </span>Mum can’t equate
that with the actual middle-aged woman who sits at her bedside. On the table
before her will be recent photographs of me that I’ve labelled with my name, in
hope of reinforcing the connection.<span style="mso-spacerun: yes;"> </span>She
will often be fixated with these, remarking on them to me (not always in
flattering terms!), and they will be more real and interesting to her than the
flesh-and-blood Ming in the room.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Since I realised mum had
dementia, I always knew there might come a time when she didn’t know me.<span style="mso-spacerun: yes;"> </span>But I thought it would be at a stage where
she didn’t know or respond to anything much. I had no idea it could co-exist
with relative articulacy and sentience. I never imagined the slow and insidious
way that “unknowing” could creep up, or the sophistication of mum’s facility to
conceal it.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">There have been times in
recent years when it has been painfully explicit (as I have detailed in my
earlier post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/i-dont-know-who-you-are.html">I Don't Know Who You Are</a>); but with hindsight, I can see
instances much further back, when the underlying clues were there. Mum loved to
give presents, for example, and rarely ventured out without lighting upon
something for me: purses, make-up bags, trinkets, jewellery. However, these
gifts grew more inappropriate and sometimes downright bizarre. I was puzzled
when she pressed on me a lurid silver, pink and mauve bangle of a kind I would never
wear - more suited to a pre-teen Britney Spears fan than an adult.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">At the time, I was rather
irritated at both the apparent lapse in taste and waste of money – affronted
that, in choosing this, she <i style="mso-bidi-font-style: normal;">didn’t seem
to know me</i>.<span style="mso-spacerun: yes;"> </span>Little did I realise
that was the literal truth.<span style="mso-spacerun: yes;"> </span>She was
buying that bracelet for the teenage me in her head, not the real woman I had
become, or for a notional daughter whose taste she no longer recalled.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">There were other more
immediately troubling incidents, when she would suddenly say things like “are
your parents alive?” or “when are you going back to Hong Kong?” (I’ve never
been and live in London), which might be deemed obvious signs that she thought
I was someone else; but if I looked askance or remarked on it, she would
instantly cover up and the moment would be past. Sometimes I would catch her
looking oddly at me, but she would say nothing. Now I think she was wondering
who I was.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">For all my life, until
dementia took hold, mum and I had been close, with no other immediate family
since dad died in 1988.<span style="mso-spacerun: yes;"> </span>It is infinitely
sad that not only has our current relationship lost its roots, but I find
myself questioning the last decade or more, when those roots, it seems, had
already begun to wither unseen underground. How much of our intimacy then was a
sham, mum just going through the motions, humouring a vaguely familiar woman
whom she “must know” because she happens to be in the house? <span style="mso-spacerun: yes;"> </span>Could it be that we were living as strangers
for pretty much all of that time?<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Now that we are entering
the last phase of mum’s journey, I have learned that “recognition” is not the
same as “knowing”.<span style="mso-spacerun: yes;"> </span>You might recognise
the cashier at your supermarket till, but do you really know her? Not unless
she’s a friend. “Knowing” comes from accumulated memory, the incremental sum of
facts and thoughts and feelings about another person that go beyond superficial
contact.<span style="mso-spacerun: yes;"> </span>My mum still recognises my
face; she sometimes knows my name, sometimes knows I’m her daughter and sometimes
knows that she loves me, but rarely all those things at once.<span style="mso-spacerun: yes;"> </span>I am lucky to have that much.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUkCHz4Rt6BioCbCINY3eGYk5ENTU8CYbk4u5qciaYCmurhtIT5ZEW-VExENMZdUgvN0lfyqV3Y31YgaL-o0vm-bBjaHKP5e-NO2WeDacRvKeZ9ZKPpeeCwdf2DRzJyxEcMEv4yO6IH04/s1600/Glenys+%2526+MIng%252C+Beaumaris+2006+edit.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="220" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUkCHz4Rt6BioCbCINY3eGYk5ENTU8CYbk4u5qciaYCmurhtIT5ZEW-VExENMZdUgvN0lfyqV3Y31YgaL-o0vm-bBjaHKP5e-NO2WeDacRvKeZ9ZKPpeeCwdf2DRzJyxEcMEv4yO6IH04/s320/Glenys+%2526+MIng%252C+Beaumaris+2006+edit.jpg" width="320" /></span></a></div>
<span style="font-family: Verdana, sans-serif;">But I have realised that
she no longer <i style="mso-bidi-font-style: normal;">knows me</i> in the deeper
sense.<span style="mso-spacerun: yes;"> </span>As she will sometimes say
herself, she “knows nothing about me”: how old I am, where I live, what I’ve
done for a living, if I’m married or have children.<span style="mso-spacerun: yes;"> </span>She doesn’t know what clothes or perfume I
like, what food l enjoy, what matters most to me – even what <i style="mso-bidi-font-style: normal;">kind</i> of person I am.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">When I visit her now, she
will usually accept my presence without question and speak to me in a way that
assumes we are familiar, as if taking up where we left off.<span style="mso-spacerun: yes;"> </span>So long as I keep the chat to a minimum or on
neutral ground, we have the <i style="mso-bidi-font-style: normal;">illusion</i>
of intimacy; but if ever I stray to something specific about our lives, it’s
all too apparent that mum has no idea what I’m talking about.<span style="mso-spacerun: yes;"> </span>I feel a distance between us – a knock on a
door that cannot be answered. “Remind me again, who are you in relation to
me?”, she said a couple of weeks ago, as I was leaving after a whole afternoon
in her company.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The photographs here are
just a tiny fraction of the images of our shared lifetime that I carry in my
head. Mum would have no idea of the relationship between the first and the last
or any in between; she would not be able to recognise them as herself and me.<span style="mso-spacerun: yes;"> </span>And I’m afraid none of them is in her
head.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">How do I know she doesn’t
really know me, if she acts as if she does?<span style="mso-spacerun: yes;">
</span>By her lack of interest in, or concern for, the person who visits.<span style="mso-spacerun: yes;"> </span>I know she loves her daughter; so if she knew
that person <i style="mso-bidi-font-style: normal;">was</i> her daughter, she
would care.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com4tag:blogger.com,1999:blog-3254078482490768003.post-61500105973861524002014-11-12T19:57:00.002+00:002021-03-08T11:58:41.229+00:00Women's Identity: Who Cares?<div class="MsoNormal">
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<span style="font-family: verdana;"><a href="http://www.alzheimers.org.uk/infographic">Two thirds of people living with dementia in the UK are women</a>, as are the majority of dementia carers, both family and professional. It's an issue that <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/social-care-womens-issue_27.html">affects women disproportionately</a>.</span></div>
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<span style="font-family: verdana;">In summer 2014 I took part as an interviewee in <a href="https://www.jrf.org.uk/report/dementia-through-eyes-women">Dementia: Through the Eyes of Women</a> (a project funded by the <a href="http://www.jrf.org.uk/">Joseph Rowntree Foundation</a> and run by <a href="http://www.innovationsindementia.org.uk/">Innovations in Dementia</a> and the <a href="http://www.york.ac.uk/inst/spru/">Social Policy Research Unit at the University of York</a>), which examined women's experiences of dementia in the wider social, cultural, and emotional sense.</span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif">I was invited to speak at the launch of the booklet (written by <a href="https://www.theguardian.com/society/2017/jul/14/helen-cadbury-obituary">Helen Cadbury</a> with photography by <a href="http://ellyross.wordpress.com/">Eloise Ross</a>), which aimed to spark debate and raise awareness of these often hidden stories.</span><span face=""verdana" , sans-serif"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmvflSCLQvoLRZLyLT_nuYPT4R4w5P9fYkmZ5pKmYuFKWX3pIlJqkh2h85zNLiB2dJZR3EAn0BbYlaWSO2__h2IaEGU3GUm0h_rOVqQU8dCzoSxA0uLcPVsub86CV-7SwpcoN4VeIRggE/s1600/Glenys+%2526+MIng+Evesham+copy.jpeg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: verdana;"><img border="0" height="311" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmvflSCLQvoLRZLyLT_nuYPT4R4w5P9fYkmZ5pKmYuFKWX3pIlJqkh2h85zNLiB2dJZR3EAn0BbYlaWSO2__h2IaEGU3GUm0h_rOVqQU8dCzoSxA0uLcPVsub86CV-7SwpcoN4VeIRggE/s320/Glenys+%2526+MIng+Evesham+copy.jpeg" width="320" /></span></a></div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span>For me the greatest
tragedy of dementia is its effect on <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/03/knowing-me-knowing-you.html">identity and relationships</a>. </span><span>And I would suggest that
society more readily grasps the loss of identity experienced by men – living
with dementia or in a caring role - because it equates the man</span></span><span>’s self with his </span><b>public </b><span>role: doctor, engineer, lawyer,
sportsman, driver, head teacher, famous author.</span><span face=""verdana" , sans-serif"> </span><span>Something active and respected, the loss of
which is </span><b>visible</b><span> to the outside
world.</span></span></div>
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<span style="font-family: verdana;">Of course there are women
in these same public roles today, and maybe by the time they and their children
have aged, <b style="mso-bidi-font-weight: normal;">expectations</b> will be more
equal; but older women already living with dementia now (and their female
carers) are less likely to be identified by public status than their husbands,
brothers, or fathers.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">Read any news headline and a woman is still more likely to be described as “wife and mother, 32”
or “grandmother of four”, regardless of profession and interests. Unless, of course, she’s a sex worker – which will be deemed worthy of mention, if
she’s a victim of violent crime.<o:p></o:p></span></div>
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<span style="font-family: verdana;">In 2013, there was an
outcry on social media when the <a href="http://www.newyorker.com/news/amy-davidson/yvonne-brill-and-the-beef-stroganoff-illusion">New York Times</a> published an obituary with the
opener: <o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4sSw60PG1TJOifEU0iVXwOMOaC0u0brk78wUzzuegBB5fnMDZmGFuJ61qvcfTNa40Bk8ESWoKnBwgZdLKQhC9eZ11k2hloV1aOLEbqaWxMPNKZzOIQS9WA9ATi6T5UzJybP8y2fhFD20/s1600/Glenys%252C+Jean+%2526+friend%252C+eating+ice+cream+copy.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4sSw60PG1TJOifEU0iVXwOMOaC0u0brk78wUzzuegBB5fnMDZmGFuJ61qvcfTNa40Bk8ESWoKnBwgZdLKQhC9eZ11k2hloV1aOLEbqaWxMPNKZzOIQS9WA9ATi6T5UzJybP8y2fhFD20/s200/Glenys%252C+Jean+%2526+friend%252C+eating+ice+cream+copy.jpg" width="180" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: verdana; font-size: xx-small;">Mum (right) with her friend, <br />Jean</span></td></tr>
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<span style="font-family: verdana;">“She made a mean beef
stroganoff, followed her husband from job to job, and took eight years off from
work to raise three children. ‘The world’s best mom’, her son Matthew
said.<span style="mso-spacerun: yes;"> </span>But <a href="http://en.wikipedia.org/wiki/Yvonne_Brill">Yvonne Brill</a>, who died on
Wednesday at 88 in Princeton New Jersey, was <i style="mso-bidi-font-style: normal;">also</i> [my italics] a brilliant rocket scientist…”<o:p></o:p></span></div>
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<span style="font-family: verdana;">The following year, <a href="http://en.wikipedia.org/wiki/Amal_Clooney">Amal Alamuddin</a> was feted in the media, not for her achievements as a top
international human rights lawyer, but for marrying George Clooney – and, of
course, for losing weight. </span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif">Around that time, <a href="http://www.imdb.com/name/nm0005139/">Mike Leigh</a>'s film, <a href="http://www.imdb.com/title/tt2473794/combined">Mr Turner</a>, opened, in which Timothy Spall gives a bravura
performance as the celebrated painter.<span style="mso-spacerun: yes;">
</span>Like <a href="http://www.imdb.com/title/tt1700845/combined">The Invisible Woman</a>, <a href="http://www.imdb.com/name/nm0604448/">Abi Morgan</a>’s adaptation of <a href="http://literature.britishcouncil.org/claire-tomalin">Claire Tomalin</a>’s
book about the relationship between Charles Dickens and the young actress Nelly
Ternan, 'Mr Turner' shows that male genius is often achieved at the expense of
female sacrifice.<span style="mso-spacerun: yes;"> </span>It’s a familiar image:
the driven artist or pioneering scientist, feverishly toiling in his studio,
laboratory, or office, while his wife or lover brings him a drink, tidies the
house, and keeps the children and creditors at bay.</span><br />
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<span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYO2DkvHlPoKDup5__rAL0omZJTUiRTsCpHLHoMeypHAs-LVsMb_dOk-rfaSDTZyJ9OSs9CntYxUxclaJr9OcDXzA6S5nKzksKknKi4hOnCdFpzHoBKmcVkXerNM_G0QpnaRGT8X6WbeI/s1600/Glenys+Painswick+001+copy.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYO2DkvHlPoKDup5__rAL0omZJTUiRTsCpHLHoMeypHAs-LVsMb_dOk-rfaSDTZyJ9OSs9CntYxUxclaJr9OcDXzA6S5nKzksKknKi4hOnCdFpzHoBKmcVkXerNM_G0QpnaRGT8X6WbeI/s200/Glenys+Painswick+001+copy.jpg" width="189" /></a></span></div>
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<span style="font-family: verdana;">Now intellectually we
know this is an outmoded stereotype; we know women <b style="mso-bidi-font-weight: normal;">can </b>do these things too and some most certainly do.<span style="mso-spacerun: yes;"> </span>But
on an emotional level, we still largely expect women to be the nurturers, the
“supporting cast”.<span style="mso-spacerun: yes;"> </span>Their identity, <b style="mso-bidi-font-weight: normal;">in the public consciousness</b> is not
autonomous - even if they are high-achievers - but bound up with those they care for.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWfPs5bXVU4Hv1uhxLS-2H04U5w6X3pMFgdaWk6jQpEYu1mULQxmXGDXcwJSgAaR-cTsHzobXOx2Hj1gBLOMbCwaewiqTIrgKaaDYh6h7rJFxlwAi38QSaRr8GuVxn3QkkOPyMvfNevh0/s1600/Glenys+in+evening+dress.jpeg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWfPs5bXVU4Hv1uhxLS-2H04U5w6X3pMFgdaWk6jQpEYu1mULQxmXGDXcwJSgAaR-cTsHzobXOx2Hj1gBLOMbCwaewiqTIrgKaaDYh6h7rJFxlwAi38QSaRr8GuVxn3QkkOPyMvfNevh0/s200/Glenys+in+evening+dress.jpeg" width="141" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: verdana; font-size: xx-small;">Mum, backstage at <br />Manchester Belle Vue</span></td></tr>
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<span style="font-family: verdana;">So when a woman begins to
lose her faculties or starts to withdraw from professional life to care for someone
else, it may pass without much notice.<o:p></o:p></span></div>
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<span style="font-family: verdana;">Coverage of dementia in
news stories and government edicts usually focuses on financial constraints:
working hours lost to the economy, the cost to the NHS.<span style="mso-spacerun: yes;"> </span>These are tangible things that affect the
“male” world of politics and finance.<span style="mso-spacerun: yes;">
</span>But what of the cost to the individual?<o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: verdana;">Women’s identities, the greater
bulk of their lives, are often hidden in the domestic realm, like the body of a
whale, showing no more than a dorsal fin above water.<span style="mso-spacerun: yes;"> </span>So when they begin to lose grip of who they
are, who notices? <span style="mso-spacerun: yes;"> </span>Who cares?<o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: verdana;">And if we are so much the
product of our relationships with others, what happens <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html">when shared memory erodes</a>, and those bonds too are gone?<o:p></o:p></span></div>
</div>
<div class="MsoNormal">
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
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<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">My mum was a singer, a teacher,
chatterbox, comedienne; a lover of pretty things - perfume, jewellery, music,
animals – and most of all, of me.<span style="mso-spacerun: yes;"> </span>Who
mourns the loss of all that?<span style="mso-spacerun: yes;"> </span>Only me.<span style="mso-spacerun: yes;"> </span>And who am I now, after more than a decade of watching dementia take her?<span style="mso-spacerun: yes;"> </span>Single,
childless, back to square one in my career; unknown even to the person who gave
birth to me, to whom I have devoted those years.</span><br />
</span><div class="separator" style="clear: both; text-align: center;">
</div>
</div>
<div style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span></span><br /></span>
<span face=""verdana" , sans-serif"></span></span></div>
<div style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span>Dementia is about much
more than economics.</span><span style="mso-spacerun: yes;"> </span><span>Yes, we need
policy-makers to address the many financial and professional disadvantages it
forces on women; but I hope this project – and all our collective efforts – will shine a light on the <a href="http://dementiajustaintsexy.blogspot.com/2017/05/an-act-of-remembrance.html">deeper losses of self</a> that are felt by so many women
behind closed doors.</span></span><br />
<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><span></span><br /></span>
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">Postscript: since publishing this post, I have written a play, <a href="https://www.bbc.co.uk/writersroom/scripts/radio-drama/the-things-we-never-said">The Things We Never Said</a>, which explores these issues further, through the prism of a mother/daughter relationship. S</span></span><span face=""verdana" , sans-serif">tarring </span><span face=""verdana" , sans-serif">Lia Williams and Siân Phillips, i</span><span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">t was <a href="http://www.bbc.co.uk/programmes/b08pfqqg">first broadcast</a> on BBC Radio 4 </span></span><span face=""verdana" , sans-serif">on 11 May 2017, won <a href="https://writersguild.org.uk/writers-guild-awards-winners-2018/">Best Radio Drama</a> at the Writers' Guild Awards 2018, and is available to read at <a href="https://www.bbc.co.uk/writersroom/scripts/radio-drama/the-things-we-never-said">BBCWritersroom Drama Archive</a>.</span><br /></span>
<span face=""verdana" , sans-serif"><br /></span>
<span style="font-family: "verdana";"></span></div>
</div>
Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com9tag:blogger.com,1999:blog-3254078482490768003.post-32920267970918434762014-10-29T16:02:00.000+00:002019-09-28T11:21:39.962+01:00"Truth" or "Lies"?<!--[if gte mso 9]><xml>
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<span style="font-family: "verdana" , sans-serif;">In my <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/confabulations-no-celebrations.html">previous post I discussed confabulation</a>, a lesser-known variant of delusion or hallucination, which can be
experienced by some people with dementia. The challenge these symptoms pose to
carers is how best to respond, in order to minimise distress?<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Broadly speaking, there
are three approaches:<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<span style="font-family: "verdana" , sans-serif;">Reorientation: attempting
to reassert the factual truth, to override the delusion.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<span style="font-family: "verdana" , sans-serif;">Distraction: changing the
subject or focus of attention, to make the person forget the delusion.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Collusion: accepting the
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<span style="font-family: "verdana" , sans-serif;">Any one of these
approaches may be applied at different times and in different situations with
the same person; you may find that one or other is more effective with their
personality, or in the context of a particular relationship; and there may be
no consistency – what works on one occasion may not on another, even moments
later.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;">In my experience,
reorientation is ineffective beyond the earlier stages of dementia; distraction
too can be of limited use, if the person with dementia is inclined toward
obsessiveness and cannot easily be diverted.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<span style="font-family: "verdana" , sans-serif;">There are also ethical
questions involved in each decision, either to disabuse someone of a (perhaps
comforting) delusion or to collude with their misconception; and we may
consider the significance of whether the respondent is a family member or a
professional – in whom do we place greater trust for “truthfulness”?<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;">In summer 2014 I was invited
by the <a href="http://www.mentalhealth.org.uk/">Mental Health Foundation</a> to give testimony at their inquiry,
<a href="https://www.mentalhealth.org.uk/publications/what-truth-inquiry-about-truth-and-lying-dementia-care">Dementia and Truth-Telling</a>. This was a <a href="https://www.mentalhealth.org.uk/sites/default/files/dementia-truth-inquiry-report.pdf">major study</a> into the ethics and
practicalities of responding to altered states of perception in those with
dementia. I was asked to consider a <a href="http://www.mentalhealth.org.uk/sites/default/files/Dementia%20truth%20inquiry%20lit%20review%20FINAL%20%283%29.pdf">literature review</a> commissioned by the
Foundation, to discuss the contents and make observations from my experience. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">These are my headline
points:<o:p></o:p></span></div>
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<b><span style="font-family: "verdana" , sans-serif;">“Truth” or “lies”?
<o:p></o:p></span></b></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">There is of course a wider
philosophical question, “what is truth?”, for “truth” as a concept is largely
subjective. But for our purposes here, I
use the term to mean fact: when responding to a person with altered perception,
should we assert fact or not? <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;">I would say context is key.
Acceptance of benign misconceptions can sometimes be justified, if this
acceptance allows the person with dementia to feel more content or helps them
to be compliant with necessary actions for their material good (e.g.
eating/drinking, personal hygiene, medical treatment, accepting admittance to a
place of safety, allowing responsible management of their financial affairs) –
and if such delusions are not themselves harmful or do not create material
difficulties. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">For instance, it would <b>not</b> be helpful to collude with a
delusion that a friend, family member, or tradesman has stolen from the person
with dementia or otherwise done them harm, if there is no evidential basis for
this.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Constructive collusion or “white
lies” may however be easier and more effective for professionals than for
family, because they have no shared personal history to create a knock-on
effect. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Where the carer has an
emotional investment in the veracity of what is said - a shared history and
ongoing emotional relationship with the person - the issue is much more
complex. See my post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">It's (Not) So Funny How We Don't Talk Any More</a>.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I cannot see a justified
role for <b>proactive</b> lying in daily
care – i.e. deliberately creating an untrue version of events for reasons other
than the contentment and well-being of the person with dementia. If someone is
already experiencing <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoid symptoms</a> and is generally mistrustful, it seems
doubly important to me not to give them any cause for justified mistrust, if
this can possibly be avoided. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">For that reason, my own
approach is largely to be <b>reactive</b>
to my mum’s beliefs and expressed thoughts, rather than proactive. If she asks
me a direct question, I try to be as truthful as possible, while perhaps
omitting or steering her away from the more distressing details of that
truth. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">For instance, if she asks
where “Daddy” is (either my father or hers), I will say “he’s not with us any
more” and hope she will leave it at that. If she goes on to say, “He’s not
dead, is he?”, I will say yes, but in as low-key a way as possible. I will not
proactively “remind” her, nor make a big deal of her having forgotten, nor go
into any details unless asked, as that is likely to distress.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I generally try to accept
whatever she believes in the moment, unless it has a negative result for
someone else – e.g. an accusation of wrong-doing against an innocent party
(myself included).</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana";">Emotion is more memorable than fact.</span></b><span style="font-family: "verdana";"> <o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana";">Dementia erodes a person’s
capacity for reason, logic, and factual memory. Emotion is what remains. Therefore,
a person with dementia will be more likely to register an emotional impression
than the factual content of what is said or done.</span><span style="font-family: "verdana";"> </span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Negative emotions, such as
fear, anger, hurt are unfortunately more powerful than positive emotions in my
experience. My mum will remember being upset far more readily (and for longer)
than any pleasurable incident. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">So it’s more important to
me to support her in <b>feeling</b>
content, than to reinforce any factual message. Whether this involves “truth”
or “lies” will vary according to context; the <b>content </b>is relatively unimportant, as it will be instantly
forgotten – it is the <b>emotional impression
</b>(if anything) that will be retained. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana";">Powerlessness.</span></b><span style="font-family: "verdana";"><o:p></o:p></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">It’s noted in the
<a href="http://www.mentalhealth.org.uk/sites/default/files/Dementia%20truth%20inquiry%20lit%20review%20FINAL%20%283%29.pdf">Literature Review</a> (pgs 22-23) that less time is spent by carers on social
interaction than on task-based care. While I would agree that time and
resources are the main determinants here, particularly for professionals, I
would suggest that a feeling of being powerless to ameliorate mental distress
is also a factor.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Beyond a certain stage of
dementia, it seems that nothing can truly answer the fear, hurt, and loneliness
in a person’s head, because it is impossible to reason away fears, and efforts
at emotional comfort are limited by the difficulty of being unable to
acknowledge the truth of distressing life circumstances. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">Therefore the family carer
may tend to focus on practical things, as these are elements where some positive
difference can be made.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana";">Contented Dementia/Compassionate Communication:
effect on family carer.</span></b><span style="font-family: "verdana";"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">The principles of <a href="https://www.alzheimers.org.uk/info/20091/what_we_think/972/specialised_early_care_for_alzheimers_specal">contented dementia</a> and <a href="http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf">compassionate communication</a> are now routinely espoused in public
(in media, specialist literature/websites, and by some professionals), to the
extent that dissent can be perceived as unacceptable.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">These principles can
roughly be summarised in layman’s terms as: don’t ever argue with or contradict
the person with dementia; enter into their reality and accept that they can’t
enter yours.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">While I would agree that
this approach can be helpful in promoting contentment in the person with dementia,
I think the potential negative effect on the family carer is largely
unacknowledged. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">If, as the primary carer, you feel
constantly told by everyone that your reality does not matter, it can seem
tantamount to being told that <b>you</b>
don’t matter; and any distress, frustration, grief, or resentment you may feel
is selfish, ignoble, and to be stifled, because it is “bad for” the person with
dementia. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">This can be hugely
destructive to the carer’s mental (and indeed physical) health. It can lead to
the carer effectively living under similar conditions to those of domestic
abuse: e.g. always subservient, walking on eggshells for fear of upsetting the
other person, constantly censoring or modifying their own words or behaviour,
denying their own needs, isolated from wider family and friends (of whom the
other person may be jealous or mistrustful), and trapped in the house (by the
other person’s separation anxiety or paranoid fears). <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">A constant negation of the primary carer’s factual reality can lead to their feeling that they have been “erased”
from the outside world. This can be mitigated to some extent by other family
and friends supporting the carer’s “real” life; but for a sole carer in a
domestic setting, the long-term effect can be catastrophic.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I would like professionals (and lay commentators) to acknowledge these issues and consider the holistic good of both parties,
when advocating the principles of “Contented Dementia” in the home. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">See my posts,
<a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">Paranoia - and the Other Fear That Dare Not Speak Its Name</a> and <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html">A Stranger in My Home Town</a>.</span><br />
<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana" , sans-serif;"><br /></span></b>
<b><span style="font-family: "verdana" , sans-serif;">Environmental "Lies"*.</span></b></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><b><br /></b></span>
<span style="font-family: "verdana" , sans-serif;">In recent years, artificial <a href="http://www.telegraph.co.uk/news/health/elder/9548328/A-welcome-trip-down-Memory-Lane.html">retro environments</a> have become fashionable in some care homes and developments. I can see that it's a positive approach to try to accommodate and support the perceptions of the resident; and artefacts from the time of a person's youth may create a familiar ambience and trigger memory for some people some of the time. </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">But I'd beware of investing too much (effort, faith, and finance) in such things, as they can become <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">management gimmicks</a>, not truly responsive person-centred care - which primarily requires human interaction. A "one-size" time-zone (e.g. 1950s street) is unlikely to chime with the mindset of all the residents all of the time - there may be a range of ages within a residential group, and even for the individual, different eras may be important (or conversely meaningless or disturbing) at differing stages of their condition. And <a href="http://dementiajustaintsexy.blogspot.co.uk/2016/08/five-star-hotel-five-star-care-part-4.html">how often can a home afford to update decorative features</a> in response to changing social needs, when most now struggle to meet daily running costs? </span></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">Given how hard it is to second-guess a person's internal reality in the moment, it's really not possible to create a consistent (and future-proofed) "alternative reality" that will answer all the confusions and insecurities attendant on dementia; and a fake environment, however well meant, is fundamentally dishonest.</span></span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><b><span style="font-family: "verdana" , sans-serif;"><a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">My Biggest Lie.</a></span></b></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">I have said that I don’t
proactively lie, only “collude” or lie by omission when necessary for mum’s
peace of mind. But there was one very big exception, which posed a terrible
dilemma for me. I’ll return to that in
<a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">another post</a>…<o:p></o:p></span><br />
<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">* This point added in March 2017.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
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<br /></div>
<!--EndFragment-->Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com4tag:blogger.com,1999:blog-3254078482490768003.post-54819698747047594732014-10-24T22:00:00.003+01:002021-01-05T12:24:17.050+00:00Confabulations, No Celebrations<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><a href="https://www.verywellmind.com/confabulation-definition-examples-and-treatments-4177450">Confabulation.</a> Sounds like
a hybrid word, doesn’t it, like “fantabulous” or “ginormous”? And indeed it is
a hybrid – of fact and fiction. If you haven’t heard of it as a term, you’re not alone; but
if you care for someone with dementia, you may recognise it in action. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">I’m not a medic or
scientist, so I’ll describe as a layman how I understand the difference
between three related symptoms of some types of dementia: hallucination,
delusion, and confabulation.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">We may be more familiar
with the first two:<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Hallucination – seeing, hearing, or smelling things that are not there.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Delusion – believing
things that are not true or misinterpreting information.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">While these two states can
be very disturbing for both the person with dementia and those around them,
they are reasonably straightforward to grasp. Others can tell at once if there is,
or is not, “a man in clerical robes” or “a big fat bottom!” at the end of the
bed, or a woman whispering in the wall.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Delusions, such as a belief
that a dead relative is still alive, can be harder to handle, but the factual
truth can be determined.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><a href="http://en.wikipedia.org/wiki/Confabulation">Confabulation</a>, however, is
a complex amalgam of fact and fantasy, in which a false narrative may
involuntarily be created by a person’s belief that an imagined scenario is
memory.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">This imagined scenario
will usually be woven around a kernel of truth: an event that actually
happened, transposed to a different time and place, or involving a different
set of characters; or an emotional trauma that was real, but misremembered in a
different context.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">And because there is an
element of veracity at the heart of it and it may contain mundane, inconsequential
detail as well as major incident, such a hybrid narrative may be very hard for
the carer or other friends and relatives to unravel.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal">
</div>
<div style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><span>For instance, my mum was a
professional singer in her youth. I know that on several occasions she studied at
the famous </span><a href="http://en.wikipedia.org/wiki/Dartington_International_Summer_School">International Summer School of Music</a><span> at Dartington Hall in Devon. This
is her treasured photograph of the composer <a href="https://en.wikipedia.org/wiki/Igor_Stravinsky">Stravinsky</a> (right), taken on <a href="https://www.dartington.org/about/our-history/summer-school/">one of those visits in the 1950s</a>.</span></span><br />
<span face=""verdana" , sans-serif"><br /></span>
<br />
</span><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5n7nCp44Ps2b4d9loHbSdHERFUnpaGcdSpNwR0vU8Z51xDlAZfZ7ZkuPQcqO7s0j1LcGzJTZctectQJC0KYeuhQbMHKmojMkAHOMM6Cx6ZrFqQ1BFdTFMQnRI_UdS6pp_LoLkuMhA_kg/s1600/Dartington+Stravinsky+001.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: verdana;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5n7nCp44Ps2b4d9loHbSdHERFUnpaGcdSpNwR0vU8Z51xDlAZfZ7ZkuPQcqO7s0j1LcGzJTZctectQJC0KYeuhQbMHKmojMkAHOMM6Cx6ZrFqQ1BFdTFMQnRI_UdS6pp_LoLkuMhA_kg/s320/Dartington+Stravinsky+001.jpg" width="215" /></span></a></div>
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">At around that time, she also attended the
<a href="https://international-eisteddfod.co.uk">International Eisteddfod</a> at Llangollen in North Wales. That’s a fact. </span><span>But in latter years, she
began to tell me that she had been present to see the tenor Pavarotti “make his
name” there. Now Pavarotti did perform at Llangollen in 1955 – in a choir with
his father. The choir won first prize in competition. Pavarotti later gave many
</span><a href="http://news.bbc.co.uk/1/hi/wales/north_east/6981188.stm">interviews</a><span> in which he credited this as a formative experience that inspired
him to pursue a singing career.</span><span face=""verdana" , sans-serif"> </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">But he was only 19 at that
time and had yet to make his professional operatic debut; he would not have
been noted individually. Yet my mum was adamant that she had not only been
aware of him as a soloist, but that the performance had made him a star; and
she had seen it happen.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Then in 2007 a cousin of
mine, whom neither of us had previously met, came from abroad to stay with me for
a few days on the way to a friend’s wedding. I had planned to take her to visit
mum too and see the countryside around my hometown; but in the event there were
terrible floods, and the water supply at mum’s was cut off for nearly two
weeks. I couldn’t take my cousin there after all. Mum, however, would later
talk about this visit as if she had not only met my cousin herself, but had
hosted the entire stay. Her “memory” of this was based solely on what I had
told her of things <i style="mso-bidi-font-style: normal;">I</i> had done with my
relative.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Another time, I went into
hospital for major surgery and was anxious about mum in my absence; the surgeon
kindly called her from the recovery room to let her know I was all right. Mum
was subsequently convinced that she had actually met the surgeon, describing in
great detail what she had looked like and where they had met (“on the stairs”),
despite this being a complete fantasy.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDuW-DyuhBZ4_L3p-kqFwsQdY5ZDdeaUNnKKXXi_ZNL5LHzG0XOo_08U_8xnTDvUwLgXdV9RghCZpwt8IFFXqMWy0iSvc5YZXmwL0p6GIZZKienbp28i7tJcCgiL28wvb647qJ5pd6Hp4/s1600/Glenys+-+singing+brochure+001+edit+copy.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" data-original-height="1024" data-original-width="785" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDuW-DyuhBZ4_L3p-kqFwsQdY5ZDdeaUNnKKXXi_ZNL5LHzG0XOo_08U_8xnTDvUwLgXdV9RghCZpwt8IFFXqMWy0iSvc5YZXmwL0p6GIZZKienbp28i7tJcCgiL28wvb647qJ5pd6Hp4/s320/Glenys+-+singing+brochure+001+edit+copy.jpg" width="245" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: verdana; font-size: xx-small;">Mum, in her singing days</span></td></tr>
</tbody></table>
<span style="font-family: verdana;">She also told a friend
that she had “been up to Ming’s; I didn’t go in, I just stood outside and
looked up at her flat” – an account which greatly alarmed the friend, as mum
was by then too frail to make such a long journey on her own and I was in any
case not at home. Yet mum’s tale had sounded so plausible that her worried
friend had called me to check whether it might indeed have been true. It was
not; but another friend <b style="mso-bidi-font-weight: normal;">had</b> brought
mum to visit me <i style="mso-bidi-font-style: normal;">at the hospital </i>a few
days after the operation<i style="mso-bidi-font-style: normal;">. </i>The surgeon
had been in to check on me earlier that morning (long before mum had arrived) and
I had mentioned this. So you can see where the seeds of mum’s hybrid story were
sown...<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Now you may say, what’s
the problem? These are all fairly innocuous confusions; it doesn’t matter if
they’re not true.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">And with examples like
this, I agree that there’s no gain in trying to point out anomalies or assert the
factual version; contradiction will only provoke distress.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">But other confabulations
may not be so benign. I have detailed in <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">an earlier post</a> a particularly
traumatic incident where mum believed that a tradesman had broken into her house
and was holding me hostage. It was of course a terrible delusion, but those to
whom she told this story had no way of knowing at first that it was wholly imagined.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Similarly, she once told
me, when she herself was in hospital after a fall, that she had been down the
stairs (the ward was on the 11<sup>th</sup> or 12<sup>th</sup> floor and mum is
lift phobic) and had sat in the foyer, where an orchestra had been playing; and
that she had been taken from “the bus station” (which I later recognised from
her description as the ambulance bay) to a nurse’s house, where she had been
abused.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Logically, I knew these things were all highly unlikely, if not impossible; but she believed them so
completely and vehemently that I did wonder if there might be some grain of
very confused truth.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">Such threads of
confabulation can be impossible to disentangle. The question then for
carers is how should we respond?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">That’s something I’ll
discuss in my next post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">"Truth" or "Lies"?</a>…<o:p></o:p></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com0tag:blogger.com,1999:blog-3254078482490768003.post-84738050979691192862014-05-25T01:26:00.000+01:002016-09-09T23:37:25.508+01:00I Don't Know Who You Are<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The day had started well. A
jewel-bright morning of azure sky and fields fluorescent with yellow oilseed
rape, as I made the two-and-a-half hour journey down to see mum. I stopped off
as usual at the M&S garage shop, to stock up on flowers, a newspaper, and
wine for her meals in the care home. Worried that she’d been eating less in
recent weeks, I tried to think of something with which I could tempt her, but
the sweet goods that had once been her favourites seemed pointless now that she
was even turning down freshly-baked cakes and desserts in the home. At Easter,
I’d taken hot cross buns, but she had waved them away with never a look.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">So when I spied a
strawberry stall by the roadside, I pulled over, pleased to have found a treat
vibrant with life from the outdoors – the lush, green countryside of our home
county that she never ventures into now. I thought of the many spring weekends
like this, when we’d have been setting off out for lunch together at some
village inn or wine bar in the town centre, where we’d sit under big umbrellas
on the pavement and watch the world go by, eating fish and chips or a Sunday
roast with a glass or two of wine… <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiHSW7w1An18ptqPuzPqt8XQCYnIe470dutQqsU1skmV_YThF1Jl2AmfzMfMVbM8CRCbqYdzGP3BdqkHSa0LX77eugV-Wcb_w5iWSjqKLDZNNHZSXVjFM0a8k8GABdLzS0kORF5m_gNrk/s1600/Glenys+%2526+Ming+MP+Wine+Bar+edit+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiHSW7w1An18ptqPuzPqt8XQCYnIe470dutQqsU1skmV_YThF1Jl2AmfzMfMVbM8CRCbqYdzGP3BdqkHSa0LX77eugV-Wcb_w5iWSjqKLDZNNHZSXVjFM0a8k8GABdLzS0kORF5m_gNrk/s320/Glenys+%2526+Ming+MP+Wine+Bar+edit+2.jpg" width="320" /></span></a></div>
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;">Those days are gone. Only
I remember them now. </span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">But I was in light-hearted
mood. This week I’d managed to set off a bit earlier and didn’t have to rush to
make the early lunchtime at the home. Traffic was quieter too. I would have
more time to arrange the flowers in mum’s room, check her supply of toiletries,
and tidy myself up before lunch.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Mum was pleased to see me.
“I didn’t know you were coming”, she said, “that’s a lovely surprise!” It’s always a surprise, despite the fact that
I’m there, regular as clockwork, every other weekend. Mum has long since stopped
having any concept of time, so I don’t correct her or tell her when I’ll be
coming again next – only “soon”. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">When I used to visit her
at our family home, I would call ahead to tell her I was setting off in the
car. At some point, perhaps four or five years ago, I realised that despite
this accustomed call, which had been our routine since I moved to London in my
twenties, mum would always be surprised when I arrived. In the time it took me to drive there, she
had completely forgotten I was coming. Likewise, when I returned, I would call
her as usual to say I’d arrived back safely; that had been essential since I’d
left home. But latterly it meant
nothing. “Back?”, she would ask blankly. “From where?” “Your house”, I would say - to be met with
bewildered silence.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">This week, I noted that staff
had dressed her in the bright pink jumper I’d bought a few weeks ago, but had
not yet seen her wearing. It suited her and lit her up. Like me, mum chose
steak and mushroom pie for lunch (in her eyes, we must always have the same),
and managed a few mouthfuls. I was ravenous after the long drive, but tried not
to wolf mine down too fast, to encourage her to eat more. She drank her glass
of wine and seemed to be doing quite well.
<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">But suddenly she looked at
me – a sharp, searching, mistrustful look, as if some black cloud or demon had
passed behind her eyes - and I knew something in her head had changed. And then
she said it: “I don’t know who <i>you</i>
are. Why are you here?”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I choked back the shock,
tried to keep calm, show no reaction.
“I’ve come to see you”, I said. “I’m Ming. Your daughter.”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“Pfft!”, she said, with a
dismissive gesture. “You <i>look</i>
like. But you’re not.”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">It was my late father’s
birthday that day. He’s been dead for 26 years. Normally, I would never ask mum
“do you remember?” this or that; I know you’re not supposed to do that to
someone with dementia, because the answer is usually no – leading to confusion
and sense of failure. But on this
occasion I needed to know – what <i>did</i>
she recall now of our past life? So I
asked her, “Do you remember Wai? My
dad?” “Of course I do!”, she said,
outraged. “Stupid!”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I focused on my meal. She
had stopped eating hers and would not be persuaded to try any more; she started
to mess it all up. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“Dreadful!”, she exclaimed
in disgust. “Dreadful!!” <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“What’s dreadful?” <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“Me! This!
Here! What I’ve become.”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">And I couldn’t hold it
together. How could it be that she didn’t know who I was, yet was lucid enough for once to know that she was somewhere she didn’t want to
be, because something “dreadful” had happened to her? She’s had <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html">no context for where she lives</a> for years. Not since
she’s been <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">in residential care</a> – nor for some considerable time before that,
when she had <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">stopped recognising her own home and was desperately frightened by it</a>. Yet now, in this moment, she somehow knew what she’d “become”. And grieved
for it, just as I do.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I fled to her room, as
discreetly as I could; and only when the door was shut, a corridor away, did I
allow the tears to come. Kind staff followed to comfort me. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I asked them to carry on
serving mum dessert, as she’d be more likely to eat that, I thought. And when
I’d gathered myself, I went back into the lounge. Mum was oblivious that
anything had happened, although her mood was hardly better. She stubbornly and
silently refused her favourite meringue, so I tried her with the
strawberries. Miraculously, she accepted
one or two. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">And slowly, over the next
few hours, as I sat with her “watching” TV, we regained some equilibrium. By the time I left, she knew that I was
“Ming”, that I was her daughter, and that she loved me – although how far she
can put those three ideas together I’m not sure any more.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">It’s been several years
since she’s really known who I am in context: that I’m her daughter, I’m in my
forties; I’m not married and have no children; I live in London; I’ve been a
writer of TV drama, and I’ve been looking after her. Sometimes she thinks I
have a “sister” (I don’t). I believe this is her memory of me as a sweet, pretty,
vivacious young woman, the “Ming” she really loves, from the life we’ve both
had to leave behind; whereas the person who visits her now is a tired, dowdy,
middle-aged woman <i>called</i> Ming, but
someone else. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">It is generally known that
there may come a time when a person with dementia <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/03/knowing-me-knowing-you.html">does not recognise </a>his or her
own closest family. This is sometimes perceived as a sad but benign stage of
“blissful ignorance” before the end, like a gentle drift into sleep. Maybe
that’s how it is for some. But not for my mum.
<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I understood that she hadn’t
“known” me, as the real person I am now, for a long time. But this was the
first time she’d said so baldly to my face that she didn’t know me at all; and
what upset me more was that it wasn’t just non-recognition, but hostile,
dismissive, full of active contempt. There was hatred in her eyes.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2PvHXiZyVbo6kLGr2HAlch4ts4vibcoDbIHBhR7YcTzvyejT08xD16bM6tNsGfzyGOqG27g4mbkDMzQz3WuZc7epi5sRGZeZprGpPxd3pqfrdcDDIodG3NkC0SJ1kMW5q_fIEFqLKbc/s1600/Glenys,+Mill+Inn+Withington,+1990s+001+edit.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2PvHXiZyVbo6kLGr2HAlch4ts4vibcoDbIHBhR7YcTzvyejT08xD16bM6tNsGfzyGOqG27g4mbkDMzQz3WuZc7epi5sRGZeZprGpPxd3pqfrdcDDIodG3NkC0SJ1kMW5q_fIEFqLKbc/s1600/Glenys,+Mill+Inn+Withington,+1990s+001+edit.jpg" width="248" /></span></a></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">This is my lovely mum, as I best remember her, in the 1990s, before dementia took its hold.
It was taken on one of our many happy pub lunch outings.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">It is inconceivable that
the mum in this photo would ever look at me with hate or contempt; that she
would ever deny me. But as she is now, she does. Not always, thankfully, or
permanently as yet. There is still enough of her real self flickering within;
but I know that will diminish. Each time I visit, I dread the moment when she
<a href="http://dementiajustaintsexy.blogspot.co.uk/2015/03/knowing-me-knowing-you.html">looks at me as a stranger</a> and that recall doesn’t come back.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana;">I’m not a religious
person, but I can see why the Biblical idea of being “thrice denied” is so
powerful. It’s an act of rejection – betrayal – by the person who had previously
been closest, most loyal. I’m not drawing comparison with Christ here; but on
an emotional level, denial by a loved one with dementia is that ultimate hurt
for family. Particularly when that loved one is the only family you have left,
the one who loved you most – or perhaps the </span><i style="font-family: Verdana;">only</i><span style="font-family: Verdana;">
one who loved you, to whom you have devoted your life.</span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana;">Of course, they are not
wilfully rejecting you, but are perhaps <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">frightened themselves</a> of not knowing
who </span><i style="font-family: Verdana;">they</i><span style="font-family: Verdana;"> are and scared to find "strangers" around them. But understanding that
doesn’t make it hurt any less. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">There were times in recent
years when I broke down in despair at the situation mum and I shared; although
I tried not to let her see how upset I was, there was a part of me that <i>wanted</i> her to see, to be moved by it, to
show me she still cared. Yet she would watch me cry in a detached, almost
anthropological way – like a scientist examining a subject. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The last night we spent
together in our family home, <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-2.html">the night before I took her into care</a>, she found
me curled up, sobbing on my bed. She stood and looked on from the doorway for a
few moments, not exactly upset, but vaguely disturbed. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">“Why are you crying?”, she
asked. I couldn’t reply: it was too
huge. “Come on!”, she said, “stop that
now.” I couldn’t. “I love you, as if you were my own daughter.” <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">‘As if?’ ‘<i>As if…?</i>’ Then who did she think I was? That was in
2011.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">The day before last week’s
incident in the care home, when mum had said “I don’t know who you are”, I had
been <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/not-beige-cardigan.html">speaking at the Alzheimer's Show</a> in London; I had also sat on a Question Time Panel alongside Jeremy Hughes, CEO of the UK Alzheimer’s Society and Baroness
Greengross, Chair of the All-Party Parliamentary Group on Dementia, among other
experts in the field.<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Afterwards, I met two
ladies, who expressed surprise to find me queuing with them for the loos. “We
just saw you on that panel”, one of them said, “I’d have thought you’d have
somewhere special to go.” No, I
explained, we all have to go in the same place. That strikes me as a good analogy: where dementia is concerned, there <i>are</i> no V.I.P. toilets. We are all in the
same queue…<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">Anyone who saw me speak
that day might have thought that I had come to terms with my mum’s dementia,
that I’d “got it sorted”. But the truth
is none of us has. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">We learn to accommodate it
on a practical level, to accept it intellectually. But emotion can never be
wholly tamed; those moments, when the person you love most in the whole world
says they don’t know who you are, can still floor you, however much control you
think you’ve gained. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">I’m glad there’s far more
dementia awareness now – initiatives such as <a href="https://www.dementiafriends.org.uk/">Dementia Friends</a> to teach the public
the basics, and much good work being done in professional dementia care. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">But my final thought to
policy-makers, media, and professionals at the end of Dementia Awareness Week
2014 is please, never forget how it <i>feels</i>. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: Verdana, sans-serif;">For families, it never
stops hurting. And sometimes the only honest response is to flee into another
room and simply bawl your heart out. <o:p></o:p></span></div>
<!--EndFragment--><span style="font-family: Verdana, sans-serif;"><span style="font-family: Verdana, sans-serif;"><br /></span>
</span><br />
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com4tag:blogger.com,1999:blog-3254078482490768003.post-62429164334575691722014-05-18T19:15:00.000+01:002019-05-30T12:37:43.814+01:00Not the Beige Cardigan<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
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<span style="font-family: "verdana" , sans-serif;"><i><a href="https://www.dementiaaction.org.uk/carers">Dementia Action Alliance Carers' Call to Action</a>* was a UK campaign that aimed to highlight the particular needs of dementia carers and recognise their rights; I was a member. Along with a number of other family carers, I was invited to speak at the 2014 <a href="http://alzheimersshow.co.uk/london/alzheimers-talks-theatre/">Alzheimer's Show</a> at the Olympia in London and share my personal story to illustrate the need for the five key aims to be met. </i></span></div>
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<span style="font-family: "verdana" , sans-serif;"><i>So why do dementia carers need special recognition? Because, despite much greater awareness of dementia in the media, there remains widespread lack of understanding that it’s <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">not just a bit of dotty forgetfulness</a>, but a degenerative, <b>cognitive</b> disorder that can have all-consuming long-term consequences, not just for the person who experiences it first-hand, but also for the family carer.</i></span></div>
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<span style="font-family: "verdana" , sans-serif;"><i>Below is the edited text of my Alzheimer’s Show talk of 16 May 2014. It covers some common ground with previous posts, but was aimed at a general audience at the Show; if you’re a new reader, you can find more detailed accounts of some of the stories and issues via links to my archive. (And lest anyone think this means I’ve got it sussed, see my next post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/i-dont-know-who-you-are.html">I Don't Know Who You Are</a>…)</i></span></div>
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<span style="font-family: "verdana" , sans-serif;">Some of you may know me as @Minghowriter on Twitter. I am a professional writer; I’ve written scripts for TV shows such as EastEnders and Casualty, and I’ve worked behind the scenes in drama production. </span></div>
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<span style="font-family: "verdana" , sans-serif;">But I’m here today because my mum, Glenys, who’s 87, has mixed Alzheimer’s and vascular dementia. It’s been a long journey – more than a decade of pronounced symptoms and much longer since the earliest signs. We’ve both lived with dementia for the best part of twenty years.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Mum’s now in <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">residential care</a>, where she’s been since September 2011. By that stage we were <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/11/say-unsayable.html">both at breaking point</a>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">That’s why I support the <a href="http://www.dementiaaction.org.uk/carers">Dementia Action Alliance Carers' Call to Action</a>.</span></div>
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<span style="font-family: "verdana" , sans-serif;">A bit of background: I’m an only child. My dad died in 1988, when I was a student; it’s been just mum and me since then. She was an only child too; we have no other immediate family. I moved to London when I graduated, to find work 100 miles away from my hometown. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Looking back, I think the shock of my father's death and my leaving home at around the same time triggered early symptoms of dementia: separation anxiety and disproportionate emotional responses to certain situations. So I'd say beware of traumatic life events - bereavement, accident, moving house, divorce - and don't ignore any warning signs of personality change, confusion, or unusual emotion. It may be nothing or only temporary, a normal response to upheaval, as I thought at that time; but perhaps if my mum had had bereavement counselling, those early tendencies might not have developed in her case to such a degree in subsequent years.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Mum’s true personality is outgoing, warm, and generous with a great sense of humour. She was a singer in her youth and then a teacher - a natural performer and communicator. She was always talking! We’d spend <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">at least an hour on the phone every night</a> after News at Ten; and when I was back home for weekends, we’d sit up into the early hours, watching telly in our nighties, drinking tea, just chatting about everything and nothing. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So when she began to repeat herself, back in the 1990s, it didn’t seem that odd; and yes, it increased, but the change was gradual over many years. It wasn’t an issue until it became extreme. By 2011, I realised she had literally <i>no</i> short-term memory. I couldn’t ring her up to remind her of something, because she would have forgotten before she put the phone down; and however long I’d been with her, as soon as I was out of sight, it was as if I’d never been there. Upsetting for both of us.</span></div>
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<span style="font-family: "verdana" , sans-serif;">But there were <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">other signs along the way</a>: peculiar obsessions and rituals – hiding the washing up brushes in the kitchen, for instance, because she was afraid our neighbour (two doors away) would see them and disapprove! And trying to remove a stain from the carpet, she once cut off the pile with scissors.</span></div>
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<span style="font-family: "verdana" , sans-serif;">She would take a <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">sudden, violent dislike</a> to people who had done nothing wrong – friends whom she imagined had slighted her, or workmen with whom she’d previously been on good terms. There were panic-stricken incidents of locking herself in or out of the house, being unable to remember her PIN number at the cash-point, and repeatedly losing her bank card. </span></div>
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<span style="font-family: "verdana" , sans-serif;">She started to use generic words for types of food – “white meat” or just “meat”, instead of chicken, turkey, or pork. And her <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">grasp of language</a> became very literal. Figurative expressions and jokes had to be explained. Her motor skills declined, leaving her unable to cope with food packaging or household tools. </span></div>
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<span style="font-family: "verdana" , sans-serif;">I mention these more subtle things, because I’m frustrated by the focus on dementia as <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">just a "memory problem"</a>. It’s so much more! A progressive, <i>cognitive</i> disorder, that can affect a person’s daily life in so many different ways.</span></div>
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<span style="font-family: "verdana" , sans-serif;">But on the surface, mum seemed fine; friends who saw her maybe once a week for lunch or spoke to her on the phone would not have been aware there was anything much wrong. I was the only witness to her more disturbing symptoms (often at night, when there was no-one else around) – and, crucially, she herself <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">didn't see any problem</a>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">That’s the thing with dementia - <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">lack of insight can itself be a major symptom</a>, leaving a person unaware of their own vulnerability and often hostile to intervention. </span></div>
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<span style="font-family: "verdana" , sans-serif;">That’s why <b>aim one of the Carers’ Call to Action is that dementia carers have recognition of their unique experience, due to the character of the illness</b>: like me, they may have to work under the radar or against fierce antagonism to meet their loved one’s needs. </span></div>
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<span style="font-family: "verdana" , sans-serif;">As mum’s faculties declined, I gradually assumed responsibility for the things she couldn’t manage: finances, admin, cooking, cleaning, laundry, household maintenance, appointments with doctor, dentist, optician, chiropodist, hairdresser – all crammed into my weekend visits or arranged stealthily by phone or email during the week, because mum would go berserk at any suggestion that she was less than 100% independent. “I’ve got all my marbles, you know!”, she would often say to me. </span></div>
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<span style="font-family: "verdana" , sans-serif;">And in the meantime, my career fell by the wayside. I was still technically “available for work”; but as a freelance, with no office hours, I found that my days were increasingly taken up with emergencies at mum’s and I simply fell out of circulation. Mum had no idea.</span></div>
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<span style="font-family: "verdana" , sans-serif;">I tried to persuade her to accept at least a bit of paid domestic help; but she refused even a weekly cleaner, let alone any kind of personal care. </span></div>
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<span style="font-family: "verdana" , sans-serif;">But in 2009, I needed major surgery and was unable to drive for 6 weeks. So I called her GP. I’d spoken to him privately before; but without mum’s co-operation, we both felt powerless to act. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Now I asked for health visitors from the surgery’s Older Adult Nursing Team to look in on mum more often during my absence. Friends and neighbours rallied round in practical terms; but I was frustrated that the health visitors couldn’t see the symptoms that were so clear to me. Of course, I understand why. </span></div>
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<span style="font-family: "verdana" , sans-serif;">They would pop in for twenty minutes once in a while, and (if she let them in at all) mum would chat to them quite normally. Even now that she’s in a dementia nursing unit, she’s still quite articulate. But articulacy can co-exist with quite severe cognitive malfunction. She’d always been a good talker. How were those nurses to know that almost everything she said was factually untrue? They didn’t have the facts to compare. </span></div>
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<span style="font-family: "verdana" , sans-serif;">If mum told them that she had eaten three meals that day, had no problem getting up and down stairs and had a bath every week, that she did all her own washing, shopping, and cleaning, she wasn’t lying. That’s what she genuinely believed. And if she told them she hadn’t seen her daughter for months – well, they could see that she was sad…</span></div>
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<span style="font-family: "verdana" , sans-serif;">In fact, apart from those weeks convalescing from surgery, I was there at least every other weekend from Friday to Monday, and we spoke on the phone every day; and despite having both a bath-lift and a stair-lift, mum was unable to use either even with help, and had completely stopped bathing. But how were professionals to know? Only by talking to me. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Aim two of the Carers’ Call to Action: family carers of people with dementia are recognised as essential partners in care. </b></span></div>
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<span style="font-family: "verdana" , sans-serif;">The GP finally referred her to social services. She was assigned a social worker, an occupational therapist, and a clinical psychiatrist from the Community Mental Health Team. All these people had to visit her at home, pretending to be “health visitors from the surgery”, in order for mum to accept them; even then she generally rejected their efforts. </span></div>
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<span style="font-family: "verdana" , sans-serif;">And the subterfuge was a terrible strain on me. I desperately longed for mum to acknowledge her needs, so that we could plan for them openly together; I didn’t understand that <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">she never would or could</a>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Christmas 2010 was a turning point. That winter of terrible snow. I’d struggled to get there in blizzards, mum totally oblivious, and we were snowed in together for a week. On Boxing Day morning, I got a message on my mobile. It was mum – tearfully pleading with me to get in touch, devastated not to have seen me for ages…</span></div>
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<span style="font-family: "verdana" , sans-serif;">She was upstairs in bed; and I was downstairs in the kitchen, putting bacon under the grill. When she came down a few minutes later, she had no memory of making that call. And as the New Year went on, I realised that there were times when she <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/i-dont-know-who-you-are.html">didn't really know who I was</a>. </span></div>
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<span style="font-family: "verdana" , sans-serif;">By the summer, mum could no longer recognise her own home, where she had lived for 40 years. <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">Paranoia</a> made her constantly anxious and suspicious of me for trying to complete basic tasks, such as doing the hoovering or putting out the rubbish; she started obsessively packing bags and fleeing the house, which she thought was “an empty hotel”. </span></div>
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<span style="font-family: "verdana" , sans-serif;">And <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">one night, I got a call from the police</a>: mum had been found in distress at the house of new neighbours; she’d knocked on their door, terrified of “an intruder, who’s holding my daughter hostage – he’s going to rape her!” Of course there was no intruder. But the poor neighbours, who had never met her before, didn’t know that; they had called the police, thinking this terrible crime was actually taking place. </span></div>
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<span style="font-family: "verdana" , sans-serif;">All year, the social worker had been telling me that I needed to find residential care for mum; it was the thing I’d most dreaded all my life and had done everything to avoid. But now I knew I couldn’t keep mum safe on my own twenty-four hours a day. She couldn’t be left alone for even a minute; we were both prisoners of her fears.</span></div>
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<span style="font-family: "verdana" , sans-serif;"><a href="http://dementiajustaintsexy.blogspot.com/2016/08/five-star-hotel-five-star-care-part-1.html">Finding the right residential care is another story</a>. But we were extremely lucky to get a place in a good specialist unit. </span></div>
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<span style="font-family: "verdana" , sans-serif;"><a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-2.html">The week I took mum there, on my own, was the worst of my life</a>. But I know that she wouldn’t be alive today if I hadn’t done that. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So I’m incensed when I read <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html">statements from politicians</a> saying that families should just “try a bit harder” and care for their loved ones at home, instead of “‘dumping them’ in care”. I don’t think anyone who says that can have any real idea of the years of anguish that most of us go through before we get to that point, or the intense level of need experienced by people with advanced dementia.</span></div>
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<span style="font-family: "verdana" , sans-serif;">As carers, we want to preserve the dignity of those we care for, so <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/11/say-unsayable.html">we tend to shy away from complaining</a> or being explicit about behavioural problems: we don’t want to talk about double incontinence, paranoia, or aggression. </span></div>
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<span style="font-family: "verdana" , sans-serif;">But now I think we have to <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html">be honest about the practicalities and the emotional impact of caring</a>, if policy-makers and the wider public are to understand what we face every day and acknowledge our needs too; and if those who follow the same path are not to feel that they’re failing if they can’t “live well with dementia”.</span></div>
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<span style="font-family: "verdana" , sans-serif;">I couldn’t be here with you today, if mum were not in <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/whose-low-expectations.html">residential care</a>. During the years when she was still at home, I knew nothing about dementia services or events like this, because I didn’t have the time or energy to find out. Every day was one long challenge of firefighting <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">crises</a>. We were on our own. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So I’d like professionals to reach out, to meet <b>aim three of the Carers’ Call to Action: that family carers have access to expertise in dementia care for information, advice, and support.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;">It was only through the <a href="https://forum.alzheimers.org.uk/">Alzheimer's Society Talking Point Forum</a>, websites, and social media that I began to find information and support. I read blogs written by people whose experiences were just like mine. At last, I was not looking down a tunnel at our private issue, but outwards at a syndrome shared by many, who could tell me first hand what to expect and how they got through it. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So what else helped? </span></div>
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<span style="font-family: "verdana" , sans-serif;">Good neighbours, a retired police couple, who supported us both in numerous ways. They never complained when mum called them at 4.00am or asked them to climb over the gate yet again when she’d locked herself out! (It was, of course, not fair on them, but I’ll always be grateful for their generosity.)</span></div>
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<span style="font-family: "verdana" , sans-serif;">Counselling, for a couple of short periods when I was at my most desperate. No-one offered it to me, because I didn’t live in the same local authority as mum, and wasn’t identified as a carer. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Hence <b>aim four of the Carers’ Call to Action: family carers should have assessments and support to maintain their own health and well-being. </b> </span></div>
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<span style="font-family: "verdana" , sans-serif;">Under the terms of the new <a href="https://www.gov.uk/government/news/government-publishes-care-bill">Care Bill</a> (now passed as the <a href="https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets">Care Act 2014</a>), carers will have a right to be identified and offered a carers’ assessment for their <b>own</b> needs; and I believe that the revised GPs’ <a href="http://www.england.nhs.uk/wp-content/uploads/2013/03/ess-dementia.pdf">Directed Enhanced Service for Dementia</a> will now have some provision to share this information between different GP surgeries, where the carer is not registered to the same practice. </span></div>
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<span style="font-family: "verdana" , sans-serif;">But in my case, I had to ask for counselling myself (privately and via my own GP). It was useful, if only to show me that what I really needed was not therapy, but practical help with mum!</span></div>
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<span style="font-family: "verdana" , sans-serif;">It was the <a href="http://www.theguardian.com/social-care-network/2015/mar/17/the-social-worker-who-changed-my-life?CMP=share_btn_tw">social worker</a>, whom I could never meet face to face, who was the greatest professional support by phone and email and put me in touch with a wonderful independent carer who helped to look after mum at home for the last few months before she needed residential care. Of all the professionals, these two had the most hands-on understanding.</span></div>
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<span style="font-family: "verdana" , sans-serif;">And ultimately, the <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/a-thankless-task.html">staff in the care home</a> helped us to make the transition. I know how lucky we are to have found a good place with good people. This should not be a lottery.</span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>Aim five of the Carers’ Call to Action: family carers should have confidence that they are able to access good quality care, support and respite services.</b></span></div>
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<span style="font-family: "verdana" , sans-serif;">Eighteen months after mum went into care, I started this blog. It’s called (Dementia Just Ain’t) Sexy, because it’s a subject increasingly in the news – but still groan-inducingly “worthy”, always illustrated by those doddery, wizened hands on a walking stick; not “sexy” for journalists or politicians. It’s not their subject of choice. But then it’s not <i>our</i> subject of choice either. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Whether you’re a person living with dementia or caring for someone who does, your life should be about more than this disease. Before it came knocking on your door, you had just as much right to be vibrant and interesting and “sexy” as anyone else. Why should that be taken away from you, on top of so much else? </span></div>
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<span style="font-family: "verdana" , sans-serif;"><b>You are not the pull-on trousers and the beige cardigan!</b></span></div>
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<span style="font-family: "verdana" , sans-serif;">In professional dementia care, there’s an awareness of the phrase “see the person”. Well, I say that goes for carers too. Professionals may sometimes see the family carer as just a ghost in the background of the “client” or “service user”. </span></div>
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<span style="font-family: "verdana" , sans-serif;">And as the carer bogged down by daily trauma, you tend to put your own needs last and can end up losing your identity. </span></div>
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<span style="font-family: "verdana" , sans-serif;">But we’re people too! With hopes, dreams, desires, and abilities beyond dementia care. We had a life of our own before, and we should still have that life after. Caring for someone else shouldn't mean losing yourself.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Hold onto that. Because we too have a right to ask: “Don’t you know who I am?”</span></div>
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<span style="font-family: "verdana" , sans-serif;">Please go online to find out more about the <a href="http://www.dementiaaction.org.uk/carers">Carers' Call to Action</a> and sign up to our shared aims to support family carers.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Thank you.</span></div>
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<span style="font-family: "verdana" , sans-serif;">*Carers' Call to Action was a time-limited campaign, which was wound down in March 2015. Its principles and campaigning activities, however, continue through a new organisation, <a href="http://www.tide.uk.net/">Tide</a>. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Update, 2019: A new specialist charity, <a href="https://dementiacarers.org.uk/">Dementia Carers Count</a>, offers support courses for family and friends dementia carers. Contact them for details.</span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com7tag:blogger.com,1999:blog-3254078482490768003.post-15547355959053985032014-04-25T15:55:00.004+01:002021-10-06T15:33:58.022+01:00Let's Get Real<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
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<span style="font-family: verdana;">Readers may have noticed that I haven’t updated my
blog in recent months.<span style="mso-spacerun: yes;"> </span>There are two
main reasons: firstly, I’m aware that many whose lives are touched by dementia
are looking for uplifting, or at least reassuring, stories; my mother’s
condition has progressed to a stage where I feel I cannot be that Pollyanna and
do not wish to discourage others. Secondly, dementia has already taken so much
of my life - practically,
emotionally, and financially - that I now have to focus on rebuilding an
involuntarily neglected career.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">But this week I read something that so incensed me,
I just had to respond.<span style="mso-spacerun: yes;"> </span>It was this interview
given by [former @May 2015] Minister of State for Justice*, Simon Hughes:<o:p></o:p></span></div>
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<span style="font-family: verdana;"><a href="https://www.telegraph.co.uk/news/health/elder/10775465/Britain-should-learn-from-Asian-and-African-immigrants-about-caring-for-elderly-says-minister.html">Britain Should Learn From Asian and African Immigrants About Caring for the Elderly</a></span></div>
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<span face=""verdana" , sans-serif"><span style="font-family: "verdana";">Now I do acknowledge that media reports sometimes take
comments out of context or misrepresent tone or intention.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">I cite the piece with those caveats.</span><span style="font-family: "verdana";"> </span><span style="font-family: "verdana";">But if this is a fair summary of Simon
Hughes’ message, I take issue with its assumptions.</span><span style="font-family: "verdana";"> </span></span></div>
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<span style="font-family: verdana;">His basic contention seems to be that elderly
people in residential care have all been “forced” there by callous relatives
who lack a sense of responsibility, “obligation” or “sacrifice”; and that those
who live alone and/or seek state support for their needs are wilfully
“neglected” by society or by family “who you would have thought would
care”.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">Furthermore, he holds up the wearisomely familiar
example of idealised “Asian or African” families, who, he contends, have a
superior culture of caring for their elderly “to the end”.<span style="mso-spacerun: yes;"> </span></span></div><div style="text-align: justify;"><span style="font-family: verdana;"><span style="mso-spacerun: yes;"><br /></span></span></div></div>
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<span style="font-family: verdana;">It may be that these are his genuine, personal
views; in which case we may consider him ill-informed, but not malign.<span style="mso-spacerun: yes;"> </span>But let’s not be disingenuous.<span style="mso-spacerun: yes;"> </span>He is a government minister**.<span style="mso-spacerun: yes;"> </span>And government continues to wrestle with the
problem of how to fund adequate<span style="mso-spacerun: yes;"> </span>- never
mind good – care for a population that increasingly lives into very old age
with a variety of high dependency needs.<span style="mso-spacerun: yes;">
</span>If families can be persuaded (or guilt-tripped) into shouldering more of
the burden, the thinking evidently goes, the state can shell out less.<o:p></o:p></span></div>
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<span style="font-family: verdana;">But do those who posit this neat fiscal logic
really understand what they are asking – and of whom?<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">In the last year or so, we have been treated to a
similar sermon from both Jeremy Hunt (Secretary of State for Health) and Norman
Lamb (former Minister of State for Care and Support***).<span style="mso-spacerun: yes;">
</span>I am frankly sick of usually male politicians sanctimoniously preaching
self-sacrifice without remotely practicing it themselves or acknowledging the
true cost for those who have no choice.<span style="mso-spacerun: yes;">
</span>Time to take off those rose-tinted specs.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">For we cannot assume a cosy set-up of extended
family who live in the same few streets and can pop in to mum’s with a
casserole of an evening or help granddad mow the lawn while granny baby-sits
the kids.<span style="mso-spacerun: yes;"> </span>For one thing, families tend
to be smaller now.<span style="mso-spacerun: yes;"> </span>I am myself the only
child of an only child and have no children of my own to care for me in the
future.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">And in today’s society, people often have to move
hundreds of miles away from hometowns in their youth to study or find work, as
I did; however much we may love our relatives, caring for them in old age may
well involve one or other party uprooting at a stressful time of life, leaving home,
job, hard-won income and support network behind. <o:p></o:p></span></div>
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<span style="font-family: verdana;">Otherwise the relentless and exhausting shuttle of
long-distance travel, coupled with round-the-clock phone calls and emails to
arrange care, liaise with professionals the carer can never meet face-to-face
in office hours, and manage an escalating litany of crises.<o:p></o:p></span></div>
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<span style="font-family: verdana;">If we explore the live-in option, not everyone has
a house big enough to welcome a dependent relative or carer, which can involve
the cost and upheaval of building an extension, modifying an existing home, or
both parties selling up to purchase a new property or going on a local
authority waiting list to be rehoused. (Perhaps this doesn’t occur to
politicians who have two or more properties at their disposal, funded at the
taxpayer’s expense…)<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif">That’s assuming that both parties are agreeable to
the arrangement in the first place and can sustain it over a number of years.
The ideal of multi-generational living, as exemplified by those notional Asian families,
is all very well in theory; but, apart from the practical challenges, sharing a
home 24/7 when you have been used to your own space and privacy can put a huge
strain on relationships. And not all elderly people themselves want to
surrender their independence to move in with relatives whom they may see as
controlling or whose busy lifestyle is stressful to them.</span><br />
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<span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsIhMff8CXchZSqo16TFWOxStWPZFBKZ0BbSo_p1gsS5FAyVCbqQ1-Dpt2cjURZ0DUDEiCQWeRUHAlUtrnUbgHsogCkC49p66NfKX5bxCpsJsbFML_AzFfB1eG4qWWkku4LhPu2A4yTjE/s1600/Glenys+%2526+Ming%252C+fireside+Lydd.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsIhMff8CXchZSqo16TFWOxStWPZFBKZ0BbSo_p1gsS5FAyVCbqQ1-Dpt2cjURZ0DUDEiCQWeRUHAlUtrnUbgHsogCkC49p66NfKX5bxCpsJsbFML_AzFfB1eG4qWWkku4LhPu2A4yTjE/s320/Glenys+%2526+Ming%252C+fireside+Lydd.jpg" width="217" /></a></span></div>
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<span style="font-family: verdana;">Crucially, I would suggest it is still <i style="mso-bidi-font-style: normal;">women</i> who most often have to be the main
facilitators of family care and shoulder the greatest daily and long-term burden
– not just looking after their own parents and children, but often in-laws, aunts
and uncles too.<span style="mso-spacerun: yes;"> </span>That’s how the fabled
Asian and African families traditionally manage – by keeping women at home to
attend to everyone else’s needs.<span style="mso-spacerun: yes;"> </span>And in
the 21<sup>st</sup> century, they too may have to hold down a job outside the
home as well to make ends meet. (For a female perspective on the reality for Asian carers, see <a href="http://www.dementiaaction.org.uk/assets/0000/4121/manjit.pdf">Manjit Nijjar's story</a> and the Sikh community dementia research of <a href="https://www.dmu.ac.uk/about-dmu/academic-staff/health-and-life-sciences/karan-jutlla/karan-jutlla.aspx">Dr Karan Jutlla</a>; and for the South Asian caregiver's journey, A Fragmented Pathway by Shahid Mohammed.)<o:p></o:p></span></div>
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<span style="font-family: verdana;">Many would say they do this out of love, not
“obligation”; but don’t men love too?<span style="mso-spacerun: yes;"> </span>As
I have noted in my previous post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/social-care-womens-issue_27.html">Social Care: A Women's Issue</a>, there
are of course male carers of spouses and parents who act with equal devotion,
but it’s relatively uncommon for men to take this on as sole responsibility if
there is a female relative to hand, just as it remains a minority of men who choose
to be primary carers of children.<o:p></o:p></span></div>
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<span style="font-family: verdana;">Even where men and women share responsibility for
an elderly relative, it is more usually the woman who withdraws from her
career, either taking on a part-time post that offers more flexible hours or
giving up paid work completely when care demands a round-the-clock
presence.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">Which brings me to the other main issue.<span style="mso-spacerun: yes;"> </span>What does Simon Hughes imagine “care” to
be?<span style="mso-spacerun: yes;"> </span>I have touched on this in my earlier
post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/social-care-is-not-lifestyle-choice.html">Social Care Is Not A Lifestyle Choice</a>, but it continues to
frustrate me that policy-makers remain largely ignorant of the reality.<span style="mso-spacerun: yes;"> </span>So I’ll spell it out here.<o:p></o:p></span></div>
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<span style="font-family: verdana;">Yes, a loving family can adjust its routine without
too much upheaval to help a frail elderly person to shop, cook, clean, have
some company, and get out and about.<span style="mso-spacerun: yes;"> </span>If
that were the extent of the “sacrifice”, we would not have much of a
problem.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">But in previous generations, average life
expectancy was no more than early to mid 70s.<span style="mso-spacerun: yes;"> </span>(That was the basis of pension and National
Insurance contributions.)<span style="mso-spacerun: yes;"> </span>People died of
acute illness before they became routinely dependent on others.<span style="mso-spacerun: yes;"> </span>Today, life expectancy has risen by a decade
and climbing; advances in medicine and technology keep the body going, but not
necessarily the mind.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;"><a href="https://www.dementiastatistics.org/statistics/care-services/">69% of people living in care homes</a> have some form of
dementia; that’s <i style="mso-bidi-font-style: normal;">why</i>
they are there.<span style="mso-spacerun: yes;"> </span>Not generally through
the selfishness or indolence of relatives who can’t be bothered to make some
small sacrifice, but because their practical needs and behaviours have progressed
– often over very many harrowing years – to an extremity where even the most
loving of family carers can no longer cope.<o:p></o:p></span></div>
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<span style="font-family: verdana;">The main distinguishing feature that can set
dementia apart from other forms of frailty is <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">lack of insight</a>. Many people with
symptoms disruptive to their independence never receive <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/diagnosis-why-label-matters.html">diagnosis</a> (or receive
it much too late), because they simply don’t recognise or accept their degenerating
capacity and may be antagonistic to the expressed concerns of others; and
without diagnosis or at least acknowledgement of the problem, external support is
very difficult to access.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">Thus a person may get into considerable
difficulties over a very long period of time, with family, friends, and
professionals desperately doing their best to fire-fight with no co-operation,
until some major crisis finally precipitates the dreaded decision to consider residential
care. This is the situation I faced with my mum: <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">The Crisis We All Dread</a>.<o:p></o:p></span></div>
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<span style="font-family: verdana;">For dementia is not just a bit of “memory
loss”.<span style="mso-spacerun: yes;"> </span>It’s a syndrome of progressive, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">cognitive disorders</a> that can escalate to
consume <i style="mso-bidi-font-style: normal;">every</i> daily function of a
person’s life. <o:p></o:p></span></div>
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<span style="font-family: verdana;">In my mum’s case, it began more than twenty years
ago, when bereavement triggered separation anxiety and disproportionate
emotional responses to certain situations; then came gradual short-term memory
loss, leading to repetition of conversation and confusion over appointments and
events. Her ability to manage money and admin became compromised, with PIN
numbers and passwords a particular challenge; household tasks fell by the
wayside due to lack of concentration and declining grasp of everyday technology
such as washing machine, cooker, and hoover.<span style="mso-spacerun: yes;">
</span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">Even so, I managed much of this myself for many
years and could have arranged further domestic support.<span style="mso-spacerun: yes;"> </span>But mum was unable to acknowledge her
deteriorating capacity and vehemently denied needing any help at all.<span style="mso-spacerun: yes;"> </span>She could not recognise the extent to which I
was effectively running her life and would not accept external agency to spread
the load.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">A series of physical crises – falls and fractures –
escalated her decline, and <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">cognitive symptoms</a> came to the fore: loss of capacity
to interpret instructions and reminders and of motor skills to manage food
packaging and household tools; compromised spatial awareness and mobility; inability
to decode social signals and understand boundaries; and most of all, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoia</a> –
a pervasive, unfocused dread that caused distressing personality change, irrational
outbursts of antagonism and unwarranted suspicion that often obstructed
attempts to care.</span></div>
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
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<div style="text-align: justify;">
<span style="font-family: verdana;">In recent years, mum became unable to understand
the difference between an ansaphone message and a live person speaking, leading
to distress at being “snubbed” by friends and relatives who were merely out;
her short-term memory loss developed to a state of being unable to remember the
previous sentence of a conversation, or an incident one minute ago.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;">To her, a person out of sight might just as well
have been absent for a year than the actual two minutes they had been in the
kitchen putting the kettle on or upstairs in the loo. Hence a constant feeling
of abandonment, resulting in the need to have someone in sight or on the end of
the phone at all times.<span style="mso-spacerun: yes;"> </span>She could not be
left alone for even five minutes in a public place (for instance to park the
car) and increasingly not even at home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
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<div style="text-align: justify;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwpYAX9V3vOrfPkh8_TNkQFw1Yg-RxA9ej_JiT-Tw6wdhZoNSIGI6sEvCUtczLI1mKhP4lnRA0RdkQodnow1T3ZCMcSwWB_3yqZYPf0LvPOyeJIiJOk0ueiV1-TwZuMW15595lgK-ehVM/s1600/Glenys+%2526+Ming+Badgeworth+Xmas+2011+edit.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="1024" data-original-width="850" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwpYAX9V3vOrfPkh8_TNkQFw1Yg-RxA9ej_JiT-Tw6wdhZoNSIGI6sEvCUtczLI1mKhP4lnRA0RdkQodnow1T3ZCMcSwWB_3yqZYPf0LvPOyeJIiJOk0ueiV1-TwZuMW15595lgK-ehVM/s320/Glenys+%2526+Ming+Badgeworth+Xmas+2011+edit.jpg" width="265" /></span></a></div>
<span style="font-family: verdana;">Previously very fastidious, she came to neglect her
personal hygiene and reject all efforts to help.<span style="mso-spacerun: yes;"> </span>Despite a fridge stocked with foods requiring
little or no preparation, she stopped feeding herself because even the memory
that there was food available and the understanding of what to do with it could
not be retained.<span style="mso-spacerun: yes;"> </span>She could no longer
manage her own medication from a pill-counter with each day clearly marked,
because she could not interpret it; and if I were there to administer
medication myself, she would argue black and blue that she had already taken it
and refuse to accept evidence to the contrary.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">Finally, she stopped recognising her own home, even
forgetting which was her own bedroom (where she had slept for 40 years), and
started obsessively packing random belongings to flee and wandering out in distress,
sometimes at night, often leaving the door wide open and her handbag on
display.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;">By this stage – two decades after the first emerging
symptoms of dementia - I knew I could no longer keep her safe and well on my
own 24 hours a day.<span style="mso-spacerun: yes;"> </span>I too was at
breaking point and had no option but <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">to arrange a residential care place</a> for
her.<span style="mso-spacerun: yes;"> </span>This was an absolute last resort
that I had done everything in my power to avoid; but it has saved mum’s life -
and possibly mine as well.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">Now she has moved on to the nursing unit in the
same home.<span style="mso-spacerun: yes;"> </span>A visiting friend asked me
why, as in her eyes mum looked much the same as in recent months.<span style="mso-spacerun: yes;"> </span>But her increasing frailties are not always
visible to the casual observer.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;">The nursing unit, I explained, is not just about
medical care; the staffing levels are double those in the residential
wing.<span style="mso-spacerun: yes;"> </span>It takes two staff to lift each
resident safely in and out of their chairs and beds several times a day with a
mechanical hoist, to attend to their personal hygiene and keep them mobile to
some extent. Residents at this stage may need physical help to eat and drink,
to dress and undress – again, very labour-intensive.<span style="mso-spacerun: yes;"> </span>And principally there is continence.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
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<div style="text-align: justify;">
<span style="font-family: verdana;">Most residents in the nursing unit are doubly
incontinent.<span style="mso-spacerun: yes;"> </span>People who have not
encountered this probably don’t realise that in dementia it is not just about
losing physical control of bodily functions, but loss of capacity to <i style="mso-bidi-font-style: normal;">understand</i> what to do, and what is
socially appropriate.<span style="mso-spacerun: yes;"> </span>To be explicit:
carers may have to contend with faeces smeared on walls, on clothes and in
hair, or parcelled up and hidden among clean clothes in drawers, in vases, or
biscuit tins. There are complex psychological reasons why a person cannot help
this behaviour, which is logical to them; but it is undeniably hard for others
to manage, particularly a sole family carer in a domestic setting. This, I
would suggest, is probably the main determinant of residential care – the other
being aggression.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">The cocktail of symptoms varies with each
individual and many won’t be aggressive at all.<span style="mso-spacerun: yes;">
</span>But for those who are (more usually, but not exclusively, men),
behaviour can be totally out of character, frightening and sometimes dangerous.
<span style="mso-spacerun: yes;"> </span>In mum’s unit, I have witnessed an
otherwise benign and pitifully frail old man suddenly come out with a tirade of
foul abuse at the gentle young nurse in charge, simply for attempting to take
him to the toilet for his own health. She copes with it, because it is her job
and she can maintain a degree of emotional detachment; but on a human level,
one cannot help but be shocked.<span style="mso-spacerun: yes;"> </span>How much
more upsetting, if it’s your nearest and dearest to whom you have devoted your
life, who is treating you in this way?<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
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<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOkMBm1NmPpSmqQ452q1ewVDn2vZIpKEXwblsQnKF73qvKxNuE7SRAwLsQwPf4VN7s4-fcZ-ScXW4noq9tLCpefpw_6KGfHrbV7J2ze7YBj8BZflK0dLiU7gP3yThZZrJEgXzMQdDgrC4/s1600/Mum%2527s+Room+Xmas+2018+crop.jpg" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="889" data-original-width="768" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOkMBm1NmPpSmqQ452q1ewVDn2vZIpKEXwblsQnKF73qvKxNuE7SRAwLsQwPf4VN7s4-fcZ-ScXW4noq9tLCpefpw_6KGfHrbV7J2ze7YBj8BZflK0dLiU7gP3yThZZrJEgXzMQdDgrC4/s320/Mum%2527s+Room+Xmas+2018+crop.jpg" width="276" /></span></a></div>
<span style="font-family: verdana;">In the same unit, I was also present for the birthday
of a female resident, who is now unable to sit upright or to speak.<span style="mso-spacerun: yes;"> </span>She spends her days in a special reclining
wheelchair.<span style="mso-spacerun: yes;"> </span>Nevertheless, she was clean
and neatly dressed with nicely-styled hair; kitchen staff had baked her a
beautiful cake with a candle and her name iced on it (as they do for all the
residents); the carers made a ceremony of the occasion, and we all sang happy
birthday before sharing the celebratory tea. I was moved to tears by the simple
kindness of the staff and the tender devotion of the lady’s elderly husband,
who sat holding her hand for an hour, despite her inability to acknowledge his
presence.<span style="mso-spacerun: yes;"> </span>I can well imagine the lonely years
of anguish that had led him to this point – I’ve been there too and will
continue on the same path.<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;">If Simon Hughes knew this, would he still say that
man and I – and all the other families who have a relative in care – lack a
sense of “obligation” or “sacrifice”?<span style="mso-spacerun: yes;">
</span>That we don’t care?<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">On top of this emotional trauma and loss of our
shared past, mum and I (like many others) have lost our family home to care
costs – already over £120,000 for two and a half years and counting.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">Thirty-odd years ago, I was an Oxford contemporary
of Simon Hughes’ ministerial colleagues, David Cameron and Michael Gove (indeed
I read English with the latter).<span style="mso-spacerun: yes;"> </span>Back
then, my future looked as bright as theirs. I established a successful career
in TV drama; but after a decade of missed work opportunities and life chances, attending
to mum’s needs, I find myself single, childless, and with virtually no savings,
having to start again.<span style="mso-spacerun: yes;"> </span>But perhaps I
have not sacrificed enough…?<o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">I have met and corresponded with numerous others
who have shared a similar heart-breaking experience. There are no doubt some
people who shirk responsibility and put themselves first – just as there are
benefit cheats, multi-national corporations that don’t pay tax, and politicians
who fiddle their expenses…<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">But don’t tar us all with the same brush. I have
yet to encounter one person who has willingly placed their relative in
residential care for selfish or feckless reasons and merrily continued with his
or her own life unscathed.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
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<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">The bottom line is that the economics of care funding,
based on continuous employment until 60 or 65 and death from acute illness at
75, no longer stack up.<span style="mso-spacerun: yes;"> </span>Government has
not yet found a solution to the vast expansion of need, set against contraction
of resources.<span style="mso-spacerun: yes;"> </span>To an extent, it’s not
party political.<span style="mso-spacerun: yes;"> </span>Opinions may differ on
how to cut the cake, but no-one is offering more cake.<span style="mso-spacerun: yes;"> </span>It’s a question of priorities.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;">So get real, politicians: have the honesty to say,
“we <i style="mso-bidi-font-style: normal;">will not</i> fund your care”.<span style="mso-spacerun: yes;"> </span>But don’t pretend that it’s families (mostly
women) who can’t be bothered to look after their own.<span style="mso-spacerun: yes;"> </span>If there is a moral failure here, I can
assure you it’s not ours.<o:p></o:p></span></div><div style="text-align: justify;"><span style="font-family: verdana;"><br /></span></div>
</div>
<div class="MsoNormal" style="text-align: justify; text-justify: inter-ideograph;">
<div style="text-align: justify;">
<span style="font-family: verdana;"><br /></span></div>
<div style="text-align: justify;">
<span style="font-family: verdana;"><span face=""verdana" , sans-serif">* This post was written in 2014, under the Con-Dem Coalition government. Simon Hughes lost his seat in the 2015 general election.</span><br />
<span face=""verdana" , sans-serif"><br /></span>
<span face=""verdana" , sans-serif">** Simon Hughes was a government minister at the time of writing. Subsequent ministers, such as Conservative Jackie Doyle-Price in 2017, have expressed <a href="http://www.independent.co.uk/news/uk/home-news/ethnic-minorities-better-looking-after-elderly-social-care-minister-jackie-doyle-price-a7982106.html">similar views</a>, exhorting families to do more or to <a href="https://www.theguardian.com/society/2017/oct/12/labour-accuses-tories-of-reviving-dementia-tax-after-ministers-property-remarks">pay more for their own care</a>, despite evidence that many are already stretched to breaking point on both counts.</span></span></div><span style="font-family: verdana;">
<br />
</span><div style="text-align: justify;">
<span style="font-family: verdana;">*** Norman Lamb was Minister for Care and Support in the Com-Dem Coalition cabinet until the general election of 2015. He held his seat in that election and was a candidate for leadership of the Liberal Democrats. He retains a special interest in socialcare and does have family experience of these issues.</span></div><div style="text-align: justify;"><span style="font-family: verdana;"><br /></span></div><div style="text-align: justify;"><span style="font-family: verdana;">Update: my mum died in January, 2020. She had lived with dementia for over twenty years. We had virtually no help from the state in all that time.</span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com42tag:blogger.com,1999:blog-3254078482490768003.post-85944049844478629402013-11-29T00:57:00.002+00:002023-01-12T18:10:08.350+00:00Say the Unsayable<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: verdana;">The world is rightly becoming more aware of the needs of people with dementia, and “living well with dementia” is a vital aspiration; but it seems to me that the drive to promote this undoubtedly worthwhile concept can sometimes deny the <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html">harsh reality for family carers</a>. <o:p></o:p></span></div>
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<span style="font-family: verdana;">While it <b style="mso-bidi-font-weight: normal;">is</b> possible to live well with dementia in the earlier stages and may remain so for some, for others the later stages are a monumental daily challenge, compounded by social and political pressure on family carers to maintain a brave face of positive thinking, “<a href="http://www.ocagingservicescollaborative.org/wp-content/uploads/2013/03/Compassionate-Communication-with-the-Memory-Impaired.pdf">compassionate communication</a>”, and willing self-sacrifice.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">We do them a disservice to pretend otherwise and thus to engender guilt for justifiably feeling overwhelmed, exhausted, angry, resentful, lonely, trapped, scared, and just plain heartbroken at the gradual loss of both the person they care for and the life they shared.<span style="mso-spacerun: yes;"> </span>Professionals choose to enter the world of dementia and can likewise choose to leave.<span style="mso-spacerun: yes;"> </span>Those whose families are struck by the disease have no such choice.<span style="mso-spacerun: yes;"> </span>When dementia comes knocking, it won’t take no for an answer.<o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">Lack of insight</a> – the inability of a person with dementia to recognise their own needs and limitations – is the distinguishing feature that can make this type of caring particularly hard. </span><span face=""verdana" , sans-serif">Outsiders may think of “care” as a series of tasks.</span><span face=""verdana" , sans-serif"> </span><span face=""verdana" , sans-serif">Well, tasks are bearable; you can plan for them and factor them into your life.</span><span face=""verdana" , sans-serif"> </span><span face=""verdana" , sans-serif">I would be happy to undertake any number of tasks for my mum.</span><br />
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<span style="font-family: verdana;">What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, <a href="http://dementiajustaintsexy.blogspot.co.uk/2015/08/my-biggest-lie-part-1.html">arranging a residential care place without her knowledge</a>.<span style="mso-spacerun: yes;"> </span>The worst thing I have ever had to do.</span></div>
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<span style="font-family: verdana;">It was this suffocating, relentlessly stressful covertness<span style="mso-spacerun: yes;"> </span>- not the tasks themselves - that wore me down over the years, together with <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">distressing changes in mum's personality</a> that distorted the previous dynamics of our close relationship. <span style="mso-spacerun: yes;"> </span>It is our instinct to protect and nurture those we love.<span style="mso-spacerun: yes;"> </span>I chose to look after my mum, in that I would always naturally do whatever I could to keep her safe and well and to make her life happy and fulfilled. But the gradual and mysterious progress of her dementia over the best part of 20 years meant that there was never a conscious point at which I <b style="mso-bidi-font-weight: normal;">chose</b> to give up my own life in the process.<span style="mso-spacerun: yes;"> </span>It just happened – and she has no idea.<o:p></o:p></span></div>
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<span style="font-family: verdana;">In November 2013 I attended the annual meeting of the <a href="https://www.dementiaaction.org.uk">Dementia Action Alliance</a> in London, at which the <a href="https://www.dementiaaction.org.uk/carers">Carers' Call to Action</a>* was launched. One of the speakers was Ray Carver, who talked with admirable candour about the impact of her husband’s young onset dementia. Like my mum, he remained in denial, and she had the responsibility of all decisions and organisation; like me, she found her whole life subsumed, while he <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">remained oblivious, believing himself to be independent</a>. Formerly a nurse, Ray confessed that her professional background still left her unprepared for the intense emotional trauma of living with dementia. “I was a confident person”, she said. “Now I don’t know who I am. <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/11/women-and-dementia.html">I've lost myself</a>.” I’m sure many family carers will identify with that.</span></div>
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<span style="font-family: verdana;">As a freelance scriptwriter in TV drama, I naively thought that my ability to work from anywhere on a laptop would be the solution to mum’s increasing needs.<span style="mso-spacerun: yes;"> </span>But I discovered that high stress 24/7 soap writing is not compatible with high stress 24/7 dementia crises (not many jobs are!); and as sole carer with mum necessarily my first priority, I simply fell out of circulation. It wasn’t my decision, and now that mum is in residential care<span style="mso-spacerun: yes;"> </span>- the thing I most sought to avoid - I have to pick up the pieces and start again, having lost the most productive years of my career (and personal life).<o:p></o:p></span></div>
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<span style="font-family: verdana;">What seems incredible to me now is how long I soldiered on without knowing or <b style="mso-bidi-font-weight: normal;">being able to say</b> that my mother had dementia.<span style="mso-spacerun: yes;"> </span>Although friends noticed that she repeated herself and sometimes mixed up appointments or got confused with money, she functioned reasonably well on a public level to those who would see her for maybe an hour or two at a time; only I was fully aware of the more disturbing symptoms of <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoia</a>, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/04/not-just-memory-problems.html">obsessive behaviour, and cognitive malfunction</a>, and had no-one with whom to discuss them and gain some perspective.<o:p></o:p></span></div>
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<span style="font-family: verdana;">By 2007 and again in 2010, I was desperate enough to seek counselling for the utter despair I felt at the all-consuming and apparently manipulative drama our life had become.<span style="mso-spacerun: yes;"> </span>With <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/diagnosis-why-label-matters.html">no diagnosis</a> of dementia, mum in denial, and no third party to mediate, I came to view these problems as “relationship issues” requiring “boundaries” to preserve my mental and physical health.</span></div>
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<span style="font-family: verdana;">Indeed, with hindsight I can see that some of the more extreme paranoid symptoms of dementia can induce <a href="http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=159">behaviours</a> we might otherwise consider to be abusive: intense jealousy, possessiveness, and separation anxiety, leading to the carer’s effective imprisonment in the home and isolation from other family and friends; false accusations of wrong-doing that undermine confidence; round-the-clock harassment by phone, and sleep deprivation; denial of the carer’s own needs and objective reality, leading to a negation of identity. Ray Carver told how frightened she had been by her husband's out-of-character aggression.</span></div>
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<span style="font-family: verdana;">Of course now I understand that my mum couldn’t help these terrible behaviours – they were a product of her confusion and fear, caused by organic changes in her brain.<span style="mso-spacerun: yes;"> </span>But for a long time, this was far from clear.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;">If professionals ever came to the house, she would appear “normal” for their ten or twenty minute visit – articulate and sociable - and would insist that she was fine, did everything herself, had no carer. <span style="mso-spacerun: yes;">She totally believed this herself, and although</span> <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/confabulations-no-celebrations.html">much of what she said was untrue</a>, they had no way of knowing and would go away satisfied that she was “coping”, when in fact I was on my knees.<span style="mso-spacerun: yes;"> </span>Consequently, for a very long time, I did not identify as a carer even to myself, let alone to the authorities.<o:p></o:p></span></div>
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<span style="font-family: verdana;">It took <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">crisis situations</a> to prove to me that this wasn’t a relationship problem – my mum had an irreversible, degenerative illness that no amount of love, effort, or accommodation on my part could solve.<span style="mso-spacerun: yes;"> </span>I finally realised that what I needed was not therapy to learn how to modify my own (perfectly natural) distress response to her behaviour, but practical help to support us both with her <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/04/lets-get-real.html">debilitating disease</a>.<span style="mso-spacerun: yes;"> </span>That meant breaking silence.<o:p></o:p></span></div>
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<span style="font-family: verdana;">So please, if any of this is familiar to you from our own experience, don’t try to weather it alone.<span style="mso-spacerun: yes;"> </span>Don’t <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/05/not-beige-cardigan.html">let the years slip by until both you and the person you care for have become invisible</a>.<span style="mso-spacerun: yes;"> </span>Take courage and ask for help now.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif">And if you are a friend, neighbour, relative, or professional who suspects that someone you know may be living under these conditions, reach out and speak the first word. <span style="mso-spacerun: yes;"> </span>They may not initially thank you for breaching that code of silence; but one day they will.<span style="mso-spacerun: yes;"> </span>For the sake of those <b>not</b> “living well with dementia” – both those who have it and those who care for them - let’s be brave and say those “unsayable” things.</span><br />
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif"><br />NB: For an important ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/192572/2900774_InfoGovernance_accv2.pdf">The Information Governance Review</a>, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality. Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles." </span><br />
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See also a document published by Carers Trust and the Royal College of Nursing on the <a href="https://carers.org/resources/all-resources/67-the-triangle-of-care-carers-included-a-guide-to-best-practice-for-dementia-care-england">Triangle of Care</a> - the best practice partnership between people with dementia, their family carers, and health and social care professionals.</span><br />
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<span face=""verdana" , sans-serif">* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, <a href="http://www.tide.uk.net/">Tide</a>.</span></span><br />
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<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif">Update 2019: A new charity, <a href="https://dementiacarers.org.uk/">Dementia Carers Count</a>, has been set up specifically to support family dementia carers, offering 3-day residential and one-day sole topic courses for respite, education on dementia, coping strategies, practical, legal and financial information-sharing, resilience-building, and peer support. These courses currently take place in a Birmingham hotel, prior to opening of a national resource centre in 2020-21. More details on link above.</span></span><br />
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<span face=""verdana" , sans-serif"><span face=""verdana" , sans-serif"><a href="https://www.dementiauk.org/get-support/admiral-nursing/">Dementia UK Admiral Nurses </a>and their <a href="https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/">helpline</a> also offer support, as does <a href="https://www.alzheimers.org.uk/">UK Alzheimer's Society</a> and <a href="https://forum.alzheimers.org.uk/">its online Talking Point forum</a> (peer support). </span></span></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com6tag:blogger.com,1999:blog-3254078482490768003.post-54823422364010702022013-08-20T20:18:00.000+01:002019-09-18T12:34:53.301+01:00Everything Must Go<div style="text-align: justify;">
<span style="text-align: justify;"><span style="font-family: "verdana" , sans-serif;">We moved in just before Christmas 1973. It was a time of power-cuts, strikes, and three-day weeks - but that meant little to me as a child, beyond the novelty of candles when the lights went out. Far greater was the excitement of our new house in a different part of the country.</span></span></div>
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</span> <span style="text-align: justify;">And it really was “new”. One of the first to be completed on an estate marketed as ‘Green Willows’, it had been the manager’s office – a fact still remembered and repeated by my mum more than thirty years later, when so much else was forgotten.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="text-align: justify;">We’d lived in a bungalow before, so an upstairs and downstairs, fitted kitchen units, breakfast room, wood-block floor in the living room - and a separate downstairs loo! – were luxury indeed. </span><span style="text-align: justify;">There were double garages (even though most people then had only one small family car); and, unlike the street we used to live on, all the front gardens were open plan, with just a tiny strip of concrete to mark the boundary of each property. The houses were staggered, so that none was immediately overlooked by its neighbour – informal, yet private. </span><span style="text-align: justify;">How aspirational it must have seemed to our parents, who had grown up in the shadow of war and rationing.</span></span></div>
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</span> <span style="text-align: justify;">My father’s public sector employer had set up a new HQ in the area. Many of the neighbours worked there too and moved in at the same time; they had children of a similar age – a ready-made community of playmates. In those days, primary school children didn’t have homework, exams, or too many structured activities. On sunny evenings, we’d wander round to each other’s houses in the quiet cul-de-sacs, and ask if Angela or Julie, Debbie or Mandy could come out to play?</span></span></div>
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</span> <span style="text-align: justify;">We’d ride our bikes along the paths that ran around the back of the estate by the stream, make bridges and dens with debris left behind by the builders, and lark about in the foundations of unfinished houses at the top of the road – no “health and safety” then! We’d dress up in net curtains and “ballet dance” to records in each other’s bedrooms, or “show jump” on space-hoppers in the back garden...</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif; text-align: justify;">Those days are long gone. Angela, Julie, Mandy, and I grew up and moved away. And in recent years, the house that was once such a happy home became a prison to my mum – and to me.</span></span></div>
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</span> <span style="text-align: justify;">My father died in 1988. I had not yet graduated, but the companionable retirement my parents had anticipated was cruelly ripped away. I was at university, having to study for my finals. Mum couldn’t bear to be alone.</span></span></div>
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</span> <span style="text-align: justify;">For the first few weeks, she spent nights with a variety of friends, but was reluctant to return to the empty house. It was some time before she conquered that feeling, and on retirement got a bichon frisé puppy to keep her company; we both adored him. Arguably, though, he kept her tied to the house, when she might otherwise have been able to travel and make new friends.</span></span></div>
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</span> <span style="text-align: justify;">For a few years, things moved forward. Perhaps keen to erase the sad memories of my father’s death in that house, mum threw her energies into redecorations. She had always been a keen browser of soft furnishings, and I was from childhood her partner in crime on many a trawl of interior decor shops. Now I visited at weekends, to find new curtains, wallpaper, double-glazed windows, and made-to-measure white bookshelves; but the house was still our home.</span></span></div>
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</span> <span style="text-align: justify;">“Isn’t this a lovely room?”, mum would often say to me in the calm pale green living room with big windows, looking out onto a peaceful copse at the back. She loved to feed the birds and squirrels. “It’s so quiet here!”</span></span></div>
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</span> <span style="text-align: justify;">But gradually the mood changed with her dementia. Those trees, once soothing, became dark and threatening to her. “What is this place?”, she started to ask. “Why have you dumped me in this empty hotel?”</span></span></div>
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<span style="font-family: "verdana" , sans-serif; text-align: justify;">And as she stopped recognising the home where she had lived for nearly 40 years, she grew frightened by the very things that were selling points to the young: double-glazing that kept the air in and noise out; privacy, bordering on isolation; people passing only in cars; no shops within walking distance, nor public transport for those too frail to drive. “There’s nobody about...”</span></div>
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</span> <span style="text-align: justify;">We were lucky that she could afford taxis into town; the regular drivers were kind and looked out for her, helped her with her shopping. But there were more and more incidents of confusion: mixed up appointments, lost bank cards, purses, and forgotten PIN numbers. Taking mum’s booking became a liability for them. She was no longer safe to go out on her own.</span></span></div>
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</span> <span style="text-align: justify;">So during the week she was confined to the house; and increasingly when I was there, I found I couldn’t leave her alone for a minute – if I dropped her off in town to park the car or just got up to pay a restaurant bill at the bar, I’d have to hurry back to where I’d left her, before mum wandered off or got distressed. Supermarket trips became a trial, as she couldn’t walk far but insisted on accompanying me every step of the way; I could never go out of sight. It became easier just to stay in. Even then, I could barely leave the room to put the kettle on or go to the loo. Neither of us could go out.</span></span></div>
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</span> <span style="text-align: justify;">The house became run down. For years leading up to this point, mum had been reluctant to allow workmen in for maintenance; any jobs that needing doing, I would have to organise, often against her will. Cleaning too became a battle. Mum insisted that she did it herself, but this was a sad delusion. In truth, she was neither willing nor able by then. My visits were no longer relaxing social occasions, but frantic covert schedules of domestic chores and admin, done hastily - and fearfully - behind her back.</span></span></div>
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</span> <span style="text-align: justify;">Eventually, mum’s symptoms were such that she had to go into residential care. One day in the early autumn of 2011, I had to manoeuvre her out of that house - knowing, as she did not, that she would never be coming back.</span></span></div>
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</span> <span style="text-align: justify;">I had to lock it all up and keep it safe in my absence from 100 miles away; gradually clear it of all our valuables, documents, and personal things, and the hundreds of hoarded and hidden items that mum had amassed in the throes of her illness, when she couldn’t remember what she’d already bought: mountains of bed-linen, crockery (especially mugs), make-up bags, purses, mirrors, novelty key-rings, gift sets of toiletries, rooms full of soft toys that had to be “put to bed” each night, scissors, umbrellas, costume jewellery, drawer after drawer of greetings cards and stationery, and scores of M&S canvas ‘bags for life’ (aren’t they just?). Madness in 3-D.</span></span></div>
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</span> <span style="text-align: justify;">Nowadays, my wallet is not full of credit cards, but Gift Aid cards for the many charity shops I’ve frequented. If they gave Air Miles at the local recycling centre, I’d easily have earned a spa break in the Maldives.</span></span></div>
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</span> <span style="text-align: justify;">I’ve washed and scrubbed and hoovered; made teas and coffees for numerous workmen. Preparing the house for sale to pay the care fees, I’ve had to stand by and watch a parade of strangers troop through our home, assessing our belongings and by association our lives, and for the most part deeming them worth very little.</span></span></div>
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</span> <span style="text-align: justify;">It’s taken me the best part of two years on my own. In all, I’ve been shackled to that house longer than either of my parents. I’ve sobbed my heart out there, screamed in frustration and despair, knowing that no-one would hear through the double-glazing, no-one passing by in the cocoon of their car would have any idea of the anguish behind those walls.</span></span><br />
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<span style="font-family: verdana, sans-serif;">And as I’ve spent my weekends and Christmases in solitary confinement, disposing of our collective lifetime, I’ve paused to glimpse through the window the new generation of children setting out on their bikes (in crash helmets now) and parents unloading shopping from 4x4 vehicles that always stay on the drive, too big for those 1970s garages. That’s how we must have looked: carefree and busy with the bright new present, blissfully unaware of what the future might hold.</span><br />
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<span style="font-family: "verdana" , sans-serif;"> <span style="text-align: justify;">I’ve looked at our treasured possessions and agonised over what to do with them now. Anything that mum can still use or appreciate, I’ve taken in to her. But what of the rest? The silver 1920s tea set belonging to her mother, discovered in the loft? She fretted over its apparent loss for years. “Here it is!”, I wanted to say. “Not lost or stolen after all!” But she wouldn’t recognise it. The colourful Spanish dish, brought back by a dear late friend from her holiday? It would be just a bowl. Even mum’s wedding dress, kept in pristine tissue paper for nearly fifty years? Would it mean anything to her now, except perhaps a vague reminder of loss?</span></span></div>
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</span> <span style="text-align: justify;">Things are no more than things when robbed of the memory that gives them meaning. The silver tea set, once so precious, an auctioneer declared to be just electro-plate of a common design – not worth listing for sale.</span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-family: "verdana" , sans-serif; text-align: justify;">So what did I salvage at the eleventh hour? A sunflower door-stop that had been an everyday feature of our living room; and a musical box – three kilted musicians made of felt, playing the Skye Boat Song. I can still see the little shop where mum bought it for me on a day out when I was six years old. She coached children to sing this song in competition at music festivals, as she had done as a child. I have no children to hand these memories on to; but for the moment, they remain precious to me.</span></span></div>
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</span> <span style="text-align: justify;">Mum is unaware of all this. She has no sense now of that house and we never speak of it. “Home” to her is the place where she lived as a child in the 1930s and 40s with her parents.</span></span></div>
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</span> <span style="text-align: justify;">So shall I, when I’m 80 and have dementia, be back in </span><b style="text-align: justify;">this</b><span style="text-align: justify;"> house in my head? Looking in vain for </span><b style="text-align: justify;">my</b><span style="text-align: justify;"> mum and dad to a soundtrack of Bay City Rollers? Perhaps memory itself is a prison.</span></span></div>
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</span> <span style="text-align: justify;">I always thought I would shed a tear when I slipped the keys through the letterbox and left for the last time. But when the day came, I was so tired – mentally, physically, and emotionally - I was simply glad to be finished at last. As I drove away from that town where I don’t belong any more, past the restaurants filling up with evening trade – couples on dates, workmates out for a drink, families celebrating birthdays and exam results - I felt sad, yes; not to be leaving, but sad for all those lost years, when I should have been making a life in the present and the future, not trapped in someone else’s past.</span></span></div>
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</span> <span style="text-align: justify;">That, for so many of us, is the dearest cost of dementia.</span></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com6tag:blogger.com,1999:blog-3254078482490768003.post-11244833329282040982013-05-23T20:12:00.000+01:002017-04-07T17:28:36.595+01:00It's (Not) So Funny How We Don't Talk Any More<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif;">T<span style="font-family: Verdana,sans-serif;">here’s something missing now after News at Ten. No phone call from mum. That had been our ritual most nights in the last twenty-odd years since I had moved to London: a general, rambling gossip of at least an hour about the day’s events, what was on TV, anything in the news. When our little bichon frisé dog, Dill, was still alive, I’d love to hear about his antics.</span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana, sans-serif;">Mum was a performer. She’d trained as a classical singer from early childhood, broadcasting on the radio, and sang professionally until she married: German Lieder and oratorio, such as The Messiah and St Matthew Passion. Her contemporaries on the circuit of Northern choral societies were Kathleen Ferrier and Janet Baker. Later, as a primary school teacher, she retained that instinct to entertain in her communication with the children.</span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">So when she began to repeat herself in conversation (more than a decade ago, perhaps nearer two), it wasn’t initially cause for concern. It just seemed a feature of her general volubility. Yes, it became more prevalent as time went on, but the change was gradual; there wasn’t a point at which I could identify it as suddenly odd. It only became an issue in the last few years, when it grew extreme – repeating a question or story as soon as she had said it and constantly returning to the same.</span></span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana, sans-serif;">There were other warning signs that her verbal communication skills were damaged. She started to use generic words for types of food – “white meat” or just the monosyllable “meat”, instead of chicken, turkey, or pork. And her understanding of language became very literal. Figurative expressions and jokes had to be explained; irony and satire became a mystery – she could not process anything that employed disjuncture between what is overtly said and subtextually meant. </span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">The phone calls, which had been a shared pleasure for most of my adult life, now became onerous; mum would call me multiple times in the day and night, sometimes redialling immediately, because she couldn’t remember having spoken to me before and still had a pressing impulse to say something – the same thing, over and over, and often of a disturbing or accusatory nature. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">I couldn’t ignore the calls, in case of emergency; and if I put the ansaphone on, it would soon fill up with distressing messages. I realised that mum had lost the ability to distinguish between a recorded message and a live person on the line – if the machine picked up, she would think it was me, refusing to converse. (This explained the numerous occasions when she had described being hurt by friends “not speaking to me”.) <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">If I went out for the evening, I always had to hurry back for the 10.30pm call, no longer for an enjoyable chat, but simply to allay mum’s fears of not being able to get through to me, and to assure myself that she was in the house and safe. I came to dread the sound of the phone.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">So when she went into residential care, I was relieved not to have that constant stress. At last I could sleep at night and get on with some tasks in the day. Mum could have a line installed in her room, but I agreed with staff that it would not be a good idea. Because she could no longer understand phone etiquette – what times are suitable to ring - it would have to be restricted to incoming calls; and that would encourage her to stay in her room all day, when she needed company and supervision.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Staff could dial on the office phone for her (other residents do take calls), but on the whole it has proven best not to attempt this, as it merely unsettles her. We take for granted the knowledge that a phone receiver has one end where you listen and another into which you speak; that it has to be held the right way up, close to your ear and mouth; that you take turns to speak and to listen; and that you “hang up” at the end of a call. These are all concepts that can become challenging to a person with dementia. And with today’s cordless handsets, even “hanging up” is now an abstract – a mere press of (the right) button.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">With people around to distract her and meet her material needs, there’s no evidence mum is upset by the lack of phone contact. She’s forgotten about it. It is I who find it strange.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-family: Verdana, sans-serif;"><span style="font-size: small; line-height: 115%;">And when I visit, there’s little talk now. Not because mum is incapable of speech. Other residents struggle with this, but mum retains a sophisticated vocabulary and can still speak coherently. Only she does so sparingly. </span><span style="font-size: small; line-height: 115%;">Sometimes she will address me in Welsh, and is frustrated when I can’t respond. (I knew a little as a child, but it was a long time ago; luckily, she has a Welsh friend who can chat with her in like kind.)</span></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">No, content is the problem for us. So many subjects are taboo. Uppermost in mum’s mind are her beloved parents – both long dead, as is my own father, who died at the age of 52. Talk of them cannot avoid the inevitable question: where are they? To which there is no reassuring answer and little possibility of distraction. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Mum can’t tell me what she’s been doing during the week, because she doesn’t remember; I can’t tell her what <i>I’ve</i> been doing, because so much revolves around <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/08/everything-must-go.html">selling the family home</a> and managing her finances to pay the care fees – a distressing scenario from which I have to shield her. <a href="http://www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/">She does not know or accept that she has dementia</a>, so we can never mention that. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">And she has no real grasp of where she is – either the care home itself (which she variously believes to be a restaurant, hotel, school, or convalescent hospital), or the town or part of the country. <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">It would not help to try to orientate her in the present</a>, as “home” to her is the childhood home she hasn’t seen since 1944, where her parents would be waiting. I avoid any reference to the actual town where she lives, for fear of reminding her of our house ten minutes away that I have spent nearly two years packing up. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Oh, there’s plenty of advice for conversation-starters in dementia care: picture books, collages, memory boxes, photo albums, music. These may work with some people or between others and my mum, but between us they are largely irrelevant. She shows little interest in general pictures, media, or even music, which you might expect to be key. Family photos confuse her, as she can’t place them in time or distinguish between herself, me, and her mother; happy scenes may spark her attention for a moment, but it doesn’t last. And memories reawakened of the life now gone are likely to provoke uncomfortable enquiry... <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">The whole context of our shared past and how it’s been changed by death and dementia is so full of problematic association that I daren’t initiate, only react to mum’s own expressed thoughts – now few and far between. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Friends whom she knows in only one context (as work colleague or neighbour), may find it easier to engage with her, I believe, because they can limit their discourse and focus on positive things. Staff too are better able to <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/truth-or-lies.html">tell white lies or go along with misconceptions</a> to reassure her; I similarly find that I can chat more easily with other residents - because I have no emotional investment in the veracity of what’s said or in their response to me. Mum doesn’t like me talking to them though. As far as she’s concerned, no-one else has claim on my attention!<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">So my visits pass mostly in silence or the neutral chit-chat of strangers: I tell her she looks nice in that pink top, or admire her new shoes; she asks about the weather and traffic on the roads. And then she’ll doze off, and I just sit and read the paper. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">There is an awareness of communication difficulties in dementia, but it tends to focus on language itself: vocabulary, memory, and the mechanics of articulating words. It’s more complex than that. Conversation is reciprocal, like a game of tennis. If only one person hits the ball over the net, the rhythm dies; it feels redundant after a while for that person to keep serving. I’m reminded of that famous Zen riddle of the “sound of one hand clapping”. Speech – or lack thereof – becomes a barometer of the relationship. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">That’s why I’d suggest that communication in this stage of dementia may be easier for professionals. They have no emotional expectation of the game. There’s no personal disappointment if exchange turns into one-way traffic - net practice, instead of live match. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">When I drove back to London after leaving mum in the home for the first time, it struck me that it was also the first time in my life that I’d have no-one to call when I arrived. For over twenty years, I’d always called her to say I was setting off to join her or had arrived safely back in my own place. Who would care now, if I had an accident on the road, or indeed care about anything I did when I was out of sight and out of mind?<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Years ago, I’d had to supervise building works at our family home to remedy subsidence. Already in the grip of dementia (although I didn’t fully realise it then), mum had refused to help and I’d been left to clear out rooms full of junk for the builders to get in. Among some old papers, I’d found a letter she had sent me in college, full of humorous, chatty news about dramas at work and the decorating she and my dad were planning. At the time, I was so angry with her for obstructing me in a stressful task on her behalf that I ripped it up and chucked it out with the rubbish. How I wish I’d kept it now!<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">Clearing out the house more recently, I found a lot of mum’s old diaries - not reflective thoughts, just notes of my weekend visits and the things we’d done together, hair appointments or lunch with her friends, observations of the weather, and trips to the vet with the dog. Here, in the minutiae of a daily life long gone, was her real self – my mum’s true voice. I treasure those everyday relics. <o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small; line-height: 115%;">I am glad not to be plagued any longer by those terrible paranoid phone assaults of latter years. But I miss the aimless, cosy tittle-tattle of our old News at Ten calls. If I see something that would interest mum on TV, I still have the impulse to pick up the phone and say, “Quick, switch on BBC1, there’s Bargain Hunt in Llandudno!” I’ll never do that again.<o:p></o:p></span></span></div>
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<span style="font-family: Verdana,sans-serif;"><span style="line-height: 115%;"><span style="font-size: small;">But I will keep throwing the ball in the air and trying to reach her over the net... </span><o:p></o:p></span></span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com14tag:blogger.com,1999:blog-3254078482490768003.post-33513497373160759882013-05-13T22:09:00.001+01:002024-03-13T15:59:02.683+00:00Paranoia - And The Other Fear That Dare Not Speak Its Name<div class="MsoNormal" style="text-align: justify;">
<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">“I’m <b>very</b> angry with you!” The door burst open, silhouetting mum in the doorway in her nightie. It was about 2.00am and I’d been drifting off to sleep. But she’d got a bee in her bonnet, and she wasn’t going to let it rest. “You’re getting that man in, aren’t you? Well, you’ve got no business!” It was true I’d booked a plumber to service the boiler before winter. A couple of years earlier, we’d been caught in freezing weather with no heating or hot water, and I had wanted to avoid that happening again. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">I knew she wouldn’t be able to cope with such an emergency if I weren’t there (she couldn’t tolerate workmen in the house), so I’d set aside a few days to supervise maintenance before we went on holiday. It was to be her 80<sup>th</sup> birthday and I’d rented a house for a week on the Isle of Anglesey, a special place for us where we had family connections and had enjoyed happy days in the past. I had hoped she’d be looking forward to it, but this white anger about the plumber blocked out everything. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">While she might have had a point that I’d “taken it upon myself” to assume charge in her house, I’d come to do this over the years, in order to head off the crises she got into, if left to her own devices. This meant many tedious and time-consuming jobs that were certainly no fun for me - I took the responsibility, to keep her safe and well. <o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif" style="font-size: small;">But mum couldn’t see anything positive in it; to her mind, there could only be one motive – I was doing up the house to sell it and put her in a home. At the time (2006), there was no question of this. But she was utterly enraged at the belief, and berated me at great length as I lay defenceless in my bed, culminating in the vituperative declaration that she was not going anywhere with me: “Heaven help me, if I have to rely on you!”</span><br />
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</span> <span face=""verdana" , sans-serif" style="font-size: small;">It was a theme she returned to often in subsequent years, latterly fighting my attempts to carry out such innocent domestic tasks as vacuuming, changing her bed-linen, or putting out the rubbish, on the same deluded grounds. Installation of a new cooker and washing machine (to replace broken down old models) was viewed as confirmation of my evil intent, and even delivery of internet groceries provoked hours of aggressively suspicious interrogation.</span><br />
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</span> <span face=""verdana" , sans-serif" style="font-size: small;">There were delusions and resentments directed at others too. Friends, she believed, had snubbed her in town, or were avoiding her on the phone; they’d said nasty things to her. She became convinced that a beloved uncle, long dead, had stolen precious things from her mother’s house, when he kindly cleared it out for her more than thirty years ago when her parents died. Numerous times, she called the next door neighbours, adamant that the gardener - with whom she had always been on cordial terms - was “hiding in the house”; they would search it from top to bottom to humour her, and even then she would not be satisfied. “Well, of course, he’s gone </span><span style="font-size: small;"><i>now</i><span face=""verdana" , sans-serif">!”, she would say. (The most extreme example of this is detailed in my post, <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/02/the-crisis-we-all-dread_8629.html">The Crisis We All Dread</a>.)</span></span></span></div>
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</span> <span face=""verdana" , sans-serif" style="font-size: small;">And she became extremely possessive of me. She was always inclined to be clingy (we were both only children, and she’d had a very close relationship with her own mother); but as time went on, she couldn’t accept any notion of my developing relationships or emotional bonds with others. Whenever I was with her, I couldn’t speak to friends on the phone or even check emails openly, because she’d demand to know who I was talking to, on the assumption that I was saying bad things about her. It was impossible to reason with her about any of this. </span></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif" style="font-size: small;">Yet between these episodes she was her real self: a gentle, warm, kind, loving, generous person, with a lively sense of humour, who would never have harmed anyone – least of all me.</span><br />
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</span> <span face=""verdana" , sans-serif" style="font-size: small;">Last week, the Independent published the heart-breaking story of a man with vascular dementia (also my mum’s dominant strain), who killed his wife of more than fifty years, while under the delusion that she was cheating on him:</span><br />
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">Such extreme outcomes are thankfully rare. But the <a href="https://www.alzheimers.org.uk/info/20064/symptoms/87/behaviour_changes/10">paranoid beliefs that provoke them are quite common</a>, although little discussed – they don’t make comfortable reading or positive images. (See also <a href="https://www.smh.com.au/national/nsw/dementia-related-violence-a-growing-concern-for-the-aged-20130510-2jdcm.html">Dementia-Related Violence a Growing Concern</a> by Paul Bibby in the Sydney Morning Herald.)<o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">Like this poor man’s two daughters, I can understand with hindsight that my mum’s behaviour wasn’t her fault or her true intent; it was the illness talking. And I can now see that all those irrational outbursts were driven by fear. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">A couple of weeks ago, a researcher posed the question on Twitter, “what does dementia feel like?” From my observations of my mum, I replied that it seems to me a constant anxiety or dread without focus (sometimes finding illusory focus). The person is aware of feelings, rather than thoughts; and with a declining (or absent) context of memory to make sense of these feelings, the mind supplies an alternative logic to explain them. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">For instance, my mum has also had times when she’s been convinced that her parents were splitting up, because her father had been having an affair, or that my father was walking out on us. A very similar scenario to that described in the news story above. I know these beliefs to be nonsense – all the parties are long dead and never behaved in anything like this manner during their lifetimes. But my mum was frightened by their absence; and because she couldn’t remember how or when they died, or even that they were dead at all, her mind came up with another reason: they had run away without saying goodbye, because they had done something shameful. Why else would they leave her alone?<o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">In the dementia unit where she now lives, there are other residents with similar delusions. Some believe that people are trying to kill them, that the food is poisoned, or their property has been stolen. One lady will recount in conversational tones the most lurid and graphic tales of having been sentenced to death on a trumped-up charge or of being a spy, which is why the staff “have it in” for her. Another goes wild if anyone tries to sit in a particular chair, because she believes they’re trying to displace her or the “husband” she wants to sit by her side. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">While there may be some benign delusions, the negative seem far more prevalent, concerning persecution, theft, punishment, or betrayal. Why? Because they are provoked by fear: fear of loss, of insecurity, of not knowing who you are, where you are, or why. How do most of us answer such questions? From unthinking memory. But enter into the feelings of a person with dementia, whose memories are fading by the day, and you begin to see where paranoia is born. People who experience such fear need sympathy and understanding, not stigma and condemnation.<o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">But, equally, those close to them should be allowed to admit that they too are often afraid; afraid of what is happening to someone they love – and sometimes afraid <i>of</i> that very person. When I was in my own flat, mum would repeatedly wake me by phone with disturbing accusations, of which she would later have no recall; and when I was staying with her, she would often burst in on me during the night when I was barely awake, in the grip of some intense obsession, or, simply having forgotten I was there, intent on looking through my bedroom window to check for intruders. <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">I knew that her frailty made physical attack unlikely. But there were times when the unpredictability of her moods and irrational antagonism unnerved me. And yes, there were occasions, particularly at night, when I was scared to be alone with her – and, no doubt, when she was scared to be alone with me. In those awful moments when her memory played cruel tricks, we were not the loving mother and daughter of reality, but two strangers, locked in together.<o:p></o:p></span></div>
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<span style="font-family: verdana;"><span face=""verdana" , sans-serif" style="font-size: small;">Mum sat in black silence for that whole day while the plumber did his work. She maintained this deepest of sulks for the rest of the week. I thought I would have to cancel the longed-for holiday. But the day of her birthday dawned, bright and sunny in late September. Miraculously, she allowed me to manoeuvre her into the car, and we enjoyed a week of glorious autumn weather by the Menai Straits. </span><br />
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">One night, over a restaurant meal, she said what a lovely time we’d had. But you didn’t want to come, I said; you gave me hell about it. “No!”, she said. “Why would I do that? I think you must be mistaken.” <o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">I could no longer hold back the tears. Mum looked on perturbed – and totally mystified by my distress.<o:p></o:p></span></div>
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<span face=""verdana" , sans-serif" style="font-family: verdana; font-size: small;">We did have a lovely time. It was our last holiday together. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_MjSGOIWzYFMJYDw9SuQvR-PVsYVkYqfD5K7oM6JBUh1csvcSNW8yxP98GzMP3twDtVwgUFOMK0Qts_rEk2p2M5DE42gqFtYnj7NdXBI0Z9iO1w5qCjxNdhndnYWaTucDl852fzcy-Pk/s1600/Glenys+&+Ming+Beaumaris+Castle+76+edit.jpg" style="margin-left: auto; margin-right: auto;"><span face=""verdana" , sans-serif" style="font-family: verdana;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_MjSGOIWzYFMJYDw9SuQvR-PVsYVkYqfD5K7oM6JBUh1csvcSNW8yxP98GzMP3twDtVwgUFOMK0Qts_rEk2p2M5DE42gqFtYnj7NdXBI0Z9iO1w5qCjxNdhndnYWaTucDl852fzcy-Pk/s320/Glenys+&+Ming+Beaumaris+Castle+76+edit.jpg" width="259" /></span></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ZBwXOmlDynGaP4JyotyGPfJNVjHox-G1NDqPphPtNQcJhyteHo44okhSvoqQLe1-qXj0MKaJ1Ej6a0fE66z2rGcmepPyV8Hnxtb3xUplqbaggHqPiZQzDcjBEpHqf7s5FMxnExCJTp0/s1600/Glenys+%2526+MIng+Beaumaris+green+top+slide+edit.jpg" style="margin-left: auto; margin-right: auto;"><span style="font-family: verdana;"><img border="0" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9ZBwXOmlDynGaP4JyotyGPfJNVjHox-G1NDqPphPtNQcJhyteHo44okhSvoqQLe1-qXj0MKaJ1Ej6a0fE66z2rGcmepPyV8Hnxtb3xUplqbaggHqPiZQzDcjBEpHqf7s5FMxnExCJTp0/s320/Glenys+%2526+MIng+Beaumaris+green+top+slide+edit.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""verdana" , sans-serif" style="font-family: verdana;">Back in Beaumaris for mum's 80th, 2006</span></td></tr>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com1tag:blogger.com,1999:blog-3254078482490768003.post-92228913160284216662013-04-25T04:15:00.000+01:002017-04-24T11:59:36.393+01:00Not Just "Memory Problems"<div style="text-align: justify;">
<span style="font-family: "verdana" , sans-serif; font-size: small;">It was the kind of trip we’d made numerous times together – a few days away in a nice hotel, a bit of shopping, theatre, sight-seeing.</span><span style="font-family: "verdana" , sans-serif; font-size: small;"> </span><span style="font-family: "verdana" , sans-serif; font-size: small;">Mum had always been phobic of lifts since getting trapped in one in her youth, so I had booked rooms on the first floor. It was only one short flight of stairs. Hampered by arthritis, she had set off first, taking it slowly, while I waited with the luggage for the lift. We should have emerged on the floor above at about the same time, hardly more than a minute later.</span><span style="font-family: "verdana" , sans-serif; font-size: small;"> </span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">But when I stepped out of the lift with our bags, she was nowhere to be seen. I thought she might already have let herself into her room, but no. I looked up and down the corridor, called out for her: nothing. Anxious now, I ran back down the staircase, thinking she might have fallen, but thankfully she wasn’t lying injured there. Nor was she in reception. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">I returned to the first floor. Corridor still empty. Beginning to panic, I dashed up to the next floor, and the next – and eventually I found her. “Where have you been?”, I scolded, with the angry relief of a frightened parent reclaiming a feckless child. “Why didn’t you just wait for me by the lift?” She didn’t know. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2a5qdyB5cLOnDw4rzSzvvK7RDds867wdHpxjwHOcpY7sAFMtkV7yYWB7tL6yDbSx36ddxObeBmlnVhkpi_l49aoTasfxGhsU0mNTONx69tvLGE5b_ebiNVWZDVtOj-hQxtsNstDE1S0/s1600/Glenys+%2526+Ming+red+top+edit+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk2a5qdyB5cLOnDw4rzSzvvK7RDds867wdHpxjwHOcpY7sAFMtkV7yYWB7tL6yDbSx36ddxObeBmlnVhkpi_l49aoTasfxGhsU0mNTONx69tvLGE5b_ebiNVWZDVtOj-hQxtsNstDE1S0/s320/Glenys+%2526+Ming+red+top+edit+2.jpg" width="320" /></a></div>
<span style="font-family: "verdana" , sans-serif; font-size: small;">At the time, back in 2004, I couldn’t understand how mum could have become lost with only one flight of stairs to negotiate. But now I recognise this as a classic case of disorientation. Unable to read geographical markers, she had simply kept on moving. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">By itself, this incident would have been insignificant. Anyone can have a moment of confusion in an unfamiliar place. But looking back, it was just one of a number of strange happenings over the years.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">There was the time, for instance, when I was struck down with a stomach bug while visiting mum for the weekend. Afraid I was going to choke after hours of violent retching, I begged her from my supine position on the bathroom floor to call the out-of-hours doctor. She couldn’t make that call. With my stilted prompts, she got as far as dialling the number, but proved unable to describe my symptoms or to give the doctor my address to register me as a temporary patient. I had to crawl on my hands and knees to the phone to speak to him myself.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">And as time went on, I noticed that mum found it increasingly difficult to open food or household packaging. Instead of following instructions or doing the most obvious, intuitive thing, she would employ the most difficult, strenuous means – hacking away at plastic boxes with a knife instead of snapping the designated tab, or tearing the ends of a packet of wet wipes, instead of simply pulling the adhesive strip at the front. Attempting to remove a stain from the carpet, she once cut off the pile with scissors. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Then there was her obsession with the washing-up brushes. Whenever I went to use them, they would not be to hand by the sink, but hidden in some far corner. Why? “Because <b>he’ll</b> see them!”, she would say crossly, meaning our benign neighbour, whose garden backed onto ours. The only way he could see into our kitchen would have been from an upstairs window, and then but a distant glimpse; yet mum was convinced that he would not only be able to see those brushes, but there was something shameful about being thus caught, or judgmental in his looking. Of course I knew this to be nonsense; but if I tried to reason with her about it, she would go wild. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">“Do you have memory problems?”, ask the dementia campaigns. While this is a simple opening gambit to encourage consideration of a syndrome whose symptoms are many and varied, it can be a misleading <b>over</b>-simplification. 'Memory problems' to most people means forgetting names and facts: where did I put my keys? Who’s whatsisname, you know, that bloke who plays the Belgian detective, him with the ‘leetle grey cells’?<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">The anecdotal examples I have cited above are bound up with memory, yes; but they are not as straightforward as momentarily forgetting something that can be recalled with a prompt. They are <b>cognitive</b> malfunctions. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">That’s why the proposed new name* for dementia is Major or Minor Neurocognitive Disorder (NCD) – an unwieldy and controversial term for various reasons, but arguably a more accurately descriptive one.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">With hindsight, I can look back on all those strange incidents (over more than a decade) and see quite clearly that they were all part of the landscape of dementia. But at the time, they seemed just isolated pockets of weirdness, and I grew used to them; it’s only when you step away and view from a distance that the overall pattern emerges. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">Recognising dementia is a difficult business, whether for the medic making a <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/03/diagnosis-why-label-matters.html">diagnosis</a> or for family trying to care for a loved one. No two people experience exactly the same cocktail of symptoms (although there may be common themes); those I have described here were relatively low-key in comparison with others in my mum’s case, and surfaced over a very long period of time. <o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">In subsequent posts, I’ll be looking at some of the more dramatic manifestations, which tend to be less discussed: personality change; emotionally disproportionate responses; decline in <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/its-not-so-funny-how-we-dont-talk-any.html">language skills</a>; and <a href="http://dementiajustaintsexy.blogspot.co.uk/2013/05/paranoia-and-other-fear-that-dare-not.html">paranoia</a></span><span style="font-size: small;">, <a href="http://dementiajustaintsexy.blogspot.co.uk/2014/10/confabulations-no-celebrations.html">delusion, and confabulation</a> – a confusion of fact and fiction, in which a person believes elements of fantasy to be actual memories.</span></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">There is a great deal still to be understood about dementia by both individuals and society. A first step must be to acknowledge that it’s so much more than just a memory problem.<o:p></o:p></span></div>
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<span style="font-family: "verdana" , sans-serif; font-size: small;">*American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (DSM-5), revisions to be published May 2013.</span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="font-size: small;">Some </span><a href="https://www.alzheimers.org.uk/info/20064/symptoms/87/behaviour_changes">behaviour changes </a>, as described by the UK Alzheimer's Society.</span></div>
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Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.com5