Dementia Action Alliance Carers' Call to Action* 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 Alzheimer's Show at the Olympia in London and share my personal story to illustrate the need for the five key aims to be met.
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 not just a bit of dotty forgetfulness, but a degenerative, cognitive 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.
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, I Don't Know Who You Are…)
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.
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.
Mum’s now in residential care, where she’s been since September 2011. By that stage we were both at breaking point.
That’s why I support the Dementia Action Alliance Carers' Call to Action.
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.
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 at least an hour on the phone every night 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.
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 no 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.
But there were other signs along the way: 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.
She would take a sudden, violent dislike 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.
She started to use generic words for types of food – “white meat” or just “meat”, instead of chicken, turkey, or pork. And her grasp of language 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.
I mention these more subtle things, because I’m frustrated by the focus on dementia as just a "memory problem". It’s so much more! A progressive, cognitive disorder, that can affect a person’s daily life in so many different ways.
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 didn't see any problem.
That’s the thing with dementia - lack of insight can itself be a major symptom, leaving a person unaware of their own vulnerability and often hostile to intervention.
That’s why 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: like me, they may have to work under the radar or against fierce antagonism to meet their loved one’s needs.
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.
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.
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.
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.
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.
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.
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…
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.
Aim two of the Carers’ Call to Action: family carers of people with dementia are recognised as essential partners in care.
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.
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 she never would or could.
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…
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 didn't really know who I was.
By the summer, mum could no longer recognise her own home, where she had lived for 40 years. Paranoia 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”.
And one night, I got a call from the police: 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.
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.
Finding the right residential care is another story. But we were extremely lucky to get a place in a good specialist unit.
The week I took mum there, on my own, was the worst of my life. But I know that she wouldn’t be alive today if I hadn’t done that.
So I’m incensed when I read statements from politicians 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.
As carers, we want to preserve the dignity of those we care for, so we tend to shy away from complaining or being explicit about behavioural problems: we don’t want to talk about double incontinence, paranoia, or aggression.
But now I think we have to be honest about the practicalities and the emotional impact of caring, 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”.
I couldn’t be here with you today, if mum were not in residential care. 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 crises. We were on our own.
So I’d like professionals to reach out, to meet aim three of the Carers’ Call to Action: that family carers have access to expertise in dementia care for information, advice, and support.
It was only through the Alzheimer's Society Talking Point Forum, 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.
So what else helped?
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.)
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.
Hence aim four of the Carers’ Call to Action: family carers should have assessments and support to maintain their own health and well-being.
Under the terms of the new Care Bill (now passed as the Care Act 2014), carers will have a right to be identified and offered a carers’ assessment for their own needs; and I believe that the revised GPs’ Directed Enhanced Service for Dementia will now have some provision to share this information between different GP surgeries, where the carer is not registered to the same practice.
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!
It was the social worker, 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.
And ultimately, the staff in the care home 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.
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.
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 our subject of choice either.
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?
You are not the pull-on trousers and the beige cardigan!
And as the carer bogged down by daily trauma, you tend to put your own needs last and can end up losing your identity.
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.
Hold onto that. Because we too have a right to ask: “Don’t you know who I am?”
Please go online to find out more about the Carers' Call to Action and sign up to our shared aims to support family carers.
*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, Tide.
Update, 2019: A new specialist charity, Dementia Carers Count, offers support courses for family and friends dementia carers. Contact them for details.
thank you so much, my mum 86 in October was diagnosed with dementia, 3 months after my dad died at 90 last July. It is a very painful journey as you knowReplyDelete
Thank you. Sorry to hear you are going through the same - hope you are getting some support for both your mum and yourself?ReplyDelete
Do try the Admiral Nursing Direct helpline (link on right) if you need someone to talk to about it. Or Alz Soc forum is also good 24/7 (i.e. at night and weekends, when other services are closed), to chat to others who have been there and can advise first hand on particular issues.
(Other topics in blog archive, via the links on the right, if any might be of help.)
All the best to you both.
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Less than a year, my Dad, died, aged 90.Along with my five siblings, we nursed him at home, in his bed, until he took his last breath.All through those weeks, my Mum could not cope with what was happening. She has always had a difficult personality, inwardly anxious, outwardly, at times, cruel and poisonous.She is from County Tipperary and several of her siblings had similar traits, which I have always collectively called the 'Tierney Faultline. The self medication that she and her other siblings did choose to use from time to time, was the depressant drug known as alcohol. You can probably imagine, that this then caused more problems....In the last few days of Dad's life, Mum was completely unable to cope or 'voice' what was really going on for her, so she managed to get herself into hospital with 'tummy troubles'. On his last day, July 20 2013, my sister and me went to collect her, when my daughter rang to let us know he had just died. My sister and me then drove Mum home, knowing that he'd gone. We weren't there, neither was Mum(though she has created a memory that she was), but he was surrounded by love and by our other siblings and his grandaughter. Soon after, she looked dfferent.It was as though she was naked. In his advancing years, Dad went out every day.He gardened.He shopped.He went to church.He talked with people.He cooked all the meals. Without realizing it, he covered up for her. All Mum did was lay and sleep on a sofa in the back room. At first, this did feel strange but then in a way, it became normal. I wondered at times, if she was just tired, tired and even more tired from all of her years of hard work. And however difficult she has been over the years, nobody has ever worked harder for her family she she did. We grew up in the forces, so were always on the move, packing, unpacking and travelling. I would see her, when I was a teenager, cycling down the road, a heavy bag of shopping on each handlebar, coming home to cook tea. Or balancing between two ricketty old stepladders, painting one of the many ceilings in the big old house we eventually settled into after the RAF. So over the last 10-15years of so, when any of us did manage to take her out, I certainly at times, would be at screaming point because I could predict everything that she was going to say. Every street we passed. Who had lived down there. What they had said. What they had done. Looking back now, I am sure that all of the repitition were early symptoms of the dementia and Alzheimers. I'm pretty sure that when she was lying down in the back room, something ws happening in her brain that none of us knew about......Soon after Dad's death, she was diagnosed with Alzheimers. Many were the mornings when I went into her room and she would ask me "Where's Dad?". Looking back now to that time, has me again, in tears. It was like starting ove and over again. I agree with you that traumatic events, if not the cause, can certainly trigger extreme mental breakdown. I cared for her for the following five months and there were times, then, that I just could not take it any more......She can no longer look after herself mentally or physically. It is hard on us all and we are all trying to do the best that we can, in our own different ways. She is living, 200miles away from her home with my sister and her family. Living with her on a daily basis is very hard. It is difficult, for us all. We know that if and when the time comes that she fails to recognize us, then a residential/nursing care home may well be the answer. I just wish she would close her eyes and not wake up again.We have so much ahead of us and we are all trying to cope.We are all of us mourning Dad, who left us only died ten months ago. We are now also mourning Mum, who has also left us, but she is still here.......xReplyDelete
Colette, I'm so sorry to hear what you've been through and continue to experience. (Glad your post has shown up this time, as I'm sure it will be of interest to other readers.)ReplyDelete
From what you describe, I would suggest that your mum was indeed developing symptoms of dementia for many years when your dad was alive, and his care unwittingly helped to cover it up. This is in fact quite a common scenario - have you looked on the Alzheimer's Society Talking Point forum (link on the right)? I think you'll find many others there who can discuss this with you.
You say she "created a memory" of having been at your father's deathbed. This is a known phenomenon called confabulation, in which a person with impaired cognition confuses elements of fact and fantasy to create a false "memory".
My mum did this a lot, in both big and small ways: for instance, we might see a friend of hers in town, and she would later recall that incident in quite a different way, recounting entire conversations she believed they had had (often negative, involving nasty things being said or done); and when a cousin of mine came to stay with me in London, mum was convinced she had hosted the visit, although she never actually met my cousin at all. And when I was in hospital having surgery, the surgeon spoke to her on the phone to say the operation had been a success, but mum never met her; however, when she came to visit me in the hospital, she described a whole "meeting" with this consultant "on the stairs', which never took place.
Usually these confabulations involve an element of intense emotional trauma - a fear about something, that weaves itself into a narrative incident (around a grain of truth), which the person then believes to be actual memory, not imagination. In your mum's case, I expect she was upset about not having been with your dad when he died, so her mind created a "memory" that she was.
I've been meaning to write a post on this, as it's not very well known (not much easily accessible online for the layman either), but other things became more pressing. I'll try to revisit.
Sufice it to say, this is one of the hardest things for family to cope with, as it can be impossible to unpick fact from fantasy (for instance, if there are accusations of abuse or theft), and it often feels as if the person is making things up deliberately. In fact they can't help it, but the vehemence with which they may argue with you, while appearing to have capacity in other ways, can be corrosive to relationships.
Have you seen my post on paranoia? (May 2013 from archive links on right). You may recognise some symptoms there too. Such things can be very hard to bear, when they involve huge personality change or augmentation of already present negative traits. Alcohol can be an aggravating factor, as you say, and there is a particular kind of alcohol-related dementia, Korsakoff's Syndrome:
(Sorry, links don't work as live from comments section, but if you copy and paste into your browser, that should work.)
NB: If you scroll down this page from the Alz Soc, it does list confabulation as a particular symptom of Korsakoff's Syndrome.
Have you seen my latest post, I Don't Know Who You Are? This explores the feelings involved when your loved one no longer knows you. I don't say "recognises" here, because it seems to me that they can still "recognise" you on a superficial level for much longer than they actually know who you are in context - another complexity that people don't understand until they experience it first hand.
Are you getting some support yourself? If possible, do try counselling. It can help just to have someone neutral to offload on.
All the best to you, Colette. Thanks very much for sharing your story.
Hello again Ming Ho&anybody else reading this. Ever the perfectionist(which I am not), I just want to add a little more to what I've said above. Because my first blog disappeared when I clicked on the 'preview' button, and then I kept getting a message telling me I was way over the character count when I finished my second one, I became very frustrated. I don't feel therefore, that I really gave you the full flavour of Mum as a person, and of the sadness and upheaval that is going on, for her, first of all, certainly for me, and I know for my siblings, although of course, I'm not here to tell their story. I mentioned her fragile psyche. It's been there forever, though growing up I wasn't that aware of it. She came over here from Ireland, as a young woman, trained as a nurse and had many friends. At times she was vibrant and happy and fantastic company! That she loved (and loves) us all, I have never had any doubt, even when at times it was difficult witnessing and being part of her, at times, odd and bizarre behaviour. She is, like us all, a product of her upbringing, and the generations that grew up before her, in the poverty stricken peat bogs of Ireland. That she loved Dad, there was never ever any doubt. Even again, if an 'outsider' had been looking in, s/he might also have found it difficult to believe. But when he died, her 'focus', whether it was good or bad, had gone. My Mum's personality was very different to how you talk about your yours. But what is happening now is similar. I applaud you for all of your research and the info you have posted on your website. I am a mental health and addictions social worker, and although this has not really helped me in coping with Mum(I don't have that essential emotional distance), I love the fact that you found a social worker who is so supportive, practical and compassionate. (There are lots of us around!) This coming week, I will be heading north to the family home to spend time with Mum, who is there now with one of my brothers, who thought that it might be a good idea for her to spend time back there. I think that already there are problems developing. I am very anxious, about the next week or so, and have a picture in my mind of me literally having to drag her out of her own home, and then drive her back down to my sister's home in Norwich. I find myself wondering about giving my job up and again living up there just so that she can live and end her days in her own home, like Dad did. I hope when I press the 'publish' button now, I'm not 'character counted' out again. I just wanted to finish what I began in my first blog above...xReplyDelete
Thanks for sharing, Colette. I do feel for you.ReplyDelete
For your own sake, I'd say think very carefully before giving up your job and moving back to live with your mum. I know this is an instinctive thing to do for her good as you see it now, but there may well come a time, as it did with my mum, when she is no longer aware of her surroundings, finds them alien (however familiar they are in reality), and feels overwhelmingly anxious wherever she is. "Home" at that stage will be in her head (usually the childhood home), and sadly may be unattainable in real terms.
It was at that point that I had to concede my mum to residential care. Our family home was no longer a comfort to her, as she could not recognise it and was constantly trying to get back to the "home" in her head, which no longer exists.
I had come to spend much of time staying with her in my home town 100 miles away from my own flat, friends, and work contacts, and had found it impossible to concentrate on work or social life in the meantime. I had considered moving back permanently, as it seemed "easier" in terms of supporting mum; but after a period of counselling, because I was so torn about it, I decided against. As an only child with no partner or children, I knew that one day I would be left alone and would have no other connections in my home town.
Now that mum is in residential care, I'm so glad I didn't burn my bridges by selling up - I would have been left with nothing of my own life. It is very hard to keep shuttling back and forth, but as I have said above in the main post, don't lose sight of your own identity and try to keep some toehold of your independence.
All the best to you and anyone else in this harrowing situation.