Tuesday, 2 April 2013

A Stranger In My Home Town

My mum used to love Easter. More than Christmas, which was about drawing the curtains and holing up indoors against the dark nights; Easter meant the beginning of lighter evenings and longer days, daffodils in the garden, birds nesting in the eaves - everything fresh and green and full of new life.  

I was always home for Easter weekend, bearing the “Rolls Royce” of hot cross buns and simnel cake from the special bakery down the road from me. We’d sally forth in the car to one of our favourite haunts for a pub lunch or cream tea and potter about at craft fairs and farmers’ markets.  When she got older and more physically frail, we could still enjoy the beautiful scenery on our doorstep: gentle rolling hills, sheep in the fields, and golden stone that seems to smile in the sun.

Photo: Dunn's bakery,
London
This year, I could still bring mum cake and hot cross buns. But they’re surplus to requirements. She doesn’t register festive occasions any more, and there are freshly-made cakes aplenty in the care home where she lives.  I’m grateful for that. She likes their meringues, cream puffs, and sherry trifle*; they keep up her interest in food. But we’ll never again eat a meal together cooked by one of us in our own home. And it’s over a year since we’ve been out.

If it were just a question of physical capacity, there would be aids to help. I look enviously at families visiting the residents in the ground floor unit, who might be in wheelchairs, but don’t have dementia. They can go out.  More importantly, they can speak to their loved ones on the phone between visits and anticipate such trips.  

Some people in mum’s unit can still do those things too. But not my mum. Formerly a prodigious talker, she now struggles with the technology and concept of phone conversation. (We take for granted the understanding that a voice on the other end of the line can be the same person we know in real life, just not in the same place, or that a recorded message can’t answer back; a person with dementia may become confused about such things). 

With no short-term memory, she can’t look forward to future plans or recall pleasurable incident just past. She can’t remember having been in one room, once she has passed into another. Going in and out of the unit – even downstairs to function rooms or to the gardens in summer – is too disorientating for her.  

It seems unbearably sad for her life to be confined to just two or three rooms and a corridor. So for the first few months of her residence, I persisted with attempts to take her out, naively thinking it would be no different than our regular pre-care home jaunts to country pubs, our favourite restaurants in town, the theatre, or cinema. 

I finally came to accept that it caused more harm than good. In truth, the wider world had already become a threatening blank to my mum, long before she went into care. For some months, I had been shocked to find that she had no recall in conversation of the most familiar places – the main street she’d browsed in daily for 40 years, the restaurants where we ate each week, shops where staff knew her well and always welcomed her for a chat.   

At times, I became frustrated; I simply couldn’t believe that she didn’t know what I was talking about.  How can you forget so completely the everyday local knowledge that binds you to the place where you live?  The network of usage that makes you part of that community?

She’d been a teacher, and when I was a little girl, I attended the same school. Before and after lessons, I’d wait in her classroom, sharpening pencils, helping to pin up children’s work on the walls, or playing the glockenspiel; and then we’d head home together. The journey took us through the town centre, where we’d have to change buses. Every day, we’d walk through the department store, sometimes looking speculatively at furniture (one of her perennial obsessions!), or more often lingering in the perfume department.  

She would gossip with the assistants, while I was fascinated by the toiletries: not the expensive fragrances from Chanel and Christian Dior, but lemon-shaped soaps by Bronnley, in their waxed paper wrappers like Christmas tangerines; bracing 4711 Eau de Cologne in sprays and perfume sticks that I’d surreptitiously test on my wrist; hippy scent Aqua Manda, in its dark brown apothecary’s bottle, heady with orange and spice and patchouli - and, most exotic of all, Maja.



Maja came from Spain. There was eau de toilette, talcum powder, and soap in a dramatic red, black, and gold box, proud flamenco dancer in full flight. The soap came wrapped in black tissue: unusually khaki-coloured and very grown-up to a young girl, with a subtle, woody, spicy aroma. It wasn’t always in stock, which made it a treasure to find in any other store; and sometime in the 1980s or 90s it was discontinued in the UK.  

A few years ago, I was then delighted to find it available online. It would make a lovely Mother’s Day gift, I thought, recalling memories of that time when mum and I were always mooching in town together. So I had it shipped all the way from the US and excitedly presented it to her. She opened it with only mild interest; sniffed and quite liked the perfume; then casually returned the soap to me. I was disappointed and not a little hurt by this reaction.



Looking back, her dementia was more advanced than I had realised at that time. She still functioned well in other respects.  But now I see: how could she recall the memories evoked by that scent, when she already struggled to recall the department store in town, the main street where it stood? These are landmarks known by all who live there, as familiar to us as our own house. And now she doesn’t remember that.

Of course it’s possible the soap meant less to mum in the first place, and that memory from thirty years ago was understandably hazy. But a person without dementia would have remembered something of it when prompted, or had the social grace to cover it up. Dementia just leaves a blank.  


I had moved away to London when I graduated in the late 1980s, but continued to visit every other weekend and for longer spells. As mum’s dementia grew worse, I found myself spending more and more time back at the family home – to the extent that I often felt I was living her life more than my own.  That town was as much my home as hers, as much my home as my own district of London. 


Suddenly it’s over. I still go to some of those places on my own, but it’s not the same. I can't talk to mum about them, in case it disturbs her fragile sense of where she is now. And with no personal connection, nothing to root me in that community by everyday engagement (stocking up with mum at the supermarket, browsing for clothes together in the town centre, paying her paper bill, taking rubbish to the dump), I’m an outsider.  


All the things we used to do that were bound up with that place – our shared rituals, the life we lived there with my late father – are only in my head now. No-one else remembers.  


Dementia, we are told, attacks short-term memory: “they still remember the past”. Well, only selectively in my mum’s case, and only her own past - mostly her childhood or youth, long before my time. My past - and much of my present, the memories we shared of my lifetime - has gone.  


A few weeks ago, she asked me out of the blue if I had a husband. I don’t and never have. I laughed it off at the time. But if she has no idea of something so fundamental about me, how much of me does she now remember?  


The bereavements of dementia are many, and some are better known. I have come to realise that this cruel disease has not only robbed mum of much of the life we shared - it has left me alone with my own memories and made me a stranger in my home town.



(* Sad to say, four years on from writing this post that excellent selection of freshly-made cakes has largely disappeared, due to budget cuts at the home  - though this is not a conversation the provider has ever had with residents and families.  Kitchen staff continue to do their best with available resources and manage to provide scaled-down treats on a more limited basis, but the overall standard of catering has markedly declined in recent years - a common scenario in the current climate of the care "industry".  See my four-part post, Five-Star Hotel, Five-Star Care?)


11 comments:

  1. This is incredibly powerful and incredibly sad, Ming. You write so well and this post deserves to be read far and wide. People do not realise how isolating dementia can be and how painful everyday experiences can become.

    It takes courage to view the world from the perspective of the person living with dementia and to take the lead from them. It is desperately hard to accept that carrying on with 'doing what we've always done' because "you've always enjoyed that, haven't you Mum" may not be in the person's best interests.

    Your Mum would be very proud of you and delighted that you have these wonderful memories of your childhood and happier times together.

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  2. Thanks, Gill. I hope so. (Making me tearful now!)

    I feel I have to write about all those memories now, before they're gone forever.

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  3. You're remembering the past for two now. Beautiful piece, Ming. And thank goodness your mother is safe, cared for and loved.

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  4. If anything is the robber of souls, dementia is and your account sets out every sneaky, thieving, violating detail of it. My mother died last year, not of dementia but of the impact that had on her will to live after my father died. The damage to her brain was largely subcortical so that she remembered a great deal but only if prompted and then without emotional context. Unfortunately, the profound emotions of anger and frustration and then grief went unexpressed until she finally turned her face to the wall and refused to eat or drink. My sister and I, travelling the 300 miles to her care home, missed her by two hours. In truth though, we had lost her some years ago. Articles like yours expose the dreadful picking away at the person that dementia perpetrates. Hopefully, they also begin to expose the desperate needs of everyone affected, dispel the fears, and eliminate the shame some people feel because of this dreadful cluster of diseases. Thank you for posting.

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  5. So sorry to hear about your mother too; it is hard to explain to those who haven't (yet) lived with it the strange ways the memory can retain some things, but not others - in particular, as you say, emotional context.

    For a long time, while I was still in the daily thick of it with my mum, I didn't want to write about it, anything but! I also felt I shouldn't, out of respect for her privacy.

    With some distance, now that she is in care and less aware of the wider world and media, I think it is important to document these thoughts and feelings for others who are going through them and are trying to make sense of it alone; also to drive the message home for policy-makers that conditions such as dementia are not simply fiscal problems to be thrown the occasional political sop, but a widespread human crisis that can affect anyone - whatever their station, personal circumstances, or previous capacity.

    While some can "live well with dementia", and hopefully understanding and support will improve to make this possible for more, there's no denying that it can be a devastating and all-encompassing syndrome, not just for the person directly experiencing it, but also for their loved ones, friends, and neighbours.

    No-one wants to think about it until it directly affects them - but with an ageing population, it will touch more and more of us.

    Thanks for reading and taking the time to comment.

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  6. Hi Ming, I can totally relate to what you are saying. I'm a full-time carer for my own 86 year old Mother, who also has dementia.

    This cruel disease not only steals the sufferer's memories, but loved one's, as you so clearly state, also see their nearest and dearest slowly disappear.

    My Mother still has memories of the past, but like yours, much of it is from a time before I was born. She wants to visit her Mum, talking about her as if she is just around the corner, when in reality she died in 1962!

    I'm more than happy to be Mum's main carer, but as we all know, caring can be a difficult and lonely existence.

    I also have a newly started blog, but with a different angle. From my experience as a carer, I'm looking into ways of helping others caring for elderly parents with dementia.

    Keep up the good work.

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  7. Hi, there -

    Thanks very much for your thoughts. We do seem to have had a very similar experience.

    Did you see the programme about memory that Maureen Lipman presented the other day? (Available on UK BBC iPlayer for another few days.)

    http://www.bbc.co.uk/iplayer/episode/b01s0zvx/Maureen_Lipman_If_Memory_Serves_Me_Right/

    While it was not specifically about dementia, there were some interesting research theories about the importance of early years in memory, which support the anecdotal evidence of many carers of people with dementia that their loved ones are most fixated on childhood and youth. Often the "home" they continually yearn for is not a real place, but home they remember from schooldays, when their parents were there to look after them - it's more a sense of this security and unconditional love, although visualised in terms of the place they lived in at that time.

    If you were to take them back there now, they would probably still want to "go home", because the reality wouldn't be the same as the memory - and crucially the parents would not be there. My mum still asks every day about her parents, as do most of the residents in her home; and yet she sometimes thinks I'm her mother too!

    I'll look out for your blog - please post me a link on Twitter, if you're on there (or on here, if not). Are you familiar with the other sites I linked on my first post in February, 'We're Not All Ancient, You Know?' - some good ones there, set up by carers to help others with their experience, as you say.

    Thanks again for reading; and all the best with your mum.

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  8. Thank you Ming, the blog is at http://sussexrokx.blogspot.co.uk/.

    I did post a public link on Twitter today under ZkidooKreativ (started when I was still a Graphic Designer), so you might find it there as well.

    At the moment it is just about adapting readily available Digital Photo Frames to create a Day Clock, to assist dementia sufferers identify which day it is and what part of the day it is, i.e. Morning, Afternoon, Evening or Night, rather than actually trying to tell them the time.

    As we know, time becomes meaningless, but for a while they can still relate to periods of the day. It can also help them maintain a daily routine.

    I didn't see the Maureen Lipman programme, but will look it up tonight, I'll do the same with the sites you've linked.

    Many thanks, Martyn

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  9. Ming,

    This is a wonderful account of the struggles that distance caregivers like you are forced to go through. I thought this bit was specially touching:

    "And with no personal connection, nothing to root me in that community by everyday engagement [...] I’m an outsider."

    If anyone else reading has a relative who is seriously ill with a life-limiting condition and lives far from them, please consider filling in a survey for Oxford Brookes University:

    https://jfe.qualtrics.com/form/SV_57rCDTlSu2ZVrqR

    Many thanks and best wishes,

    Carolina

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  10. Thanks, Carolina; appreciated.

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