Thursday, 25 April 2013
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. 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.
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.
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.
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.
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.
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.
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.
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 he’ll 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.
“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 over-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’?
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 cognitive malfunctions.
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.
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.
Recognising dementia is a difficult business, whether for the medic making a diagnosis 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.
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 language skills; and paranoia, delusion, and confabulation – a confusion of fact and fiction, in which a person believes elements of fantasy to be actual memories.
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.
*American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (DSM-5), revisions to be published May 2013.
Some behaviour changes , as described by the UK Alzheimer's Society.
Tuesday, 2 April 2013
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,|
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.
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 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?)