Anna doesn’t want to be here, that much is obvious. She sits at the breakfast table sobbing quietly. She has no interest in the coffee, or the roll with marmalade. When my colleague speaks to her, suggesting that she might like to eat or drink something, she looks at her briefly, nods, mutters, “Yes” and then continues to sit there passively, the tears still running down her cheeks.
Gerry is confused. That’s nothing new. Gerry is permanently confused, insecure. His breakfast roll is on the plate before him, already cut into the top and bottom half. Knife in hand, he looks at me helplessly and asks, “And now, what should I do now?”
“Butter your roll, Gerry,” I suggest.
He does so. Then he looks at me again.
“What would you prefer, Gerry, sausage or cheese? Or maybe some marmalade?”
This is too complicated for Gerry. He looks at me and shrugs his shoulders.
“You usually take marmalade. Spread the marmalade on your roll.” I point to the marmalade.
This is okay. Gerry has understood me and is relieved to know what he should do next. He spreads marmalade on his roll and starts to eat.
“In the United States, Alzheimer prevalence was estimated to be 1.6% in the year 2000 both overall and in the 65–74 age group, with the rate increasing to 19% in the 75–84 group and to 42% in the greater than 84 group.” (Wikipedia). Experts generally reckon that Alzheimer’s disease accounts from somewhere between 50% and 70% of all cases of dementia. Exact figures are difficult to give, since the only sure diagnosis of the particular kind of dementia someone has been suffering from can often only be reached through an examination of brain tissue which is only possible post mortem. But given the increase in general life expectancy in the developed world and the fact that scientists have yet to discover any medical treatment which can significantly prevent the onset of Alzheimer or substantially ameliorate its progress once it has manifested itself, we are talking of millions of people worldwide, now and in the foreseeable future “In 2006 the worldwide prevalence of Alzheimer’s disease was 26.6 million. By 2050, prevalence will quadruple by which time 1 in 85 persons worldwide
will be living with the disease.”[i]
Hans gets up from the breakfast table and walks purposefully towards the door. The first time he came with his wife to our day-care centre, it took me a little while to realise that he was the one suffering from dementia. He is neatly dressed, with an open, competent expression, a firm handshake and a pleasant, expressive, “Pleased to meet you.” His wife looks harried and stressed-out. A few sentences later I realise that this is all a façade, a façade with a desperately ruined building behind it.
Hans cannot sit still for longer than five minutes at a time. He’s in his early seventies, still physically fit and has a burning source of internal energy for which he can find no channel other than movement. It’s no wonder his wife looks so all-in. She tells me he’s like this all the time. He follows her everywhere at home, even to the toilet. She has to lock the doors because otherwise he’ll leave the house and promptly get lost. She has to keep him in view all the time. Mercifully, he usually manages to tire himself out enough during the day so that he sleeps soundly. She, needless to say, doesn’t.
We can generally let Hans walk, at least for the first couple of hours on the days he spends with us, although we have to watch him. He doesn’t usually leave the premises, although sometimes after lunch he announces that he’s got to go home now and heads for the exit. Generally he lets himself be persuaded by the argument that he lives five kilometres away and that it’s too far to walk, that his wife isn’t at home at the moment and that we’ll drive him home in a couple of hours anyway.
Dementia (whether of the Alzheimer or vascular – the second most common – type) is a progressive, gradual disintegration of the personality. Short-term memory is usually one of the first things to go (although this should not be confused with an increase in forgetfulness – a general characteristic of ageing), things stored in long-term memory are generally much more resilient, so that people suffering from dementia can often tell you what happened fifty years ago but haven’t a clue about what happened yesterday, or an hour ago. But then other things start to go too, like language and facial recognition. More and more basic competences disappear; the ability to dress and feed oneself, continence. In the final stages even basic functions like standing, walking and chewing may fade away.
Anna’s dementia is pretty advanced. She’s lost a lot of her linguistic capability, so she usually can’t manage a comprehensible sentence. She is incontinent. She is also frequently sad, or frustrated, or angry, or all of these at the same time.
Like Hans, she often has problems sitting still. This is one of those days. She is walking around, checking doors, obviously frustrated that she has to be here. She clearly wants to be somewhere else, probably at home with her husband, whom she still recognises. But he needs the three days a week she spends with us, just to be able to continue coping with her for the rest of the time. He had his eightieth birthday a few weeks ago. My nose tells me that she needs to be taken to the toilet and cleaned. This is a constant problem, sometimes three or four times daily.
As a teenager, at the end of World War II, Anna spent a number of years as a forced-labour prisoner in the Soviet Union, before being allowed to return to
. She was almost certainly repeatedly raped during that period – it was the order of the day for German women who had contact with a Red Army furious at the treatment of their country by the Nazi invaders. Sometimes she lets me clean her, but more often her reaction to me in this very intimate situation is aggressive. Germany
I manage to guide her to the toilet but that’s as far as I get. After she tries to hit and kick me, I give up. A quarter of an hour later my (female) colleague has more luck.
People suffering from dementia live in a world of constant stress and insecurity. Every day they are faced with situations with which they cannot cope and with people (frequently those they love and who love them most) who cannot understand that they cannot cope. They themselves cannot understand that they cannot cope, since their capacity to understand things is shrinking daily.
In the early stages they often try to cover up the insufficiencies they experience and many become quite practiced and convincing at it. Not being able to remember something, they invent explanations for themselves and others – the term professionals use to describe this is “confabulation.”
Lunch is over and the majority of the visitors in the day-care centre are taking a nap. Anna, Gerry and Hans are not among them, they are all too uneasy. Hans heads for the exit. I intercept him.
“Hans, where do you want to go?”
“I just … well … you know …”
“Hans, you have to stay here for another while. Your wife isn’t at home right now.”
“Yes … right … it’s just … you know …”
He pauses. The words are not there. Suddenly the competent façade is gone and his face expresses the real Hans behind it; confusion, fear, despair. My heart wrenches.
“It’s part of the illness you have, Hans,” I tell him. “You just forget things. This morning you knew you were going to spend the day here, just like last week and the week before and the week before that too. You’ve forgotten it. It’s not your fault. It’s just that fucking Alzheimer.”
His face brightens a bit. I’ve made the right judgement, risking honesty.
“It’s terrible,” he says. “I know sometimes … but then …”
He breaks off again, confused. The thought was too complicated to follow through. But the peak of the stress is gone.
“Let’s see if we can’t find a cup of coffee,” I suggest. He grins at me and we walk back together to the living room.
As we enter we hear Gerry, querulous;
“And now, what happens now …?”