King Lear’s Fool says to him, quite early in Shakespeare’s play, “Thou should’st not have been old till thou hadst been wise.” “O! let me not be mad,” cries the king, “not mad, sweet heaven;/ Keep me in temper; I would not be mad.” It struck me, the last time I saw the play, that perhaps Lear had had a parent who had succumbed to Alzheimer’s. He is plagued by the spectre of insanity, haunted by it. It is not long before he says again: “O Fool! I shall go mad.” He knows what’s happening to him and, as his wits unravel, his worst fears are confirmed.
My mother, who is 90, has for five years been on a steep descent into that region of the mind where all bearings are lost and for which there is no known compass. Although there were signs of mental disorder before — severe paranoia, above all — she was still able to go about her daily life. Then she suddenly collapsed, physically and mentally, and when she returned to consciousness, she had forgotten her past.
She knew who I was, but nothing else. She was able to converse, as long as I provided the terms of reference, and sometimes she would tell me things about other people — people she didn’t know — that suggested she was busy in her mind constructing an alternative reality. Sometimes it was hard to follow what she said: she would invent words, or they would get mangled on her lips. Often she would be silent, or very formal, thanking me politely, as if I were the milkman or a shop assistant.
Bit by bit, she forgot how to do things: the phone was the first. It would ring and ring, until eventually she would work out the source of the irritating noise and take the receiver off the cradle and throw it aside. The television became nothing but a light box to her, with coloured shapes moving around abstractly. The printed word, eagerly devoured before, was equally abstract. For the past couple of years, she hasn’t known how to use a knife and fork.
She scarcely speaks to anyone, although she remains polite. She long ago abandoned her teeth (uncomfortable) and has little interest in wearing her glasses. It is unclear whether she still knows who I am. She says less and less to me, concentrating on running her tongue around her lips, an exploration that never loses its fascination.
The other day, experimentally, I said to her: “Do you ever see Simon?” To my astonishment, she replied immediately: “Yes. I saw him twice. But he wasn’t coming to see me, he came to see that the others were all right.” “Did you mind?” “No, he had to do what he did.” “How was he?” “Tired. He works very hard. But he was well.”
The astounding thing is that, although she had difficulty pronouncing some of the words, she spoke lucidly. Set against the years of increasing withdrawal, it was an astounding burst of eloquence. But once it was over, she went back to that inner territory where her life now takes place.
I go over and over the past, trying to locate a moment of fissure, the first crack in her sanity. Before her collapse, she was a talkative woman, with an opinion on everything. She had been a high-powered secretary, used to organising people and events, and was a stickler for detail. When she went into the retirement home, I discovered diaries dating back decades in which she described events in obsessive detail: “Did washing up. Sat down in front of television. Saw dust on leg of chair. Removed it.”
From the time I left home, more than 40 years ago, she lived alone; she had taken early retirement at 60, and gone to live in the country. When she tired of that, she came back to London. Occasionally she saw her sister, with whom she had little in common. She had no friends. Her interaction with others was therefore limited. She had stuffed animals that she spoke to, endowed with personalities and lined up to watch television with her. But she knew perfectly well that they were stuffed animals.
One day, she forgot my birthday. She was mortified; but she never remembered it again. On another occasion, she said to me: “I’ve wrapped up the CD player, but I don’t know how to get it to you.” I had casually said, at some point, “Do you still listen to your CDs?” and she had replied, “Music has died for me.” She imagined that I had said that I wanted the player. I said that I didn’t. It remained in the hall, wrapped up in string and brown paper, until I sold the flat.
All of this was worrying, but containable. I took her out as often as possible, mostly to remove her from the source of her paranoia, the imaginary upstairs neighbour who she believed was drilling holes in the ceiling and stealing her biscuits.
I referred her to the doctor, but she flushed her pills down the lavatory. Curiously, I didn’t consider dementia because all of this was an extension of her normal personality: she was naturally suspicious, obsessive, anxious and prone to irritability. Her redeeming grace had always been her sense of humour and her imagination.
After she collapsed and was whisked to the Royal Bethlem Hospital, I imagined that her memory loss would be temporary. The long faces of the medical team disabused me; she would never be able to live alone again. The home she moved to is impeccable, bright and full of activities. But little by little, the external world ceased to be real to her. The flowers that I sent twice a week went unregarded. It became impossible to know what she felt or wanted, or what might be going on in her mind. And so things stand. I have no idea how long she may live in this condition.
One watches. One waits. One tries to be there for her. And one peers into one’s own future, and trembles. This is the second experience I have had of Alzheimer’s: my dear friend, the play agent Peggy Ramsay, rapidly unhinged in front of all of us, while still in full harness, negotiating contracts and dealing with authors.
In her case, the condition involved an increasingly confused vocabulary and circularity of thought: round and round the same idea would go. She died soon after the full onset, however, and was communicating to the last, however erratically. Even then, I had thought, how can this be? This woman whose brilliance was legendary, whose knowledge of world literature and the history of art was all-encompassing, whose financial nous enabled her to wrestle world-famous producers to the ground?
Of course there had been warning signs. Her forgetfulness of names was notorious (notably those of her own clients) and she was eccentric and erratic at times, but these were tiny blips, of no account. And then, after an operation for breast cancer in her late seventies, it all unravelled.
For those of us who get by on our wits — writing, learning, framing opinions, expressing experience — this is an unspeakable horror. “O! let me not be mad, not mad, sweet heaven.” Acting, contrary to popular belief, is all about thinking. If the brain fails us even a little — a forgotten line, a missed cue — we go into a funk. And to watch these bright, forceful, intelligent women clouded over and mentally expunged by this malign spell has been nearly unendurable. But of course it affects everyone: one in 14 people over 65, one in five over 80.
There is, it seems, no antidote, no protection, no understanding of the processes. Or so I thought. Then one day I found myself seated next to Peter Beckwith, the property entrepreneur, and he told me about a project called The Disconnected Mind. Based in Edinburgh, and led by Professor Ian Deary (whose Intelligence: A Very Short Introduction is a classic on the subject), it makes use of an astonishing resource: the thorough IQ tests carried out in Scotland in 1947 on every 11-year-old (among them the actor Richard Wilson); the records include social background and diet.
A thousand of these people have been contacted and, at 74, have retaken the test, as well as giving blood samples and submitting to MRI scans. It is thus possible to trace their mental development at exactly the moment when significant changes most commonly take place, gauging the influence of social circumstances and diet on their subsequent cognitive abilities.
The decline of cognitive abilities is due to the alteration in myelin, the white matter that connects the brain cells: the question is why it alters differently in different people. The purpose of the project is not to cure dementia, but to discover the recipe for healthy ageing. It seems that this is our best chance to get to the root of the matter. Age Concern and Help the Aged is raising funds for this research and recently organised an evening where a number of actors — including Richard Wilson — read the testimonies of people in various stages of cognitive decline; it was deeply affecting.
I was able to spend a day with Deary and his team of exceptional scientists. The enthusiasm was palpable: even people studying the minutest phenomena, painstakingly sifting evidence, were clearly inspired by the prospect of coming to terms with a scourge that is no respecter of ability, upbringing or experience. The advances have already been exceptional; Age Concern and Help the Aged is campaigning to make sure that this opportunity is exploited to the utmost. I can think of no more urgent and important project for every one of us.
Age Concern and Help the Aged rely on donations to fund this work.
http://www.timesonline.co.uk/tol/life_and_style/health/mental_health/article7025518.ece
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