Actor Simon Callow
My mother and I are grappling with my uncle’s dementia. It’s painful stuff. He is now hospitalized. It’s particularly rough on my mother, who is heart-broken at seeing her beloved brother descend into the rage and fog of lunacy. But the gods lean down and help at the least suspecting moment. I just received a timely essay and lovely note from Simon Callow, the hyper-talented Brit who is an actor (films include “Amadeus”, “Room With A View”), a prolific director (of operas), and an acclaimed writer (hefty biographies of Charles Laughton and Orson Welles.)
Simon’s “Mum” is suffering from dementia as well, the second time he has gone through such an ordeal, and he gave me the authority to post his essay here on my blog. It is, as usual, a moving and insightful and elegant piece of writing. While he is nursing his mother, Simon tells me he is “acting in a film in which I play God, in seven different guises, and in rhyming couplets” which sounds rather alarming – I do hope this disconnected-mind thing isn’t contagious.
Seriously, read his essay, and if you can, make a donation to the wonderful charity he is supporting. I’ve posted a hot link below. After all, we’ll all be aged and shuffling around in tatty slippers in the not too distant future:
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, when Ian McKellen gave such a remarkable account of the king, that perhaps Lear had had a parent who had succumbed to Alzheimer’s. Throughout the play, 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:
I am a very foolish, fond old man,
Fourscore and upward, not an hour more or less;
And, to deal plainly, I fear I am not in my right mind.
My mother, who is ninety, 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 perfectly 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 that 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 pale coloured shapes moving around abstractly. The printed word, eagerly devoured before, was equally abstract to her. For the last couple of years, she hasn’t known how to use a knife and fork, so she has to be fed. She scarcely speaks to anyone, although she remains immensely polite. She long ago abandoned her teeth (uncomfortable) and has recently been less interested in wearing her glasses. It is very unclear whether she knows who I am. She says less and less to me, concentrating on running her tongue around her lips, an exploration which never loses its fascination. Often she says nothing at all for an hour. The other day, experimentally, I said to her: “Do you ever see Simon?” To my astonishment, she replied immediately. “Yes,” she said firmly, “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 in pronouncing some of the words, she spoke perfectly lucidly. It made sense. Set against the years of increasing withdrawal, as the nurses have confirmed, it was an astounding burst of eloquence. But once it was over, it was over, and 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 visible crack in her sanity. Before her collapse, she was an extremely talkative woman, with an opinion – often quite perverse – on everything. She had been a high-powered secretary, used to organising people and events, and was a stickler for detail. Her memory, it is true, was never very reliable, which is why she wrote everything down. When she went into the retirement home, I discovered among her papers diaries dating back decades in which she described in obsessive detail every single event of her life: “did washing up. Sat down in front of television. Saw dust on leg of chair. Removed it.” From the time I left home, over forty years ago, she had 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 her fellow human beings was therefore limited. She had stuffed animals which, like many people who live alone, she had endowed with personalities and to whom she spoke: she would line them up to watch the 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.” This was something I’d given her years before, and to which she listened all the time. 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 for myself. I said that I didn’t. It remained in the hall, wrapped up in string and brown paper, till 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 whom she believed was drilling holes in the ceiling and stealing her biscuits. I referred her to the doctor, but she flushed the pills he gave her down the lavatory. Curiously, I didn’t think that dementia might be behind all this, partly because it was an extension of her normal personality: she was naturally suspicious and obsessive, inclined to dramatise situations, fundamentally anxious and prone to irritability. Her redeeming grace had always been her sense of humour, which still surfaced from time to time, and her imagination, which was now clearly working overtime. When she collapsed and was whisked away to the Royal Bethlehem Hospital, and I saw her for the first time, 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, it became clear. She loathed the idea of going into a home, but there was no alternative: she needed trained support. The place is impeccable, bright, immaculate, cheerful, full of activities and participation. But little by little, the external world ceased to be real to her. The flowers that I sent twice a week went unregarded, nothing impinged. It became impossible to know what she felt or wanted, or what might possibly be going on in her mind. And so things stand. She’s a strong woman. 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 Peggy Ramsay, the great play agent, 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 quite 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 there, too. 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 reputation, 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, fiercely intelligent women clouded over and mentally expunged by this malign spell has been nearly unendurable. But of course it affects everyone: one in fourteen people over 65, one in five over 80. And it is progressive: research suggests that 80% of people diagnosed with mild mental deterioration go on to develop debilitating dementia within six years. There is, it seems, no antidote, no protection, no understanding of the processes. Or so I thought. I brightened up considerably when I found myself seated next to Peter Beckwith one day and he told me about a project called The Disconnected Mind. Based in Edinburgh, and led by Professor Ian Deary (whose wonderfully lucid A Very Short Introduction to Intelligence is a classic on the subject), it makes use of an astonishing resource: the very thorough IQ tests carried out in Scotland in 1947 on every 11-year-old child (among them the actor Richard Wilson); the tests included social background and diet. A thousand – now 74-year-old – people tested in the Edinburgh and Lothian districts have been contacted and have re-taken the identical 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 which connects the brain cells: the question is why it alters differently in different individuals. The purpose of the Project is not to cure dementia, but to discover the recipe for healthy ageing. It seems that this is the best chance we have ever had to get to the root of the matter. Age Concern and Help the Aged has thrown itself wholly behind it and recently organised an extraordinary evening where a number of actors – including Richard Wilson – read the oral testimonies of people in various stages of cognitive decline; it was deeply affecting for all of us.
I felt so passionately about the work that I recently went down to Edinburgh and spent a day with Ian Deary and his team of exceptional scientists. The place was in the grip of a tremendous fervour of enthusiasm: 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, and that can start working its silent destruction on any of us at any time. Every room of that large building contained some state-of-the-art equipment, each with its expert fiercely focussed on what he or she was discovering. Here was brain imaging, there was analysis of blood, elsewhere were laboratory experiments with rodents. Everywhere was hope. The advances have already been exceptional; Age Concern and Help the Aged is campaigning to make sure that this once-in-an epoch opportunity is seized and exploited to the uttermost. I can think of no more urgent and important project for every one of us on the planet.
Age Concern and Help the Aged rely on the generous donations of the public to fund this work. For more information or to donate please visit the website or call +44 (0207) 239 1984.