The longest goodbye: a multi-talented woman, then Alzheimers took hold and theatre legend Richard Eyre saw his mother slowly stolen away
We can alleviate physical pain, but mental pain grief, despair, depression, dementia is less accessible to treatment. Its connected to who we are our personality, our character, our soul, if you like. Physical pain however great, said Alice James (the sister of Henry, the novelist), ends in itself and falls away like dry husks from the mind, while moral discords and nervous horrors sear the soul.
Alzheimers disease is a nervous horror, a form of dementia a word that means without mind. If theres a physical disease it resembles its leprosy, which eats away the body as Alzheimers does the brain.
Painful: Theatre legend Richard Eyre saw his mother, Minna slowly stolen away as Alzheimer's took hold
Alzheimers disease is always in the news. So it should be. There are estimated to be 750,000 dementia sufferers in Britain. Thats a city the size of Glasgow.
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The most distressing thing is that the person dies, in effect, before they have physically gone. So you are suffering from a sort of bereavement while their life is still going on, he said in a magazine interview.Last month, a leading doctor called for a debate on whether GPs or nurses should carry out memory tests on the elderly, with over-75s being routinely tested for dementia. Professor Clive Ballard, head of the Alzheimers Society, believes such checks would vastly improve the rates of diagnosis of dementia, enabling patients to be treated to delay the onset of symptoms.
True life: Jim Broadbent watched his mother suffer from alzheimer's and it's a subject he grappled with in the film Iris where he played the part of John Bayley opposite Judi Dench as his wife, Iris Murdoch who also suffers with the diseaseMeanwhile, U.S. researchers have just revealed that brain scans could help detect the disease up to a decade before the symptoms develop because certain areas of the brain affected start shrinking years before it takes a serious hold.
There are those who argue that the tests are inadequate and a positive diagnosis only needlessly blights the remaining years of lucidity.
I disagree. First, it has to be better for potential sufferers and those who would become their carers to prepare themselves for what is to come. And, second, there are some signs that drugs can be effective in arresting the condition, even though research is desperately underfunded: a mere 2.5 per cent of the Governments medical research budget is spent on investigating dementia.
Id be happy to take the test myself now even though I have a few (seven) years to go before Im 75. I dont want to tumble over a precipice without knowing its there.
If the test were negative then theres much to c! elebrate . But if positive, as Hamlet says, The readiness is all. Hes talking about death, of course, but thats what Alzheimers leads to: a slow waning of life.
Better to know yourself, and better still for those who will have to care for you to know.
Meanwhile, at best, carers are given training in empathising with sufferers from dementia. They are supplied with goggles that distort vision, gloves that reduce the sense of touch, and white noise to induce frustration, confusion and loss of control.
At worst, they are given no training and the patients are left neglected and rotting, like human garbage.It was over a decade ago that I was approached to direct Iris. It was a sort of love story, but also an account of her illness and death.
Why did you ask me? I asked the producer.
You know about these things, he replied.
The things to which he referred were not so much making films or directing actors in difficult roles, but a thing Id rather have been entirely ignorant of: Alzheimers disease. Iris Murdoch was diagnosed with the disease in 1997. My mother also had it and died in 1992. Iris Murdochs decline was over a period of two years; my mothers was over 20.
Those critics have not lived with an Alzheimers sufferer. They have not known the weariness of dressing and undressing, bathing and feeding, or the despair and exasperation engendered by broken nights, incomprehensible sounds, unpredictable moods and inexpressible needs. And all the while watching, watching the loved one simply fade away.
Organiser: Minna in 1947 with her husband, Richard, daughter Georgina, right, and son, also RichardWhen she was 52, my mother fell downstairs on her head carrying my sisters daughte! r. The b aby, who was two at the time, was unharmed, but my mother fractured her skull. The fracture healed and at first it seemed as if the only other damage was to my mothers nervous system.
She was a wonderful self-taught cook, by any standards touched with genius; holding the secret of the perfect meringue. So it was distressing to her, and a painful loss to her family, when she began to lose her sense of smell and her sense of taste and, naturally enough, her skill and enthusiasm for cooking.
But then, little by little, other things dropped away and it became apparent that the concussion and the brain fracture, indeed the fall downstairs, were not the cause but more likely the effect of her condition. She was diagnosed as a sufferer of what was then called Pre-Senile Dementia. It was the same thing by any name: she was old before her time.
Alzheimers disease respects the persons individuality, as each person responds differently to the illness, which often magnifies the characteristics of their temperament.
In her illness, Iris Murdoch responded, as she had in health, to humour and, yes, to goodness a quality that she examined in most of her novels. In my mothers case her temperament had been modified by the long attritional drizzle of a not very happy marriage. So when she started to lose her mind it was the woman she had become whose characteristics were being amplified: disappointment, anxiety, anger and loneliness.
Noticeable change: With Alzheimer's, short-term memory dissolves, while the long-term continues to be active for a timePerhaps its self-protection, but if I think of her now its not as she was when she was diminished by Alzheimers disease or even in the few years before that; its as she was when I was a child, when there was everything to look forward to.
She was a dedicated, knowledgeable and enthusiastic gardener who spoke of plants by their Latin names w! ith the confident certainty of an expert, and she was an organiser with an idiosyncratic but systematic method of reducing chaos to order.
List followed list as she marshalled her resources with the flair of a natural general. It wasnt unusual to be asked at supper what you wanted for breakfast, lunch and dinner the next day, or to find her planning her Christmas shopping in June.
So it was alarming to stagger through conversations in which she would forget her previous sentence while halfway through the new one and to see her start to stare speculatively at her knife and fork as if unsure of their use.
With Alzheimers, short-term memory dissolves, while the long-term continues to be active for a time. My mother started to watch television a lot, sitting mostly silent and immobile until one of her friends from the past appeared on the box. She had been a debutante (the merriest girl of the year), so she had opportunity enough to recognise retired Cabinet ministers, senior businessmen, even a society serial murderer when they appeared in documentaries or on the news.
In the case of the then U.S. President, she even remembered his name: Ronald Reagan, she said, Dull man, but frightfully good dancer. Later, as the illness took hold with a glacial slowness, she would start to cry in frustration when she forget how to write the M in her Christian name, Minna. Then, unable to write her lists, she started to forget what she had to do, or even where she was.
When she took my daughter, aged four, to the village shop, a journey of a few hundred yards, my wife thought it safer to follow them as the two set off hand in hand, chatting simultaneously, uncertain who was leading whom. For a while I tried to convince myself her illness was reversible, but when one day I opened a door for her and she stared at the door, then at the doorway and asked me with undisguised ! terror: Which side do I go? I knew she was losing her mind, and that there was no way she would ever recover it.
For a while she was living at home in Dorset, but with her bouts of terrifying rage, followed by incoherence, followed by blankness, followed by clear breaks of sanity that were more frightening to her than anything that had preceded them, it became impossible for my father to look after her properly.
My sister and I helped from time to time not enough in my case but we were mostly far away in London, which is where my mother longed to be as if her life, or her sanity, depended on it:
Please, please, please, please, please, please...take me home...take me back to my mother...my friends...take me to London...let me go in a train...please, please, please, please...
Then there was a silence, an absence of words and a despair so deep that it almost seemed as if her breath were speech, then a sigh:
I think I am dying.
But she lived on for years, lying on the floor in a foetal position on a beanbag in the local hospital. For years she was losing her mind, and for years death seemed ashamed to approach her. But little by little she was slipping away, and we never knew when to say goodbye.
My mothers face became impassive as her mind receded the so-called lion face of Alzheimers sufferers but Iris Murdoch retained her ability to smile, albeit only intermittently, until the end. As her husband, John Bayley said: Only a joke survives, the last thing that finds its way into consciousness when the brain is atrophied.
The joke didnt survive with my mother, but in some way, despite becoming less and less the person I knew in looks or speech or manner, she was not exactly absent: she retained her soul until her death.
I used to sit with my hand on her forehead. She seemed unbearably lonely, but shed seemed like that to me even before she lost her mind. My sadness at her illness became muted over the years, but I never lost the distress of the things I had left unsaid. There are th! ose who leave without our needing to detain them; we have said all there is to say.
It wasnt so with her; there was a continent of regret and guilt.
Her face and her body wasted away. No sight, no hearing, no sense at all. She breathed and ate and wasted away.
I can still see her hand, bony like a claw, plucking at her face, as if she was surprised that it was still there. When she died her body was like a childs.
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