In robbing my darling mother of her memory, I often wonder if the inscrutable gods have been kinder to her than to me...
PETRONELLA WYATT’S painfully honest account of her mother’s drift into dementia will strike a chord with millions
WITH laser-like clarity, I remember the morning my mother failed to recognise me. It was five years ago this month. We had always been close, and I was living with her in London, acting as her carer. Then in her 80s, she had slowly but surely been losing her mobility and memory. Hungarian by birth, and the widow of a peer (my father was Lord Wyatt, the politician and chairman of gambling company The Tote), she had always been a distinctive and beloved figure in London society. Now, however, her grip on reality was becoming ever more tenuous.
It began, as these things do, in small ways, but they came in battalions. If she couldn’t find a favourite skirt, she would assume it had been stolen. If her mobile wasn’t working, she would ring the bank and ask them to repair it. Initially, this was faintly amusing (at least I pretended it was ) – when, for example, she berated an employee of HSBC for refusing to provide her with a new iPhone charger. One day, she inexplicably invited her Uber driver to come and live with us. He found the idea agreeable, and it wasn’t until
I’d paid £100 that he got back in his car.
But that dull and rain-lashed morning, I could no longer force myself to laugh. I remember going into her room at about 9am.
Her usually bright, dark eyes were blank and hostile. She stood as erect and precise as the lines of a Clichy crystal and said: ‘Who are you?’ I was woefully unprepared. My emotions ran full tilt into a wall. ‘It’s me. Your daughter.’
‘No, you aren’t my daughter,’ she replied. ‘You’re an impostor.’ She then threatened to have me arrested. ‘I’m calling the police,’ she said. I ran from the house, out into the street sobbing, in a universe of horror. We define ourselves through the eyes of others, mainly those closest to us. My father had died, aged 79, in 1997. Now I was nobody’s. In the space of seconds, I had been orphaned. I didn’t want to face the truth: that my mother had early-onset dementia. This brilliant woman had been an overwhelming presence in my life for so long. What would become of her – of me?
HER given name was Veronica, but everyone called her Verushka. A refugee from Communism, she had come to England aged 20, with a case full of blackmarket sterling that turned out to be counterfeit. She had triumphed over every setback.
Catching the eye of the director and producer Sir Alexander Korda, she received an entree into London society and the high-octane world of politics. It was in the 1960s that she met my father, who was then a Labour MP, and in 1966, they married.
My christening was attended by Harold Wilson and various members of the aristocracy and intelligentsia. People found my mother winsome and sharp, with an allure that crossed all frontiers. No slave to convention, she spoke her mind with trenchant wit.
Occasionally, as a child, this caused me embarrassment, but as I grew up I began to adore both her singularity and her company.
That someone so vital should succumb to dementia seemed unthinkable. Despite its increasing prevalence, dementia is the illness that still dares not speak its name. There remains a shocking failure to talk about dementia or to provide assistance to the relatives of sufferers. It’s as if its victims are not ordinary human beings but Mrs Rochesters, who should be confined to attics or imprisoned in Bedlam. Diseases of the mind leave us palpably uneasy.
After my mother had denied me, her own daughter, I telephoned a GP she had been seeing for four years. My distress seemed to make no difference. ‘It’s old age,’ he said bluntly. ‘She was always a bit eccentric. Deal with it.’ Old age? Always a bit eccentric? And how was I to deal with it?
For a few months, my mother’s symptoms eased and she sometimes knew me again. But how was I to cope with her leaving the gas on – her sudden aggression that manifested itself in physical violence of a strength that was astonishing in a frail woman? On one occasion, I had to wrestle a kitchen knife out of her hand. As the disease progressed, I lived on a tightrope of anxiety.
Once, at 2am in the morning I was awakened by her banging on my door. ‘Why are you asleep?’ she demanded. ‘It’s lunchtime. I’m hungry.’ As I was to discover, to argue with dementia is futile. The reality of the sufferer is as real and fixed as our own. Increasingly, my mother had gone, replaced by a hostile stranger.
I could not find any help, even when she refused to go on taking the medicine her cardiologist had prescribed for her blood pressure.
After nine sleepless and harrowing months, I eventually went to another doctor. He suggested antidepressants. ‘Are they for her, or for me?’ I asked. He explained they were mild anti-psychotics for my mother and would prevent further episodes of anger and distress.
How, I wondered, would I get her to take them? ‘I need help,’ I kept saying. ‘I need a professional.’
His eyebrows lifted. Finally, he suggested I look for a carer. I spent days doing my research and called several London agencies. At nearly £2,000 a week, live-in care was beyond the budget of all but the very rich. I struggled on.
When friends asked how my mother was, I lied. I didn’t want people to know, as wherever fear and superstition run in the veins, ignorance lays its traps. Malicious gossip was the last thing we needed. I tried to persuade her to take the anti-psychotics, but she wouldn’t. Her mood swings became worse. And I couldn’t help her. There is no cure for dementia, and doctors don’t seem to know the exact cause. It is deeply depressing how little research is done into this disease, compared with other terminal illnesses. Perhaps my mother’s brain was simply wearing out?
There is an adage that people either age from the neck down or the neck up. Eventually, after a year, I discovered I wasn’t alone in my plight – I found a WhatsApp group of people who had parents with dementia. I wasn’t heartened, however, when one of them told me it had taken three years to get an official diagnosis for her father.
Dementia is diagnosed in a way so primitive that it hasn’t changed for 100 years. People are asked to draw a clock. But what if they won’t co-operate? It was suggested I develop a different attitude towards my mother’s illness. ‘Don’t argue with her. Try humour, if you can manage it. You might get the help of a social worker, but in my experience, most of them are very young and not properly trained.’
A social worker did agree to visit. She was in her early 20s, pleasant and smelt of Jo Malone, but her attitude puzzled me. My mother had by this stage forgotten her marriage to my father, but had a supply of fictional husbands, one of whom was Rupert Murdoch. One afternoon, the social worker flicked her long hair and asked me to buy my mother a grand piano. She
If her mobile phone wasn’t working, she’d ask her bank to repair it
gave no reason for this other than she ‘wants one’. I pointed out that grand pianos were expensive.
‘But you must be one of the richest women in England,’ she went on. ‘Your father’s Rupert Murdoch...’ I replied that a quick perusal of my Wikipedia entry would set her straight. She never visited again.
Over a year had gone by and soon my mother was claiming once more that I was not her daughter, or indeed related to her in any way, but an intruder. I was also becoming worried by her continuing refusal to take her blood-pressure medication, which she now believed was poison. Necessity made me formidable.
My own health was disintegrating. It became a question of survival. The catalyst came a few days later, when she contracted an infection but refused to go into hospital. An ambulance was called and there was a dreadful scene as we tried to persuade her to co-operate.
The doctor took me aside and finally put it into words: my mother lacked mental capacity. I travelled with her to the hospital, where they wanted to put her under observation for the weekend. I asked the hospital staff not to discharge Mum until I got back. They promised they wouldn’t, but they did. They discharged a frail woman with dementia, and unable to feed herself, back into an empty house.
She was taken back to hospital. Still, nobody would make an official diagnosis. On and on it went, fruitlessly. I could no longer care for my mother, and she could not function. The system wasn’t working. We lacked the money for a private care home and the local council didn’t want her on their hands. She stayed in hospital for more than two months because the system heard our cries for help, then turned its face to the wall. There was no sympathy for either of us.
Ironically, I often wondered if my mother was happier than I, inhabiting her new world. She still managed to laugh and lived with a mischievous child inside her. There is no superior rationality in being unhappy. Most of us will be as happy as circumstances permit and if we find contemplation of the world painful beyond a point, we will contemplate something else instead.
My mother had left her problems and worries behind. She no longer fretted over bills or everyday travails. She believed herself to be rich. She told me she had bought a castle in Sussex and had taken a first-class flight to Australia. Dementia took her everywhere and opened all doors. One week she was chairman of the BBC, another she was an undercover policewoman. I was a little disturbed when she said she was the madam of a brothel.
Humans, like other animals, are adapted to a certain amount of struggle for life. We also need excitement. But some element of boredom is a necessary ingredient. It is usually possible to shut out the ordinary troubles of ordinary days in the evenings. But for me there was no such respite.
Once, the hospital moved her out of London to a hospital in Kent without informing me. They said they had needed the bed. Incandescent, I said I would consult a human rights lawyer. It was only this threat that achieved something. They began looking to find her a temporary place in care. Eventually, she was admitted to a care home near our house in London. At last, I assumed we had relief. She was safe and well looked after. Or so I thought.
Though most of the staff seemed very kind, items of clothing went missing, including new shoes I had bought her. Once again, there were complaints about my mother’s behaviour. Dementia destroys the inhibitions. Of course my mother’s language changed accordingly.
The staff were paid professionals. Why were they not equal to the situation? I had returned from a break abroad when I was told that sores on my mother’s feet had become so severe that they had sent her back to hospital. When I saw her, I could see her image before me, but nothing else. Now she had thrown off her Britishness and reverted to the world of her motherland, speaking only in Hungarian.
Previously, I would remind her that I was her daughter and once in a while she had seemed to accept it, if only for a few minutes, before I had to tell her again. We would hold each other close. Now she wouldn’t even let me touch her.
Physical contact is essential to humans, and without it our lives are pointless and bereft. This is the cruellest part of dementia: it exacts not one death, but two.
When, eventually, my mother dies, I won’t know who to mourn. At present, she is in another home, but I keep her bedroom just as it was for when she comes back. My father passed away under the grimmest circumstances in a hospital, and I don’t want that for her. I wish I could forget the nightmare that has overtaken us. God knows, I’ve tried. Sometimes I wonder if the inscrutable gods, in robbing my darling mother of her memory, have been kinder to her than to me.
I wondered if she was happier than I was, inhabiting her new world