How could any carer scold an old man just for doing up his buttons wrongly Arlene Phillips recalls her father's death from dementia
01:01 GMT, 2 April 2012
Anguish: Arlene remembers her father's agonising illness
Alzheimer's reduced my father Abraham, an intelligent, smart and self-sufficient man, to a pitiful shell of a human being.
Almost the last sentence he ever articulated was: ‘I’ve lived my life now. I just want to curl up in the woods and go to sleep.’ This was how he expressed his frustration and desolation with a life that, in the end, held no purpose.
He no longer recognised my sister and me. Simple words eluded him. Although he had always loved to read, the written word became a mystery to him. All that remained of his humanity, in truth, was his stubbornly beating heart.
It was sorrowful that my sister and I should have seen him so reduced — to the extent that I now think Dignitas would have been the right option for him. It sounds drastic, but it would have spared him that final slide into emptiness and bewilderment.
The father we had known before illness diminished him had been so active and full of zest for life. He worked as a barber, but his passion was books. At the weekends, my brother, sister and I would visit antique markets with him and rummage for rare volumes.
As a family, we often went to the ballet, fostering my passion for dance which, of course, became my career.
We enjoyed country walks together, too. Gardening was another of my father’s great pleasures and I cherish the memory of him sitting outside in the sunshine.
When my mother died, prematurely of leukaemia, aged 43, I was 15. It hit Dad very hard and life for all of us was difficult. But we all battled together and, over time, became even closer.
Although it is now 12 years since my dear dad died, aged 89, the image of him came back to me in sharp focus again last week when I confronted David Cameron at a question-and-answer session at a conference about the way we care — or, more pertinently, fail to care — for dementia sufferers in this country.
As a supporter of the Alzheimer’s Society, I asked Mr Cameron to focus on the vital question of how we train our nurses to be compassionate carers.
And I did so because, while I have witnessed good care, I have also seen a conspicuous lack of it, both in one of the nursing homes to which my father was admitted, and also, more recently, in a hospital.
Three months ago, I visited my partner’s 83-year-old mother in a hospital in Herefordshire, where she needed emergency treatment for suspected appendicitis. Although she does not suffer from dementia — far from it — other patients on the ward did. And it was some of the nurses’ disregard for their needs that re-ignited my concerns.
One elderly woman was palpably confused and disoriented. She cried out for help repeatedly, but was ignored with such stubborn persistence by some of the nurses that I wondered, frankly, if they had failed to grasp that compassion is at the core of their vocation.
There were no kind words; much less offers of help. Even a transitory smile might have provided some comfort — but during my visit what struck me most insistently was the sense that the woman in the hospital bed might as well have been invisible.
That is why I asked the Prime Minister the vital and pressing question: how do you propose to teach nurses to care for those with dementia /04/02/article-2123815-125E84D4000005DC-93_634x692.jpg” width=”634″ height=”692″ alt=”Early days: Arlene's father Abraham with her daughter Alana, aged seven” class=”blkBorder” />
Early days: Arlene's father Abraham with her daughter Alana, aged seven
He acknowledged — as I have done — that some hospitals do perform admirably; that the level of care and attention from many nurses is first class. But he also confessed that some of our hospitals are quite simply not good enough.
‘You are right, you cannot teach people compassion — that has to be the vocation that leads you into nursing. But I think if you look at the best hospitals and compare them with the rest, there are some things they are doing, often quite simple things, that can be copied,’ Mr Cameron said.
‘Dementia,’ he conceded, ‘is a terrible disease.’ And he admitted that it is a scandal we have failed to keep pace with it. ‘It is as though we’ve been in collective denial,’ he said.
My own experience corroborates this; for even in the expensive private home to which my father was admitted when caring for him finally proved too much for me in 1990, there were staff who not only lacked compassion, but were astonishingly rude and demeaning.
Just a few weeks after he arrived in the home, I visited Dad and discovered a carer scolding him roundly. Her voice was pitched high with annoyance and indignation. My father looked abashed, like a recalcitrant schoolboy, because that was how he was being treated. What was his crime He had merely failed to do up his buttons correctly.
Distressed and angry: Arlene was furious that someone paid to look after her father should show him such conspicuous disdain
I was distressed and angry that someone paid to be kind to him should show him such conspicuous disdain. Had the incident been an isolated one, I might have been less incensed, but there were other examples of flagrant neglect.
On one occasion when I visited, I discovered Dad, who was by then too bewildered to navigate the route to the dining room, alone and hungry in his room. Another carer, charged with ensuring he ate with the other patients, had simply not bothered to fetch him.
Dad was not able to tell me, of course, how long her negligence had persisted. Would he eventually have been left to starve, I wonder, had I not discovered this systematic disregard for his most basic needs
Certainly such incidents contributed to the guilt I felt about putting him in a home. I had never wanted him to go into one and had wanted to look after him myself — as, for a time, I did.
In the early days in the late Eighties, his illness barely manifested itself. The first signs were a propensity to wander, allied to a disquieting tendency to get lost.
Dad, then 77, had lived alone in his flat in North-West London since Mum’s death decades earlier. Thankfully, he was only a stone’s throw away from me. I loved the fact that he lived close by — and he, in turn, loved being in London.
To begin with, I thought old age was making him a little absent-minded, but I didn’t worry. Then the aimless wandering became worryingly frequent. In the end, to help him navigate his way home, I ensured every one of his coat pockets contained his address and my phone number.
But eventually, heartbreakingly — even though the police had started to drive him home — he stopped being able to recognise his own front door.
From then on, his behaviour became not only unusual, but potentially dangerous. He started brewing tea in the electric kettle and one day I found him heating baked beans on the gas stove, while they were still sealed in the tin.
So I arranged for social services to bring him meals. Looking back, it was clearly a sign of his growing bewilderment that, although he had always been keenly independent, he did not resist this help. But soon, in common with many victims of Alzheimer’s, he started to become fearful. He was suddenly suspicious of strangers and unwilling to accept visitors to his home.
It fell to me to deliver his meals, which I did in breaks between choreographing various shows in the West End.
He needed help, too, with washing and dressing, and to see a man once so meticulous about his appearance struggling with such intimate tasks was heartbreaking. The disease continued its cruel and inescapable progress. Dad’s speaking became problematic. His vocabulary shrank and he struggled to match his thoughts with the right expressions.
Sad demise: Abraham had stopped being able to recognise his own front door
Reading, which he had loved, became an arduous and frustrating chore. Gradually, even the pleasure of books deserted him. Within a couple of years, he was utterly diminished. The transformation was devastating.
Meanwhile, every day life for me was becoming a struggle. I was trying to be a mother to my children; I was working full-time. And then there was Dad. It did not occur to me to get outside assistance or medical advice, as I felt there was little doctors could do. What’s more, I wanted to look after Dad myself: I loved him so much.
But then, in 1990, after eight years of caring for him, something snapped. It was a day like any other. I had just finished a rehearsal for Starlight Express in the West End and rushed over in the two-hour break before the show started to take Dad his dinner.
As I stood outside his flat, I thought: ‘I can’t carry on like this — I can’t do everything for everyone. Something has to change.’
So that was when I moved Dad to a care home. I consoled myself that it was reputable; a highly recommended, first-class establishment, and, indeed, on the surface it seemed lovely. But after six months I was utterly disgusted and disillusioned.
So we moved Dad and it was around 1992 when, mercifully, he was installed at a wonderful place in Leeds, near my sister, where he spent the last eight years of his life. The nurses there were warm and loving; they accorded him dignity and respect. They smiled and made eye contact; they had time both to talk and listen.
There were numerous volunteers who arrived regularly to chat to the residents. Singing and dancing lessons were weekly events and there was an art therapy group.
So I have seen both the best and worst of things, both in private care homes and in the NHS, and I am glad that, as Dad’s life ebbed away, he was treated with care and compassion (although, at the end, he was relieved to die because he had become a shadow of his old self).
It is little to ask, isn’t it, that if the minds of our loved-ones fail them, we should take for granted that those entrusted with their care do, indeed, look after them
All the elderly, of course, deserve our respect and kindness. But those with Alzheimer’s are among the most vulnerable because the disease that afflicts them also robs them of memory and renders them child-like.
That is no reason, however, to treat them as if they were children. Losing yourself is awful enough without being subjected to that extra humiliation.
So as I said to the Prime Minister, we must teach our carers to be worthy of the name. Actually, we must do more than that. We must all learn the value of compassion and kindness because we, too, will grow old and need it ourselves one day.