Dealing with Dementia: 'My dad was treated like lost luggage on a carousel'
Special report: When her father was diagnosed with dementia, Arifa Akbar embarked upon a journey through an abusive and negligent care system. In the first of a four-part series on the illness, she asks why, if we're all living longer, we still treat long-term sufferers as though they were the living dead
My father turned 81 in May, but in a weary mood he will insist he is anywhere between 85 and 150. Sometimes he thinks he is living in a submarine off the shores of Norway, other times in Shimla, India, where he was born, or Lahore, where he was raised.
In reflective moments, he looks up to the ceiling and says it's going to rain, as if he can see storm clouds gathering there. He tells me his father is watching him from the other side of the room, pointing to the small shaving mirror, at his own reflection. When he's agitated, he shouts for hours at a time.
There are periods when he is lucid and warm; he'll tell me that I need to eat more, get more sleep. "What's the name of the newspaper you work for?" he'll ask. Then, as I'm about to leave, he'll say, "Am I dead? Did you bring my death certificate?"
This is what dementia is like for him. Having spent years observing his illness, I realise it is nothing like the cliché of the "living death", as it is often called. His brain might be sending the wrong signals, but it also seems to be working overtime, imagining unfeasible things with little distinction between what is happening out there, in the real world, and in his own head.
The first signs of this confusion emerged a decade ago when he gave up work at 71. He was a British Rail ticket collector and he loved his job. At first we thought he was just depressed. He began writing lists of the illnesses he thought he had; he wrote apology letters to the council. More worryingly, he stopped eating, paranoid that someone was trying to poison him.
A year on from retirement, he looked emaciated. Then he took an overdose of sleeping pills and was admitted to the Royal Free Hospital in North London. The ward was cramped and noisy, filled with elderly people suffering from various mental health complaints, but he seemed relieved to be there.
His behaviour became more erratic – he poured a boiling cup of tea over himself and took to rolling around on the floor, so he was appointed a one-to-one carer who was supposed to watch over him.
He stayed at the Royal Free for almost a year, not fully diagnosed until there was an incident on the ward in which he behaved inappropriately towards another patient. Soon afterwards, we were told he had fronto-temporal dementia, which leads to aggression, sexual disinhibition, personality and behavioural changes as well as the usual "time-of-day" confusions.
It was harrowing to watch him change in these ways, and it completely unseated my view that everyone has a "fixed" personality. My father's behaviour showed, shockingly, that personality is just a function, or malfunction, of neurology.
He was sectioned, and suddenly his life was not his own. One day, his psychiatrist phoned to tell us that he was being sent away to a secure ward in a psychiatric hospital in Northampton, miles away from his family and friends. We expressed our worries, but were told that this hospital was the nearest place that could deal with his dementia.
There was no disputing his challenging behaviour, but to us it seemed like he had become victim to a form of dementia that had, for so long, remained undiagnosed, and which his medical team could not manage.
The place he was headed to – St Andrew's Hospital – had opened as a "lunatic asylum" in the 19th century and has since become the country's largest mental health facility. For the next two years, he lived on a forensic ward, which seemed to have a number of men with prison histories, one of whom hit my father.
The first time I went up to see him, he was dressed in someone else's black-and-white striped jersey, so he looked like a comic-strip prisoner. He had lost more weight and looked bewildered. One of his new doctors told me he would not be able to leave the ward for longer than an hour each day.
When I asked whether he could visit his home in London so that some connection to his old world would remain, permission was refused. It was only after an angry conversation with the doctor that permission was given for my father to be signed off for long enough to make the trips home.
A few months after he moved to Northampton, he began to resemble the kind of patient you imagine living in a secure unit. He walked with his eyes half closed, tripped over his feet or sat slumped in a chair, slurring his words and drooling or spitting compulsively. Who can say how much of this was related to the actual dementia? To me, he looked doped up.
Over the years, I have been told that the anti-psychotic drugs he has been on are important in easing his aggression and hallucinations. I have never seen him more depressed or suicidal than during this period in St Andrew's, especially in his more clear-headed moments, when he would repeatedly say that he wanted to die.
Two years later, his team from London moved him to a nursing home in Croydon. I breathed a sigh of relief. I had been campaigning for him to leave St Andrew's and he would now be closer to home. The frothing at the mouth and zombie-like torpor stopped; he was still difficult to manage, but he seemed much happier.
We ignored the fact that he often smelt of urine when we visited. Much later, we discovered that some staff members in Croydon had been stealing from his account to buy KFC takeaways and using his mobile phone to make personal calls, for which we received an apology.
Since becoming ill, he has moved five times, and increasingly it seemed like he was a piece of lost luggage on a dementia carousel. Each move has led to a loss of his worldly possessions: TV sets, mobile phones, DVD players, even his suitcase, have all gone "missing".
I became so dismayed by this over the years that I thought about making an official complaint, but fighting the greater demands of his illness took up so much energy – I can only imagine how much harder it is for full-time carers – that I stopped myself.
We also tried to get used to seeing him in other patient's clothes – oversized sweatshirts, odd socks, tatty slippers – but it always made me flinch. They were small confusions, but they left me with the queasy sense that those who manage elderly patients regard their clothes, shoes – and ultimately their identities – as somehow interchangeable.
After he spent a couple of years in Croydon, the home came under investigation, so he was moved again to a stark, hospital-like set-up in Hampstead. Here, I would find him sitting in his room, alone, staring at the walls. Carers would come in when I visited, often raising their voices to talk to him even though there was nothing wrong with his hearing, or they'd coo at him, the way you would at a baby. Worse still, some would sometimes speak about him in the third person, as if he wasn't there.
Many of these carers struggled to understand my English. In turn, I could not always follow what they were saying. The language barrier did not make me doubt their diligence, but it certainly made me wonder why they had been designated to work on a long-stay dementia ward, where effective communication is paramount. How could they talk to, and listen to, a patient effectively if they couldn't understand me when I was announcing myself on the telephone?
In this home, he wasn't allowed his own duvet, or cushions, or anything that might remind him that he had once lived in an ordinary family home, because "regulations" didn't allow it. Then there were the smaller indignities. When he ate, a gigantic plastic bib the size of a cagoul was wrapped around him; the lead to his radio disappeared for weeks.
For most of us, a missing radio lead means nothing. To my father, the radio was his lifeline to the outside world, fending off the tedious silence of this hospitalised life. He became quieter, sadder and less mobile. Of course, the decline was due in part to his illness but I believe that the isolation, and neglect, however unintentional, accelerated his decline.
Whenever I visited, a patient in the furthest room of the ward would be shouting for help. It was a high-pitched, endlessly repeated distress call. When I mentioned it to staff, I was told not to concern myself. For me, this disembodied voice became a metaphor for a dementia patient stranded in a hospital atmosphere – living a reduced life in a cell-like single room, dressed in other people's clothes, shouting for help (or temporary comfort) that never came.
This is not a sweeping indictment of the care profession. My father's psychiatrist has been supportive. I have seen carers work devotedly, but what alarms me is the lack of specialist training.
My father's story is not a worst-case scenario. Dementia can strip people not only of their mental capacities, but for those who need professional care, it can cost them their life savings. My father had nothing to lose – he had worked all his life but never earned very much. I was stunned to learn that the cost of his care has ranged between £800 to £1,000 per week.
Had he been well-off, he would have been paying dearly for his (less than perfect) care. He might still have been living a hospital-style ward were it not for a woman from the Office of the Public Guardian – the court that grants legal deputies. She kept a tight-lipped silence when I told her about his care and encouraged me to look for a new home that had been rated highly by the supervising body, the Care Quality Commission (CQC). As it turned out, the ward where he was staying was due to close down anyway, so he would have had to be re-housed once again.
It was then that I discovered Ash Court Care Centre, in Kentish Town, north London, and was astonished when I walked in to its airy conservatory and saw a pot of fresh coffee, a vase of flowers and felt a clean, homely warmth. This is where he has lived for the past year. Despite its excellence, it has made headlines over an incident of patient abuse, which just goes to show that bad nurses can sometimes be found in good homes.
It is a remarkable place – Bobby and Christine, his key nurses, do their job as if it were their life's passion. Nancy Rasool, the manager, is a perfectionist, visiting each resident most mornings, talking to them with genuine respect, and paying attention to every detail. Possessions don't go missing. Clothes don't get mixed up. Carers don't talk to 80-year-olds as if they were eight.
It makes me see all the more clearly the failings in the other places he has lived in. At Ash Court, my father has regained his dignity. The home hasn't taken away his distress, because nothing can. It must be terrifying to think you're in a submarine, buried beneath the sea, or to wonder what day it is, and what year. Often he'll say "I'm afraid", but when I ask him what he's afraid of, he doesn't know. I've come to the conclusion that what he is fearful of is his own dementia, his own unreliable self.
Among the many fallacies is that dementia is so harrowing that it makes life not worth living. A psychotherapist I spoke to recently compared it to terminal cancer. This appalled me. How can we call an illness that can linger for 10, sometimes 20 years, terminal? We must find a way not to treat sufferers as the "soon to be dead" in an age when the dementia population is growing – and living – at an exponential rate.
My father is unable to do much without assistance these days, yet I couldn't say his life is not worth living – only he can say, but the terms in which he communicates can't always be understood. It is rare to hear him wishing for his own death now.
Sometimes, he cracks jokes with Bobby and Christine all morning. After a good meal, he glows with contentment. He smacks his lips and tells me he's happy, and asks me if I am too. An appetite for life, it seems, is still there.
In Part 2 Tomorrow: The family tragedy giving us vital clues in the battle against alzheimer's
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