Listen to this article
This story is part of the Financial Times Seasonal Appeal for Alzheimer’s Research UK, which is raising funds for pioneering research to develop new treatments for dementia. You can support the appeal here
“Can you hold my stick for me?” We are walking down a country lane near our home as we do each day, weather permitting, and my 87-year-old father hands me his cane. “I am going to fly,” Pete says in a matter-of-fact way.
He spreads his arms like wings, starts flapping and lurches into almost a jog. I am scared he will fall but I cannot move. For a moment I truly believe he will join the crows circling the treetops above us. After some paces he stops and smiles broadly as if he had, and we continue walking.
Once back home he sees a plane parked outside and suggests we take a flight. We get into the family’s old Nissan Micra and I drive back down the lane, scattering the crows.
By this time, Pete had been sinking into dementia for a few years. Quite when it began is hard to pinpoint. Perhaps the first signs were mood swings about eight years earlier, expressing themselves occasionally in confused but still mild outbursts of aggression and frustration.
The last family holiday away from home had been five years ago and since then the moss was reclaiming the beloved but now untouched caravan. Still, the true depth of Pete’s decline had really become apparent only two years earlier when Penney, his wife and my mother, suffered a series of strokes, probably exacerbated by the stress of looking after him mostly on her own.
Penney had managed for a long time to cover up for Pete as he entered the ranks of an estimated 850,000 people in the UK living with dementia, a number that the Alzheimer’s Society says may climb to 1m by 2025 as our population ages. There is no cure, as yet. Alzheimer’s disease, the most common cause of dementia, is variously described as having three to seven stages. Whatever. The last one is the shortest and ends in death. Some call the disease the longest goodbye as the average individual may live eight to 10 years after diagnosis.
My sister and I employed what seemed like an army of agency carers to look after both our parents in their own home. But it just wasn’t working. Health and safety regulations, which mean for example that it requires two carers to use the hoist to lift Penney from bed to wheelchair and then bathroom, contributed to a logistical nightmare, especially as Pete kept wandering off. Penney agreed to move into a care home — by chance there was one (and little else) in our village of ageing elders — and a succession of agency carers took turns living with Pete. All were from Africa. A few were brilliant, especially a young Somali woman and a Zimbabwean man in his twenties. Some were incompetent and a couple even resentful.
None stayed the course, however, for one reason or another, and after all these unsettling changes I decided to return from abroad and move into Camden, the family home in Warwickshire, with Pete. Although he rarely recognised me as his son I am convinced he saw me as someone comfortingly familiar. It turned out to be the last year of his life, and I kept a diary of our time together as we both entered unfamiliar emotional and mental territory.
While his mind was failing, Pete remained surprisingly strong in body. Indeed, he could outwalk some of the carers down those country lanes, and sometimes would persist until he reached the point of exhaustion. More than once he was recovered by friendly police and neighbours. Being on the move for him was a kind of escape or perhaps a therapy. While I was not there, one minder tried to lock the front doors to keep him in. Pete, who sometimes could not find his own bedroom, did find his tools and took the lock off. Quite right, I thought.
Has someone close to you been affected by Alzheimer’s?
Tell us about your experience with the disease here.
Between such episodes when he thought he was flying with the birds, back in the army or waiting for a train in the living room, Pete, a former doctor, also had moments of great lucidity. Sometimes they were calming, but other times devastating.
“Am I going dotty or are you?” he asks me in the Admiral Nelson over a beer. Dodging the question, I mention his time as an army doctor with the Gurkhas in the 1950s and his vivid memories of those days.
“I don’t know. It seems as if I just regained my personality. I am pretty sure of one thing.”
“Really, what?” I ask, clutching at straws.
“I pinched someone’s coat . . . Are you writing all this down? The day I went bonkers? What do I remember? Not a lot. All a blur. Blame it on the war perhaps. I think I went to war. I just don’t know what I am doing. I seem to have a nervous breakdown the wrong way round. I feel sort of free and comfortable and unworried. It is certainly good beer. But will I be anxious later? Something has done me good.”
Once we were admiring the roses from the sun lounge on a glorious English summer’s day after mowing the lawn together. “I am feeling so euphoric now,” said Pete, breaking the silence. “I got the car back. I got me back and I got a few thousand in the bank, maybe more.” He did not recognise the house or garden as his, but still he felt contented. And, amazingly, his almost constant humming, like a nervous twitch for many months, had suddenly stopped.
Reaching and maintaining a state of contentment is the theme that dominates Contented Dementia by Oliver James, a clinical psychologist and bestselling author. The book came recommended by a GP friend and I devoured it, seeking a way to cope with my father’s increasingly erratic and severely testing behaviour and obsessions. Its thesis is that people with Alzheimer’s can still live a life of quality contentment before the disease reaches its final stages. The approach rests on what James calls “the three golden rules” for carers like me: Don’t ask direct questions; listen to the expert — the person with dementia — and learn from them; don’t contradict.
At moments of crisis and sometimes desperation, I would call the helpline of the Alzheimer’s Society, which I later learned had repudiated James’s “golden rules” in a highly public spat. While I came to disagree with James and in particular his precept of not asking questions of “clients”, I was also exasperated by what I saw as the sometimes overly ethical approach of the society which, for example, told me I could not lie to Pete. But I did. Seeking to calm my father with his changing obsessions, I faked a letter from the War Office discharging him from active service and another from the bank about his investments. It worked.
James’s “don’t ask questions” principle is based on the idea that questions lead to insecurity. Ask someone with Alzheimer’s if they would like a cup of tea for example, and they will fret, wondering when they last had one, whether there is milk etc. Better to say instead: “Time for a cup of tea.”
Perhaps the most useful piece of advice I gleaned from the society is that everyone with dementia is different. And, one might add, they can be different from day to day. Pete was not troubled by being asked if he would like tea or coffee. I think he appreciated the choice. And he did not appreciate being talked down to.
One day, chatting again in the sun lounge after a game of chess (in which he was increasingly inventing his own rules), I mentioned the news of Ukraine and how Russia had annexed Crimea. I wondered aloud whether Putin might try to seize the whole country. “Russia would never do that,” Pete replied instantly, and sounding very much like a BBC pundit went on to explain in some detail why, even if he did not know who Putin was. I was stunned.
Unfortunately, as summer turned to autumn and the approach of winter, those moments of contentment and sometimes happy lucidity dwindled. “Sundowners”, those well documented moments of confusion that thrive at dusk, became more threatening. Pete’s bouts of melancholy and confused desperation grew more frequent. He seemed to be lurching downhill in bumpy stages, with intervals or plateaux that became ever shorter. And he knew it, however hard I tried to persuade him otherwise.
“I think there’s been a gap in my life, between what I was doing and what I should be doing, a blank space. I seem to have lost a lot of my memory,” he says one evening over dinner, virtually in tears.
“I really must keep dark black bits of information. I need a long walk. I cannot stand this nothingness . . . Death is the only way out but I won’t take it.”
The absence of Penney tormented him. He had stopped looking for his wife of more than 50 years in every room, but would constantly ask me where she was. I gently explained she was in the village nursing home. I soon learned not to say that we had been to visit her just that morning.
“In a nursing home? She’s never been in a nursing home,” said Pete. “Why?”
We would walk to the home regularly. Sometimes he refused to go in, sensing it was a trap. But when he did and he saw her in bed or the wheelchair, he would instantly recognise and embrace her. But, cruelly for her, he would suddenly get up again and leave, not understanding. On occasion he would insist he did not have a wife, but he would always recognise her, to the end.
In mid-October I write in my diary of a “watershed week”. Pete’s sleeping patterns were increasingly erratic. Night after night he would walk into my room and switch the light on. For several nights he barely slept at all, but wandered around the house.
“The ladies can practise in their miniature cars,” he pronounced one midnight. Then returning in pyjamas, holding his trousers and shoes, he said his father was coming to fetch him. During the day he became more negative and even belligerent. He could not be persuaded to take a shower. And then worse when he could not find the toilet. “He is your father,” I had to remind myself, my own desperation and exhaustion mounting. I knew I could not cope much longer.
My diary entry at the end of that week summed up my internal debate: “How to distinguish what is best for Pete. And for us, and what is sustainable in terms of stress, time, a residue of love, and the finances. Am I fooling myself in thinking that Pete might actually be happier in a care home with other people, more activities, more stimulus? He rarely recognises Camden as his own home, but somehow it IS still home, and the villagers keep an eye on him. And occasionally he has a little laugh and is happy, but this is getting less frequent.”
The answer presented itself. Hallmark, a US company, was close to finishing the construction of Anya Court, a new care home, in the nearby town. Looking after the elderly is a booming industry. My sister and I went to visit and were favourably impressed. We also knew we had to find a solution.
A representative came to see Pete to check his suitability, rather like admission into an elite club. “How has dementia affected your life?” the interviewer began. I shuddered, wondering what Dr James would think of that question.
In late November Pete and I walked out of Camden for the last time, and Anya Court opened its electric sliding doors. I told him we were going on a journey. The Alzheimer’s Society helpline agreed on that wording.
“Pete clutches at clarity,” my diary reminds me. “He understands what is happening. He is sad but not distressed, courageous but resigned (almost).”
Diary: “‘I don’t want a nursing home,’ Pete says. I lie and say this is not a nursing home but that there are people who will help take care of him. ‘I will walk down the road, find a canal and kill myself.’ Later he asks me for ‘reality’. I try to explain as honestly as possible. Like a parent leaving an infant on his first day of school, I say goodbye. He gets into his new bed, where he feels refuge. I return home with the strongest wine I can find, crying on the doorstep that was his and ours for this summer gone.”
Over the next two days I take him out in the car and we go to our old favourite sailing lake. Pete seems to be doing well in the new home, and appreciates the views of the lake as dim memories return. But on day four his mood swings again. “When you slow down, death’s knocking at the door. Best to know it rather than it creep up on you.” And how is the care home? “Second best to death.”
Ten days after his arrival, I arrange a wheelchair taxi to bring my mother from her nursing home to see Pete. My sister and I are hoping Penney will decide to move in too.
“Where have you been for so long?” Pete says. They embrace. The staff are in tears. Pete pushes her around Anya Court in the wheelchair. “Life expands and contracts. It’s difficult to keep up,” he says.
Well supported by his new carers, Pete was made to feel busy with office “paperwork” and kept the staff on their toes by setting off fire alarms as he tried all the exits. Penney moved in before Christmas.
Relentlessly the disease weakened Pete. The following summer he became dehydrated and was hospitalised. He never really recovered and did not walk again after he returned to the care home. He died that August, nine months after first entering the home. Just a few days before his death he was with my mother in the lift, both in wheelchairs, blowing her a kiss.
Today, as you enter Anya Court, there is a brass plaque listing Pete as one of its founding residents.
The World Alzheimer Report 2015, led by King’s College London, estimates that someone in the world develops dementia every 3.2 seconds.
“If global dementia care were a country, it would be the 18th largest economy in the world,” the report tells us. Dementia overtook heart disease as the leading cause of death in the UK in 2015. It may well be underestimated. “Old age” is written on Pete’s death certificate. Perhaps the doctor thought it more dignified. Pete, though, would have taken dementia.
Guy Dinmore is a former FT foreign correspondent, whose postings included Rome, Bangkok, Tehran and Washington
• Your gift will be doubled
If you donate to Alzheimer’s Research UK through the FT’s Seasonal Appeal, Goldman Sachs has generously agreed to match it up to a total of £300,000. Click here to donate now
Letter in response to this article:
Get alerts on FT Seasonal Appeal when a new story is published