My brother, Rob, is sporting a pair of jaunty rubber gloves and one of his arms is plunged elbow-deep into our parents’ blocked toilet. The last time I made him do this, his fist emerged, triumphant, clutching a pair of sodden Y-fronts. This time, the cause of the blockage is purely organic, and I wish him luck, from a foot away, where I am on my knees bathing the culprit, my oblivious father.
I am about to wash his hair, an experience he dislikes and considers unnecessary and cruel. We have developed a well-worn routine whereby I cajole, he protests, I take a firmer line, he resists, I tease him (just a little, not too much — a fine line, and one I have often clumsily crossed), and he grumpily capitulates. I pour water briskly over his head, urging him to keep his eyes shut.
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His toenails are next; Mum’s are done. I have acquired masterly geriatric toenail cutting skills in recent months, as I regularly boast to my brother, on one occasion recently on my way home from their flat on a coach in lashing winter rain while he was on a sunset dolphin cruise in the Maldives. The contrast between the selfies we exchanged spoke volumes and is one reason his arm is halfway down the U-bend of the toilet at this very moment.
My nephew, six, darts in and out of the bathroom in a state of glee, this combination of events — plumbing crisis plus elderly bath time — not having arisen before in his short life. “Isn’t this stuff he will never unsee?” Rob mutters to me. “Circle of life — all good,” I reply, hoping I’m right.
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Meanwhile, my mother — first in the bath, as she can still be relied on to dry herself while my father has his turn — clutches her towel anxiously to her chest, hovering in the background. I direct her from my crouched position on the bathroom floor, reminding her where her clothes are, encouraging her to put them on. She complies, very much the “good” child in this ultimate of role reversals, allowing me to turn my attention back to the “naughty” child in the bathtub. Getting him out is a dice with death, and I am lucky today that my brother is here to help. A system has been devised in which Dad balletically swivels to bend his left leg over the edge of the bath, but I know we are on borrowed time with this manoeuvre, and that the showers he inexplicably despises need to be adapted, however much he protests.
This is the latest in many such scenes, courtesy of the double diagnosis of Alzheimer’s visited on our parents in recent years. Apart from having lived until their early eighties and being enthusiastic consumers of red wine, they have no other risk factors. They have succumbed anyway to the great scourge of our time, the number one cause of death in our country, and the curse of busy middle-aged offspring everywhere. My mother, a linguist who worked for the EU in Brussels as a translator for 30 years, was the first to be diagnosed, 4 years ago. She remains an approximation of herself in the moment, but has a memory span of perhaps five seconds — a massive disability which is, of course, only going to get worse. My father was next, some two years later. Another linguist, he is a retired professor of Russian, a former skier and golfer whose greatest pleasure is now counting red cars in the street from the window of their flat. (Why red ones, nobody knows. We are just happy he has a hobby.) Unlike Mum, he is globally impaired and not remotely himself in the moment — changed irrevocably, unable to hold a conversation, at times unpredictable in his behaviour, incontinent.
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We, his children, are still reeling at the state of his decline. His fast-track race through the early stages of dementia happened in a blur. His driving licence was taken away a few months following his diagnosis, after my repeated entreaties to his doctors. Impatient at the lack of progress, at the weakly worded letters “suggesting” that he should “consider” no longer driving, I eventually dobbed him in to the DVLA myself. He was outraged, in the way that so many people are, that anyone should dare to take away what he perceived as his right to drive.
Our relationship, always close, was soured for months. There was a time when I thought it wouldn’t recover. Every time I saw him he would ask me about his car, where it was, why I had taken it from him. He would complain bitterly to others about what amounted, in his eyes, to the theft of both the vehicle and his autonomy. I had to harden my heart, think of the potential accidents that had been avoided, and remain calm and firm with him.
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This was an exhausting period emotionally for me, and presumably for him too. We had the same spirited discussion, pointless, repetitive and boring, every time we met. I had to constantly remind myself that his rage was the disease talking, and I had to accept that our relationship was perhaps soured for ever. That it might not recover. That our close father-daughter bond was maybe a thing of the past. So be it, was the stage of acceptance I had to reach. So be it. This was dementia. It was never going to be pretty. And I was damned if he was getting back in that car.
Now, however, his eyes light up whenever I visit. “Sweetheart!” he says. “How are you?” (As opposed to, “Ah, there you are. Now, what the hell have you done with my car?”) He turns back to his newspaper and continues to read it aloud. In the earlier stages, he would do this with verve, at considerable volume, and the sound would dominate the room and get on all our nerves, Mum’s especially. He is quieter now, and I find the sound quite soothing, like having Radio 4 on in the background. Sometimes I swap his newspaper for one of his academic Russian books, one or two of which he wrote himself, and he reads out long paragraphs, still fluent, Radio 4 replaced by its Muscovite equivalent.
Today, bath time is over, the plumbing crisis has been addressed and we are back at the dining-room table where my parents spend much of the day. My nephew builds something intricate out of Lego. My brother and I drink our coffee with relief, the most arduous of today’s duties behind us. Our parents have a carer now, or rather several who rotate — three weeks on, three weeks off — one at a time, living in with them, the cost eye-watering but still less than a nursing home for two. (They don’t, however, like to be bathed by them — a major fly in the ointment, given that I live an hour away.) A decent nursing home — and who wants anything else for those they love? — will cost an astonishing £13,000 per month for the rest of their lives. And yes, you do find yourself trying to prognosticate for them when faced with sums of this magnitude — or at least I do, perhaps in part because, when not trying my hand at chiropody, I work as a hospice doctor. For light relief, as I joke to my colleagues.
My job, which is hugely rewarding and which I love, has to be juggled with the constant commutes to my parents, for whom I am on call, via the carers, for every crisis, great or small.
The time Mum dragged Dad onto the dark and rainy streets at 10pm, having decided he was a visitor who needed help finding his way home (two hours spent wandering lost and drenched, several police officers involved in their rescue, safeguarding proceedings triggered, carer horror-struck, agency up in arms). The many times Mum has called me, bewildered and anxious, to ask about the stranger — the latest carer — in their spare room. Dad’s recent out-of-the-blue full-blown seizure, which lasted 15 minutes and which I was sure would carry him off. It didn’t — my tears and broken little speech to him about what an amazing father he’d been were misplaced, and half an hour later he was tucking into a hearty lunch. He is now on anti-seizure medication, with a new diagnosis, “Epilepsy, likely dementia-related,” on his records.
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Mainly, though, what really takes up my time is being my parents’ administrative life assistant or, as I call it, admin slave. There is nothing that they can now do for themselves and yet life goes on, bills need to be paid, banking has to continue, subscriptions need renewing, and neither of them has a single clue about any of it. Modern life is, in this scenario, designed to almost kill you, the lowly and — crucially — password-devoid admin slave, with the associated stress. I had power of attorney, or thought I did — only to discover that my parents had each made the other their main attorney, lacking the imagination to realise that they might both go down with the dreaded d-word. My brother and I were merely replacement attorneys and this took many, many months to sort out with the Office of the Public Guardian, with yet more patience required — big dollops of it — as I sat on the phone trying to get through to them, sometimes for an hour or longer, trying to make them understand the situation and act on it.
All of this has certainly aged me by many years, making the sad fact that I have no time for the “tweakments” I read about in surgery waiting room magazines even sadder. On the plus side, I must be saving hundreds (thousands?) of pounds a year, handy when you’ve had to drop your hours at work due to elderly support duties. Haggard, but not in the red. The (literally) rough with the smooth.
To add to the paperwork fun, my parents owned a beautiful if modest home in rural France. Of course they did! As a doctor, working for a charity, I earn perhaps a third of what my mother’s translator salary was, many years ago in Brussels; no second home in France for me. However, I did get to dispose of one, and all its contents, in a different language, within an unfamiliar system, largely by remote control from a different country. Go, me! Or rather, us, because my brother helped, and we managed a four-day road trip to finish the job two summers ago.
It wasn’t all bad. We had a few laughs. We did some reminiscing. Mainly, however, we worked like beasts of burden, moving furniture, taking possessions to the charity depot, going back and forth to the bank and solicitor’s office, giving away garden tools and bed linen to every passing tradesman, begging the boiler repair man to take the contents of the freezer (he had four children so was happy to oblige). The house was virtually given away — of course it was. It was my parents who had begun the job, including setting the sale price, before we had realised how cognitively impaired they had become. A clue should have been their mismanagement of the Covid restriction paperwork at the time, resulting in being turned away twice at the French border for not having bothered with the travel pass, having declared it “ridiculous” and not applicable to them. The border police did not share their view.
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One of the conversations today between my brother and me, now huddled in the kitchen, relates to our parents’ wishes after they die. (He loves hanging out with his bossy, medical older sister. The laughs just keep on coming.) Non-religious, pragmatic types, they have left their bodies to science — specifically, to Bristol Medical School. They have also paid out thousands and thousands to a disreputable firm that cold-called them, saw its opportunity and cynically sold them funeral plans involving mahogany caskets and death décor fripperies of the sort that held no interest for them while they were still themselves.
They had, of course, just forgotten about plan A. My rage when I discovered all this was considerable, especially when said firm sent a man in a suit to their home, to a cordial welcome (my parents are charming). I have no doubt that he was plied with tea and biscuits as he tried to sell them an “estate planning package”. At this point, I called the police. The firm stopped phoning and subsequently, to my great glee, went bust. As my parents, both from Glasgow, used to say: hell mend them. (This glee was obviously tempered by fury at the waste of £20,000. Another company has since slithered into the void and alleges it has taken on their plans. Time will tell.)
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No decision made, because we can defer this particular one and are only human, I wave my brother and nephew off. I kiss my parents, ensconced in their chairs at the table, reading their newspapers, aloud in Dad’s case, quietly in Mum’s case. All seems well. Their carer plans lunch next, then a little walk. She gives me a list of items to order online: incontinence pads; a waterproof mattress protector; non-alcoholic red wine by the case.
This last item is crucial — we cannot let my parents run out. They’re so accustomed to living life glass in hand that, if the wine runs dry, they will get agitated and plunge into the night to source more from the corner shop, risking getting lost (again). I am still triumphant that they have made the switch from real to fake wine, a scenario that we once thought completely implausible. Because my parents are intelligent and perfectly able to read a label, they are aware that the wine they now drink is alcohol-free — they simply don’t mind. This, in itself, is amazing. At one point, pre-switch, due to their loss of any sense of time, they were drinking from breakfast onwards. Dad would crack open a beer with his muesli. Mum would start maybe at 10am. They would cheerfully sip their way through the day thereafter. They became fond of wine boxes at one stage: particularly problematic (though not from their perspective) due to their inability to gauge how much they’d had— not that they did much gauging anyway.
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All of this I turned a bit of a blind eye to, I confess, medical degree notwithstanding, because I had so much else to deal with (including my own life, which does need attention now and again). Once they acquired live-in carers, concerns were raised and we managed the transition together. My worries over withdrawal symptoms proved unfounded, thankfully, the carers were mollified, and my parents turned their backs uncomplainingly on decades of commitment to the pleasures of alcohol. Another chapter closed.
I HEAD HOME, RELIEVED THAT TODAY’S VISIT WAS SUCCESSFUL, that Mum and Dad are both clean, dressed, dry (temporarily in Dad’s case), calm. I race around the supermarket, a long-postponed food shop in preparation for the return of my student children at the weekend. I walk the dog. I think about work, a difficult conversation I need to have tomorrow with the family of one of our patients.
Although working in a hospice is one of my life’s great joys, the discussions that I have there are getting more complex as the years go by. People are living longer, we all know that; they are soldiering on, often stoically, sometimes less so, with more complex medical conditions. Although we would love to keep everyone (or almost everyone) indefinitely, we have limited beds, and some of our patients will need to go back home or to a nursing home. Not everyone comes to a hospice to die.
Sometimes, these discussions can provoke outrage. I understand that. If I were fully clubbed sideways by carer strain, I would feel the same; and I may well be in the future. I am exhausted already by my current duties — and these are minimal compared with the loads of others, and alleviated by my parents’ hefty pensions. Live-in carer — tick. Near-daily online orders for elderly life accessories — tick. Future joint nursing home admission scenario — unpalatable, but yes, tick.
I meet carers at work who have a very different list of worries, revolving around how to meet the monthly bills, how to manage the physical load of the caring role when they are old and perhaps infirm themselves. How to afford nursing home care if no state support is forthcoming. When to sell the beloved family home.
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Back in my kitchen, I am unpacking the shopping and check my phone. Three messages from the carer: “Mum is ramping up a bit. Thinks Dad is a visitor again. Wants him to go home”; “She’s putting her shoes on. I will try to distract her. Dad just wants to go to bed”; “I’m putting Only Fools and Horses on. That sometimes helps.” I send a quick message of sympathy back and hope fervently that the next message will be more reassuring.
I talk over the day’s events with my partner, but halfway through his phone rings. It’s his father, with a health bulletin about his mother, who is medically quite frail, though they are — just about — still managing at home. Both have — what else? — dementia. Of course they do. Instead of bonding over that fact when we met through mutual friends, we should have run a mile from each other — we each doubled our collection of elderly Alzheimer’s-afflicted parents the minute we got together. But when you know, you know, and we have no regrets.
Four such charges between us is quite the challenge, however. We all live in different parts of the UK. I heartily dislike driving and there simply isn’t enough of our time to distribute it fairly between them all, not if we want to maintain our jobs — which we very much do — as well as nurture our relationship, tend to our friendships, plant out the garden, get on our bikes occasionally.
I have a house to maintain. I have young adult children to support. We lost their father six years ago and the wounds aren’t fully healed — won’t ever fully heal. They need my time too. I am trying to navigate this situation, knowing that I have limited time with my parents and that I will soon lose them too. That they need me, and that the pain of their loss lies ahead of me. It will be added to the loss of my husband, burn another hole in my heart. Another two holes. But I don’t want to sacrifice the other parts of my life that matter to me. My parents certainly wouldn’t want me to. Mum said to me the other day, in a moment of insight, “Are we becoming a huge pain in the arse for you?” “Massive,” I replied. “You have no idea.” We laughed, and I held her hand and remembered all over again how much I love my parents, pain in the arse or not.
In this scenario, however, repeated all over the country right now, love is not enough. How much of my own life am I prepared to give up is the question I have asked myself often over the past two years. And the answer has been some, at times a great deal, but not all. I will not give up my job. I will not abandon all my other relationships, including the central one with my partner. I will not let my home slide into a state of neglect. I will not give up the walking and cycling that keep me sane.
THREE DAYS LATER, I AM BACK AT MY PARENTS’ FLAT. Dad has a GP appointment. The surgery is not far away and we are soon installed in its waiting room, which always brings up the usual mix of (faint) nostalgia and (great) relief I experience whenever I have dealings with primary care — I was a GP myself for 25 years and do not regret my switch to palliative care.
Dad’s “Do not resuscitate” form is revisited — not the DNR aspect, thankfully, common sense being the hallmark of a good GP — but the wider care planning decisions. Would we want hospitalisation for him? Would we want antibiotics in the event of pneumonia, of sepsis? Dad can take no meaningful part in these debates. His doctor and I end up with a compromise — any admission to be avoided if at all possible, unless absolutely necessary (a fractured hip, say). Antibiotics a possibility, depending on what stage of dementia he has reached. To be mulled over at the time by healthcare professionals and family. Familiar surroundings and the presence of the people he loves, dignity and calm to be prioritised above all else — not the hallmarks of the average A&E experience.
Dad smiles pleasantly throughout, enjoying the change of scene from home. He reads aloud every poster, pamphlet and flyer, small print included: no skipping over the terms and conditions for him. Can’t keep a linguist down. On our way out, he comments loudly on the size of the patient in front of us. Can’t keep a fattist down either. The loss of social inhibitions common in dementia has caused me several moments of intense embarrassment like this one. The time a group of Japanese students came into the café we were sitting in and Dad gasped, turned to me and pulled his eyes out into slits. The words “yellow peril” weren’t actually voiced, but I could see them forming in his mind. For a man with an arthritic knee, he was out of there at lightning speed, propelled by the strength of his daughter’s social discomfort.
Back in their flat, and perhaps because of all the talk of advanced planning earlier that morning, I raise the delicate matter of the future with my parents. Wouldn’t they like to be closer to me? Near my house there is a luxury care home, more like a hotel in many ways. Would they consider such a move, with the opportunity for us to spend more time together? Dad nods benignly. Why not, is his general reaction. You know me, I’m a laid-back kind of guy, I almost expect him to add. I can barely restrain a snort of laughter, such is the contrast to his old persona — combative, spirited, independent, absolutely not laid-back in any aspect of his character or life.
He used to describe the prospect of a nursing home as the “last great battle”, one he fully intended to win. Hiding my surprise, I turn to Mum. Always frugal, in keeping with her postwar upbringing, she immediately asks about the cost.
“Don’t these places cost a small fortune?”
“A big one,” I correct her. But I show her the pictures, the sample menus and, on the map, how close we would be — for the first time since I left home, we would be living in the same town, around the corner from each other. She remains dubious. I leave it there for today. The last great battle has begun, but it is far from over.
