For years I was my parents’ reluctant carer. Then I was told I was making things worse

Like an organised criminal, my mother no longer communicates by phone. Visiting her can be convoluted, but it beats the days when I thought I might never get away. That’s what I tell myself, anyway. Her, I tell very little, until I arrive. Plans and possibilities weigh heavily on Mum’s mind, raising questions whose answers she cannot remember, stranding her in her own inquiries. Now I plot my appearances carefully with her live-in care worker so that everything deliberate can seem like a nice surprise.

When my father died in 2021 I thought my mother might thrive on her own. Instead, it was as though her concern for – and consternation with – him were the last thing on her mind’s to-do list before it tendered its own resignation. With a mild but manifest case of vascular dementia, Mum will hopefully turn 96 this year, though she now merits round-the-clock surveillance. A team of care workers ensure she is safe at home, an arrangement that releases me, my sister and brother into the ambivalent privilege of not being around.

It wasn’t always so. Five years ago, I wrote an anonymous piece for this paper about moving back in with my parents when their health and my luck appeared to be running out. Work had deserted me and I had left my marriage. I needed that old teenage bedroom as much as my folks needed someone around. People thought I was being kind, but I was out of alternatives. As we stepped and stumbled together through the crises and comedies of infirmity, incontinence and cohabitation that followed, I was unsure who I was any more. Their parent, in effect – or a child in perpetuity? Nothing lasted, that was certain. Failure, in one form or another, appeared to be the theme.

My fortunes changed when that piece became the basis for a book, The Reluctant Carer. As I wrote it, my father’s health deteriorated to the point where he needed professional help. More or less immobile, he required several care visits each day and I could spend more time away. With distance came context and a strange sense of perspective, perilously close to nostalgia. Caring for my parents had seemed so challenging sometimes that when I considered there might have been aspects that were easier than outsourcing the job, I derailed that train of thought. Because you can’t miss it, can you? Not that, surely? No, not exactly – but the long, last act of all this is not quite what I had in mind.

My father’s death was more forestalled than foretold. He was 90, unwell, but also apparently indestructible. We had bid one another what seemed like significant goodbyes on a number of hospital wards in the years before it happened, but when it came to pass there was no one else there. Tempting fate, I had written another piece at the end of 2020 and remarked that Covid seemed to have passed us by. Five days after it was published, Dad, who struggled to breathe anyway, sounded as if his lungs were flooded. He was against the idea of going back to hospital but we were persuaded by a doctor – who, dressed in full PPE, offset the traditional decor of my parents’ living room like a visitor from science fiction – that it was worth a try.

Perhaps it was. Perhaps it wasn’t. As truth is to war, so certainty is the first casualty of late life care. They got him through Covid but his phone calls, sometimes stoic, often despondent, from hospital, where he remained alone for weeks with all visits forbidden, are still with me. Weakened, he was transferred to a care home. When visits were eventually permitted he had succumbed to a cycle of urinary infections that left him prey to hallucinations. “I don’t understand,” he said to me one afternoon, “why they won’t give me a gun?” He was back at sea. Then back in the army. Then, one evening, he was gone.

What I had not expected was that his death would take me from reluctance to redundancy. Not that I wasn’t needed, so much as I couldn’t cope. It was a few weeks after his funeral that my mother started to believe that Dad was still alive and the idea I had that she might emerge in liberated form when he was gone was clearly exposed as just a fantasy. One of many, as it turned out.

I had assumed she would be the easier of them to look after and that one would be easier than two. Instead, what I got was a troubling insight into the very real boundaries of my patience with the almost limitless gymnastics, repetitions and creations of the dementia-affected mind. Then there is Mum’s mobility. You would always find Dad where you had left him, but Mum can go rogue. She would want to check up on people who weren’t there and even talked about driving. Like that moment in medical thrillers when the scientists find the virus is airborne, we realised we’d need more extensive measures. More even than just hiding the car keys.

Redundancy usually equates with payment, but with caring the cavalry come at a ferocious cost, assuming there is money there at all. In effect we now run a boutique care home with a single client and a small pool of staff. It is about the same cost as residential care. You have to come to terms with these things as far as possible, but it is a complication upon a pre-existing emotional faultline, like burning £20 notes while deleting favourite pictures from your phone.

Dad’s old bedroom became home to live-in care workers who would stay for months and keep an ear out for Mum overnight. They also needed time off daily. Occasionally I would cover their breaks, but something had shifted since my full-time phase. I had lost skills and authority. My mother had become obsessed with time and had taken to carrying an alarm clock with her, “so I can be sure of things”. This despite the clocks in every room. I would follow her around, barking orders and warnings: we must have looked like an old, white, Public Enemy tribute act. We were not so much fighting the power as struggling for meaning. “Is it time for bed?” she would ask at 4pm on a winter’s afternoon. Arguments for staying awake were hard to come by. I felt less like the help than a dysfunctional accomplice.

‘I weaned myself off the caring role as if it was a drug, which in some respects it had become.’ Photograph: Alice Zoo/The Guardian

Care workers bring a lot to the picture, but what is unseen on the invoice is their wisdom. It is probably your first time; it might be their 40th. “All I know is your mother as she is now,” one told me. “You have 50 years of memories in the way.” Obvious, when you think about it, but not to me until that day. Mum could be fine for long periods, then suddenly otherwise. Letting go of people is hard, but especially difficult when they appear to be coming back yet simultaneously vanishing, flickering as they fade.

I weaned myself off the caring role as if it was a drug, which in some respects it had become. I have been self-employed and in and out of work for decades. Having one clear thing to do was intoxicating, even if I didn’t want to do it at first. Much that becomes compulsive feels uneasy in the beginning, and we long for identity over and above the things we do in its name.

Sometimes a care worker would need some extended time off and I would come, stay overnight and do a longer shift. The de-skilling was radical and I would do anything to postpone things that had once seemed ordinary until the professionals returned. The provocation could come from anywhere. “Go in there and see if you can find me a thinner top,” Mum asked me once, indicating her bedroom. The heating was at maximum, as ever, and it would make more sense to open a window or turn the thermostat down, but these ideas I understood would play like claims of a curved planet to a medieval court. The heating stayed on, the jumper came off, then we tried a cardigan, then the jumper again, while Mum, who is physically in good shape for her age but has osteoporosis, did a kind of rickety pivot in and out of each garment like some breadstick ballerina, sure to go to pieces if she hit the floor. “Let’s just keep doing one dangerous thing after another until something goes wrong,” I wailed, half assuming she would not hear me. “Oh,” she looked me in the eye, her own suddenly aflame with a near century of wit and acumen, “you’ve been here before then.”

Once, after a day of normal interactions and intensive napping, I came back from an evening out to find Mum transformed, banging on the window with her walking stick, eyes sharp with alarm. “Thank God,” she said when I opened the door. “I don’t know who these people are. I need you to call the police.” The people were one care worker who had been with her for weeks, but everything was strange and terrifying to Mum now. “Tell Mum and Dad!” Mum said, then caught herself. “I am Mum and Dad … ” When I told her how things were, she couldn’t listen. “I can’t believe it from you,” she said, so full of certainty that her voice had a sudden force. She seemed reborn by distress. This went on for hours.

Next morning, the care worker made an astute but painful observation: I was the problem. This level of confusion would happen only when or after I came home, as if my spending the night in the house I had grown up in opened up too many pathways into the past, at the expense of Mum’s frail connection to the here and now. I started staying elsewhere, visiting for just a couple of hours when I was in town. Mum improved accordingly. This was more than redundancy: I was fired. Back home, I noticed an email from my broadband provider: “Your parental control settings have changed.” I was going to need something else to do.

The name Lady Gaga had always struck my mother as a portent. “If I am the gaga lady, shoot me,” she would sigh. But this, mercifully, is not America and, as my father had lamented, firearms are in short supply. Had there been a gun, who knows where it might have ended up? My mind was unsettled long before my parents’ physical decline. I had been in psychiatric hospital for months in my 20s, a weekend in my 40s, on and off medication and otherwise up and down most of my life. What I had never had, though, was a convincing explanation for what troubled me. When I was back with my parents, I became increasingly interested in what therapists call the affective dynamics of childhood experience. Struggling to help my mother into her bra one morning, while trying not to look too closely at what I was doing, I decided to go back to college and read some Freud. “Sunny today,” I said to my mum as she wriggled into the underwear I was holding as I averted my gaze towards the window. This was before we had got her hearing aids in. “I don’t,” she said firmly, “want any salmon in here.”

You needn’t move in with your ailing parents then study psychoanalysis to explore the complications of caring, but it helps. Care’s physical toll is well researched if underreported. Immune cell counts in caregivers are suppressed, so they are more vulnerable to disease and infection, and the wounds of Alzheimer’s caregivers take over a week longer to heal than those of controls. Less documented is the mental cost, but this is also understood. In Freud’s 1893 case study of Elizabeth R, he notes that her parents and her sister had been seriously ill and that “in all these troubles and in all the sick-nursing involved, the largest share had fallen to our patient … The neglect of one’s person, the effect of constant worry … the 101 tasks of sick-nursing,” these, Freud noted, were contributory factors to Elizabeth’s condition: “After a short interval of exhaustion … the hysteria breaks out.” While there are aspects of Freud that submit to revision, 130 years later this much remains unchanged.

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Sanity aside, my parents’ safety and privacy were two of the reasons I hadn’t put my name to the book. With Dad gone and Mum supervised, maybe it was all right to own up now. Shame had also been a factor. Was it OK to share these things, I wondered at the time? Was it even OK to feel them? Since then I had heard from enough readers to understand that OK was beside the point and that, for many, guilt, ambivalence and reluctance were at the heart of the caring matter. And I was coming to understand that these feelings did not abate after people died, or when caring became something you paid other people to do. Far from it. They might even become more complicated.

Of all the responses I had to the book, the most consistent and affecting was that people, sometimes years after the person they had cared for had passed away, were still tormented by their role – and these were people who had stuck around and faced up to things. “The guilt gets me every time”; “Frustration, irritation, guilt, horror”; “Simmering rage”; “Something even Kafka could not have envisaged” are just the tip of the inbox.

When Dad was on morphine, its most remarkable side-effects were that his politics lurched leftwards and he became fixated by constipation. After one feature-length lecture on the state of his bowels, he said, “I am telling you this, so you can put it in a screenplay.” I took him at his word. This has gone on to yield some revealing responses, not least one from a broadcaster that distils down to: “This is great, but can we lose the ‘reluctant’ part?” I don’t think so, unless that character shares those opiates. There is something in the contradictions of care that we seem unwilling to face.

Mum was never a criminal, nor is she all that organised any more. Abandoning the phone was a deafness/dementia coproduction and someone else can answer it now. Pigeons have become a source of fascination to her and the occasional visit from a new great-grandchild stirs a particular joy, even if she is not quite sure who they have sprung from. We keep things as simple as possible, but felony does occupy her mind. “Someone sent me a card that said, ‘Stay Safe’,” she tells me, exasperated. “Where do they think I live? Gangsterville?” The irony here is less about the forgotten slogans of Covid than her obsessional rereading of crime stories from the tabloid that seldom leaves her side table. A paper she would once have looked down on, I suspect, but which now makes a considerable claim on her perception.

More remarkable, perhaps, is how she tends to see things from the perpetrator’s perspective. A robbery escalates into a murder. “Well,” she offers, sagely, “you have to control your temper.” A care worker rattles pans in the kitchen behind us. “Someone in there,” she nods towards the noise, “is getting ready to poison me.” It’s as if she’s living in Cluedo, and perhaps she has a point. We have been making light of living through and considering death here for years now. Somehow all that mortality, continually suppressed and resurrected, makes its way into your worldview.

Less surprising, although somewhat more inevitable, was that in my newfound freedom I was turning into my late father. In an effort not to be quite as defiantly unfit as him, I joined the local leisure centre, then slipped and cut my hand open on the side of the pool. Caring messes with your sense of self to the point where you can forget how old you are and how young you aren’t. At the chemist, I bought almost everything I could think of to clean and close the wound. After it healed, I went to put those things away and saw that my drawer of medical ephemera was perilously close to an image of my father’s epic drug stash that I had posted online years before, the inference being – “Look at the hypochondriac, hoarding old man!” When the shock of recognition subsided, I felt oddly close to him.

Much as people get poorly as soon as they go on holiday, the less time I spent at my mum’s, for a while, the more unwell I became.

I was recovering from an eye operation when a kind of revelation came. I had been ordered not to move, so visiting Mum was out of the question and perhaps because it was forbidden, the urge to be with her felt clearer and less complicated than it had for a long time. Redundancy had given me agency, but it took my own disability for me to see what I would do with that. This was care as a feeling, instead of a verb. It felt good in a way that was old and new at the same time, and I was less conflicted. Sadness followed and some guilt returned, but in appropriate doses. Temporarily dependent on others, I could see things from the other side – and perhaps the future. We were falling apart, but we would handle it.

Thanks in part to what appears to be some insanely resilient DNA, I got better, got up and went back to see my mother. Her current care worker has a penchant for greatest hits radio and so our interactions are soundtracked by epic pop standards that yield a kind of emotional commentary on our relationship as we drink tea and study the birds outside: Don’t You (Forget About Me), Sweet Child O’ Mine, Suspicious Minds and so on.

“You won’t have had time to see your mum,” Mum says. She means “to see your friends”, so I point out the muddle. “Oh,” she asks, “whose mum am I?” “Mine,” I say, “and there are others.”

“Oh no,” she says, waving me and these ideas away like an unwanted offer of dessert, her gaze back on the pigeons, smiling quite contentedly. “Not now.”

The Guardian