The Reluctant Carer: Dispatches from the Edge of Life

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Hilarious, bitter, poignant and profound . . . like an existential soap opera - only with more laughs.' - Philip Hoare, author of Leviathan Once I connected the music to the movie it began to make sense. My dad, who had left school aged 14, loved Shakespeare. And this infection became a part of me, by accident or design or osmosis and his determined dream that I should have more time in education than he. Either way, those words, centuries old, would become part of our connection. More, somehow and sometimes, than the everyday ones we used to say. There are many times when you’re warn out, stressed, fed up of fighting the corner for your Caree to be heard. That’s where we then need to look at an LPA (legal power of attorney). To impact more on those that won’t listen when YOU are the one that knows this person more than the STRANGER medic who whips in and out again. I am a creature of habit, much like my father, which is how come I was stirring a risotto when I found out he’d broken his ninety-year habit of staying alive. Some people nowadays think you can leave risotto alone, here, we do things the long way round.

Mum used to say something similar if she ever lost her marbles – which meant her mind, and which is now escaping her more and more often.

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That As You Like It speech ends, “ Sans teeth, sans eyes, sans taste, sans everything.” But what Shakespeare has missed (his parents died at 70 and 71) is the gift of coming to things sans assumptions. Knowledge can be power, for sure, but wisdom sometimes lies in letting it go. It also highlights the mess that is social care and how hard it is for both the carers and the people they are trying to help under the influence of organisations that only seem interested in making and saving money. Bosch, Hieronymus; An Angel Leading a Soul into Hell; Wellcome Library; http://www.artuk.org/artworks/an-angel-leading-a-soul-into-hell-125754 I went into the front room, sat with Mum and told her that her husband of sixty-five years had died – there was no easy way to frame it and she is deaf so it’s hard to be subtle but what she said was— Make no mistake, my parents were fortunate. Slightly too old, if anything, to get deluded by the most modern fraudsters, and defended by me – for whom the scam call might be the highlight of a dull day.

Although sad in themselves, these happenings are so incredibly off the planet you have to laugh (albeit silently). It’s the precious medicine the carer needs to retain their sanity and to keep caring. ‘Being anonymous enables this amazing author, with his quirky sense of humour, to tell it “warts and all” in its stark reality.’ Downtime becomes so scarce that sometimes, between errands, I just stand still. I am doing this in the hall, a liminal space between the possible future of the dining room (where I gaze at the internet) and the presenting past of my bedroom (where I sift through drawers of adolescent tat) when my father calls me into his lair, the living room (as hot as Saudi Arabia, but with stricter rules about what’s on television).

Precious medicine 

Though I am my mother’s natural ally, I get where the old man is coming from. As he stabs at his screen, I wonder how much he and men of a similar age and circumstance, the tail enders of 20th-century masculinity, have contributed to Bezos’s billions? Shorn of your faculties, it must be something to have the power to summon protein and so much more. Orifice politics. Busy times. I’ve had two eye surgeries and a robot in my colon (purely for health reasons) in under a month. Mother, though, is fine. I hear the voice of Psycho’s Norman Bates – or rather Norman Bates approximating his mother’s voice – each time I type ‘mother’ lately since my own parent appears to have taken on the timeless power of his. Two big differences, mind you. Mine is alive and I haven’t killed anybody. At least, not yet. Things can still happen fast, even when you move slowly… My humour, of course, is a coping mechanism. It is a skill I learned largely from (and maybe for) my mother, and it is sad sometimes to see how she is now less able now to deploy it. Given the viral load here I clean the house from top to bottom. Wash every sheet and towel and dry as much as one can in winter. Dad’s room is never empty when he’s here so there are layers of dust and dropped pills and crumbs from God knows when. Secret crevasses of crap yield to the vacuum cleaner. It feels good. No news from the hospital though. He is the same. But he can’t speak and we can’t see him so that is that. You phone the ward and someone who sounds like they are in the midst of a medical motorway says he’s stable and you thank them and hang up. My mother’s statement then was against all this posturing, and thus an act of rebellion. While I respect her as a cultural revolutionary, in all other ways and not just for me, the decline of her memory is a difficult business. It has become expensive, too. I am pleased that we have managed to care for her at home so far, but this is becoming a close-run thing. While it’s good that she wakes up and knows at once where she is, when she is, is another matter.

That’s from my book https://www.panmacmillan.com/authors/the-reluctant-carer/the-reluctant-carer/9781529029352 . But the more I reflect on Shakespeare, the clearer our scene on the bathroom floor becomes. It was as if so much of Mum’s cognitive attention had been caught up in the chaos of Dad’s care that when he died, and it all subsided, a certain amount of her mental capacity left too, as though its contract had been fulfilled. I thought Mum might be more like her old self, but instead, she had become a new version, far more vulnerable, and less defended now. The loss of her husband of sixty years had been a long time coming – but eighteen months later she is still asking where he’s gone. These bags, I think, are romantic symbols for those of us sitting comfortably or otherwise in the likely less-urgent situations of our own lives. For some of us,the idea of vanishing is less a threat than a fantasy. It can appear more tempting to be swept up in drama and even danger than to do the harder, duller, things that must be faced at home. Go-baggers have made their minds up. Most of us have no idea what to do. At the book’s opening James outlines three points as the foundation of his approach, one of them is “always agree with everything they say, never asking questions.” As you will have instinctively understood, this is as not as simple as it sounds. “We haven’t seen much of Dad lately,” says mum. Where once I might have pointed out gently that her husband – my father – passed away two and a half years ago, I adopt the new strategy instead and answer. “I haven’t seen him, and I’d be worried if I did.” This works, Mum laughs, and does a plausible impression of seeing a ghost. This would not have been the case if I had simply set her straight, however gently. So this method is much in favour now, although compared to some of the allegations against reality that I hear these days – that was an easy one.

Claustrophobia 

I consider that if he has snuffed it, then this is not a bad way to go. Scallops, driving, pubs and fires. For what had threatened to be a long and perhaps undignified decline to have halted abruptly is no tragedy. My sister is asthmatic, still waiting on her jab, and so stays clear of things. “She’s avoiding us like the plague,” says Mum. “You’ve got the plague,” I tell her. She laughs up an inordinate amount of phlegm. Perhaps this isn’t over. Maybe it’s hardly begun. My sister has phoned Mum’s GP and the practice is one of only two in the city that are offering the second jab. “If Mum tests negative first they say she can go,” my sister reports. Mum’s positive test is from four days ago, on Saturday it will be a fortnight since her symptoms started. Maybe this is worth a go. Two jabs and she’s had it, surely that would make her bulletproof. Which would be a load off. A whole new world. On Talking Point, Starting on a journey found the book ‘immensely readable’, but adds, ‘His entertaining style of writing, whilst easy for the reader, masked much of the gravity of the situation and perhaps covered up some of the meaning. In other words, joking about a poo explosion tones it down for the reader?’ This is another property of grief – that it can pull us out of time and locate us with the lost somehow in some kind of impossible union. We are ‘there,’ and this is closer then, than being apart. This impossible touching is the addictive component perhaps, the taste of stability that provokes us to swallow and then replant, plough and devour again our mourning when grief gets complicated. Or when something just comes out of the radio, junks the narrative and grabs you by the soul.

It is a very small space in which to operate, particularly when one must work around the victim of the latest indignity. Over time we have discovered that best practice is for the sufferer to remain where they are until the first stages of clean up are done. As I snap on another pair of nitrile gloves (and if there is a single invention that makes all these things bearable, it is a box of nitrile gloves) I reflect that there is something to be said for a family that has entered a post-embarrassment culture. In the room of furtive reflections, we finally have nothing to hide. I felt some confusion throughout the whole book. Was it a woman writer writing as a man? Why wasn't the author identified? This is about the risks and limits of language, and the power hidden inside it and ourselves. This is about what words can and cannot do. Image: A seated man sharpening a quill pen. Engraving by C. Guttenberg after F. van Mieris. (Mieris, Frans van, 1635-1681) Credit: Wellcome Collection, Attribution 4.0 International (CC BY 4.0) One reader told us they related to many of the book’s challenging events and especially valued its use of humour. And yet when the revelation about Mandy’s true motivation is delivered, a third of the way into the story, it is unexpected. Moggach successfully subverts our expectations, taking the novel into unforeseen territory, exploring themes of desire, expectation and the ownership of collective family history.Robert and Phoebe’s father, James, has broken his hip and needs full-time care. Robert lives in Wimbledon, Phoebe in Wiltshire, and “their father’s village lay between the two of them”. In the past, the siblings have argued about which of them should visit at times of crisis: “Robert was nearer, but traffic was diabolical, getting out of London. He also subtly reminded Phoebe that he was a family man, with commitments. In fact, his children had long since left home and all he did was sit in his garden shed trying to write but she didn’t like to point this out, because mentioning his novel wasn’t advisable, dear me no.” Later that night I get a text from the government from the swab I did, confirming Dad’s result. Then I get one about Mum, she has it too. She seems OK though now. I tell her she’s got it. “Got what?” She says. I hold up the newspaper she’s just read and point at the Covid headline. She misses that completely and instead does an impression of Donald Trump who is doing his fists raised thing in a picture. “I’m tough – NOT!” Says Mum, in an American accent. “He’s gone mad”. She is 92 and an instinctive conservative, but she knows who’s who. Dad”, they would say, “is doing very well today.” Or “Dad is confused.” “Don’t say Dad,” I used to think, “he’s not your Dad or some identikit, every-Dad…” but I never spoke this out loud and I got the sense that even if I did it wouldn’t matter since this was the language of the place, the lingua franca, as they say. And they said, ‘Dad’ all the time about half the people in there, but there were other words that were never spoken and death was first and last among them. This is your bank…” is always a good one, “this is the tax office,” or “this is your internet provider” – these of course are the easy ones to the spot – these people know nothing about you except your number and perhaps your vulnerability. I am convinced in some corner of the dark web there is a vast accessible database with every phone number of everyone over the age of 75. Which — given that he had been t hat ill for four years, left the very room in which we sat on a stretcher and had only been visible through a window and then through masks in a medicalized institution which did a fair job of looking like budget hotel – how could you think he was anything but “that ill.” I had to laugh, but then thirty seconds earlier I was surprised too. Still, “ that ill.” How ill do you want him?