The Reluctant Carer: Dispatches from the Edge of Life

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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 is much closer to 100 than 70, and if a train were coming, she might not hear it. Indeed it might have passed her by before she could summon up the part of her working memory that calls a train, ‘a train’.

The proverbial go-bag is not just for those running away from trouble but also those whose job it is to head toward it. It is no coincidence that Professor Lucy Easthope, the crisis expert, whose work propels her at short notice into places everyone else is running away from, is known online as @LucyGoBag– her book ‘When The Dust Settles’ is excellent, by the way. 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. I am the youngest in my family and so was caring for elderly parents before most of my peers, but I know that few of them are in the kind of work, or the kind of accommodation, that would enable them to fund the care provisions my father was able to: a well-rated care provider of his own choosing, that enabled him to stay in his warm house, eating more or less what he wanted while still supporting his wife, and in the end, a good care home. My younger friends especially, members of generation rent, stand no chance. On the road, Dad is transformed. I’m happy to see him doing something well and enjoying it. It can take him breathless minutes just to open a letter. As we leave town I alternate between memories of childhood drives and panic over what I should do if he were to fall ill at the wheel.

Precious medicine 

So now you know what’s a foot – and something of my father’s feet, perhaps. Use yours to visit an earthly bookshop if you like. A carer in Hampshire says, ‘The author is rude and funny about his parents’ idiosyncrasies (very funny at times), but he also lays bare his own shortcomings with unflinching honesty. A paramedic arrives and we place my father across three chairs, like an extra in a stage illusion in which the seats will be removed, and leave him suspended. Instead, an earthlier miracle: with his feet higher than his heart, my father revives. I get behind him and support him in a way that feels therapeutic but more closely resembles a full nelson. I signal to the owner to call an ambulance, ignore the stares of our fellow diners and ask plaintively in the old man’s ear if he’s all right, if he can hear me. Nothing. However, Jean says, ‘I would recommend this book – no, it doesn’t show the really dark and difficult side of dementia, but he wasn’t dealing with someone who had advanced dementia. He was dealing with two parents, both very elderly with lots of health issues.’

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. Liam Appleby, in Tyne and Wear, says, ‘It was funny in places, moving in others and captured the full emotions throughout the journey of caring for someone. Truly a great book.’ Life’s all numbers, or not, depending on your state of mind,” she goes on. Like the nurse though, there is part of her that won’t be fooled. “I am going bloody senile,” she adds. “You should put me outside.”The Reluctant Carer is so good at writing about the claustrophobia of being a carer,’ says Sue. Noting references to time off from caring for work, and even a holiday, Starting on a journey asks, ‘How many of us get that?’ In between bouts of washing, feeding, cooking and fighting there are times that test you, days where everything goes wrong and moments when everyone, miraculously rises to the occasion. And amidst all of that, this strange second childhood offers up a shot at redemption - if you can just stop everyone from falling down. Even if she wasn’t quite sure who I was or what day this was happening, she knew what needed to be done and how she liked to do it. This was not what I expected, or what I thought I knew. In a sense it was wonderful – and if it is never quite the same again, – then it was even more so. Publishing director Francesca Main acquired world English language rights in a pre-empt from Eugenie Furniss at Furniss Lawton. It will be published as a lead title in spring 2021. As ever my mother’s house offers a troubling insight into all our potential futures – in this case a planet where it almost never falls below 30 degrees. I am well accustomed to mum feeling cold in winter when the house is well heated. My late father was something of a pioneer in this regard, but now his surviving spouse is convinced that this record-breaking, life-threatening summer, is just not that warm, and this is proving tough on those of us who must attend her.

You get six weeks of free care, then there is a kind of online court case to see who pays for this. It turns out swallowing and talking and breathing are “activities” which he is “participating in.” So he is not ill enough by these measurements. Merely old. So we are paying for him.The Reluctant Carer moved in with his elderly parents and looked after them for eighteen months – though neither intentionally nor entirely alone. His confessional and reflective blog The Reluctant Carer – I See Old People, Confessions and Reflections from the Edge of Life. has spawned a book The Reluctant Carer by The Reluctant Carer - 9781529029383 - Pan Macmillan that’s been described as bleak, wise and hilarious. Ran into an old acquaintance the other day who told me excitedly that they were now, “in renewable energy.” “Have you met my mum?” I answered. They were somewhat baffled but I was serious. Whatever force is driving my 95-year-old mother into another winter, it seems more reliable than the sun.

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. https://www.dailymail.co.uk/home/books/article-11059147/The-reluctant-carer-gave-mother-father-end-life-care.html The centre of this sonic confusion is the kitchen. Nutrition, medication, laundry – it all happens here. Adjoining it is a small bathroom, which adds to the fun. Although separated by double doors, my father is insistent on leaving these open (driven, according to my sister, by a fear of dying on the toilet like Elvis). This means that, to all intents and purposes, and certainly in terms of sound, the toilet is in the kitchen, too.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. In between bouts of washing, feeding, cooking and fighting there are times that test you, days where everything goes wrong and moments when everyone, miraculously rises to the occasion. And amidst all of that, this strange second childhood offers up a shot at redemption—if you can just stop everyone from falling down.