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 carer had left everything in place and, after living with her for eleven months, she knows this modern incarnation of my mother much better than I do, in a practical sense. So when the carer left and it was just Mum and I, there was a return to a much older reality. And then this place where death had been verbally banished, felt strange. But then he and I like all of us in the end, were only visiting. Every world has rules of its own. 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.’ 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)

It's definitely opened my eyes to a world that I knew little about or had even really thought about and has given me a better understanding of what may lie ahead one day. 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. Even now, months from that recognition, I need to sit down when I hear it. If there is no one about then, I will cry. It might be the same if someone were about, it just hasn’t happened yet and I wouldn’t want it to. This is as intimate as I can let it get, for now.

Claustrophobia 

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. There is a chapter on hospitals and care homes which says: “The task that society assigns—behaviourally though never verbally—to these institutions is to cater for the socially dead during the interval between social death and physical death’ (Miller and Gwynne 1972:80). Carrying out such a grim and painful task must inevitably create intense stress and anxiety, which affects not only the staff but also the inmates.” 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? 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’.

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.The mirror business, like so many other seemingly innocuous things that, in a younger household might submit to logic, will run and run. I have found it useful, when considering if and how to intervene in the everyday contretemps that permeate my parents’ 60-year marriage, to remember that one day, soon, there will be nothing to argue about and no one to argue with. 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.

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. Then I wonder, is she evolving? If the planet is heating up, then not feeling it is perhaps an adaptive manoeuvre? I have been in the elderly realm a while now and, believe me, stranger things have happened. When my father was in his late eighties I sat with a consultant who stared long and hard at an X ray before announcing that a hole in dad’s lung, of some years standing, appeared to be repairing itself. This minor miracle was a of little help in the bigger picture but it does prove what I can see now is becoming one of the persistent refrains of this experience – in the end, you just don’t know.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?’ Though he loves an entrepreneur, my father hails from a vanished land of unionised labour and pensions. The same pension that keeps the house at the approximate temperature of the palm house at Kew all year round ensures a steady stream of Bezos’ foot soldiers to our door. 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.’ 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?’

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. All bets are off,” says my friend T, whose mother is ninety three and in a care home which grows more expensive by the month. The idea that either of our parents might pass away has become something so distant through persistence and deferment that we have exhausted all presently accessible forms of sadness and instead sustain one another through a series of bleak jokes. We’re on a drip, emotionally speaking. Perhaps we should bet on when it will happen? We will both need the money after all. “I could ger Paul in on it…” texts T. Paul is in the same position. This would add to the prize fund. But then I wonder, is this is a joke, or the beginnings of a national strategy? Few things feel surprising anymore – but then you get a Marlene Dietrich video. 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.’

Precious medicine 

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…