Recent high temperatures have proved divisive – for every smear of lotion and lick of ice cream there is the sense that we are also heading into – or perhaps already inhabit – some disastrous collective terrain. 

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. 

The problem is compounded by the fact that she has shifted her headquarters. For years she was based in the living room, but for the last few months mum has insisted on sitting in the conservatory. Even plants struggle to survive here in the summer. If you bring her a tea and she falls asleep and fails to drink it, even after an hour here it will still be warm. 

Her present live-in carer hails from Africa but even she says it is worse than being close to the equator. And she has a point. Sitting down and trying to talk with mum in there is like getting a workplace review from Satan. Although they do say the devil knows your name, whereas mum sometimes does not, so perhaps I am being unfair. 

Fairness though, is a relative term. I look online. There are lower limits on the minimum temperature for a workplace but no upper ones. Legally we are fine. Physically we are in danger. 

Sit by an open window and mum will warn you that you might get a chill. This is as heartfelt as it is deluded, but it is also a polite way of expressing her own anxiety that she might somehow perish here, like a snowman on Venus. Meanwhile out on the molten driveway, salamanders tap out and surrender and crickets scream for rain.  

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. 

For her, though, the situation is as profound as it is subjective. Temperature and our perception of it are separate matters. The sun is out and amplified through the glass roof of our extension, yet its tenant shivers in her very soul. If Joan of Arc was 94, her stoicism might have been less surprising. God might know our name, but will he pay our utility bills?

Meanwhile, the heat beats on. The carer and I open windows, mum trundles past and tries to hook them closed with her walking stick, like a mad shepherd. “I’ll freeze,” she hisses as we steer her away from the fresh air she has come to fear. Part of me understands, but another part of me – the part that wishes to live, presumably, does not. It is so hot that at one point I wonder, is she trying to save on the cost of cremation? Numerous factors stop me from saying this out loud, more down to fatigue than discretion. Even when it’s cold it’s hot in here these days, for we are also burning money.

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. 

Knowledge and power are not always hand in hand. There is freedom sometimes in letting go of wondering why things are as they are – the quest for light, for illumination, and certainly, certainty, has its limits. In life and in our house especially – sometimes we fare better in the shadows.

An earlier version of this column appeared on the Spring Chicken website: https://www.springchicken.co.uk/article/adventures-of-a-reluctant-carer-some-like-it-hotter

Thanks to A Tribe Called Quest for the headline.

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…

I spent March on the sofa, in hospital or the bathroom. My infirmity means that my share of the care has been offloaded onto my siblings and the team of carers that together provide round-the-clock surveillance of the Old Lady, now ninety-four and a half.

A surgeon tells me I must try not to move my head for five days. Shored up by pillows and remorse I am Whatsapped a video of my mother doing an impression of Marlene Dietrich. I have never heard her do this before. It’s pretty good. But how is she developing new material while I can’t even sit at the computer? What has gone wrong?

“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.

I prod at my phone without moving my head unduly. It turns out the world’s oldest woman was 122. If Mum lives that long I’ll be 80, we’ll be so skint I’d have to take her on the road, on tour to make money. At this rate through I will die first, or she’ll be pushing me. Perhaps that’s the twist, the thing people will queue up for – ‘and she takes care of him…” Form an orderly queue.

The woman herself though knows that I am ill. While she can’t remember quite why or how I have come to harm some deep, maternal bell has been rung and now she has her carer call me every day. “Come back whenever you like!” says Mum. “I can’t move,” I answer. She can’t hear me. Checkmate. “You can fall out of the sky anytime,” she says – an invitation that sounds like a warning.

Suddenly I see all kinds of things: Bruegel’s Icarus https://en.wikipedia.org/wiki/Landscape_with_the_Fall_of_Icarus, Nic Roeg’s Film https://www.youtube.com/watch?v=KarWCgIw3Wk&t=1s , Auden’s poem https://www.poetryfoundation.org/poems/159364/musee-des-beaux-arts-63a1efde036cd, Walter Tevis’ novel, “The Man Who Fell to Earth.” Science Fiction, technically speaking, but more fundamentally a story about not belonging and drinking yourself to a kind of death and wanting to get home. Then it hits me. Because I can’t go home and see her for the first time in years – because the whole business of who we are got turned into work – I find I really miss it and her and all the rest of it. Few things are surprising anymore – but that one really got me. Falling in love again. Who knew?

Thanks for reading. Paperback cometh. https://www.panmacmillan.com/authors/the-reluctant-carer/the-reluctant-carer/9781529029390

Nothing, it’s said, is certain except death and taxes. But these days if you invest in one you can sometimes dodge the other.

Let’s start with death, which, being unavoidable, we prefer not to discuss. In the Medieval tarot, the 13^th card doesn’t even mention the word. The scythe-wielding skeleton, the severed body parts, these are there to get a message to us. Or maybe from us. What you take those symbols to mean (and I would suggest what’s being depicted is as generative as it is destructive) is entirely a matter for you. Our swerving any mention of the endgame is a cultural preference which has only accelerated since the middle ages – but I was still surprised how hard it was to get anyone to talk about it in my father’s care home in 2021.

I say my father’s care home – I mean the home in which he died – who actually owns the place is another matter, as we will see. While he was alive and judged to be “participating in activities” like swallowing and breathing – and thus too vital for financial aid – he (or rather we, on his behalf) paid north of 1.5K a week to keep him at the facility.

He was transferred there directly from hospital.  The NHS found him the bed and funded his first six weeks of care – we had no say in where he went. We, he, and the system, just wanted him off the Covid ward. Also the place was nice, you could see, more or less where all that money went – though not, it turns out, where it ended up. When someone is as sick as he was and has savings you are so relived they are well looked after that a sum of money that might blow your mind and break the bank in another scenario seems fair enough. It’s worth mentioning that if he had not had the money or he had lived a little longer then the Local Authority would have had to pick up the tab, and in the end, that’s me and you. In the end, where all that money goes really matters.

Before he died though it was hard to get anyone at the home to talk about dying, his death or if and when and how it might happen, and for that kind of money you might think you are entitled to some plain speaking.

“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. 

The juxtaposition between years of caring – in which death is much in mind and was in my Dad’s case much discussed, especially by him (see book for details https://www.panmacmillan.com/authors/the-reluctant-carer/the-reluctant-carer/9781529029352)

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. 

I listened to a lot of prognoses and treatment plans, but no one ever seemed to touch on the big question – how long has he got? The senior nurse would have a kind of giggling fit if I really pressed him for some sense of how things might pan out. In the end they would refer you to a doctor who was never around. This person, they said, would have the answers. But this person is not here to tell you them.  

As the weeks went by and the money and the dignity drained away – as did my sense of what constitutes either, (not entirely a bad thing, FYI) I found myself reading a book by Robert De Board called The Psychoanalysis of Organizations.

The Psychoanalysis of Organizations: A psychoanalytic approach to beha (routledge.com)

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.” 

To make the job manageable the staff deploy what psychologists call ‘social defence mechanisms’. “social defence mechanisms arose because of the inevitable death of the inmates. Using general systems theory, an institution caring for the chronic disabled has only one export, and that is dead inmates, and this is bound to cause intense anxiety among the staff.” Denial is a defence mechanism, and this, I realized was what was happening at the home. In order to cope with so much death, they had stopped mentioning it. In order to be so intimate with those with little time, they seldom used their names. I understood it then, and dropped my objections, let them do as they do. They were kind too, and that is the main thing. When the money’s gone, it’s gone. Then one afternoon, all alone, (the last thing he wanted (‘I expect my elderly parents to die – but to suffer alone?’: the truth about caring through Covid | Family | The Guardian) my father was too(Good Grief – The Reluctant Carer) and, for a time, I denied that also.

Anything we run from is always monetizable. Where there’s muck there’s brass, and when the lights go out certain forces cash in. When someone dies the machinery of the state shakes the tin one last time to be sure there are no back taxes and if the deceased is leaving any money then there is tax on that too.  The money it might have taken to keep them alive in some semblance of decency, in what De Board called that interval, the one between social death and actual death, that, it turns out, is less scrupulously scrutinized. I did worry that my dad’s savings, his house, all of which sprung from a salary on which tax was paid might be siphoned off by a corporate arrangement that didn’t pay its dues here and kept its staff in a zero-hours headlock, but in the end it was all too dramatic to make those kind of checks. And how do you check that stuff anyway?

Happily The New Statesman have the skills and patience to find out.

What they found was what I feared. Some British care homes are kind of portal in which a proportion of families last funds or four figure weekly per-patient cash drops from the NHS are ultimately funnelled offshore. Not the actual home my father was in, it turns out, but several owned by its parent company, one of the so-called, ‘big four.’

So death we must accept, or good luck with the defence mechanisms. Being rinsed personally, nationally as we do our best around it… we don’t have to stand for that, do we?

Marvin Gaye sang that there were only three things for sure, taxes, death and trouble. When the first is a avoidable, the second inevitable, the third might be all that’s left to us to address the situation.   

Marvin Gaye – Trouble Man – YouTube

Since 2019 few things on the planet have gone to plan, and yet, this book, our story, my story and I hope in some sense yours has made it through the vortex of viral and violent twists in our history – which is more than can be said for its particpants, but that’s another story…

This one is now officially for sale. Pick your online vendor here: https://www.panmacmillan.com/authors/the-reluctant-carer/the-reluctant-carer/9781529029352

There’s a summing up of some key points from me here:

https://www.panmacmillan.com/blogs/lifestyle-wellbeing/3-things-i-didn-t-expect-to-learn-whilst-caring-for-my-parents

A lovely extract from the book in last Sunday’s Sunday Time’s magazine here: https://www.thetimes.co.uk/article/gout-insomnia-and-nudity-the-reality-of-caring-for-my-elderly-parents-9g5b5qkcr?utm_medium=Social&utm_source=Twitter#Echobox=1655593736

Cutting edge politcal analysis of the care criss from myself here:

You can listen to the fantastic William Andrews reading the audiobook here: https://www.amazon.co.uk/Reluctant-Carer-Dispatches-Edge-Life/dp/152902935X/ref=sr_1_1?keywords=9781529029352&qid=1655972755&sr=8-1&x=0&y=0

And for old times sake, here is the 2019 Guardian piece which set the whole thing off: https://www.theguardian.com/lifeandstyle/2019/jan/19/dad-more-comebacks-than-elvis-confessions-of-a-reluctant-carer

A startlingly positive review in The Mail

https://www.dailymail.co.uk/home/books/article-11059147/The-reluctant-carer-gave-mother-father-end-life-care.html

N.B Beware comments section in above…

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.

Buy multiple copies and have your front room look like mine…

Thank you for reading, thank you for buying. Thank you for letting me briefly sell more books than Tyson Fury. And maybe, like a fighter, we can get back into the ring and take a swing at him again…

This is the day, after all:

The The – This Is the Day (Official Audio) – YouTube

Life, being life, throws humans one big question way before we can answer it. Evicted from the warmth. Thrust, wailing, into the world, aware suddenly that we ‘are’ and then afraid that we might not be, the first thing we are seeking in our caregiver’s eyes once our own have truly opened, is some reassurance of our being real. “Are we here?” is how we might articulate this. If we are lucky then someone sticks around and looks back at us as we learn to look at them – meaning, ‘yes we are’.

Congratulations, you have arrived.

We learn to stand and talk, but those inarticulate, imperfect exchanges repeat throughout our lives. That search for self, for meaning is part of what is happening if you ever start writing without a goal in mind. As I did, five years ago. Putting down words without knowing why except that it had to happen. It was a sense making exercise – a rhythm beaten out against the cell of my perception. Whether it was published or folded up and thrown away in a bottle, the statements and the questions were the same as before I had language to say them: Are we here? OK, then why? And what next?

I hope you are still reading because after the long, existential preamble the reason I am writing this is to thank you for doing so. In particular the subscribers to the site, the responders to the posts and the Twitter faithful. I wrote, and by reading you answered. You said it was real, and though unknown to me in the beginning you are a reason why. I was looking for proof, and the attention you paid was the evidence required to continue. Now the book is upon us, all kinds of people will be coming on the ride but before opening up the cabin for general boarding I wanted to thank you. Here’s what the book will look like – more or less. It is very much yours, although you will still have to pay for it – life having not just questions but ironies too.

You may pre-order it here: https://www.panmacmillan.com/authors/the-reluctant-carer/the-reluctant-carer/9781529029352

The hereness of things is very much in mind at home where Mum’s perception has declined or advanced to a quantum level. Every mealtime is a new paradigm. Here’s one I call Schrodinger’s soup – after the famous physicist who posited that a cat in a box might in theory be dead and alive at the same time.

Me: “Do you want some soup?”

Mum: “If there’s not enough then I don’t want any but if there is some soup I would have some.”

Me (showing her the tin) “Do you want some soup?”

Mum: “No. Unless there is some.”

Me: (close to losing it) “There is soup.”

Mum: “Then yes. If it’s there”

She reads mainly poetry now. I fancied this was a late life shift in perception, some glimpse of meaning beyond the sense and sentences of prose. What I realised is that she can no longer remember the plots or details of longer stories – except the furthest reaches of her own. 1932 – no problem – 13.02 today – not so good. I wonder should I tell her she is in a book she might not understand? That the woman who looked back at me and let me know that I was real can still recognize me is wonderful – that she taught me to read but perhaps will never grasp what I’ve written about us… there’s an irony I can’t yet fathom. Life, being life 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.

My sister called. She calls a lot, with a flair for doing so when I am doing something. I didn’t pick up but she kept ringing, then the landline and then my mobile again. This is not an unusual pattern. The banalities of life, laundry for instance, burn as brightly in her mind as the big stuff – so that was what I was expecting – something like “I’ve got Mum’s towels,” but instead she said our father had died. The prior months had been so consumed by the logistics, costs and consequences of his survival that I had quite forgotten this was where it was always heading. For all the fatalism and dark humour, near misses, planning and pragmatism, it still came as a surprise.

Death was not so much the elephant in the room but the room itself was all elephant, or the room – Dad’s room in the care home – was within the elephant – you can look at it any number of ways – and getting stuck in and then rebuilding metaphors and analogies is what I do – not for fun so much as automatically. The more I write – or my brain writes — which it does even and perhaps especially when I am not at a keyboard or within reach of a pencil – the more I have come to suspect that the drive to write was formed to make sense of the world. The primary sources of such behaviours are primal fears of abandonment which in early childhood mean prolonged absence and, by extension, death of a primary caregiver. So now that has finally happened, fifty odd years on from when the notion first rattled my cage, and here I am writing about it. What do you know? I wonder about free will sometimes. Sometimes it seems like life has nothing to do with ‘us’ at all.

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—

“I didn’t think he was that ill!”

Which — given that he had been that 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? 

At the long edge of life, at least in this house, mortality became so normalized, or maybe so hidden under the minutiae, the moment of passing is so completely outnumbered by the billion moments of its planning and avoidance and conception that we just said ‘oh, death, that thing…’ like it was something we had meant to pack only to realise we had left it elsewhere but then of course, thank God, we start to cry.

I should say that what I am talking about is a difference category of bereavement from that attending deaths premature, sudden or somehow wrong. At ninety, under these conditions – on whose behalf would one be resisting such a truth? Not Dad’s – whose last months were everything he never wanted though he made the best of it. Not mine – who had so many times had to accept my own wish that this day should come –  this wish becoming a rational conclusion so frequent, so divested of its innate charge that you couldn’t call the attendant feeling or the lack thereof ‘guilty.’

We went to see for ourselves. They had laid him out nicely in the home, in his bedroom tucked into the bed he had never been able to rise from. Flowers in his hands. The night staff almost bashful, waiving the regulations. They could have made us do a flow test in the carpark as per and we would have accepted that but I am thankful that they didn’t. You don’t need fresh material for grievance while grieving. It will get in the way.

“Oh” said Mum. No way to deny what was before her. She took his dead hands in hers and said, “you did your best.” That was almost too much for me because it was true and I think an example of real, practical love and its component forgiveness and it wasn’t long before we were back in the car and I was wondering if anyone could say as much of me.

I dropped Mum at home and bought a bottle of good scotch from the shop just as they were closing since this was Dad’s favourite drink and it looked like a long night. Then I went back and heated up the risotto and despite my absence or perhaps because of it – like it too had a parent called away from home– it was fine and so perhaps would I be.

• “They won’t give me a gun,” moans Dad from his care home bed. A kind of wipe clean pre-coffin. “I don’t think they have any,” I say. Although, you wonder why not, I think. I mean, come on. Who are we fooling anymore? It’s not often you wish you lived in America, but sometimes…

• After a month in hospital with Covid — which he somehow survived, unvisited, alone, against his will in the first place — here we are. Ten weeks since they put him here… finally I can finally come inside. In gloves that are too small to snap on and a cheap mask and a senseless plastic apron, like a slaughterhouse boy on a tight budget. “Good to see you!”

• What Covid couldn’t do, hospitalization has. The small amount of power, the figment, the dream, the rumour of strength that let him live at home with me and Mum and the carers, has gone. Now he can’t move. Now it takes two people to turn him over, like something on a grill. Now here he is for as long as it takes.

• 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 bill comes. Christ. Who is looking after him. Paul Pogba?

• Dad likes it anyway. At least he did when he knew what was going on. Now a UTI has claimed his mind. He thinks he’s back in the army. Malaya, 1949/50. Hence the gun thing. “No gun. No bullets!” He complains. Suddenly he’s OK. Asks me how I’m doing. Then he’s off again. “We’re sailing soon!” We may as well be. I see the future – floating care homes. Care rigs. Slightly offshore. Only answerable to international law. Credible hulks.

• I’m glad the pandemic is easing so now I can finally stop explaining to Mum what it is. Every day. “Was I ill?” Yeah. Just a bit. “It’s quiet here!” “It’s quiet everywhere, Mum”. “Will you see your friends today?” “No.” Etc etc. Amen.

• Serious question. If you killed someone within 28 days of a positive Covid test – would it still be murder?

• I come home and tell Mum Dad is asking for a gun. She shrugs. “Maybe that’s the answer..?” I laugh. Then she says, “he could fight his way out…” . Like he was poised to escape. Like Steve McQueen. As opposed to being poised for very little, somewhat immobile, like Steve Hawkin. But I know what she meant. I accept the first answer. I accept everything. As they say in New Jersey, “What are you gonna do?”