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 13th 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.
The Reluctant Carer 