Death & Taxes

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.   

Marvin Gaye – Trouble Man – YouTube

This is the day…

From slips and slops to all good bookshops in just three years…

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

Are we here?

Mum, don’t turn around, but…

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.

Good Grief

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.

Nothing to see here, and less to say about it.

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.

Tragic Bullets

  • “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?
“Doing just as much in the community as Marcus, just not talking about it. OK? ”
  • 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.
“Told you I wanted to die at home, Boy!”
  • 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?”
“Woke up this mornin,’ waited for the carers to come…”

One shot. Kick the bucket?

“Remember the curve for the placebo group and the vaccine group completely diverge…”

Monday:

With Dad in hospital the circus of care is suspended and the house feels suddenly calm. Mum is the secondary beneficiary of Dad’s safety net. The place is busy when he’s here. Bustling with paper masks and plastic aprons. It’s been ages since she’s been alone, can she handle it? It doesn’t matter for now. I’m here. Alright, Dad might be dying, but in the short term, in the absolute moment, this is a break. The worry, if we must worry, is how we will cope if he comes home even weaker than when he left. What then?

“I’m back, everyone!”

Tuesday

A hospital doctor phones and says the fluid is clearing from Dad’s lungs and he will be off oxygen soon and maybe home tomorrow. That would be good, we can pick up where we left off. Even chaos is contextual. I’ll take familiar mayhem over change. They are just waiting on a Covid test. Me too I tell them, there’s two in the post. They will know within the hour, they say. Two hours later they phone back and say he has it. Whole new ball game. Goodbye ICU, hello Covid ward.

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.

Wednesday

You can seldom tell what anything means at the time. I had Covid in November and it was unpleasant, but now? Now it seems like a good thing, a community vaccination. I wouldn’t have been able to look after matters here while Mum was ill if I was that sick again, or worried about getting sick. My guess is she had it first then Dad caught it when she came downstairs and was feeling better, but who really knows? The hospital calls, Dad is back on oxygen. I tell the consultant they have both been vaccinated and now they both have it. The government says one shot is all you need, so this is big news right? “It’s not up to me to determine that,” says the doctor. “But we should consider that that first shot might be why they are both alive.”

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.

I drive her to the plane-less local airport that is now a testing centre for another swab. She has never queued to get into a festival so the hi viz vests and plastic tents are all new to her. And of course it is a thrill just to get out of the house. We go for an illicit, unnecessary drive on the way back as the sun’s out, but get stuck behind a hearse. I just can’t bring myself to overtake it. There’s nothing else on the road. Mum puts on her posh voice when we get back: “Oh what a nice living room!” she announces. Acting surprised at the sight of her own house. Or at least, I think she’s acting. Lockdown has eaten her mind, somewhat. One never knows. I take my daily sanity stroll before the sun sets.  

Thursday

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.

Ten months into the crisis and this is the first week the carers are being tested. Even now they have to test themselves, post that test and keep working while they wait on the results. One of the carers calls me and says he can’t register his test online, even with his daughter helping him. This is no surprise to me, I was on the phone for a day getting ours organized which delayed the whole business. But for some mirth, you might call it a joke. This is more of a Divine Comedy, one which yields a different kind of laughing.

“You’re through to hell. Your call is important to us… “

Friday

No news from Mum’s last test. I call the helpline, they can’t chase a result until it’s five days late. Can I then in good conscience take someone who might be infectious into a line of vulnerable people? I get a text about Mum based on her symptom date which says she can go back to work. The GP wants a negative though, but we have nothing. I tell myself I can justify taking her with no result, but not if she still tests positive, which might mean months more of treating her like an unexploded bomb.  The whole damn shebang is pulling my brain apart – ‘you are powerless – now make a huge decision’ – the dark dialectic of our times – and it is only when I stop for a minute which itself is almost never that I can feel it. Better not to stop then.

My friend phones. I can hardly bare to regurgitate the whole sorry saga and almost don’t answer, but then I realise he may have news of his own so I pick up. He does have news. He has a lot of staff and a fridge full of lateral flow tests. I can test Mum in the morning ahead of her appointment and then we will know.

Saturday

I am awake at five, as per. The was a text at three saying Mum was still positive on Wednesday so unless today’s is negative there will be no second jab and we are out of luck.

At seven I drive to my friend’s office to get the test. I feel like someone is pushing long, cold nails into my head and stomach, the malign acupuncture of anxiety. Then I turn on the radio which plays the opening movement of Vivaldi’s ‘Winter’ and I drive through the deserted, dawn-pale city to the profound wonder of this piece. That a human being should conceive and execute such a thing, that it can be performed and recorded and that centuries later I can hear it … well you listen, you figure it out, but suddenly the nails are nowhere, and neither am I.

Strings of life…

Vivaldi: Winter (the Four Seasons), 1st mvt. Cynthia Freivogel & Voices of Music 4K UHD RV 297 – YouTube

I meet my friend in the car park of his business and he hands me the test through the window, takes a step back and then tells me has just re-watched Akira Kurosawa’s film Yojimbo. Now I have things to do and places to be but one of the many reasons my friend and I are close is because we like to sit down and re-watch films like Yojimbo, and if you get to my age without realising that help comes in the form that it comes, not the form in which you would like it then, really, God help you. Eventually he eases up on the cinematography review and I speed home. Mum’s vaccination appointment is in less than an hour.

I test Mum for the third time this week. We wait on the result. “What have I got again?” she asks, just as the ten minutes are subsiding. I check the result.

“You’re clear.” I tell her. “Get your coat on.”

Long shot indeed.

“Kiss the good life. Goodbye.”

“Another sound is dying…”

The alarm is set for six a.m. but I wake at five because that’s what happens when I set an alarm. At 5.30 I put on nitrile gloves and separate the tests. At six I wake Dad in the dark, he remembers that this is happening and why, which is good but he can’t keep his tongue still while I swab his throat but it will have to do.

More surprisingly, at 6.15 Mum remembers why I am in her room but also does the tongue thing. Neither of them complains though, nor do they retch and splutter as I do each time I am tested. I am impressed, and the tests are in the fridge now waiting for the courier and so at least that is done. I take some pride in this pre-dawn accomplishment, like I were a wartime bomber pilot, but the truth is I am not the pilot. I am way down below, far from the decisions. The truth is something heavy is going to drop on us.  

It has dropped already in fact; we just don’t know it yet. Not for the first time I am like the cartoon character running as if on solid ground, but really out in thin air and fated to fall.

Alright..?

The courier comes mid-afternoon and takes the tests away. The stoic climate collapses early evening when Dad says he has a sore throat. He is a constant symptom reporter ordinarily, calling out that he is too hot/ too cold/breathless/hungry/something all the time.

“I swabbed your tonsils, maybe it’s that?” I counter.

Seems reasonable. I mean they’ve both been vaccinated, once. This is all you need, the government say. Mum is up and about now after her flu. We’re doing these tests just to be sure really, out of politeness almost. It’s a busy house. A small care home, in effect. It doesn’t seem likely that anyone could have…

“I can’t swallow.” He says an hour later, raising the stakes.

“This is palliative talk,” I say to him, “of course you can.”

I give him a Strepsil. He cheers up, briefly.

The evening carer who helps him to bed also judges him OK, and he is closer to Dad than me in some ways these days. That said, this is the same carer who has argued at length with me that vegans eat eggs and wasps take holidays.

“Once the kids left home we thought, you know, ‘go for it’ and now we come here every year.”

Whatever the truth of any of this, the Old Man gets horizontal again and we call it a day.

In the night I can hear him coughing but that’s normal. It would be more worrying if things were quiet. I get up around six and he sounds different. The daily drama in his lungs sounds suddenly aquatic. Swampy. I go into his room and his lungs bubble like a bong.

Had your chest X rays back, and I’m afraid…

The dawn phlegm spasm is a daily thing, so I somehow convince myself that this nothing to worry about. Not totally though, in some secondary sector of my mind, sirens blare.

Morning carer comes and Dad, heroically, lets himself be dressed and paraded to his chair. Once there he can’t swallow his porridge, though he tries. He gives up so easily on small things sometimes that to see him press on is blowing my mind. My sister calls. I tell her what’s up and she calls the doctor to see if they are even sending people out anymore. An hour later there is one at the door, dressed like a welder in a nuclear war*.

Just going to run some tests

Chernobyl MD takes Dad’s SATS. If they are less than your age you are in a lot of trouble and his are well under 90.

“He needs to get to hospital as soon as possible,” says the Dr, gravely.

“No hob spittle!” gurgles Dad.

Here we go.

The doctor has his laptop out and explains that though he can see Dad has expressed a wish to die at home he feels if he had some oxygen under supervision he might pull through this.

“He’s strong enough to have a shot.”

“Give it a go?” I urge Dad.

“OK,” he acquiesces through the rising fluid. It sounds like the Poseidon Adventure in there.

Seriously, everything’s going to be fine…

“You might be back in a couple of hours.” I say to Dad. I don’t know where I’m getting that from, but no one corrects me.

My memory becomes sporadic as does my consciousness at this point but seconds later me and the doctor are in the kitchen and his tone is quite different.

“You should understand, there is a chance he will die and, if that were the case… you will not see him after this. So you should prepare yourselves for that.”

There are things you know in life and then there are the moments when you feel them. This would be the latter category. The doctor will call the ambulance from his car, he says, and goes. 

My challenge now is to explain to Mum who can barely hear and whose short-term memory has been mislaid that her husband of over 60 years might not be coming back this time.

Tough at the best of times but perhaps, mercifully, comical. Plan B is to write “HE MIGHT DIE” and an arrow on a piece of paper and hold it next to Dad’s head. Happily, Plan A succeeds, which is me pointing at him and yelling “HE MIGHT DIE!” until she nods her head.

She shuffles over to his chair; we do a kind of group hug. They start saying goodbye. This is too much. I go to the kitchen but can hear Dad gurgle-yelling, “SIXTY YEARS! IVE HAD A GOOD LIFE!” and Mum yelling “YOU WHAT?” until I don’t know what my tears are about.

I’ve had a couple of scrapes myself, and my sense of what dying felt like was clear enough to think that the real thing might not be that bad – as of itself. Quite amazing, in fact. I run back and tell him. He looks pleased to hear this. Like he’d found money in his trousers.

Actual footage of actual heaven

I call my sister and brother. If they can make it here before the ambulance then they might want to try.

There is a pause in the drama, we all sit there for a bit and then Dad makes an announcement.

“Take to me to the toilet. I’m not going to soil myself on a trolley.”

I am not about to question what might be his last request, and I can see his point. If this is the final thing we do together then so be it. No one can say we didn’t keep it real. And so having posited some kind of heaven I heave him onto the toilet perhaps for the last time. It occurs to me I might miss this. But then many things occur to us, and few of them are right.

The paramedics come in a less severe version of PPI than the doctor. One of them offers three potential diagnoses: heart failure, secondary infections from his rotting foot, or Covid. They give him oxygen and he reanimates entirely. As they wheel him out he rises from the trolley.

“I’ll be back!” he murmurs. I’m not sure he’s seen Terminator.

“Hasta La Vista!” laughs the paramedic, who clearly has.

My siblings arrive just in time to bid the Old Man farewell as he is heaved into the ambulance.

As exits go. If this is that. It isn’t bad.

The ambulance leaves, and there are now loads of us in the house. Not wise. Now the admin is done the emotions queue for processing. My sister deals with her anxiety by reeling off a list of unanswerable questions about care arrangements for the following week.  Eventually I have to say I don’t know.

“Ooh.” She says to our niece. “Men under pressure.”

I am sincerely worn out by that kind of analysis and so refute it as politely as I can under the circumstances:

“This is not about fucking gender!”

She flees into the extension and starts loading up the washing machine, which somewhat undermines my thesis. Then Mum trundles in.

“He said he had a good life,” she reflects, kindly. And then her tone hardens just a fraction.

“Well he would say that. He did what he wanted.”

Tony Bennett – The Good Life (Original) HQ 1963 – YouTube

*slight exaggeration

Test. Match. Special.

Heroin
You and me both, mate

“Just got a touch of flu today,” fibbed the luckless addict in the 1980’s anti-drugs campaign. 30 years later and flu has become the preferred narrative in our house since Mum took to her bed and stayed there, accepting little more than Lemsip and offering nothing but tissues and phlegm and what you might call a new, continuous cough, but I don’t.

This is not an old lady who stays in bed lightly, so we know something unusual is up. Dad is downstairs, as ever. Forever. And I am suspended between the two of them. Halfway up the stairs. As in the song, “A little mouse with clogs on…” The mouse is me; the clogs are all this grown-up, growing old stuff. It just doesn’t fit somehow. We order some Covid tests. Better to know, right? Better to be sure.

clogs on
Like this, but with less dancing.

The day of the tests become a test in itself. In the movie Goodfellas the climactic sequence is a day in which the lead character has to drop off some guns, make dinner for his family, take one of them to hospital, organise a drug deal while taking a lot of drugs and being followed by a helicopter which might just be a figment of his imagination. Today becomes my version of that.

goodfellas garage
“Is that the Feds or the District Nurse, you think?”

Mum says she feels worse, can’t get up, and Dad’s morning carer is two hours late. The postman drops off the tests and runs away from the house when I open the door as if the place were about to explode. I envy him. My sister, who ordered the tests texts me to ask if the tests are here since she has had an email saying they are but wants to check anyway.

Next I have to register the tests online, unpack them without contaminating them and get Mum and Dad’s medical info together which ought to be centralized or embedded in my memory but instead is scattered all over the house, bits of paper and prescriptions and DNR’s all over the place like deathly confetti. Mum calls me from upstairs, Dad from downstairs. All the ordinary things need doing and it also takes time to explain to them both that I am going to test them and what that means and how and why.

The test registration page is a seven-page online accumulator that won’t let you save the information you’ve input, and which crashes every time I get to the end. I try multiple times from multiple browsers while simultaneously dialling into the government’s Covid helpline which like the website is overwhelmed and thus no help at all. Meanwhile I have to navigate the ongoing argument between two of Dad’s carers and my sister about the antibiotics he needs for his foot which has turned purple again. When the two hours late morning carer has made his position clear he retires to the toilet here for 20 minutes which is entirely fair enough – he starts work early and you’ve gotta go sometime, but now mum is in the upstairs bathroom and I need to go and then my sister comes around and explains her view on things to me from the drive since she won’t come in the house since she’s asthmatic but that means I have to stand out on the drive to hear her and it’s freezing and I’m not really dressed yet so then I feel like I’m getting a cold. The real headline is nothing is getting done but I’m done with government portals which must be quieter later, right? So I go out for a drive.

henry hill car
“Is that a helicopter or the guy from the chemist?”

When I get back mum is back in bed. I lure her downstairs for some soup, let in the next carer for Dad and then try to register the tests again. The online system still won’t work but eventually I get to the final level of options on the phone and speak to someone who says they can do it though it’s too late to drop the tests off for collection today but what the hell, yes of course.

Except… I’m calling for two people without emails or cell phones and I’d like their results sent to the phone of a third person who isn’t me, and no their address isn’t my address or this number my number and so we are on the phone for thirty minutes using the phonetic alphabet to relay and recheck 11 digit numbers while not mixing the tests up and because tomorrow is Sunday a courier will have to come and collect them and he might come at 8am so I will have to wake my parents in the dark and swab them an hour before this but then again the courier might not get here till four, so who knows and who can possibly say? Either way, I’m in all day tomorrow until he comes.

Mum tries to get upstairs without using the stairlift and as I come down to intercept her I fall down the stairs and cut my hand open on the teeth of the stairlift rail. There on the stairs. Right there. I have been here for two weeks which now feels like one long day since I can’t visit anyone else because of the restrictions and I really, truly, want to get out of here.

I call my sister who says just leave the tests on the step since its colder than the fridge and makes no concession to the fact that I have given an entire day to organizing this now and so am in some way expert, before telling me what she thinks and then asking me for unknown unknowns about stuff we can’t possibly know about until the tests — which I can’t administer till the morning — have come back. My frustration is audible, to put it mildly. She says I should have texted her if I didn’t want to talk but last time I texted her she rang me up to talk anyway. We hang up. She texts me another question about next week – so there. I call my brother – who has Covid and is now worse than he was yesterday.

Now it’s evening. Dad is obsessed with strawberries and the trade-off for having to find them is that they do at least cheer him up, so I don’t mind getting them for him. This being January they have been flown in from Egypt which is funny since I call his room ‘Pharaoh’s Oven’ which sounds like a Cairo pizza joint but it’s just because the place is full of stuff and clutter he appears to want with him into the afterlife and it is always very, very hot.

“Luck is a big thing in life” – says Dad as he sets about his strawberries. He is gearing up for one of his occasional speeches, but Mum has called me upstairs again since she wants half a glass of water. Fear of spills and arthritic joints mean we deal in halves of everything now but that of course means all things happen twice as often and I set the alarm for 6 AM and lie down since tomorrow is another day though not, I hope, like this one. But if it is, well that is that, and then another line from the old drug campaigns comes back to me, another addict’s mantra: “I can handle it” Well, we’ll see. Luck is a big thing in life, apparently.

Oldfinger

parked car
“I think that’s a disabled space…”

Mornng (if morning it be where this finds you), and season’s greetings. The good folk at The Guardian have let us back in the paper again. You can find the story here:

https://www.theguardian.com/lifeandstyle/2020/dec/26/i-expect-my-elderly-parents-to-die-but-to-suffer-alone-the-truth-about-caring-through-covid

The faithful and observant will note some borrowed content from the last post, but there is new material as well, I swear.

To anyone coming here from the new Guardian piece, welcome. Again, you might bump into a couple of sentences you recognize in the next post but scroll down the page for fresh elderly larks aplenty.

If you missed it, here’s the original Guardian piece from 2019.

https://www.theguardian.com/lifeandstyle/2019/jan/19/dad-more-comebacks-than-elvis-confessions-of-a-reluctant-carer

And news of the book, which, due to the ‘Rona, will now be with us in Spring 2022, it seems.

https://www.thebookseller.com/news/picador-pre-empts-reluctant-carer-after-viral-article-970451

Thank you for clicking and reading and sharing and so on.

A better New Year to everyone.

More here soon.

TRCx

 

 

 

Us, and Them

Darth-Vader-I-am-Your-Father

“I shall become older than you can possibly imagine!”

Had you designed a virus to finish off my father, Covid would have been it. And yet, while others fall, he – frail, breathless and immobile long before it was trending, goes on. His 90th birthday –an occurrence no gambler would have sanctioned – including the man himself – will be the first time we have let people back into the house since lockdown.

People that is who are not paid to come. Carers, district nurses, three ambulances (one necessary – two for imagined problems) have made ours the busiest address in the street for months.  People as in family, loved ones. People as in me.

When it all went off I was busy in a borough with high infection rate and stayed put. I joke about my parents demise but I don’t want to be the provider, especially by accident. If there’s blame let it be for something deliberately done. So my sister, closer to our folks in March and in the same, less-infected city, has manned the frontlines whilst in theory also shielding herself. Fun times.

In the absence of contrary or clear guidance I came back for a week last month and realised as soon as I walked through the door that lockdown, for all its worries, had for me been a three-month holiday from our parents. Thank God they are alive, now here we are again. It always did feel like the house was outside history.

Lockdown, safeguarding, whatever it’s called makes little odds to Dad, who can’t move anyway. Mum is frustrated, but has no idea what’s going on. You may as well try and distance yourself from a loving child or an irate terrier. “Is the thing still making people ill?” So they say, mother. Now get away from me.

As his 90th looms I note my father’s mixture of amazement and disinterest with interest of my own. While the rest of the family frets over what is right, safe and desirable, our subject soldiers on.

Not for the first time I wonder if we want things to be well, for them to be well, in ways that they themselves do not anymore. As with Mum – and other elderly folk I hear about – they would rather do their thing than face legislation in their last days. And this I think is not just brain addling and old age, this is an existential statement. They are on terms with death that we – the comparatively young – do not experience directly.

Oddly – or perhaps not, I sense a connection to the protest movement in America here. If you are, as some in the US seem to be, at risk of execution just for doing normal things, then why wouldn’t you march and gather? Those close to death by age or fate or circumstance, ought not be subject to the judgements of others looking on from safety and saying ‘if that were me… ’ because we are us and they are them, at least for the time being.

Yet in this house I am the state, here I have duty of care. But I am increasingly of a mind that the first duty of care is to pay attention. So I will take Mum where she wants to go, for sanity more than survival. It is harder to pay attention to Dad since he has less to say.

When the 90th comes grandchildren pass through in groups in staggered patterns, none too close and over days. This is not that bad since physical intimacy is not the old man’s thing. Emotional distance, social distance, again we are ahead of the curve here.

Again, I think, this is for us and not for them (and so what? for we are real people too). Two weeks later he calls me into his bedroom as I am on the way to mine, complains about toothache but then tells me the story of his life, more or less, in thirty minutes.

“Ninety!” He says, frowning. Baffled as anyone. Adding, after much reflection and discussion of the unknowable nature of existence—

“I’m a lucky man.”

I am too, I think, momentarily. Many are the days when I have not heard this or felt myself close him or that he was even a player in this thing of ours as we have come to understand it. I am not sure he will remember the conversation, but here I am, writing, so perhaps I will. “We’re not so different, you and I,” as the villains say in the movies. “Join me!” they say after that sometimes.

Not just yet. Things to do.