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

“”Do you have dum dums?” “That’s all we have, mate, and all we are. ”
  • “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.

Taking Back (remote) Control

After what seems like months in which the Old Man’s attention has been mostly directed inwards, toward the floor or in anticipation of the next and perhaps endless sleep, he suddenly asks for the TV remote control. Or to be precise, a lesson in how to use it.

The thing was glued to his palm once, to have lost all sense of how it works is troubling but being interested in using it is encouraging. Less so perhaps for Mum who has enjoyed the relative calm and televisual autonomy his apparent decline had enabled. Suddenly he’s back and curious and keen again. Let’s not get in the way of that, even if does mean watching High Noon first thing in the morning every day for the rest of our lives.

An inspection of the remote reveals the buttons are worn blank and down to nubs from his relentless pressing (Mum favours the traditional channels and so has no use for the more elaborate control). Dad is not only back, but he wants the full digital dominion.

I try and use it, but it won’t even work for me except by applying the kind of pressure from your thumb that could shatter a walnut. I order a new one. Try and step him through it. This button means pause—

“I have no memory.” He announces, matter-of-factly. OK. “Could you write it down?”

blade runner
“Lemme tell you about my mother…”

There is less than zero benefit in running some cognitive Blade Runner test on him. What I do instead is count calmly through my frustration. I am, or was, momentarily pleased with myself for getting a new remote, “stunning high definition back at your fingertips.” Now this achievement, like so many others, has vanished into  the swamp of fresh (and ancient) problems. Also, I am supposed to be going out.

I bought a printer (with their money: twenty seven quid, and I’m hedging that we won’t be around long enough for the mark up on the ink to kick in and wipe out any savings) especially for these moments when lack of neural power is invoked as a means to do or grasp less. Notes are better than verbal statements here. I print out an image of the remote and draw lines connecting each button to its function. Whilst I am at it I also cancel a diabetic eye appointment he has decided he doesn’t want to go to. Blindness now being preferable to getting out of the house, it seems. You end up not questioning this stuff. No point dying of frustration before the end of their ride. We’ve come too far together for that.

I hand him the paper and tell him the appointment is cancelled. He squints at the printout and the remote control. “I can’t see anything,” he says. Maybe you should go to that eye appointment, is what I want to say, but instead we step though the remote, and the paper.

“Isn’t there some appointment we have to cancel?” Interrupts Mum. I go to the kitchen briefly. When I come back Dad has got the TV working. Or at least a paused image of Hugh Edwards.

“Why is he on?” says Mum, annoyed. “It isn’t time for the news.”

Indeed. Dad is paused in a recording. We work through it. “We’ve seen this!” Says Mum. Yeah, well it is a recording. She sneers at the screen. She never did like the idea of seeing something twice. We were the last people in the world to own a video recorder. “This is an exact replica of yesterday!” She announces. Tell me about it.

“I understand!” says Dad, stabbing all the wrong buttons, putting aside the instructions. Grease and crumbs already on the paper.

sky remote

“Where are your glasses?” I ask, this seeming central to the problem, seeing the remote itself is now pristine. “Upstairs,” he says. “I don’t know.” He hasn’t been upstairs in over a year.  That’s about all I can take. I have had my coat on for long enough in anticipation of leaving that in the heat of the lounge I am almost on the point of fainting. Hugh Edwards shimmers in the corner like a mirage. Time to leave.

It’s raining. I am moving through town, drinking in fresh air and freedom when Dad phones. “What button do I press?” I can’t see you and it’s raining; I explain. “Oh,” he says, something in his tone suggesting that neither ought really to be an obstacle to him seeing what he wants on television. I say we’ll sort it out when I get home.

I get the control thing. With so much gone by the wayside the tiniest dominion must be madly tempting. The urge to manage something meaningful dashed against the reality of one’s impotence. The world outside indifferent, you in your chair, a network of cells you don’t even manage any more and few die-hard, hand-picked loyalists in the cave to do your biscuit bidding. The Bin Laden of bugger all.

I get back in and the TV is working fine. He’s cracked it. “Can we cancel that eye appointment?” He asks for the millionth time. As ever though the appointment I must cancel is with my own reaction. To run the world inside us, not the household, or the country. That is real control, I’m told.

See you in Control!:

P.S

Some of you have been kind enough to get in touch and ask if we were OK in light of the recent lack of posts. I am happy, and amazed, to report that yes, everyone is alive and well (or the nonagenarian version of well) at present.

The real reason I haven’t been posting so much is because in any spare time I have been working full tilt on a book! You can read more about this life and sanity saving turn of events here.

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

So in 2121 there will be much more to see, if a little less up here between now and then.  Thank you all for your support and your enthusiasm which is what persuaded me to take this next step, as well as everyone at Picador for getting involved.

 

 

Total Recall

actress-violet-carson-on-a-balcony-looking-out-over-manchester-in-the-early-60s-photograph-by-john-c-madden
I remember when all this was… something or other.

If there’s a single emotion I would remove from the cocktail of this experience, it would be anger. My anger. I don’t mean acting-out, shouted, expressed, raise voice, smashed-thing, anger – though all that happens. I mean the pilot light of resentment aroused to blow torch flame by the simplest of things. I don’t care how much is justified, I want to be calm for everyone’s sake. We’ll be OK, and then some triviality spreads like forest fire and we must then stew in the aftermath of another failed opportunity to use the love we, surely, know is all around us just as fundamentally as the dust, the tissues and the biscuit crumbs.

Post-yelling, I feel I am a sinner set to the work of saints. Carers come and keep their cool on eight pounds an hour. I pay a pound a minute, some weeks, to talk to a therapist about how I can carry on.

“Don’t get angry…” Dad will say as a prelude to something he knows is contrary to the collective good, this prefix, in itself, being an act of such subtle passive aggression that it is enough to make you… well, you get the picture.

Given my underlying problem might take years to defuse, I have developed what I think of as useful practice by monitoring how long it takes to takes me to get angry on any particular day. Repetition is my guide. A fundamental and fulfilling force in some arenas (music, art, asexual reproduction etc) repeating things in conversation can drive me nuts, and so it is to this I apply myself to better myself.

Mum’s deafness has always been a rule-of-three* thing. By its third time of repetition any statement will have been abandoned or understood or said so loudly there is nowhere left to take it short of reaching for a bullhorn, skywriting, or daubing a message in blood on the walls.

Less standard and so more incendiary are the repeated requests, “have we, can you, did we..?” etc. There is no benefit whatsoever in turning to the elderly querant and saying, however calmly, “you’ve told me/asked me that.” The higher path is to just keep answering the question as calmly and as often as you can. Any reaction on my part, other than calm, I have come to see as vanity. A bad habit.

My Dad, asking again if I have checked the tire pressure on a car he will never again drive, is a mythic test, sent from the Gods, to probe the shallows of my humanity. If I can, say, finish the washing up, and field several old questions and repeated anecdotes while maintaining a beatific exterior, or even a frown, then things, are, I figure, going well.

Though not yet suffering any specific or diagnosed neural decline, my parents brains nonetheless present sometimes as jukeboxes with fewer records available each day.

jukebox
Features all the hits including, “Are the bins out?” “Is the heating on?” and  “Have you checked the tires, Son? (reprise)”

For a time, my dad had two favourites, sentimental songs he would return to. One would concern a picture above the mantelpiece, a rural scene of the Yorkshire moors, purchased on a driving holiday in the mid 80’s. I was spoiled by foreign travel and alive with hormones at the time. Driving through Yorkshire for a week wasn’t my idea of fun .

“You know that picture?” He would start. Yup, I know the picture. And then he would either praise the picture, or the holiday, or the living room, itself a cluttered pantheon of days gone by.  And then all this would happen again. So what? Indeed, so what. But there are days and moments when you can’t play along. The sulking teen in the back of the car, in some measure,  remains within us. “YES, I KNOW THE F*CKING PICTURE!” Sorry, please forgive me. Press restart.

There is a similar story concerning a place mat depicting a Lancashire hotel where we would gather with extended family years ago. The house has many photos of this scene, thick with folk, fashions and cigarettes all long gone. He used to hold the place mat up, after dinner and say “You won’t remember this place…” But I did, and now it seemed important to him to remind me. Again, this would happen a lot. For a time, I used to ask, “You know, we went through this last week?” He seemed admonished, but it is a tough thing to reckon, what to accept and what to fight for. You don’t want them to slide easily to the place where they don’t know what’s what anymore. That, in part might be what I was defending.

I stopped when I realised he could no longer remember the name of the hotel. Then he stopped asking. Then he stopped eating at the table, or looking at anything much, even the walls. So, once again, a “problem” from the past feels like the glory days, compared to now.

So why the anger, or at least this expression of it? I think it dawned on me the other day. Imagine your mind is a museum, you are the expert, curator and owner, and then these people wander in, tourists in a sense, it seems. And they start getting everything wrong, asserting this is that, or that is this. But it turns out that they built the place, or at least laid the foundation stone. And if they can forget these former fundamentals, then you will too, and then its values and its contents will be gone.

I think there’s some of that going on, when I snap. But if we must forget and be forgotten (all of which seems certain) then can we not forgive each other and ourselves as we go? All very well raging at the dying of the light and all the rest of it, but rage is no help whatsoever in this long, long run. Perhaps that’s what it’s so upset about. Here is to progress, not perfection. I’ll let you know how we get on.

* https://en.wikipedia.org/wiki/Rule_of_three_(writing)

Named, Shamed and Defamed.

Nomenclature: noun The devising and choosing of names for things, the body or system of names for things, especially in a specialist field. 

I find myself puzzled by the choices companies make when naming products for the elderly and infirm. I get that marketing this stuff must be hard, no one wants it, after all. These are the things of need. But in a market economy one must make up one’s mind. Nevertheless, given the implied circumstances of your end user, many of these selections seem odd to me.

First noticed it with toilet frames. Behold, “The Harrier”

harrier bird
Harrier

 

harrier plane
Harrier

harrier frame
Harrier.

I mean, come on. The moment when you must accept that you can’t get up off the toilet without assistance is quite a thing. Do we, when facing this, feel enabled by associations with wild, predatory birds? I’ll let you know when it happens. When I bought my dad’s though it did make me laugh, so if that’s what the folks at NRS healthcare are up to here, reverse psychology, fair play indeed. It is a thing though, once you start looking for it. Exhibit 2, “Buckingham. ”

2000-buckingham-palace
Buckingham

lindsey b
Buckingham

buckinghame frame
Buckingham

Same thing, right? I recognise there are throne associations here and the two principal dwellers of the above abode may well be in grateful receipt of these products (although I note no royal warrants on the websites), and the state pays for both, but still…

I appreciate that users of mobility scooters have reclaimed the narrative and take pride in ironic bumper stickers and the like, but these are indoor things. “The toilet’s on the left, mate. Mind out for the The Buckingham.” “Cheers.”

I’m not singling out NRS healthcare either. It’s rife. Exhibit 3– “Drive”

drive_poster
Drive

golf-tutorial-how-to-improve-1050x591
Drive

drive frame
Drive

This seems the cruellest of all. They may as well call it sex, or immortality.