“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…”
I can’t think what best to say..except to send strength and love…and thank you for continuing to share this hard journey with us. Humour is the best armour. After my dad died, expecting to hold his coffin aloft into the church I was blindsided by last minute rather spurious health and safety measures. This resulted in the trundling of dad along the gravel path to the church on a trolley. Much later I realised that dad would have chuckled, but it took me a long time to recognise that.
Blimey – that’s a great/awful story. I think we’re lucky if the people we care for had a measure of forgiveness and humour – as you say, in time we come to see they would have seen another side to the apparant tragedy and we can too. Thank you for reading and writing in. TRC
I saw you were asking Leslie about care for the elderly and how we are supported.
I lost my dad to vascular dementia. We were lucky enough to be able to take him home with a paid care package (referred finally as the result of a hospital stay). I don’t know why this particular diagnosis meant that we should benefit from this but we were very grateful, with three care visits a day and night sitting 5 days a week. But it was an awful process watching dad deteriorate, know that he would die where he existed as a shell of his former self, bed bound for five months kept carefully, lovingly, alive by us and the army of carers sent to allow us to do that. We never spoke as a family about the trajectory of this illness or had any counselling about it – we took each terrible step as it came. We all felt terrible guilt that our efforts had prolonged the life of such a beautiful man. For me, I would have liked some early intervention so we could have spoken openly together and planned a path ahead. Perhaps we were a curious anomaly as a family without much emotional intelligence and dad initially propped up with serotonin, and never one to share or want anyone to worry. I wanted him to be able to say goodbye and know us, still know himself, and not to suffer or loose every bit of dignity a person has.
Having been down a similar path I know how you feel, and even now Dad has gone I feel the pain and frustration still – I wish you luck in trying to get financial support for what feels like an obvious need. We failed several times before it all became too pointless and Dad was so close to the end – the system pushes you back, ‘social care not nursing’ even though he couldn’t stand, move himself, feed himself, clean himself, take his medication, speak, swallow, cough ….. it’s all about the budget not about the need. I wish you and your family well and hope this will end soon for you all
Yet again you are going through exactly what I am going through. My Dad and I both caught covid from a vaccination centre. i got over it in a week, he ended up in hospital for 3 months. When he came home he looked liked he had been marooned on a desert island for 3 months and has lost the use of his legs. Now he is bedbound and has carers 4 times a day and the bills have gone through the roof. Again, the council pay for 6 weeks and then it is up to us. He suffers from urine infections and is basically waiting to die. There seriously needs to be a change in the law. This could go on for months and with no quality of life whatsoever. I feel for you I really do. It is so tough. Your writing is both confessional and inspirational. I wish you well.
Thanks Leslie. Sorry to hear you’re in a similar position but I know there are many people going through this. Can I ask – what would you want the government and local authorities to address first and foremost? Is it funding or if/when/how we ‘treat’ the very elderly in the NHS? I don’t have answers but am curious as to what others in our position are thinking. Best wishes to you. TRC
The Reluctant Carer 
I can’t think what best to say..except to send strength and love…and thank you for continuing to share this hard journey with us. Humour is the best armour. After my dad died, expecting to hold his coffin aloft into the church I was blindsided by last minute rather spurious health and safety measures. This resulted in the trundling of dad along the gravel path to the church on a trolley. Much later I realised that dad would have chuckled, but it took me a long time to recognise that.
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Blimey – that’s a great/awful story. I think we’re lucky if the people we care for had a measure of forgiveness and humour – as you say, in time we come to see they would have seen another side to the apparant tragedy and we can too. Thank you for reading and writing in. TRC
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I saw you were asking Leslie about care for the elderly and how we are supported.
I lost my dad to vascular dementia. We were lucky enough to be able to take him home with a paid care package (referred finally as the result of a hospital stay). I don’t know why this particular diagnosis meant that we should benefit from this but we were very grateful, with three care visits a day and night sitting 5 days a week. But it was an awful process watching dad deteriorate, know that he would die where he existed as a shell of his former self, bed bound for five months kept carefully, lovingly, alive by us and the army of carers sent to allow us to do that. We never spoke as a family about the trajectory of this illness or had any counselling about it – we took each terrible step as it came. We all felt terrible guilt that our efforts had prolonged the life of such a beautiful man. For me, I would have liked some early intervention so we could have spoken openly together and planned a path ahead. Perhaps we were a curious anomaly as a family without much emotional intelligence and dad initially propped up with serotonin, and never one to share or want anyone to worry. I wanted him to be able to say goodbye and know us, still know himself, and not to suffer or loose every bit of dignity a person has.
Dignity is the answer.
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I meant of course to say ‘Dignitas”
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Much like other comments…what to say but to admire your writing and send you waves of support (no help at all) ☀️
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Thank you, Ann, Make no mistake, it IS helpful. And much appreciated. TRC
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Having been down a similar path I know how you feel, and even now Dad has gone I feel the pain and frustration still – I wish you luck in trying to get financial support for what feels like an obvious need. We failed several times before it all became too pointless and Dad was so close to the end – the system pushes you back, ‘social care not nursing’ even though he couldn’t stand, move himself, feed himself, clean himself, take his medication, speak, swallow, cough ….. it’s all about the budget not about the need. I wish you and your family well and hope this will end soon for you all
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Thank you, Haymon – your fellowship is appreciated. TRC
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Yet again you are going through exactly what I am going through. My Dad and I both caught covid from a vaccination centre. i got over it in a week, he ended up in hospital for 3 months. When he came home he looked liked he had been marooned on a desert island for 3 months and has lost the use of his legs. Now he is bedbound and has carers 4 times a day and the bills have gone through the roof. Again, the council pay for 6 weeks and then it is up to us. He suffers from urine infections and is basically waiting to die. There seriously needs to be a change in the law. This could go on for months and with no quality of life whatsoever. I feel for you I really do. It is so tough. Your writing is both confessional and inspirational. I wish you well.
LikeLike
Thanks Leslie. Sorry to hear you’re in a similar position but I know there are many people going through this. Can I ask – what would you want the government and local authorities to address first and foremost? Is it funding or if/when/how we ‘treat’ the very elderly in the NHS? I don’t have answers but am curious as to what others in our position are thinking. Best wishes to you. TRC
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