Care homes make me think people never die

[rockrollerpud]

Recently I was given the news that someone I know died suddenly. Classic late seventies, living life totally normally, seemingly slim, fit and healthy, then gone within 24 hours from heart attack. This was surreal to me. And here is why.

I visit a relative in a care home weekly. And for want of better words, I’ve been visiting so long that I honestly feel like some people can’t die. Or at least, their bodies are just designed to trundle on like a diesel engine car with 200,000 miles on the clock.

Most of them are 80-100 years old. Many sit there all day asleep with their mouths open. Many are overweight, have multiple health conditions, yet they just don’t ever change from that. They go on for years/decades.

I have to say, there are far more women than men in the care home.

Quite regularly, I’ll read on here, that someone struggled at home but then went in a care home and only lasted 1-2 years. Yet I see the majority seem to live forever in the care homes.

Before I knew what I know now about elderly disease and decline, I’d always assumed that by the time I got to a care home, I’d be so spent, I’d only last a few years too. But now it’s freaking me out that I, like many others, could spend 15% of my life in one.

Anyone else a long term visitor to a care home and be shocked at this?

I think you may have meant to quote @smallglassbottle 😘

She's the one who is a Christian and an (ex) Nurse.

Cross post! 😘

Also, I agree with you @smallglassbottle xx

I used to find the biggest obstacle to a natural decline and death was the prescribing of antibiotics for chest infections. The breathing in (aspiration) of fluids is common amongst the elderly and those with dementia. This invariably leads to chest infections. I nursed people who were often on courses of antibiotics every few weeks. The infection was never actually cured, just held at bay for a while.

I think this is really important. So often I hear on the media, people saying that better end of life care would prevent the type of problems being described here. But that seems to assume that all end of life suffering can be prevented, with the right care and medication. The reality of so many experiences is that this just can’t be achieved in many, many cases.That seems impossible for some to accept.

Good end of life care can massively alleviate suffering. This is what I meant by large enough doses of pain relief and sedation. In the past, people were pretty much fully sedated via syringe driver and died peacefully. Now, I'm not confident that this happens as doctors refuse to prescribe decent enough doses. You end up constantly having to administer tiny doses of things like oramorph (useless) for breakthrough pain. If the GP isn't on board with palliative care, you have no hope. Most doctors don't want to touch this aspect of care because of Shipman. Relatives are quick to accuse caregivers of causing harm and death. It's easier for them to just prescribe the antibiotics and hope the problem goes away (usually via an emergency visit to hospital). They're quite happy for elderly people to die neglected on an A&E corridor as long as their hands remain clean. The public need to learn to accept death is a natural part of life. They won't though. They've had the usual framework (religion) removed from them and nothing in its place so they're frightened and don't know how to deal with their relatives dying when the time comes. They look for people to blame. Some people can handle it, but many can't.

Thank you for your very thoughtful answers, @smallglassbottle . Apologies for misdirecting my question.

I was present when a grandparent was end of life in early 2000s. I was sat by her bed in the nursing home, and the doctor arrived and basically said, I can give her a smaller or larger dose of morphine. If I give her the larger dose it will mean she’s is in zero pain and a very deep sleep, but it will also mean she’s will likely pass quickly. We all agreed to the larger dose. Her passing was quick, dignified and peaceful. My grandfather, who had seen friends die next to him in the war in terrible circumstances, said, “She had a wonderful death.” And it gave him and us great comfort.

I’m terrified that when it is time for my own DM I’ll be up against a system that won’t let her go in a pain free way.

My mum spent the last 17 months of her life in a care home. Whilst there was no diagnosis of dementia there were certainly signs of it, early stages. She was 95 when she died almost a year ago to the day. I was her only child, with 2 teens of my own. She had some care at home, lived about 100 yards from me, moving there in her early 80s. She moved from hospital to care home after a 3 week stay with Covid, the medics felt she could no longer live alone safely, with her various health conditions. I strongly suspect social services would have had a different opinion. Until then I visited her 4-5 times a day. She didn’t want to live with me and it wouldn’t have worked anyway. It was an awful time, she was miserable and made my life a complete misery, making me sick with the stress of it all. We had a tiny amount of carer and a cleaner though in 5 years she fired several. It was a great relief when she moved to care. Though some distance away, I went 2-3 times a week and hated it as she was unhappy but her life wasn’t that different there as it was at home, all she did was sit and watch tv though claiming she did otherwise (she genuinely believed it). She didn’t take her medication properly, believing the symptoms of her illness were side effects and regularly phoning the pharmacy thinking she overdosed even though I controlled her meds for her. Despite the nurse saying otherwise, she was exactly the same in the care home. So it certainly wasn’t the taking of meds that kept her going or eating in any way. Tbh, I’ve no idea how she kept going so long. She was deemed to have capacity to the end as awful as her health and life was, though I wasn’t always so sure. She gave the impression of being very switched on. You had to know her and the circumstances to know what was really going on. In the end she refused to go back to hospital when offered a transfusion for anaemia and shortly after was on end of life. Even in those last few days she was able to be horrid to me as I wouldn’t do as she asked. I couldn’t it wasn’t safe. It was an awful time.

My nan, her mum, died just short of 86. She had a massive stroke and died 3 weeks later. Until then she lived alone and, though increasingly frail, managed well. Both my mums nans lived until aged 85. So a long lived family. My mum was managing pretty well until about that age. Once she got into her late 80s, was when things unravelled, with a range of health problems causing all kinds of awful feelings. By the time she died, I had no more tears left to cry. I’m not sure it’s relief but she suffered and she made my life miserable. I still haven’t recovered. She gave me more anxiety than either of my children have ever done.

Solidarity to all who are going through this. I sincerely hope that I won’t be like my mum to my kids but who knows what lies ahead. I hope I can prepare myself better for it.

This is exactly my experience. My parents died young of cancer in the 1990’s. I recall the GP coming out and asking how the pain was, my mother said its bad, and he asked if she wanted the strong pain relief, he looked at us both and said you understand you might not wake up and she didn’t. She died peacefully a few hours later.
In contrast an elderly relative, late 90’s died 3 years ago, pretty much screaming in pain and agitation but if she was asleep from pure exhaustion when the district nurse turned up they wouldn’t administer anything, she got nothing except liquid paracetamol. The home would only keep the “good stuff” a week then it was sent away on the unused medicine list, so then you had to wait for the GP to prescribe again. It was a farce. It’s all very well the politicians saying what we need is good palliative care but the reality is the provision is far too patchy for many people.
I’d give quite a bit to get my hands on an Agatha Christie style Cyanide pill such is my desire not to spend several years fading away in a care home!

Sorry to hear everyone's tough experiences. Why has it become like this? Is it really because of Shipman? Do other European countries still treat with morphine like we used to or have they gone the same way as us too? Does anyone know if there are any movements to try to get this changed? It's terrifying reading.

We have Harold Shipman to blame for that I think.

Harold Shipman's "interventions" definitely overstepped boundaries, but in retrospect, we seem to have erred too far in the opposite direction. My personal opinion obviously, but I'd be interested to know if anyone agrees.

I tend to agree.
I think the main problem was that Dr Harold Shipman gained financially from the deaths.

I've been reading this thread - (thank you OP for starting such an important conversation) - and feeling quite haunted by the pain and distress this 'system' we have now is causing so many decent people who don't deserve it. My heart goes out to all of you juggling overwhelming responsibilities. I have heard the desperation in so many voices here and wanted to acknowledge it rather than read and not contribute.
I suppose I have a similar yet different story in that my mother is in a care home but doesn't suffer from dementia. She is just very old now with no major illnesses other than a body that simply doesn't work very well anymore. She was a toxic and malevolent mother, and still is, so I'm eternally grateful that we no longer have to run her life and home for her as it got too much for her after my lovely dad died.
I have seen exactly what others are describing here though and I don't know how we walked into this situation where care homes are playing out this role of determined medical intervention and oversight, whilst these poor people seem often to just be existing in limbo. Not all of course and I really don't mean to cause offence to those whose parents are having a good final chapter.
My mother, and this seems to be the norm now in care homes, has every vaccination going, every preventative measure that can be done is done, blood pressure every single day for instance. She herself has become obsessed with her health, currently she is focused on her hearing and is insisting she is taken to an audiologist to see why her hearing is deteriorating. It seems to pass her by that she is old and this is to be expected in your nineties. Since living there she regularly says "I'm going to live forever!" and she had never spoken like that until she went into the home about four years ago.
You could say she has rediscovered her zest for life, but being in her company contradicts this as she is miserable and disinterested. I think a more likely explanation is that these homes perpetuate the myth that death is to be avoided at all and any cost.
And it is the cost that's the problem with this system. I can't help but agree with others that there is the bottom line of profit which is engineering the drive to preserve life at all costs, even when it's inhumane to do so. But there's another cost too that's even more insiduous, that can't be recompensed, and that's the cost to the family members pressing pause on their own lives, being forced to choose between their children/partners/friends/homelife or their aged relative's latest crisis.
Quite what can be done about it I don't know.

Unfortunately I think Harold Shipman has a part to play in this but I also think that nobody wants to administer something that they may later be hauled over the coals for.

We have gone the American route of playing the blame game and suing for the actions we don’t agree with regardless if it’s in the elderly persons best interest.

Nobody wants to be dragged through the courts and struck off for doing the right thing.
There will always be those relatives who want their loved one kept alive right to the bitter end.
We need a sensible grown up converse about end of life for the elderly and what that looks like regardless of how unpalatable that might be.

There is a much bigger conversation to be had, but from my personal experience, it’s the surge in private equity ownership of care homes who only care about extracting as much money as possible.

They are quite happy to keep a self funding resident going indefinitely, because they pay far more than residents who are funded by the LA. It’s all about the money.

And a small part of care home staff want the easiest route to an easy week, ie antibiotics rather than palliative care, and GPs don’t want to get sued.

https://www.theguardian.com/society/2026/mar/28/the-great-care-home-cash-grab-how-private-equity-turned-vulnerable-elderly-people-into-human-atms

@rockrollerpud This is my take on it too from what I've seen in my mother's care home. She pays just shy of £7,000 a month. This is her fourth year there. (I don't know if the others are self funding or not but there are several residents close to their hundredth birthday).
Her room is not large, the food is poor quality, the staff are not well paid and it seems that every corner is cut to keep costs down whilst constantly hiking up the rates. It's very obvious that it's a money making behemoth.

I often wonder if GPs are also part of this money making merry- go- round.
Certainly my fathers GP is in his care home every week regardless, tinkering with peoples meds and making them selves invisible if you ever request to see them about your relative.
It seems they only wish to deal with the care home manager and not the relations!

Shipman was a bloody psychopath who murdered people with a perfectly good quality of life, and seemed to get away with it for a long time as there was little scrutiny. But there were also doctors who might have 'edged' very old, genuinely sick and declining people with the best of motives. No such thing now, they are all terrified and need to leave a paper trail showing that they have done everything in their power to preserve life.

My granddad died in the late 1980s, he was in hospital with a bad chest and they then discovered he had lung cancer, hopeless then at his age, untreatable and incurable. He was 88. He was there for about six days I think. He was sitting up in bed talking to us on the Tuesday, and on the Thursday evening, my dad got a call to say that he had died. My dad was very matter of fact about it and said, 'the doctor probably gave him something.' Well, if so, that doctor was committing a mercy killing, as he didn't want an old man to die slowly of cancer.

You dont think your granddad should have been given the choice then @AInightingale? Or do you think he was?

I really don't know the answer to that. I can only answer for myself, which would be that I'd be grateful if I was almost 90, hopelessly sick and a doctor made that decision for me. Lung cancer is a horrendous way to go.

He had lung cancer. Who knows how advanced it was but sounds like he was terminal so what do you think a different outcome would have been?
A few more days/weeks of pain, struggling to breathe and the panic that goes with that?
So what was the choice he 'should' have been given? Maybe he had nothing from the GP and he just died from his illness?

@Hallamule , genuinely, what would have been the point of asking an 88 year old person diagnosed with a terminal and inoperable disease their treatment preference? You will die, as do we all, but do you prefer to die in a week or in seven days? With or without palliative relief are the only options surely?

@rockrollerpud so your mum's care over four years, at £84k per annum has cost £336k to date. DH's mum's care cost a similar amount, but a few years ago, so slightly lower figures but the same ratio of house value to care costs.

I am happy that DMIL didn't fall into the grasp of a private equity owned home, and that she was well and kindly looked after. But I am not telling stories when I say that DMIL would have preferred to make her exit sooner and at a time and place of her choice.