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?

Sorry, that is going too far and I’ve reported my own post for deletion.

I have found this thread very thought provoking. My aunt 96 has dementia and has been in a care home for a couple of years. She’s just skin and bone now and can’t stand etc. thankfully she isn’t getting distressed yet. We have POA for healthcare and the home and we have agreed that she doesn’t want to go to hospital for treatment if required. She had also expressed that to us before she lost the ability to. She keeps getting chest infections and she gets given antibiotics etc and she rallies. I guess then that brings into question would she want the antibiotics, should we continue to give permission for those. It’s so difficult. I empathise with all of you in the same position

Well, the chest infection untreated would quickly turn to pneumonia @Youmeanyouvelostyourkey and a very thin frail person of 96 would have little ability to fight it off. Antibiotics are keeping so many old people alive to 'enjoy' another year or so of life. The question is would the home/GP continue to provide these in the absence of any kind of directive, either health POA or something she'd prepared herself. It's such a grey area with no kind of consistency.
Edited as I see you do have poa for health. You have to think about what she would have wanted. Does she have any quality of life or is it just slow decline. 96 is a very long life.

This is true too.

Oh goodness I’m so sorry, your poor mum and poor you. i am also terrified for my mum with dementia when I read this. No wonder people fear getting dementia more than cancer these days. Bless our mums x

God this is utter barbaric isn't it. Your poor mum. And poor you, witnessing it all and the emotional roller coaster you must be feeling whenever you get a call. 💐

Barbaric is the right word elderly care in the country has gone very very wrong. At every step there's such kindness and so much support to ensure longevity but quality of life has been completely forgotten.

Why have doctors become so terrified of death and a natural decline? Frankly I'm more scared at the prospect of being preserved in this ghastly twilight state for years on end.

I agree.

For a while now, I’ve been thinking about whether I’d rather be like my aunt who died at 60 3 months after the diagnosis of an aggressive cancer or like my father who continues to exist with zero quality of life at 92 - unable to move, speak or feed himself. His decline started at 80 and he’s been in his current pitiful state for 4 years and in a pretty bad way for about 5 years before that.

If I had to choose between going like my aunt at 60 or being like my father who had an extra 20 years of good life followed by 12+ of dementia, I’d choose my aunt’s fate. And I say that as a 58 year old.

My DM though, doesn’t see my DF the same way. She has been in denial of his illness from the start and as she has POA she continues to ensure he is fed and hydrated and given antibiotics whenever he has any infection.

I agree with you but countries measure their worth in part by life expectancy.

No one who does this gives any thought to quality of life, just how long people can be kept alive for. It's seen as 'progress' 🙄

If I had to choose between going like my aunt at 60 or being like my father who had an extra 20 years of good life followed by 12+ of dementia, I’d choose my aunt’s fate. And I say that as a 58 year old.

Same. I'm also in my 50s.

I don’t think they are scared.

I think:

1 They are wary of being sued by SOME family members, who are hell bent on extending the suffering of their relative, and want every treatment possible, for as long as possible.

2 They are overworked and stressed, and box ticking from one week to the next, living in the short term moment rather than the long term interest of the patient. It’s far easier/less stressful, to tick the box to give antibiotics, than it is to start end of life palliative care.

3 Care homes like the money. It’s hassle to do a changeover when a resident dies. Yes, they’ll probably fill the room quite quickly, but it’s still admin and hassle. So they are passively happy with extending suffering by partaking in the relentless, never ending medications and treatment. Palliative care at care homes is a harder time for them, takes more staff. They box tick like the GPs.

4 Care staff, particularly on shift through the night, are often on minimum staff numbers. They individually panic and call ambulances because they are not prepared for or equipped to deal with, some of the understandably scary medical situations they are confronted with. Then the paramedics have no option but to hook up a person to intravenous antibiotics etc. The person gets admitted to hospital and the system spits them back out to the care home a few days later. Only for the cycle to repeat again and again.

Yes, I agree. It's inane.

Researchers do look at Health Quality of Life (HQOL) not just length.

It's worth a dive into the internet to find out more but here's a brief copy n paste paragraph to get you started - they use social engagement with family and community alongside the more predictable metrics.

DH and I are aiming to max the QALYS before switching to refuse all additional vaccines, heart treatments, daily pills, etc.

HQOL’s importance, especially in an aging society, is in determining quality-adjusted life years (QALYs), which measure QOL as a person’s age increases. This measure emphasizes living in health and independently instead of just the number of years added to a person’s life. Overall health is not just the absence of illness but includes ensuring that life’s meaning and richness continue with advancing age.

Good idea

In my experience with my grandmother in a care home, there seemed no limit to their attempts to prolong life. I got a call once to ask consent for my grandmother to start receiving nutritional supplements as she had lost 5lb. I can’t even fathom why they were weighing an overweight 89yr old woman with advanced dementia. About 12-months later when she had also lost the ability to walk, one of the new staff members forgot to put her bedrail back up. She fell and died from the head injury 2 days later. I had a few people ask if I was going to sue the care home. It was mind boggling, I’d sooner give that staff member a gift. Their mistake was actually such a blessing. I loved my grandmother deeply, but without that mistake, she could still be in the same position 4 years later.

I had a few people ask if I was going to sue the care home. Which is part of the reason care homes have to demonstrate they are preserving life at all costs - they have no way of knowing what the attitude of the relative may be when the resident dies.

There was an old lady in a care home in Belfast who suffered from 'pica' and the staff had their work cut out trying to keep her safe. Eventually she managed to get a latex glove which had been discarded in her bin, chewed and swallowed it, and died. All awful, but there was an enquiry into the incident with staff having to give evidence, I felt really sorry for them all. A person whose mental health has deteriorated so badly has very little quality of life, yet it was treated like a 'preventable tragedy'.

That was an awful way to end her life,though

Do you have POA? Just wondering if you can get the care home to call you instead of an ambulance next time, you go there right away and make the decision not to call one. That's what she needs now, someone to sit by her side and hold her hand while she passes. Not more antibiotics etc. poor lady.

Why? I've fallen out of bed before, it didn't hurt much. If it gave her a head injury bad enough to kill her, perhaps she was unconscious the last two days of life. What's so bad about that? She had advanced dementia. No way of dying is actually nice. Two days after an accident that frees her from living with advanced dementia doesn't seem so bad to me, as far as dying goes.

No my parents both refused to give POA as they were determined to die in their own home and they moved to Norfolk years ago leaving me and my sister on the South coast so 5 hour drive to get to her. To be clear I don't blame the care home/go/ambulance/hospital it's the system at fault not the individual parts of it

Oh gosh I am loving this now with my mum. Her quality of life is terrible and the last uti she had made her totally off her bloody rocker. It was an awful visit where she thought I was a murderer and she was just so aggressive despite basically having been bed bound for nearly a year now. There are absolutely fates worse than death and I’d be relieved if she had a massive heart attack. I honestly don’t know how she’s actually still alive tbh as by all rights she should have already died. The thought of her living like this for multiple years is much more devastating to me than death would be.

Never experienced anything like this in any Surrey care home over seven years until my mother's death in 2017.

There's an organisation called Families Against Involuntary Medical Euthanasia (FAIME) if anyone's interested.

Yes, but this relates to a failure to take adequate and reasonable precautions to ensure a resident's safety. That's negligence and they should be held to account for that. Not necessarily sued, but hard questions should be asked and I would expect them to be reported to whoever it is that has oversight in that area.