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?

Yeah this. ^ This is why I (and many people I have spoken to) have said if we are diagnosed with something like cancer (when we are 65+) and we are told we are going to need treatment that will affect our immune system, and make us quite ill, we won't be having it. Some people I know say they will let nature take its course, and will refuse to have bits cut off them/out of them, and have chemicals pumped into them, making their quality of life rubbish, just to die a couple of years later anyway.

Well it’s quite clear which country I live in because I referenced the NHS. And if you want to get technical about it, maxillofacial surgery is not “basic healthcare”. And I would argue that performing invasive surgery on a very elderly person to treat pre-cancerous lesions is not treating them with respect. But great attempt at race baiting.

That poster seems to be having a lot of issues with grown ups having a cogent discussion about a topical issue.

Feels like there are threads on here quite often that seems to suggest that once there is any decline at all in an older person their life is not worth living and death is preferable. I would suggest that when people are old themselves they might feel quite differently. I find the current trend towards "just die already" a bit disturbing.

I would definitely refuse treatment for cancer as many of the so called treatments are brutal and I prefer quality of life over quantity. I don't have any family so no one would be impacted by my death. My Mum died of Alzheimer's so not living as long might help avoid that.

I’m an elderly nurse and genuinely do see this. We treat absoloutely everything really (apart from procedures with not so great odds) until there’s the point where the body is just giving in. Even cannulation which a lot of people elderly find awful as their veins are so frail and thin and get told by many patients they don’t want anymore antibiotics or they don’t want the treatment but their children would be upset if they didn’t. Also dnar’s being a medical decision but so many families being against them when people truly don’t want to live and go through it anymore. I love the job and the people but I’d say around 80% of my shifts I have elderly people tell me they’ve had enough and pray each day that they won’t wake up anymore. I really want to specialise in palliative care and keeping people comfortable and it’s genuinely heartbreaking sometimes seeing people pushed so far that they eventually die having to undergo so many treatments that they didn’t particularly want or having a slightly uncomfortable death when they could have died comfortably and in dignity without going through a lot first.

I genuinely don’t want to upset anyone by saying these things but as a nurse I feel so conflicted sometimes as my main reason for doing the job is to care for people, but often the medicalisation of treating and treating doesn’t always feel caring and dignified. We also seem to treat people to the point of being able to be discharged and then they just bounce back in again, often seeing the same patients again within weeks. We do seem to be getting better with family and patients at adding more wishes to respect forms when patients don’t want readmission to hospital and only want anything doing that can be done in the community, but a lot of care homes still seem to call ambulances despite this. It’s actually heartbreaking when you open a patients notes and see not for readmission to hospital as per patients wishes and yet they’re in hospital. Many patients reasoning is because they don’t want to die in hospital and often they do against their wishes. As I say, I have so much respect for the elderly and love them, but it’s so conflicting at times

I would have palliative treatment, like radiotherapy to shrink a tumour to stave off breathing problems or bowel blockages. I personally wouldn’t rule out any individual treatment, it’s the overall approach that I want taken notice of.

But then there are people like MIL and her father. Their bodies got frail, they couldn't manage at home and were in care homes but apart from mobility/toileting their brains were fine and they could sit up, feed themselves, hold an interesting conversation ... He died at over 100, she died at 101 during Covid (not because of it - I think she gave up on life having been restricted to her room for 6 months and allowed no visitors. The separation was very distressing for DH too.)

This is not what people are saying at all. We are merely exploring the suffering which can result if someone is forced to remain alive artificially. Some things are worse than death. If you choose to remain alive whilst suffering ongoing pain, discomfort, indignity, fear, depression, loneliness and boredom then you crack on. Not everyone feels the same way.

That's a very cruel post. The anguish and distress from those of watching our love ones suffer and struggling with our caring burden does not merit your judgemental nastiness

These are peoples lives experiences, nothing devilish about it. Clearly you have been fortunate not to have been subjected to such suffering.

I don't think it's that at all. No one is saying kill off elderly people the minute they turn 80. No one wants their parent to die and most of us want them to be around as long as possible. But people want their parents to have a good quality of life. Caring for loved ones who has advanced dementia for years on end can cause huge amounts of trauma to families. Seeing parents spends years with no quality of life is hugely distressing.

I work in Older adult social work. The system is completely broken. We have conversations like the one on this thread every but absolutely no one know what the answer is. I'm in Scotland so things are slightly different in that free personal care is provided (providing you meet the criteria) but still a lot of the problems as elsewhere. I think conversations like this are really important.

People are REALLY not saying this!

Exactly this. I would rather live for 3-4 years as I am, and just have palliative care/painkillers for the past 3-4 months, than live 5-6 years, with the majority of that time dizzy, nauseous, hair falling out, vomiting, having headaches, being housebound, unable to drive or socialise or go out anywhere, and going to hospital 2-3 times a week, along with needing care almost full time.

@DarkLion (22.39 May 6 2026.)

Thank you for your post, and I do get you.

I know a number of elderly people (well, over 70 actually, and even a few a bit younger) who are constantly at medical appointments, in and out of hospital, the doctors, and various clinics, having blood tests, urine and poo tests, and vaccinations for covid, shingles, pneumonia, the works... As a pp said, their diary over the months is littered with NHS appointments.

One lady I know who is 63, said she recently had a slightly low iron reading, and the GP referred her to a couple of specialists, and she has had to go to specialist nurses, and consultants, and x-ray and CT scan appointments, along with further blood tests, colo-rectal examination, and a camera up her bum because she had a tiny fraction of blood in her poo. (Multiple visits to the hospital that is a 50 mile round trip,) and hours of waiting around.

All turned out to be nothing, and now the GP are calling her up again, because they're still 'not happy' at her lower than average iron. It's literally just 5% below what it should be, yet they are still mithering her. They said they have to be 'super vigilant' about the over 60s! She said 'why can't they just leave me the fuck alone?'

She feels like they're trying to find something wrong with her. Someone said on here the other week 'if feels like they want to make a relatively healthy person into a patient.' And yes, it does feel like they do this. Someone else said it's to justify their budget. My friend says she doesn't want more 'tests' but she's afraid if she refuses, they will refuse the (4 or 5) meds she has been on for a decade or more for an ongoing chronic illness.

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My dh has chronically low iron and they seem to be unable to comprehend that it's not bowel cancer. He's had so many tests yet they won't give him the iron transfusion that he badly needs.

I conceal my illnesses from them and generally don't seek help (when I do they're not interested) and will hopefully go out quickly at some point.

The NHS seem incapable of individualising care or thinking things through. It's a patriarchal juggernaut when it comes to how it treats people.

MIL has been in a dementia care home for nearly 2 years self funded. She has zero quality of life and has become infirm. They are keeping her alive with the best medical care possible but for what end - purely to pay wages and the care home. Its horrendous. FIL will also end up in a home but he is currently managing with our help in assisted living. They both think she is in hospital - if they only knew.

I agree with the NHS wanting to find something wrong with you particularly when you get to 60. I’ve never had any kind of screening test and have opted out them all. I simply wouldn’t have the patience or time to be going backwards and forth to hospital and waiting around. Any idiot staff who called me sweetheart would live to regret it as well. I don’t have vaccines either. My husband got a really stern and intimidating letter when he declined bowel cancer screening two years ago.

Two years ago my 83 year old neighbour was screened for prostate cancer and advised to have radiotherapy and hormone therapy. The treatment had left him with bowel and bladder problems and he’s gone from being active and outgoing to housebound. Any trips have to be planned around toilets and wearing pads.

Another friend in his 60s was also persuaded to have prostate cancer screening and they found something so he’s now undergoing radiotherapy and can probably look forward to 12-24 months of feeling drained and exhausted and other long term problems.

Yes, that is their go-to assumption isn't it? 'Tiny bit of blood in poo = MUST be bowel cancer!'

My friend (in her early-mid 60s) had a tiny bit of blood in her poo, no symptoms of anything, no bloating or cramps, no fatigue, no nausea, no pain or aches, no weight loss, normal bowel movements, felt fine. Yet as soon as the teeny tiny sample of blood appeared in her poo, the GP phoned and said 'hello darling, it's Doctor Smith here, the results of your stool test has come back, and it had blood in it, so I'm referring to the colorectal clinic, and they will contact you soon, and you'll have a camera up your bum! They have to do this, as blood in the poo is a sign of bowel cancer!'

They phoned her at 5.55pm on a Friday, just before a bank holiday Monday weekend, and she worried herself sick all over that long weekend, and until the clinic phoned her 5 days later to book her in! There are a number of reasons for blood in the poo, (anal fissure, straining a bit to poo, a small bleeding pile, the meds she is on, IBS, Diverticulosis (the presence of small, harmless pouches (diverticula) in the colon wall, common with age and often asymptomatix,) certain foods like Beetroot, black pudding, blueberries etc, and spicy foods/foods that contain chillis... )

Yet straight away, their minds and assumptions went to bowel cancer! They didn't have to tell her it could be this. She said she feels as if they revel in telling people the worst case scenario- it's like (as I said earlier) they want people to be ill. It's so odd. If this is true, I do wonder why...

And here they are again, wanting her to do more tests... For what? What tests? As she said, she wishes they would leave her alone.

They are making money from keeping our loved alive with zero quality of life. My mother would never have wanted this

@AgitatedGoose THAT is the kind of thing I am talking about. This weird desperation to force people over 60 into scans and tests and screenings, and to have things shoved up their arse and down their throat, and to have multiple vaccinations! Often when there is NOTHING wrong with them, no symptoms of anything and no pain or anything. It really is like they are trying to find things.

It's like at 59, you're a healthy spring chicken full of life, youth, and vitality, and as soon as you hit 60, you're a knackered old codger! 'We have to be extra vigilant when people are over 60' one doctor said... Why? 60 isn't that old. Tests and screenings and vaccinations galore, and being told off like a naughty schoolchild if you refuse.

I know some people over 60 who have refused prostate exams, bowel screening, breast-screening, cervical smears, and other 'tests' and 'screenings.....'

One woman I know has not had a cervical smear since she was 53. She is now 61 and they are still badgering her to have one, and the GP is 'annoyed' that she has refused it, and also the bowel screening test, and breast screening, AND vaccinations for shingles and flu. Why do they get so annoyed when you don't comply? 🤔

I know another woman who had blood tests as she was having runny stools and stomach cramps, and it turned out she had a gluten allergy. (Coeliac disease.) The GP said she needs to remove gluten from her diet - obvs! But they 'referred her' to a Consultant ... She travelled 40 miles to the hospital the appointment was at, and wasn't seen until an HOUR after her appointment. As soon as she sat down in front of him, he said 'right you have coeliac disease, first thing I will do is book you in for a colonoscopy (camera up the bum,) and also a camera down your throat so we can examine you inside.'

She said 'what? Why? Why do I need that doing? I have a gluten allergy, I just need to rethink how I eat and remove gluten from my diet.' He said 'yes but we need to see what's going on in there and if you need biopsies.'

tl;dr, she refused, and said she's having NOTHING shoved in her back passage or down her throat into her stomach. He said 'oh right then, well I guess this consultation is over.'

Most pointless waste of 3 and a half hours of her life (2 and a half hour round trip, and an hour in there, just to spend 3 minutes talking to this 'Consultant!') I bet he got paid £300 for that. For those 3 minutes he saw her and did fuck-all to help her.

Like you - @AgitatedGoose and many others on here, I have no wish or desire to be spending half my waking hours travelling to hospitals, and wasting multiple hours each time, when there's a 95% likelihood that there is nothing wrong with me.

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They keep bombarding me with screening stuff. The bowel kit goes straight in the bin. The breast screening appointments they make, I didn't ask for them and don't attend. No cervical screening since I was in my 40s. The only thing I agree to is an annual blood test and I do my own BP monitoring. I'm not interested in anything else. If I get cancer I'll decide at the time whether I'll have treatment. I carry the gene for late onset alzheimers so need to make sure I don't live too long anyway.

I have upper GI, liver and pancreas problems (likely related to nd, but that's not widely recognised, so trying to explain it to them is pointless) and the BP meds gave me a duodenal ulcer which started bleeding just before Christmas. The GP was going mad because I refused to go to A&E. I told her if it perforated at least I wouldn't have to cook Christmas dinner 😂 it eventually settled down and I'm still here. I've had half a dozen scans for gallstones which they never find 🙄 I just want to be left alone now. I can treat most stuff at home and would know if I was ill. All this endless screening throws up false positives and my local hospital breast screening service is currently being investigated for causing harm to patients (wtaf?!). Yeah, definitely won't be going there.

Another thing to consider is that when people get to a certain point in their brain disease journey they lack capacity to makes links between things.

My relative in a care home is deemed to have mental capacity and supposedly fully understands what they have chosen for their Respect form. I know there is all the debate over mental capacity one minute and not the next blah blah blah but my relative has made continual batshit and risky decisions for the last few years. Really crazy dangerous stuff.

They bloody well do not understand the ramifications of their choices, despite what the care home insist . For several years before their two brain diseases got really bad, they knowingly chose not to have any more flu or Covid vaccines themselves so as to not prolong an already painful and miserable existence. Now they are less cognitively with it and in a care home, they’ve suddenly decided they want them again. They’ve chosen full resuscitation and hospital treatment for everything. Yet they continually tell me they want to die before they end up doubly incontinent, bedridden and in a hoist. But they can’t make the links between the choices they’ve made on their Respect form and the likelihood of those choices preventing natural death. 🤦‍♀️

WOW, thanks for all that @smallglassbottle ! And I am glad you're doing well! I agree about the false positives too, and for this reason, I will never go for a breastscreening. No cancer in my family at all, and no reason to think I will get it. (I know it has to start somewhere, but I am a low risk, don't smoke, not overweight - much - and don't drink alcohol.) Very active, go for daily walks and walk 35 miles a week during them. Do lots of gardening, get lots of fresh air.

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It feels as if all this screening, treating and medicating is a long-term experiment. The ultimate goal is to greatly extend healthy lifespan but this may not be achieved until several generations or more into the future (if at all).
Meanwhile we are the lab rats suffering the adverse consequences of all this meddling.