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?

Private ones maybe. Is there any financial incentive for keeping people alive in L run homes when there are long waiting lists?

I agree, I’m a nurse and have seen people on deaths door go on for another 5 years once they’re moved into a residential or nursing home!

My friend has an uncle who is bedbound that she has been visiting weekly for years in a nursing home, he just keeps going.

My mother had a living death for four years in an NH and I agree, it seemed to me that it would never end. It did, of course, eventually but she was 91. Her mother lived to 97.

TBh DM was as fit as they come until her stroke - super active, ate well etc. I do weights as well and try to get fit but there are things you can’t control. I have an advanced directive and PoA in place but assisted dying will never be put in place for people with dementia. I just wish that it wasn’t quite so hard to fight over treatment for people; it shouldn’t be a struggle.

They’re not all equal.

Id rather end up in a good care home than struggle at home on my own.

I'd be shocked to see anything like this in Surrey - in my experience, the care homes' deal (unknown to relatives) is that they take them for a couple of years and then take steps to finish them off, usually via passive euthanasia - dehydration - which isn't illegal. The family isn't notified about this - and in the last decade you'd have read of stories in the tabloids about how they can get barred from the care home for 'abuse and intimidation' - what's happened is they've twigged their parent is being cared for and have started to complain/apply pressure. The home is basically subject to the whims of the Council - they can be blacklisted if they don't comply - so consult with the Council's Social Services to get the family defamed and sidelined; it is a very sinister state of affairs.

I do read about relatives who complain that the whole prolonging of life is futile and pointless and each to their own; every family does reach that point (if they're lucky and it's not a sudden death) but I never saw anything like that in my parent's experience. Once they satisfy the check list (dementia, none too talkative, incurable illness like Parkinson's, incontinent, needs assisting with eating etc) they're on the list, no matter if otherwise they seem to enjoy life, enjoy their food, enjoy being taken out for the day etc You can argue against their being DNR - at Epsom General Hospital we found they cheerfully overruled it and Dad was dead in three days. Six months earlier we'd had a massive show down in Acute Ward to get him out, the matron got her mates to surround us, one of them filming it on their mobile, to provoke us. Tried every trick in the book. This was in 2023.

There is a book called Being Mortal written by an American of Indian descent, Gawande I think his name is, which deals with the very issue. Written 10 years ago though, before the cuts in adult social care came in, and it's for the American market.

It seems to be a money thing; some care homes take the shilling to keep residents alive (can be £2K a week now I guess), others take the shilling to finish them off, with covert State backing. In areas like Surrey there's no shortage of potential customers because of the demographics, you just have to keep it ticking along, keep those rooms filled.

Even if you have been very clear with the homes about your wish not to treat, filled in your Respect form, they will still send you off to hospital at the drop of a hat. It’s a disgrace.

The other problem is that the next generation (50s/60s) are so swamped in caring for their elderly relatives and often still working, still got children at home, that they don't have time for their own exercise regime any more. I was doing really well with exercise till a year ago as were my elderly parents in their 80s who were fully independent. Then DF was badly injured in a fall (passed out and suffered a head injury) and after several
months in hospital has ended up in a home. DM hasn't coped at all without him and despite being physically fit as a fiddle is developing what looks like dementia. So a huge amount of my time has been taken over because as well as visiting weekly (used to be monthly) I have suddenly had to take on all their admin and mum's house maintenance as well as navigating the care system for Dad. This could go on for years, I have ND adult children at home, no intention of retiring for a few more years, DH is also caring for a relative as well as working FT. I'm trying with the exercise but that and diet have definitely slipped.

Many LA care homes are run by private companies.

Crass question, but how is 18 years affordable for anyone, and what happens if the money runs out?

There aren’t really LA care homes any more are there? Quite a lot of charity ones but as far as I know all were outsourced and are privately run, they may or may not take LA-funded residents who at least put bums on seats.

We were self-funding and never knew of any local authority-run care homes in Surrey, we were paying over a grand a week but it became clear (after making an SAR to Surrey council) that many care homes had a cosy deal going on with the Council's adult safeguarding teams, they were the ones pulling the strings and fitting us up. 'Would you like to get your mother back to the family home?' was one repeated trick; they had no intention of allowing that.

These are the reason my wife and I have decided that neither of us will ever go into a care home. We are both 79 and will live at home for the rest of our lives.

What’s the point in living to 90 if the last 5 years are incapacitated in a care home.

Agreed...youngest is 2 and I am back at the gym trying to retain muscle and maintain some degree of my garbage flexibility

My aunts are all going to live until 90 and 20-25 YEARS of that is sat on their sofa watching homes under the hammer

🫠🫠🫠🫠
Its terrifying- they are trapped in their own bodies for decades.

Dhs uncle was in a home for 4 years. Luckily, he was quite content. At 89, he died quite suddenly after a stroke.
The home cleared out his room within 24 hours and stuffed his belongings in black bin bags. We have no idea if anything valuable was taken.
His dad's cousin has been in a home for around 7 years now. Pretty much never leaves the bedroom/bed. Sleeps most of the time. Doesn't wake up for visits. Liquid diet. It's grim.
He's in and out of hospital very regularly even though there's nothing they can do after his 2 x major strokes and heart attack some years ago.
I'm afraid I see NHs as money makers for the owners. Keeping folk alive - if you can calling living - long beyond their natural life span.

I will refuse the 'flu jab when the time comes. I do not understand this desire to prolong life.

I visit a lady in a home with dementia, she is scared, know no one, has no quality of life and yet they keep giving her vaccinations and medication as if she will recover.

As a society we need to have a discussion about this, it is unaffordable and most importantly unfair to continue to do this

@SingedSoul fundamentally this is a much richer country than the media like to tell us. That’s why international private equity bought heavily into the UK residential home sector.

At today’s prices say £80k per year nursing home fees x 18 years is 1.4 million. (Obviously over 18 years the prices will change hugely). Maybe 40k a year pension income (large private pension plus state pension) so only half of it has to be met by capital; lots of older people own a house worth 700 - 1 million, or at least it was worth that until recently; particularly if they bought in leafy bits of the Home Counties or in London.

If the money does run out there is state provision. But the posher homes won’t take you if you don’t have 3 years’ fees in cash in the bank ( not an unsold house) which shows how long they think you will last.

My mum also had a DNAR and I will have one myself.

I have literally been having these thoughts recently. My df recently died of cancer in his late 70’s but had been fit and healthy up to the last four weeks . Whilst it is devastating that he has gone, the alternative of years in a care home and like other pp have said- doing toddler type activities is not something he would have wanted for himself, nor us him. Plus the thousands of pounds per week for the pleasure.
Without question, all the people i have known die have been healthy, happy and active. Non smokers and drinkers etc. I can’t help but feel like that those that drink and smoke etc seem to live the longest. Sure isn’t the same everywhere but for me, I’m going to enjoy life doing as I please as I don’t think the outcome will be much different in the end and any of us could be gone tomorrow .

Who will support you if you can no longer manage without help?

My friends’ dad was in a home. He had dementia and didn’t know night from day. He was relentlessly miserable. Everything time he got a cold or a cough, the doctor would see him, usually prescribing something to make him better. She eventually had to put something in place to stop him being prescribed antibiotics and it was a blessed relief to all when a chest infection saw him off.

@OldJohn I don’t think anybody wants to go into a nursing home. Sometimes the alternatives are worse, or require things that actually you might not choose. I know a couple of brothers my age who are spending their 50s working very flexible part time jobs to try and keep their 80+ parents in their home (they are also getting 4 care visits a day each), and although I salute the brothers for it, they are impoverishing themselves and exhausting themselves to do it. I would never say never.

How on Earth can you guarantee that? Unless you have a lot of money in the bank to pay for 24 hour home care if you need it (and sometimes that’s not enough.)

My mother insisted she never wanted to go into one. Luckily she was able to live out her later years with me. Although she had dementia she remained with me (with the help of private carers) until she went in her sleep. My elderly neighbour refuses to put his wife in a care home and looks after her himself (with help from family/carers).

When my mum was admitted to a care home she was 91. She had dementia but it was her mobility issues that took her there really. She was incredibly frail and she had a some episodes where we were all called as she wasn’t expected to last the night. For these, we insisted (and we really had to insist) that she did not go to hospital. The next morning she was having a cup of tea. It was very stressful mentally preparing for her demise only to face another unknown length of time before the next time. She was completely unaware by this stage. She was just a shell, and she would have hated to see herself that way. She lived to 96 so five years in the home - I thought she would never die. Sounds awful but she just seemed determined not to leave. She had not been out of bed (literally) for the last four years of her life and had no medication for underlying health issues - I don’t know how she did it. And yes it terrifies me, I’m adopted so don’t necessarily have these genes but still.

I have an advanced directive, and have made it clear to DC, that if I end up in a home with Alzheimer’s, like both DGM and currently DF, I don’t want antibiotics for UTI’s, pneumonia or whatever. You wouldn’t let an animal live for so long suffering the way some poor people do, bed bound, dribbling, doubly incontinent, often frightened or bewildered with no quality of life. It’s appalling.
Unfortunately both DGMs lived until mid 90’s, DF has been in a dementia care home for 5 years already. I’m hoping I have a much shorter lifespan rather than end up with the same fate.