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?

Totally totally agree.

I work in a hospital and frequently see older people being wheeled up and down the corridors like the living dead.

It absolutely changed the way I live my life. I lift weights 3 x a week. I get my cardio in. But most importantly I have an advanced directive which clearly lays out my wishes.

It is usually the family pushing for treatment for granny who they insist was “fine” last week.

Ill take a quick death 10 years earlier rather than wasting away in a bed for the sake of “life at all costs”

I agree. In my youth I worked in a few and I found them quite depressing, difficult places.

As a society we really need to start letting older people die with dignity rather than keeping them going for years with no quality of life, often confused and frightened.

I suspect its because someone, somewhere is making money from the present situation eg drug companies, care homes etc.

I'm not sure what the answer is because the flip side is being accused of wanting to kill people/play God etc and I can see how some people would exploit withdrawal of care.

Honestly, by the time some of us get to old age we'll be lucky if state funded care homes exist.

I worked in care homes for a long time and they do indeed force people to remain alive until their last breath is wrung out of them. It's utterly dismal and very depressing. They're given endless courses of antibiotics to deal with endless chest infections and uti's. They're fed liquidised food/thickened fluids when they can't chew anymore to avoid choking and aspiration. Spending their time stuck in front of a blaring TV with media slop and loud, obnoxious people on what passes for TV programmes now. If they're really unlucky, Magic fm might be on really loud at the same time for the benefit of the care assistants. Pain relief is under prescribed and they'll only get it if the nurse can be bothered to administer it or knows how to conduct the drugs round correctly. Morphine, if it's prescribed, needs two to check out and sign for, so some staff will only give paracetamol to save themselves the work. So many sad and horrible stories I have.

I have an Advance Directive prohibiting artificial feeding, repeated courses of antibiotics and active treatment in the event of collapse, major accident, terminal illness or dementia. I still have nightmares about working in the care homes and I've been out for seven years.

I agree. My grandma isn’t in a home but she lives with a relative but she’s been in a bed for about 6 years. She’s in her 90s. She has no quality of life and neither does the relative caring for her. I don’t have the best relationship with her so I sound quite harsh when I say this but I genuinely believe it would be better for her if she were to die now.

Physical fitness isn’t much help if you get dementia.

Perhaps you don't remember that just living was much more physical, most jobs were much less sedentary and more physical, walking to do the shopping and carrying it home, clothes washing (primitive washing machines) and cleaning, few household gadgets, growing your own vegetables. Going to the gym seemed like a ridiculous waste of time and money when you were already exhausted after a hard days work and chores.

Our parents have given us power of attorney over them - they have made it clear that if they have dementia they do not want any attempts to prolong their lives medically.

That not harsh, I understand. I remember feeling exactly the same about my auntie who seemed to live forever with vascular dementia in a care home. She was at least mobile but her death was a relief for all imo.

I hope I go fast, I’m hoping for a heart attack or stroke in mid - late 80’s with an amazing life until that point, but I’m quite aware we don’t get what we wish for often . My mil just failed to wake up one morning in her own bed though was riddled with arthritis and other mobility issues though has full capacity. Not to wake up is definitely the way to go, shocking for the family on the day but even 4 weeks out at the funeral they were so at peace and pleased that her end was so good, you can’t hope for anything more .

My gran lasted years in a care home. For at least the last 5 years she just wanted to die. Even the doctor knew this but there was nothing wrong with her. She eventually just used to sit in a chair all day not reading, not watching TV just sitting. Her fingers ended up fusing and she had no conversation.
She was on bed care the last 2 years and sad as it was when she died it was actually a relief in some ways. You wouldn't have let an animal suffer the way she did 😢
My granddad on the other hand who was still living at home,was ill one morning and died before lunchtime. That was also sad but after seeing the way my gran suffered it was a much better way to go.

I think semi-assisted living facilities such as retirement apartment complexes deserve a mention as well. My grandmother lived in one for nearly 10 years. She had a nurse check up on her twice a day but she lived independently.

There was the option of a restaurant but she mostly cooked for herself and lived independently.
Her little apartment - one large room, one separate kitchen and a shower / loo - was also built with lots of adaptive aids (especially the loo and shower). She even had her own tiny flower garden with pots etc.

She had a good life there.

The amount of support she received also meant that she didn’t need to spend more than the last 1.5 years in a care home (when her dementia had advanced to a state where she needed a closed facility).

Well, you can wish but it may not come as you hoped. My mum hoped to just die in her sleep but when she was 86 she fell and broke her hip.

She was already widowed for 17 years then, she never drove so walked everywhere, each day unless the weather was truely awful.

She is now in a care home as she is not able to gain full mobiliy and there was no way her rental flat could have been adjusted and no carer/assisted living would have be possible.

With stubborness, iron will and plenty of physio she got out of the wheelchair and manages 80% with a rollator walker. She may get the odd cold but otherwise is healthy as a horse.

She is now 88 and I am sure she can go for several more years. She actually looks and behaves younger and while she would have hoped for a different life she adjusted, keeps sharp with newspapers and TV, reads complex books, does crosswords.

Are there cases in her care home like you descriped - yes but some for some people it is a necessity and no exercise and weightlifting can help if you break a bone with 86.

They still need an Advance Directive. Some doctors who lack the wit or wisdom (and who are covering their arses) will push for active treatment regardless of what relatives want, even with an LPA for health. Things went mad after Shipman and now almost every elderly person's death is regarded as a suspicious disaster to be avoided at all costs.

"Before", there were far fewer elderly people at all. They just didn't live much past retirement and most familial caring was short term. It's not feasible to have ten/fifteen years familial caring especially now that retirement age is close to 70. That previous model now doesn't apply.

We're still at the point of finding our feet re large scale elderly care. This is the first generation where people have lived so long, and they are doing so after decades of falling birthrates.

We've never had such demographics previously and we won't again - although the birthrate is still falling, so we'll continue to skew upwards in terms of average population age (now over 40), the generation currently in elderly years is the most populous we've had in the UK. Subsequent generations are smaller so there won't be such an imbalance. No point panicking now and rushing through some half baked policy on how to manage the "problem", better to think long term about how we structure a society that properly takes account of life at either end of the employment cycle.

Christ reading all these replies I should be utterly depressed as I spend my work life inspecting care homes!
There's a difference between residential and nursing and also, unfortunately due to need, we see residential homes caring for people with far higher needs than they used to.
I see some really good care, excellent in fact and thankfully not many poor ones. Sometimes it's sad when I see people at end stage dementia being nursed in bed, but what is the other option.

But it is a wonderful way to go , it’s just q shock to the living relatives and for that I’m truly sorry 😔.

It's so interesting to read the majority of people on this thread seem to be against life prolonging interventions where quality of life is no longer preserved.

My experience working in healthcare both in secondary and primary care is quite the opposite, a lot of families want their elderly frail loved one kept going at all costs, obsessing over their blood pressure/wanting antibiotics on a never ending loop etc etc and when something new goes wrong looking for another fix.
What we then end up with is people with little quality of life, navigating mountains of medication (polypharmacy bringing it's own issues) and only going out for medical appointments.
I wouldn't want it for myself or someone I love.

Better anticipatory care planning and more openness around the fact death is inevitable and another and another pill isn't going to stop it coming to all of us would be helpful.

I've seen it in my own family. My grandma was well and independent till a stroke at age 96, after which she needed care- we're a large family so she was looked after at home by us all on a rota to avoid a care home.
When she passed away 2 years later after a second stroke I still had relatives balk and object when the consultant suggested a DNR was appropriate. I had to talk to them about the reality of attempting resus on someone in her condition and the fact it was more than likely to fail anyway so she'd have a traumatic painful end rather than slipping away peacefully which she was more than ready to do.

Healthcare workers are in a no win position as you can't write someone off just because they're old and/or disabled so often these measures are taken at least part because of fear of complaints or litigation when the real compassionate thing to do would be to facilitate a dignified death.

There you have it, fear of complaints or litigation. I dealt with over zealous relatives too and I used to despair. Some didn't even want painkillers to be administered in case it made the elderly person too drowsy to eat their slop. Many people can't face death and their selfish demands are ensuring their relatives suffer. The message needs to get out that imposing this harsh existence on someone is tantamount to cruelty. People need to deal with their immaturity.

This is why the nhs is in a dreadful state, it seems we keep people alive by pumping them full of medicine at great cost for year after year of existing.
Both my grandparents were reasonably health then died quickly after a very short illness. My parents in the other hand were kept alive, my mum with dementia which was dreadful.
Im in my 60’s now and am already dreading being kept alive with no quality of life.

In the event that I become physically or mentally incapacitated and lose my quality of life I would want to explicitly forbid that I be subjected to life preserving measures or medications. I would prefer the option of a dignified peaceful passing that doesnt traumatise my family or force them to watch me wither away in a care environment. Let me go peacefully and painlessly without suffering.

Nationally, I seem to remember the stats on care home lifespan is an average of about 2 years. Probably slightly more in a care home, slightly less in a nursing home.

I'm sure if you travelled back in time 20 years, and asked the current folk in them what they wanted their end of life to look like, not a single one would want where they currently are. Who would? No one wants to be a mouth-gawping husk in a chair.

As for care homes chasing for medication etc... There's two ways to look at it. The cynical answer is money. A living body in a bed is one that's paying the fees and therefore wages. An empty room because the resident has died means no money.
Secondly, they don't want any kick-back. "My mum could have been saved if you'd got her antibiotics! I'm suing you!" It happens.

My grandma had dementia and spent her final 3 years in a specialist care home. Physically she was in good nick, so could still get around. Ultimately it was an accidental fall when out on a walk that finished her off. She broke her pelvis, kept forgetting she needed to lie still in bed, kept causing herself pain as a result, got a UTI, and ultimately it was the pain and distress, plus the UTI that killed her.

My cousins other grandpa is currently in a care home and it's been the making of him. Prior to admission, his T2 diabetes was wildly out of control, he wasn't eating properly, and his personal hygiene was shot to pieces, he was dirty and smelly.
3 years on, he's a changed man. His diabetes is under control, he's clean and smartly dressed, and actually looks like he's enjoying life again.

@Anoninsomniac it’s not financially motivated. It’s often fear of litigation.

I’ve been a doctor for 35 years and I’ve seen a massive change in treatment of elderly people, motivated by a variety of factors.

Firstly, medical technology has advanced hugely, so conditions that were inevitably fatal can now be treated. And if you can do something, it’s hard to justify not doing it.

Secondly, NICE and government guidelines/targets have pushed GPs to address risk factors aggressively, regardless of age. So we have 95 year olds being given medication for their slightly high cholesterol etc.

Thirdly, as medical technology has advanced, so public expectation has changed. Everyone expects to live for ever now. People assume that everything is treatable, and should be treated. I see patients well into their 80s, baffled that nothing can be done for their age-related symptoms.

Fourthly, fear of litigation is huge. I’m constantly fearful of being sued. We end up in ridiculous situations in which an elderly patient is very ill. The doctors feel treatment should be withdrawn, but they can’t insist on that, because they’d be accused of murder. The family feel obliged to insist on all active treatment, otherwise they feel guilty, even if they secretly agree with the doctors. No one is prepared to “pull the plug” as it were, so the poor patient ends up living in continued pain and confusion for months. Even Respect forms (what used to be DNAR forms) are overridden by stressed relatives.

I’ve often visited care homes and dread ending up in one.

This thread is sort of mad, I mean it seems to tap into the recent Assisted Dying controversy. I am against the Bill because of what I saw my mother go through in Surrey care homes; it seems to be a way of getting euthanasia on the sly - but it's clear other posters' views and experiences are at utter variance with mine and I am not unsympathetic at all.

It seems there is no joined-up thinking about what is going on. My attitude is, fine, if you see no value in your parent's life, if they are just burning up the family fortune and they show no glimmer of interest, happiness or even contentment in day-to-day life and haven't for years, and the crucial thing being if they are in real pain with no hope of alleviating it, ffs let them go, I mean nowhere in Surrey would anyone let them linger on, it seems to be euthanasia county here.

Contrast with our experience of Mum with advanced Parkinson's - my sister and I had to take it turns to go in daily to give her drink because the care home basically refused to do so - but didn't ever make it clear why, I had to figure that out. It was, okay, just let us do it then, while we pay a grand a week to the care home and we're not allowed to leave. The machinations they went through.

I have felt the same! A SiL’s father died instantly of a heart attack, while her Dm had a massive fatal stroke while eating her breakfast,

Whereas my parents - one with drawn out cancer, the other with even longer drawn out dementia.

Plus there was a colleague whose very elderly and habitually unwell mother died very suddenly. She knew what I’d been through, or was still going through, with DPs plus FiL, so I wasn’t afraid to tell her that my first thought had been ‘lucky you’.

She wasn’t in the least offended - she admitted that one of her first reactions (apart from the shock) had been of relief.