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?

Going through this process at the moment with a relative. The medics can't just let somebody fade away.
It's awful all of it.

I’m not sure it was worse than any other way. I was with her from about 2hrs post accident until the end. At least from what I could observe, she slept 95% of that time and was very peaceful. The brief periods she was awake she would just smile and pat my hand. They gave regular injections for pain relief just in case she was in pain, but if she was, I saw no signs of it.

I’d be curious as to what way you think would have been better? To me, continuing to waste away in a nursing home bed for years on end would not be my preferred way to end my life vs a fall and quick death. To each their own though.

I'm sorry. Its awful and its almost as if there is now a sense of fright and unwillingness to let life come to a natural end. Medics are apprehensive about this because of Shipman but I think there still needs to be a recognition that death is normal and not something to be prevented when someone is naturally coming to the end of their lives. Artificially prolonging life is in a lot of cases doing nothing but prolonging suffering and indignity.

It was the fact that she died due to someone’s neglect to keep her safe. I understand what you mean by not wanting to prolong her life.

Agree. There are way way worse ways to go.

They made a mistake, I wouldn’t call it neglect. Anyone could accidentally forget to pop a bedrail back when they are juggling the needs of multiple high care patients at night. They aren’t exactly flush with staff. It’s just I actually feel grateful for their mistake. It was so SO much better than the alternative, as Nan could be quite an agitated and difficult dementia patient, which suggested to me that regardless of her level of awareness, she wasn’t a happy camper and death was freedom from suffering.

I know what you mean op. In my dads case it can drag on for years. My mams side they lived well into their 90s.. its tiring though dealing with it all

It's ghastly. And all the while I'm getting older. I've been through it 3 times, this is number 4.

I think it's so selfish of people to demand things their way with no thought for the living. Come hell or high water I will be putting my affairs in order and leaving a tidy place behind me.

When my DF died, it went to coroners because he died during/because of an op. Reading the post mortem report gave me some unsettling feelings that there could have been some catastrophic failure by the surgeons/doctors. Another cardiologist in another country commented that ‘it should never have happened and would never have happened here’ which really gave us pause for thought. If there was a failure on behalf of the doctors performing the op that day, I can’t now say I’m upset. He had the best gift and avoided years of miserable life by not surviving the surgery and he had no idea and was in zero pain.

On the back of this thread - and through personal experience of the nightmare being experienced by two of our three 'oldies' (term of endearment - approved by them!), I have just made an appointment with our solicitor. One of the things we shall be talking about is what can be put in place to ensure - as far as legally possible - that I'm not left deteriorating in a care home with no hope of a worthwhile existence.

My grandparents in care home never lasted more than 18 months most much less. They'd had declines before then but mostly active lives and were happy - last year 18 months were hard or they weren't there depending on their condition.

I never understand why my families experiences of the NHS are so different to ones like these on MN. Older family from 70 onwards tend to find the NHS incredibly ageist and keen not to treat.

Last decade of dad life - yes he had muliple health conditions but still wanted to live and had qulaity of life - NHs would delay treating infections and then act surpsied when he rallied. He wasn't ready to go till last week though last year was hard and he was lucky to die at home and didnot need care home. If NHS had had prevalied he'd have not had had last decade which while in decline he mostly enjoyed - and he wouldn't have met his last GC and been at an age that child might remember him.

Maybe there's a lack of balance or even discussion and understanding about what constitutes life quality in NHS and care system.

I may be wrong but I don't think there is much that can be "done"
Medics can't dispatch people as they think fit.
It's an awful situation.

In all honesty I would say the last 20 years of my life have been massively impacted badly by the effects of dealing with very elderly family. 2 sets of them living far away, neither wanted us on the doorstep.

Yes that was my experience too so not sure where it is that older people are given 'excessive' medical care. I think it is a very mixed picture and this needs to be acknowledged - rather than arguing that all old people get 'too much' medical care . I do think it's hard for young doctors and nurses to imagine that anyone over 70 would want to live as to them it might as well be 140 !

I can only agree with the last few comments - I never saw a situation where care homes or doctors wanted to make the patient go on forever in spite of everything, it was quite the opposite. This is in Surrey, where the elderly population is high and the county council - as it was then, it's this year been rejigged as per national guidelines - was very corrupt and Social Services downright nasty. I never saw anyone on 'long-term' palliative care, it was a contradiction in terms and I suspect both my parents - one in a Kingston care home where the spy camera was covered up at one point - another in Epsom General Hospital, got bumped off via an injection.

With both, attempts had been made on their lives; via continual dehydration in various care homes, and by trying to stop us discharging Dad at Epsom General Hospital's AMU ward, I think it was - the matron got her mates to surround us, one filming us on the phone, every trick played against us, it was like care homes all over again but condensed in time.

I have aired these concerns with my local MP Helen Maguire and emailed all Surrey county councillors, scores of borough councillors and local and national journalists and got naff all back for my troubles - oh, except a) Eventually Ms Maguire put it to the Council's Social Services, and they acknowledged the allegations but did not deny any of them! and b) Eventually Surrey Police got in touch to discuss the allegations against Epsom General Hospital. When I asked who had passed on my document to them, they said it was the Council's Social Services! And refused to say who exactly. It looked like a calculated stitch-up - get the bloke in for a friendly chat and he won't think to ask for a solicitor to be present.

Maybe the situation is different elsewhere but on one point it seems we are agreed. Adult Social Care in this country is the Wild West, it is only about the money, and whether someone deems it more profitable to keep someone alive or finish them off.

I don't want to end my days in one either but more importantly I absolutely do not want my children to have to run round after me so the care home it might be.
I just think we should all be able to have an ‘off’ switch for when we have had too much.

By the time we get to old age (depends of course but I am early 50s), they might either have discovered some miracle means to treat or prevent dementia, or on the other hand be so overburdened by the ageing population that there will be less emphasis on 'care' and more on voluntary euthanasia, or at least less effort to keep the frail elderly alive. To put it bluntly, Generation X and below have fewer assets to fund care on this scale.

I agree that some people just go on and on and on. Both of my grandmothers have been though this
My maternal grandmother lived to 93. She became frail the last 10 years of her life, but no mental decline, no health issues and no medications at all. She went into a residential home for the last 3 months of her life purely because she was lonely. Had a great time there and passed away very suddenly with absolutely no prior decline.
My paternal grandmother is still alive, she is 98. Lived independently. She has had cancer and lukemia for the past 20 years. All treatment has been removed. Again she takes no medications. Still lives at home. Has home helps come in. Shes treated like a queen. Hair done , nails done, meals cooked. She can shower, clean, dress herself. Had no pain anywhere and her mobility is excellent. She just goes on and on and I have no doubt she will reach 100. My dad (her son) is 78 and he will for sure pass before her. I feel she will live forever

My BIL had a very severe stroke after which he lived for 7 years, 6 in a nursing home. He had numerous chest infections, in pain much of the time, ate very little, was a shadow of his former self, occasionally violent and attacking staff out of pain and frustration, no doubt. He couldn’t help it. Most of the time he didn’t know who he was or what was happening. Many times they prepared his wife for his death but he kept on going. It was traumatic for him and his family. It was a relief when he eventually died and was at peace and out of pain.

Oh that's awful. Thank God he's a peace now!

I do wonder, if he had stayed at home/not gone into a nursing home, if he would have died much sooner.

Like some posters mentioned a few times in this thread, I wonder if he was kept alive by antibiotics and various other drugs?

I'm sorry to hear that he suffered.

Thankyou. Yes, he was treated with antibiotics every time he had a chest infection, and taken to hospital too.

To avoid this kind of situation I have an Advance Decision that is pretty tough - not even oral antibiotics once I’ve lost capacity, let alone IV antibiotics or hospital. Advance Decisions are legally binding and mine is lodged with my GP and the ambulance service.

Of course if I still have the capacity to make decisions I suspect I won’t be quite as quick to say no to interventions, but we shall see.

80 percent will never live in a care home, of those that do, half die within 8 months.

But that is no help if you are on the wrong end of the statistics. My mum's husband has been in a care home for over 5 years with no end in sight. My friend's mum, in her 90s with dementia, has been in a care home for over 3 years. How does that information help them?

Those stats puzzle me too. My mum is in a care home. She's been there nearly two years and all the people on her floor have dementia. Nearly all have DNARs. It's the same faces I see, the same group of residents since she arrived! I can't recall hearing of a death, even amongst the men, who supposedly endure dementia for a shorter time.

I thought only 3-4% went into care homes. Now it’s 20%?

Both parents were in care homes. One parent for nearly 4 years and the other only 2 months.