Care homes make me think people never die

Yes. My grandma developed dementia in her 70s and lived until her 90s. She had over 10 years in a care home! Initially, she was kind and forgetful, but she became childlike and then a vegetable. Her kids (including my dad) rented out her house to part fund, she had a widows’ pension from my grandpa’s occupation and the council took a charge on the balance, so they just about made it through in a nice nursing home before the money ran out. The pension scheme trustee and the council rang my dad very regularly to check she was still alive as they clearly could not believe it. She had a heart bypass about 5 years before she was diagnosed with dementia and I often think that it would have been better for her quality of life if she had just had a massive stroke when her heart gave out. She had a hip operation and a cataract operation whilst in a moderate state of dementia (the cataract operation was particularly sad as she couldn’t understand why she had the dressing on her eye and kept picking at it). I know that if there is a brain scan for dementia developed when I am getting older but still capable I plan to take myself to Switzerland when I still can - sitting in my own filth starving to death after being brought back by repeated bouts of pneumonia is awful, but it’s not possible to opt out of it by that stage. I also think that the Harold Shipman case has made end of life care far too cautious - if you’re genuinely dying (eg if you are nil by mouth, DNT, waiting on nature to take its course), doctors should be able to give a life shortening amount of morphine - it would have given us comfort to know that grandma was dying under medical supervision, rather than through starvation and pneumonia (nothing to do with inheritance - just whether taking well over a week to die barely conscious is really better than going out on a morphine high).

From all I’ve read or heard, 2-4 years is about the average in a care home. We took out an annuity for my DM when she moved to a care home at very nearly 89. TBH despite her coming from a large and generally long-lived family, I didn’t really think she’d last more than a couple of years, but thank goodness my sister had the foresight to do it. DM went on to 97 and during her 8 years there (a specialist dementia home) I saw many residents arrive and quietly disappear after a couple of years.

It was at the 4 year point that my sister told me that we’d ’won the bet’, I.e. broken even - so presumably 4 years was the maximum period the annuity provider - after doing their sums and seeing her health records - had ‘bet’ on. The annuity covered the difference between her income and the care home fees, until she died.

TBH I think even the care home staff had begun to think she’d go on for ever - I certainly had! And with advanced dementia, the prolonged lifetime was certainly not any sort of blessing, either for her, or for us who had to witness the pitiful wreck she’d become.

They don't die, instead they become merely a tube which siphons the proceeds from their liquidated assets into the coffers of the care home.

Exactly the same thing happened to my Mum - aged 79. She passed away three hours after collapsing and when i was told she had had a stroke I prayed she’d pass quickly because she’d always said being in care would be her worst nightmare.

My DF was kept alive long after he wanted to die. He had Home Care, & the carers cajoled him to eat just to cover their backs. The GP was sensible, & said if he doesn't want to eat just leave him alone. He ended up refusing liquid as well to hasten his death.
If he'd been in a Care Home, he'd probably not have had a GP to speak up for him, & been kept going against his will.

Actually, this thread is really helping me this morning. A safe space to say things people dont like hearing. We are currently battling trying to get the right care for DHs Dad and I feel awful for thinking “Why are we prolonging his life?’ But comments on here have really helped. Thanks.

I've recently experienced two types of loss, my mum aged almost 81 died in November after suffering a huge brain bleed, one minute here then next gone. She'd had a normal day - been out shopping, changed the beds, put washing on, cooked tea had a glass of wine etc.
It was (and still is) a huge shock.

A week later my Grandmother in law aged 100 died in a nursing home - She'd been a resident for almost 3 years and her quality of life in the last 12 months was imho pretty near zero. Up until being 94 she lived independently and fairly happily.

I wish my mum had been around for much longer but I wouldn't have wanted her to 'recover' from a stroke and require 24hr nursing, so I think it was the best for her.
Unfortunately we cant yet choose how long we will live but id take quality over quantity any day.

My dad had severe sepsis last year, alongside advanced dementia. He was already bed bound. It took 10 days for antibiotics to do anything and they said if they worked he would have even less quality of life. He survived, he’s got zero quality of life, he wouldn’t want this. I can’t help thinking that pre Harold Shipman he would have been helped along

My aunt was the same. Parkinsons changed all that. It's an evil disease.

None of my many older relatives have ended up in a care home (nor had issues with mobility) and none have set foot in a gym or done any sort of weight training.

What they have done is housework, gardening and lots of walking. That’s been enough to keep them fit and mobile until they died. My mum is currently 80 and in good health/fitness. She does dog walks 3 times a day. Cleans her house, pops into town a couple of times a week. That’s it.

To be honest, I think the people who need additional exercise are those who drive everywhere, have cleaners etc. If your general life is reasonably active I think that’s good enough.

Long term low dose antibiotics given to prevent UTIs. Residents in long term bed care with eyes closed permanently being spoon fed a soft idea. All fluids thickened. This can go on for years. I think it's cruel but not sure what the solution is.

They are often sti private just with a LA contract

@Sidebeforeself it’s obviously something I will have to reassess from time to time but, having been widowed, and having a parent & grandparents who have suffered terribly, I’m quite certain I don’t want life dragging in.

www.nhs.uk/tests-and-treatments/end-of-life-care/planning-ahead/advance-decision-to-refuse-treatment/

I used to think dying meant you just went to bed one night and didn't wake up in the morning. If only it were that easy!

Having seen the endless limbo that some people endure, like PPs I am really focused on building a buffer of functional fitness in preparation for older age.

My siblings think I'm nuts, but one day I might dance around them dribbling in their bath chairs, singing "Who's the crazy one now, eh? eh, muthafuckas?!??"

lol what a load of nonsense

So who will your care fall to, if or when you’re unable to manage alone, or one of you needs physical care the other isn’t strong or well enough to provide?

I understand the wish to remain independent and in your own space, but in order to do so you need to have made pretty serious provisions (and potentially adaptations) for the future, and thought through what will happen in every possible scenario.

Which you and your wife may have done, but too often the ‘I’m staying put’ decision comes at great cost to an elderly person’s closest relatives, who have to deal with all the arrangements, all the worry and stress, all the extra support, all the phone calls night and day. Plus the inevitable falls and emergencies that occur when someone is unable to properly care for themselves in a home that’s totally unsuitable for their stage of life.

Having gone through this in my own family and watched lots of friends do the same, I’d never be so selfish and stubborn as to inflict this on my own kids, and DH and I (late 50s) have already downsized and are thinking very seriously about our options in later years. If that means a care home, so be it.

I agree, MiL had a biggish stroke 4 years ago. She was on for decent recovery so DH and BiL agreed to an NG feeding tube and then a PEG. She then had another stroke about 10 days later and has slowly deteriorated ever since.
She keeps getting chest infections which every time we all think she's going, but she rallies and goes back to pretty much where she started.
She has no life, can't walk, can't talk, can't swallow. It's miserable and she would hate being the way she is. So sad. At 87 she could go on like this forever.

@YoullWishYourLifeAway No need to respond to my earlier post - Ive Googled it! Definitely seems like something my DH and I will do.

Why do you think that?
Loads of people on the thread have listed problems - do you have older relatives in long-term care?

My MIL is like that - doubly incontinent, in a wheelchair, almost blind, but she is of a robust farming stock and her internal systems - heart, stomach etc - are functioning super well, so she can, potentially, last for another ten years like that, if they continue to treat her infections.

This was not how she wanted to end, and she has no quality of life. Yes, she has DNR, but there are so many interventions before that, and there is nothing we, as a family, can do to stop them except refusing flu jabs.

We feel like we are keeping her hostage in this world. In the past, she would have slipped away and joined her beloved husband, as she wanted to after her first stroke. It's heartbreaking to see.

We have friends in their mid-80's - no children - lived a fantastic life, still playing golf, driving, had a decent social life. Their plan was like yours.

Several years ago, one of them had a major stroke, and has been in care ever since. Their spouse still lives at home (despite various ailments including dementia), and spends each day in the care home sitting with their immobile partner. Such a sad end to their wonderful life, and one I know they hate.

I hope nothing similar happens to you @OldJohn, but the best laid plans can fall apart.

Sounds like exception rather than the norm though. But good on him - sounds like he’s living his best life.

I was just about to post this. Not so anymore, unfortunately for some, like an acquaintance of mine whose 90 odd year old relative fell and hit their head. It wasnt known how long they had laid on the floor. Blue lighted to hospital, subdural haemorrhage, aspiration pneumonia.
Now 2 years on, in a nursing home, immobile , non verbal, tube fed. Absolutely tragic 😥