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?

My aunt’s mother-in-law came to live with her and husband when she was elderly. She wasn’t particularly ill. She was just too old to be at home on her own.

They had a routine on a Sunday where they would have their roast dinner and then she would go up to her bedroom where she’d sit in her wing back armchair and watch Emmerdale on the TV. My aunt would go up at the time she knew Emmerdale was finishing with a cup of tea and a sticky bun.

One Sunday, my aunt went up with the tea and the bun and she was dead. She’d been perfectly fine at lunch, gone up sat in her chair and just died sat there in front of her favourite tv programme in her slippers. The credits were still rolling on the tv.

It was a shock for my aunt and uncle but an absolute blessing for her.

Gosh, so sorry for your loss and pleased your Mum was able to exercise some control over the situation, at least 💐

As other posters have said care homes and hospitals will do absolutely anything to keep someone alive regardless of their quality of life. They fail to ask the question whether something should be treated simply because a treatment exists. I value quality of life over quantity and although I don’t consider myself elderly I’d already refuse treatment for many illnesses. What I’d advise people to do
is write an advance directive whilst you can.

When my time comes and I know im declining, and need assistance.
Im of to Switzerland and die with what dignity i have left.

This is true. For reasons I won’t go into, I was looking up an inquest into a death online. It was really striking how many inquests related to elderly people who lived at home alone falling down their stairs and dying and or slipping in their garden. And other unusual at home freak accidents in the elderly. I know they say stairs cause a lot of deaths but it’s not until you see it in the local stats for your area that you realise just how prevalent this is. In care homes there are much fewer accidental risks where you become a cropper. Not that I want anyone to tumble down the stairs - but it’s one reason I think once a person enters a care home their life expectancy suddenly seems to sky rocket.

I have been through this with both parents, my mum 2.5 years in a care home with Alzheimer’s and my Dad 11 years with Huntingtons, both died relatively young. Visiting Mum was traumatic, she screamed and was very distressed, had no idea where she was and cried for her Mum and Dad. My Dad was relatively more aware but physically disabled and had no insight into his condition and couldn’t communicate. It was horrendous to witness to the two people I loved most in the world. I lost them within a week of each other, it was the saddest outcome and the best outcome for all of us. I’ve had bereavement counselling and have PTSD. I’m weight training (now I have time to do it) but I can’t outrun my genetics. I hope as a society we can start valuing quality of life over quantity of living years, but thanks to some disability activists holding down jobs in the media and para Olympic athletes we are not able to see people who are being actively harmed by being kept alive in states of extreme pain and distress way beyond when they should be, because it is making a small number of care home owners a lot of money at the expense of many families.

Yes, DH has written an advance directive and I intend to as well.
DS has been charged with seeing that DH’s wishes are carried out. (No lifesaving measures as the end approaches etc eapecially if dementia is present) and has agreed. He will do that for me too.
It’s a comforting thing to have in place.

Nurses study something called “The Determinants of Well-Aging”. These things include things like good nutrition, physical fitness, exercise, etc, but also strong social connections and personal interests like hobbies, etc. I think a lot of these really elderly people might be the exceptions to the rule. I’m pretty sure most of them don’t have strong social connections, their food is wretched and they are not really encouraged to exercise. must be a miserable life. My grandmother used to call those places “God’s Waiting Room”. She did not want to be hanging out all day with old people and she didn’t want to be fed “old people food”. She wanted to live to be 100 so she could tell the local news that she’d been smoking for over 80 years. She made it to 96 living with my family.

I can’t speak for anyone else, but I was quite firm with my DM’s care home that by a certain age (and stage of dementia) there should be no hospital unless absolutely necessary (e.g. in the case of a 2nd broken hip) and certainly no ‘striving to keep alive’.

They agreed absolutely.

AFAIK the CH usually had a waiting list.

From all I’ve ever read or heard, it’s often the relatives who want Mum or Dad kept going for as long as humanly possible - ‘I can’t bear to let Mum go!’ - regardless of the quality of life - when the medics may well think that letting Nature take its course, with palliative care, might well be kinder.

It’s very hard when you also hear of quick, pain free passing and feel guilty that you are jealous of the chief mourner. Person at work - MIL totally fine. No care needed. In their late 80s. Was found sitting upright in her armchair dead one morning. Cup and saucer still on table. Cake in hand etc. I will burn in hell because my first thought was envy. For all involved.

I definitely don't want to end my days in a care home and would rather die of a heart attack while drunkenly dancing La Macarena too wildly.

However, I love life so can understand why people cling onto to it. One of my neighbours is 102 and after a stroke at 99 is no longer physically active. Mentally she is still all there, although she tires easily, she told me she has learned to love the stillness and opening her window and listening to the birds.

I guess that one has to make adjustments but it is still living and you can still find joy in things (happy memories, remembering loved ones, etc).

Yes i think this is right. I'll try and find the source but I'm sure i read somewhere that the average period of time in a care home from admission to death is something like 8-9 months.

Of my grandparents, both grandfathers died suddenly while still living independent lives. One grandmother moved to a care home mainly because of physical difficulties but rapidly developed dementia. I think she lasted another 4 years. Other grandmother moved to sheltered accommodation once widowed, then care home once struggling physically, I think she lasted about another 18 months. FIL was about the same, quite a rapid decline after being diagnosed with Alzheimers. MIL died suddenly after a short illness, no care home.

But I do remember some residents at my grandma's care home who seemed to have been there for years on end. One lady was joined there by her own son who was also elderly and infirm by then. Maybe those people are easier to notice/remember?

What, that you'd just sit down and not get up one day?

No, doesn't happen like that. It's a gradual incremental creep, mostly. Imperceptible when it starts, but after years there will be gradually fewer things you can do, and eventually both your home and you will be in poor condition and your loved ones in despair. Refusing help won't prevent you from needing it.

OP I'm not sure what your point is in starting this thread. What would you rather have, some kind of Logan's Run set-up? We're all going to die, mostly in ways we can't control, regardless of how many weights we lift. Unlike animals, people don't own each other, we don't buy our parents from pet shops. All we can do is support those who can no longer care for themselves. And yes that means losing our squeamishness and disgust about failing bodies and recognising that the alternative ie murder is much worse.

But I do remember some residents at my grandma's care home who seemed to have been there for years on end.

How would you know? If your grandma was only there for eighteen months, did you continue to go there after she died? What did you do, hang around outside watching for undertakers?

The proposed bill was for people with a terminal illness and full capacity so wouldn't be able to be used with dementia as its not deemed terminal.

My sister who is 67 has been caring for her mother in law 90 at home to the detriment of her own health. All other relatives seem uninterested. It usually falls to women.

Exactly.

I don't think it's bad to think of that as a "good" death. One of my grandfathers lived life to the full right up to the moment he died, his heart stopped suddenly and he fell down dead walking his beloved dog. It was a terrible shock to us as (although he was in his 80s) he was so full of life and energy. The last time I had seen him he had set up a treasure hunt around his garden for the great grandchildren and climbed up a tree with my son to help him find a clue!

I can remember talking to the undertaker and him saying "you won't see it this way yet but that was a wonderful way to go" and I thought how odd and tactless. But I totally get it now and hope I make my exit similarly.

Doesn’t matter if your 25 or 95 it’s all about quality

my dads last years were pitiful I used to think if he could see himself he’d be horrified

thankful we’re told bluntly do you want us to pump him full of antibiotics chances are he would rally round but never improve
we choose not to continue treatment and he passed
it absolutely was the best thing for him

Very similar to my recent experience. It's horrible to lose someone with no warning but amazing to think they died still enjoying life to the full and with no fear and suffering

my FIL (Alzheimer's) lasted for 6 years, he eventually died of leukaemia & my grandmother (vascular dementia) just a couple of days short of 10 years. She was 98 when she died. The treatment they got - multiple hospitalisations for chest infections, UTIs, investigation of falls & "taking a turn" etc - was obscene imo. They were both had bucket loads of daily medications. The pressure for this did not come from relatives - we, including MIL & my parents - were horrified, there were multiple discussions between us, the staff & medics but it didn't make any difference to staff actions.

Oh and neither were slim - both overweight at least since middle aged, both sedentary & both moderate/heavy drinkers. Neither smoked

I 100% agree OP. Sadly my husband is of the mind that he wants to keep his parents and probably me if he can going as long as possible. It was the same for his grandparents. I find it unbearably depressing to think about. As it is my ILs are only in their 70s and just sit there staring at the TV all day.

After caring for my mother for the last 8 years, who is now in the advanced stages of Alzheimer's (she also has breast cancer, heart disease, osteoporosis and fractured her next last summer) and having looked around care homes recently we are trying our utmost to keep her at home, not because we are after her money (it's costing £4k per month for carers coming in every day) but care homes are businesses at the end of the day and elderly people are their bread and butter so it's in their best interest to keep them alive regardless. Care homes are bloody depressing places imo, people half dead being kept alive for who's benefit?

I couldn't bare for mum to be keep alive like that. I wish for her to go peacefully at home and if I'm honest, the sooner the better because she has suffered for far too long now, it's heartbreaking to watch day in day out yet her body wants to live for some reason.

I live in a country with voluntary assisted dying and an article has just come out that many aged care facilities are blocking access to VAD provision. Some of the facilities are religious and others just seem to prioritise the income over their residents' wishes.

Once I get to the stage when it is deemed that I can "no longer manage" or get a diagnosis of Alzheimers/dementia then that will be the day I stop taking my heart meds and damn the consequences. I'd rather be dead than go into a care home.