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?

Personally I was very clear to the care home staff, once my mother with dementia was of a certain age. There was to be no hospital (in any case a terrible place for anyone with dementia) unless absolutely necessary - e.g. in the case of a 2nd broken hip, and no ‘striving to keep alive.’

They agreed absolutely.

It was a very good care home, a specialist for dementia, and by no means the most expensive. I’m quite sure that any empty room would very quickly be filled, so I really don’t believe that care homes deliberately keep people going for the sake of the money. Many will have waiting lists.

My mother had expressed more than once that she wished the stroke she had had killed her, which was upsetting but made decisions about signing DNAR documents very easy. She was in a home during covid, and when the GP phoned me about whether she should be hospitalised if she caught it, again I know she would be furious if I said anything other than "No". Mind you, she did catch it twice but survived it, so clearly was tougher than anyone thought.

I am so sorry. What at this point is keeping your dad alive? Are they feeding him, or is he feeding himself? Because if it's the former, it would be more humane to stop, surely. And to stop all vaccines and any treatment for infections etc. It is mindless cruelty to strive to preserve 'life' when a person is in such mental torment with no prospect of recovery.

Agree. It’s not living, just a horrible existence.

It’s all awful but them being terrified just breaks my heart.

@Vcal2017 So sorry about what your Dad is being put through. It’s just totally wrong.
My Mum who had dementia ended up
in a similar state but fortunately only lived for around four months in a nursing home. I’m glad you’ve had the courage to say no to further medical interventions.

Thank you everyone. It helps me so much. We’re meeting the palliative care team on Monday- they’re different to the aged care place. I spoke with a nurse/ administrator who said their role was to support the nursing home and administer anticipatory medicine. She was horribly vague and said drugs might be given every month or every day. I’m supposed to carry on my normal life? Like wot? He can’t tell them he’s in pain, so how’s that going to work? Who decides how much distress is too much distress?

Sorry I’m venting and letting out my frustration here. I am just so glad that I know there are people facing the same thing even if they are ‘just online’

We and the consultant from the last hospital stay have twice agreed no more medical intervention but it's much harder in practice. My mother is bedridden doubly incontinent can't even sit up move around can't eat drink watch television read function in any meaningful manner but she seems to be able to just keep going in a barely above vegetative coma. She keeps getting pneumonia and chest infections the care Home call the ambulance the ambulance administer oxygen and intravenous antibiotics. She gets admitted to hospital the consultant says there's actually nothing we can do for her here she needs to go back to the home the consultant rings me we have long discussions we agree there'll be no medical intervention she goes back to the care home she recovers to her semi coma state because she's already had the medical intervention. This has happened twice and the consultant has said , quite reasonably he can't tell the home not to call an ambulance when she gets the next bout of pneumonia or chest infection and he can't stop the administration of antibiotics or oxygen once started so we have spent 18 months in the loop of medical intervention agreeing no medical intervention more medical intervention agreeing no medical intervention. Last visit she did recognize me she can drink coffee from sippy cup and say I love you but she doesn't know where she is why she's there can't even lift her head off the pillow is in great pain, Alzheimer's and very slowly starving to death.

@Vcal2017 It sounds like your Dad needs sedation to reduce his level of distress and that should be easy to manage.
My Dad suffered a major stroke last year. He was in a hospital bed crying out, having awful muscle spasms and deteriorating each day. I managed to get the doctors to agree to palliative care only and got him transferred to a hospice. He received exceptional care and they administered enough pain relief and sedation to make him comfortable and not distressed. Watching him die was awful and I still feel traumatised by everything especially the hospital experience but at least he received quality end of life care.

@rockrollerpudNo. Most care home residents die within 2 years. Maybe if they had a choice they would choose euthanasia. I would.

Yeah, I remember one Surrey care home tried to get Dad to sign up for an annuity - where you paid X amount upfront and then if Mum lived any longer it would all be free. I'm not sure, but it seemed a bit dodgy and I don't think care homes are allowed to suggest that any more. Because, of course, if two years is your limit anyway, what's the benefit to the customer?

@Tontostitis thats awful. The only person who could potentially stop this cycle ime is the GP. They are the community palliative care leads.

@Tontostitis I feel your pain. Have you completed a RESPECT form with the both the GP and care home involved where you can say no to ambulances being called unless it’s for an injury.

When my Dad was in hospital I completed one with the Doctor’s and was able to say no to a lot of potential interventions. Perhaps I was lucky in that the doctors agreed with what I proposed.

No idea not heard of that I will definitely look into it. She keeps getting pneumonia in her throat and the care home say they have to call GP or ambulance if it's out of hours. Last time we were told she has to have antibiotics.

No, she doesn’t have to. Nobody has to. She should have what’s in her best interests. That’s complex and messy, but GPs help with those decisions every day.

@Tontostitis

https://www.resus.org.uk/respect/respect-healthcare-professionals

I’m not sure if it’s legally binding.

I had power of attorney for my Dad which possibly helped.

Trouble is, they are past being able to choose. That’s why they should be writing their wishes down long in advance. However, no one thinks it will happen to them.

I’m wondering if this is particularly the case for residents who no longer have capacity as the care home my mum was in very much respected her wishes. There was no diagnosis of dementia though there were suspicions of problems with various aspects of cognition but she was deemed to have capacity to the end. They did call an ambulance on a few occasions when they believed it necessary and she was hospitalised on several occasions, pretty unwillingly, where she was treated and sent back to the home. Her dr asked me on occasion, though I didn’t have poa for health (I did for finance), and for one particular test they suggested I said I felt it would be too traumatic (2 attempts years ago failed and she was far more frail by then). Otherwise I told them that they needed to speak to her as she had capacity though her hearing was poor and I’m not sure she always understood the implications of her decisions. In the last weeks of her life she refused hospital for a blood transfusion that I do think would have helped (though probably only for a few weeks or months maybe) but I also think she had had enough and she died a couple of weeks later. In the end they respected her decision. Did she fully understand that this would mean end of life? I don’t know because I wasn’t altogether sure she did really fully understand but she was very old, very frail and she was really miserable as she was no longer independent. She was still able to be horrid to me in those last days in her last conversations with me. Like many of you I found the whole thing really traumatic.

The stories I’m reading here are so awful, the suffering of the residents and their families watching it. I can only send love and strength to you all.

Im 53yrs old but in anticipation of this ive just bought an end of life planner to complete and leave in our safe. If my husband dies first I'll put it somewhere else so it can be accessed.

Why would it have to be in a safe? It's not like someone can break it, seize it and then use it against you.

@katgab someone in pain often will make someone else feel bad to make themselves feel temporarily better so I guess you could see it that way, your being there helped her feel better In her last days. It's not the loveliest finale but you could take that from it.

@katgabFor some people there’s no good death, at home or elsewhere. It’s horrible at home quite often so don’t think that’s a great and of life, because it’s not.

So my husband will know where it is. For no other reason

Thanks, I’ve been following this topic for ages, I am 79 and fit and healthy and hate the idea of going into any sort of care.
I think the idea of writing down how I feel about a lot of things will help my children if I ever get to need their help. I’ll not write it for me but as something they can use to show medical people, Social Workers etc exactly how I feel. I hope it will make life easier for my children.