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?

The fees for my mums care home were similar. It was owned and run by a charity affiliated to our religious background, something very important to my mum. It observed appropriate religious practices. The majority of staff were not of that background. The staff were paid at higher rates than minimum wage and there was practically no staff turnover in the time she was there. It seemed well run and caring as well as efficient. The carers in the care home were in every way better than the carers I had helping mum at home (not that she helped herself with that). They seemed to be trained, patient, kind and caring. My mum wasn’t the easiest, none of the residents were. Because my mum was deemed to have capacity, they respected her wish not to go for treatment at hospital (transfusion) though they had called an ambulance on several occasions as they were concerned. On those occasions she was patched up and sent back to the home. We’d been through several episodes of that whilst she was still at home, including 5 ambulance call outs in the 24 hours before the last admission before care home. On that occasion she was unable to breath (Covid) but still refused to go to hospital until the last paramedic insisted. She was carried out shouting abuse at me. Probably hoping I’d give in and stop them even though, if she had died at that stage, she would have died in agony with no support other than me if I hadn’t gone home to try to sleep. TBH, I pretty much all my life had given in to her despite her saying otherwise so it would be a fair guess that I’d have done then.

As a charity care home I think there was a different focus. It seemed very focused on the residents welfare and allowing them to have a voice in their care. Clearly that would be different with advanced dementia residents. They were very supportive of me as well. Frankly they saved me and, whilst the visits were difficult, I was able to take a step back. Shortly before that final admission, I almost crashed my car, luckily my kids were not with me but it really scared me. She was ringing my mobile repeatedly but, even if I could have answered, she wouldn’t have been able to hear me.

Tbh, it was more the medical staff rather than the care home staff that seemed keen on active treatment. She really didn’t want the repeated hospital admissions as she thought they did nothing. This wasn’t strictly true but her memory was so poor by then that she wouldn’t have remembered. The care in hospital was pretty variable. They just don’t have enough staff to cope with patients who need that much help and she refused my help. My being there made it worse. In the end, I think she’d had enough and, whilst it’s upsetting to think that, I could see her point. The loss of independence (though she believed otherwise) broke her.

I think quite a lot of people fear this will happen to their loved ones @rockrollerpud - and maybe even happen to them too! Glad your grandmother had a peaceful ending.

Yes, and Captain Tom Moore. I really think part of the hysteria around him was that he was 'marvellous for 99' - cognitively fine, mobile (well, on a walking frame), had survived cancer, flew off to Barbados or somewhere after lockdown ended. And yet statistically he too was a complete outlier. We were locking down to prolong the lives of people with an already appalling existence (which got far worse as they weren't allowed to let relatives into nursing homes for ages), but he was a handy distraction from the rather surreal reality, which was that we were protecting people so they could endure a longer, slower decline.

Disturbing to think about, but it's very likely what happened - during lockdown @AInightingale

My sibling arrived this week from abroad. They visit my DM once a year due to the very long distance. They stay with me for a couple of weeks and go visit daily. They’ve said, “Gosh it’s grim. It’s just grim. I can’t believe half of them are still going.” They are doing short visits of up to an hour, then having to go off immediately to do something that mentally lightens them because it’s so shocking to see how most of the residents are. It has been raised that they don’t know how I do this every week for years. Neither do I.

Being a regular visitor to the nursing wing in DPs care home, I think you do get used to it after a while. It’s not pleasant but the really immobile don’t seem to be in distress ( this is the nursing wing not the dementia one) and I often arrive to find staff sitting beside them and gently talking to them and it doesn’t upset me like it used to.

The one thing it has made clear to me is this situation could go on for multiple years not months. When we brought both DPs in they were physically poorly but have now perked up a bit due to regular fluids and feeding. Their funds can last for a fair number of years, but I now hope we don’t get to the stage where they run out. Mainly because I don’t know where they would then go and secondly because it would mean DM in particular would be living a very difficult life because already she can’t see or hear well and her speech is almost gone, so basically sits doing nothing each day.

They went into the care home because there was no real alternative, I hadn’t really thought about the likelihood it would extend their existence so much.

It has been raised that they don’t know how I do this every week for years. Neither do I.

I've seen my parents multiple times a week for the last 4.5 years, since DMs medical episode...they're not in a care home, they're still in their own home and that's bad enough. Same old, same old...DMs dementia means the same conversations every 2-3 minutes (I kid you not), DF wanging on about local politics and a nosey neighbour whilst I clear out the fridge/cupboards of gone off food...

I'm mid 50s and I could be doing this for another 10 years yet! I can't think about it too much as I think I'd sink into a deep depression. It's just relentless isn't it. 😔

When my DF went into a nursing home after hospital stays we really didn’t expect him to live for even a year. However, that was 3 and a half years ago and he’s still there, declining slowly and being spoon fed mush and given antibiotics for every possible infection. My DM has POA and won’t consider letting any infection run its course with pain relief for comfort. He gets his flu and Covid jags as well. It seems endless and is thoroughly depressing.

The staff seem constantly delighted to tell us that he’s eating and drinking well and recovering from any infections which could give him a merciful way out. I can’t stand it. He can’t speak or move, everything has to be done for him. He was an intensely private and quite shy man who would have hated to end up like this. Another thing which I find quite gruesome as we were very much not a tactile family is that the staff will hug and kiss him. This happened again the last time I visited. I’m currently on holiday but am going to speak to DM about this on my return. The other thing the nursing home used to do, which DSis and I found distressing and not on line with what my DF would have wanted, was include him in this pathetic state in photos on their social media. dM seemed initially unbothered about this but we prevailed and she withdrew her consent for this to happen. She seemed to think it was just the way things were but she must have given permission for this when DF first went there. The concept of personal dignity, boundaries and any kind of autonomy matching the person’s wishes and habits when they were well is very much lacking.

Horrible isn't it @Seeingadistance I hate the photographs too. And the 'paintings' they do and are given to keep, just coloured streaks, like something a two year old would do with poster paint. They actually upset me because my mum was quite arty and it just brings home the scale of the decline and brain and fine motor skill deterioration.

My heart really goes out to all the posters here who are seeing their parents/older family members just existing in a home, and being drugged up to the eyeballs to keep them alive, with ZERO quality of life.

I am shocked that this is allowed to happen, and I am pretty sure it's very wrong. Pumping people up with drugs and meds to keep them alive, instead of letting nature take its course.

As many of us have said, this never happened pre 2020s. Someone, somewhere is making a shit load of money from people, and bleeding 1000s of families dry of money and assets.

It's outrageous.

I agree 100% about the photos. I couldn’t refuse the social media consent fast enough - my mum was the most private person you could imagine. What also shocks me is that they don’t see what a bad advertisement for care home life the pictures usually are!

We escaped the photos. It was DH that spotted the form whilst I was signing their savings away. The customer relations manager was very honest and said she wouldn’t sign it for her own DPs if they were in there and we didn’t have to. To be fair DF is enjoying it and is participating in activities I could never have imagined him doing like singalongs. Thankfully no paintings yet - it is reminiscent of. DC in nursery.

I was at the care home yesterday visiting my DF who is now bedridden and has quite advanced Dementia but he still kept saying when would he die?
He had a bit of a chesty cough which is the result of wanting to lie flat and not propped up.
When we arrive he’s always lying flat in bed with the curtains closed as he says he doesn’t like the light!
We always open the curtains and raise the bed.
He can at least engage with us then.
After several hours me and DM were on our way out when DM was called aside.
She was asked to sign a form agreeing to him having the Pneumococcal Vaccine because of his chest.
This she did without a second thought!
Inwardly I was rolling my eyes because yet another pathway out of his misery has been blocked.
On the way home she then starts talking about how awful the whole situation is and how she wished he didn’t have to suffer so much.
I pointed out that all the vaccines and antibiotics she agrees to are just prolonging his life and in actual fact, if she stated she didn’t want him having all this he would possibly pass away naturally as nature would take it’s course.

This hadn’t actually occurred to her. She thought she was doing her best for him but it has certainly made her think.

I think this happens quite a lot actually. People just get forms shoved in front of them and they blindly sign them for all kinds of treatments without much thought.

My sibling is at the care home today. I’ve put off a meeting about our DM choosing resuscitation and other treatment. I’ve given up tbh. Someone else can have the maddening conversations. I am just so TIRED of it all.

Siblings reports that DM refuses to decide on DNR etc unless I am in the meeting too. Why. Just why. My DM has never given a hoot about any of my opinions or advice. She’ll drag me into everything and anything only to chose the exact opposite of almost anything she asks my advice on. Here’s the meeting in my mind:

DM: Do you think I should have resuscitation?
Me: No. For the following reasons: after resuscitation you’ll have a much lower quality of life than you already have, and highly likely a few broken ribs because resus is brutal, and it’s only got a 5% chance of success anyway. And you’ve always said you’d like to go quick and fast like DF, and that you do not want to ever get to the final stages of dementia and Parkinson’s.
DM: I choose to have resuscitation though. Yes that’s what I’ll choose.

🙄🙄🙄🙄🙄

I think walking everyday helps loads too . If you don’t use it you lose it . I’ve seen loads of elderly people once they retire just sink in to a chair and do no excercise . They then become reliant on scooters to get about . My ndn is 93 and walks a mile everyday and does not need a scooter and still does her gardening and shopping .

Our LO is in a not for profit care home.They pay full fees , not cheap by any means but not 2000 a week either. Touch wood they have the funds for hopefully touch wood for years ( touch wood and fingers crossed again ) There are people with LA funding in their home ( with small top ups I think). My reasoning is that if god forbid they do run out of money they can stay. It’s a lovely friendly small home like a proper home /house and not a hotel and it happened to be our first choice anyway. It’s mad that they should risk being moved after paying so much when they could . The whole system needs seriously looking at.

My Mum was also a very private person and would have hated how she looked with dementia. I also refused social
media consent and made it very clear to the care home about actions I’d take if any images of my Mum were posted accidentally. I think the idea of posting photos of care home residents on Facebook
is hideous and an infringement of people’s privacy.

My loved one was in the last stages of her life in a home and seeing pictures of her that the home put on social media was deeply upsetting. She would never have consented to such an invasion of her privacy and she would have been utterly mortified if she was well enough to be aware. The last months of her life were unending torment for her and for us her family and I would have done anything to spare her the agony she went through and this was made worse by the continual refusal of doctors to give her enough medication to keep her comfortable.

Sorry, I meant to say pre 2000s on ths post. 😘

Actually I don't think it happened pre 2010s....

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I do see photos of old, sick people in a care home not far from me on a local Facebook page. They're mostly drugged and kept going artificially (as has been discussed on here,) and are usually borderline zombie like on the photos. The carers have them making stuff and painting splats on paper (as a pp said, like a bloody 3 year old at nursery,) and they have it stuck on their wall in their bedroom... They show something that 83 year old 'Joan' has made out of plasticine - well 'Janelle' the Carer has 'helped' her make it - and it looks like a toddler did it, and a few of the carers pose with Joan sitting in her care home armchair, looking like she hates her life..

Photos are put on social media (Facebook) every week. It makes me cringe and wince when I see them. I have thought many times 'are these people in the photos who no longer have autonomy and agency giving permission for this?'

I went to a Christmas fayre at a care home for the elderly last year, and it was in a hall away from the residents... A couple of the residents in their 80s 'escaped' from their area, and were babbling at me and several people I was with. One said to me 'Hello, I'm from the moon!' I'm Alma, I'm a moon child...' then she was grabbed by a carer who hastily whisked her away.

I'm glad I'm not the only one who thinks that the photos on Facebook of the elderly sick people in care homes sitting in front of a 'painting' they did (that looks like a toddler did it) is bloody weird and wrong.

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