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?

What you’re seeing here are the thoughts of those who are spending often many years of watching an elderly relative with negligible or zero quality of life being kept going through medication and other “assistance”. These thoughts are poorly understood by those who have no idea how utterly miserable a lengthy frail old age can be, and this board provides a rare space to share with others who understand.

As has already been clarified, this is not about assisted dying. It’s about the problem of prolonging misery.

Maybe you’ll be lucky. Maybe you won’t. I knew my DM had dementia years and years ago when it was still mild. The problem is, that by the time the ‘mild’ symptoms show up, you’ll most likely already be changing your mind about how you see things. My DM was, for all intents and purposes, pretty ‘normal’ when her dementia was mild. But already, then, she was failing to be able to make decisions of really understand or process things. I really hope for you that you luck out and somehow defy the odds.

Not much is ‘entirely voluntary’ in dementia care for a parent unless you literally have no heart inside your body. It’s much more nuanced than that and I know you know that too.

What is your answer to the trauma of the elder care system then? I’d like to know your opinion and point of view? Are you happy for a relative to suffer in pain and indignity for 10+ years? How would you, or do you, cope with seeing this in your elderly relative? What do you do to reduce their terror? What do you say to them when they beg you to help them die?

It's all on this thread. That said, unless you sign up on Mumsnet with a fee, you can't access other posters' threads.

Could you have said no to the antibiotics?

@Hallamule Dementia isn’t always diagnosed in the early stages. Although it was very obvious to me from my Mum’s score on the ACE test she was initially diagnosed with Mild Cognitive Impairment. I think that was offered as a sweetener as she deteriorated significantly in the next six months and then was given a diagnosis of Alzheimer’s. Mum still had a lot of insight at that stage but sadly believed that the medication she was given to slow the progression would prevent things from getting any worse. Maybe that’s what the clinicians told her - who knows.

Many people in the early stages of dementia have no insight whatsoever and then it’s too late to do anything about it.

It’s commendable that you’ve made an Advanced Directive but stating that you don’t want Covid or flu vaccines post diagnosis may not hold water if you’ve accepted them in the past.

You're so welcome. There is such a lack of empathy from a few people on here. It's quite shocking actually.

So what?

Thank so much for this post @smallglassbottle , and thank you for all the work you did as a nurse. 💞

100% exactly this! ^ Thank you too. 💞

DH and I have lost both our mums in the last few years, but only one had a good death.

DMIL94, an SRN by training, and a committed supporter of assisted dying by conviction, lingered for eight or nine years in failing health with vascular dementia, first at home and later in care. Then she fell out of bed, fractured her femur and was hospitalised on an acute geriatric trauma ward for six weeks, after which the doctors said they had done everything possible and returned her to her care home, a stone lighter, where she died six hours later.

My DM89 spent her last Saturday dealing with ants' nests in her yard and probably got a bit dehydrated. She was at home quietly on Sunday but in good spirits. I talked to her for 40 minutes on the phone, and my sister visited in the morning and evening. At bedtime, she went upstairs, cleaned her teeth and put her hearing aids in their case to recharge, slipped into bed, and away.

Horrible for my sister to find her in the morning of course, but otherwise, the exit we would all like.

We said no to the two calls from the care home, even though we’ve talked to them at length about in advance, and it’s on the notes. They still continued to pressurise. Then the GP called my husband whilst he was a few minutes off a really important meeting, he was under time pressure, and even though he explained that DMIL had zero quality of life, was late 80s and had asked many times to be allowed to die, the GP made him feel so shit abut himself that he relented. Then we felt shit about ourselves all week. The GP doesn’t care - they just don’t want to get sued. The GP actually said “I know it’s a dreadful way to live, but let’s just give them for a week or so” The system grinds you down. When it’s the 1000th conversation from a medical professional over a decade you end up just lost and broken. And then there are people like some of this thread who would likely accuse us of trying to kill people so it’s lost lose whatever. So DMIL continues to be drugged yo to her eyeballs by the care home, so that’s she’s not violent, so that they don’t have to fund her, so that she can just continue in her prison.

Could you repeat it again please. I have no time and I’m off to the care home before rushing to get my kids from school. How can I help my suffering relatives?

I agree. You see endless posters on here who have instructed their children to just dump them in a care home and not bother or for their kids not to care for them or they are somehow going to kill themselves before they become a burden (though don't actually specify "when" this and almost never happens).

If you've done a decent job of raising your kids to be decent human beings and they've had a loving upbringing, then the reality is they will be involved somehow in your care. Some parents think they can somehow create an environment where their child goes through life without ever facing stresses or hardship, but you can't. That's not real life.

I know no one (or most people don't) have kids to care for them or provide them with company in old age. And most of us will do what we can to mitigate whatever we can (conversations, wills, financial aspects etc) But the reality is, most children have deep attachments to their parents and don't just turn their back on their parents when they are elderly and vulnerable. Yes of course there are people who have genuine reasons and their own circumstances.

And to be honest I will do everyone I can to mitigate what I can for my children. But there is a lot of things that are out of my control and if I do end up frail and vulnerable, I would hope that they would be there for me. I would never expect them to do any physical aspects of care but I would hope they would advocate for me if I needed it and visit occasionally. I certainly hope that I've brought them up well enough and with enough love they wouldn't turn their back on vulnerable family members.

Agree.

They're not opinions, they are relating real life experiences

My DMIL was a qualified nurse, SRN at the Middlesex, Mortimer Street, London W1 in the 1950s. Nowadays, any school would have sent her straight to a university medical school. She was clever and interested all her life in medicine. And after 30 years in nursing, her personal view was that she would prefer to choose her own exit plan. She asked me to take her to Dignitas, while she was still lucid. I agreed. But dementia is quite stealthy and steals up until the moment of judgement while still competent to decide. Very very sadly, she missed the window. I would have taken her, eaten a last dinner, and we would have laughed our heads off, and cried too. But I would have helped her have the smooth exit she wanted. I am ashamed that I let my DH/her son stymie her wishes.

I may be a very odd person, but imo we should all be able to choose how we die.

Her life would have been five years shorter, but her last five years were not pleasant. I would not have allowed my dog to endure three weeks of such frailty.

@Ved, as a Christian, and a nurse (DMIL was both) do you have an opinion on achieving or deciding what good end of life care looks like?

Now. In full understanding of medicine's expanding competence.

I am 70. My father is 92. He remarried, a much younger woman,
very happily, and she cares for him. Their children are always helpful.

There are so many of us describing our heartbreaking lived experiences of having to stand by and watch helplessly while a loved one deteriorates physically and mentally while they are being seemingly kept alive long after all quality of life has gone.

Its inhumane abject cruelty which only prolongs the suffering of the elderly person and their family. Its a disgrace that proper supportive palliative care with appropriate comfort measures and medication isnt being made available.

There has to surely be a recognition that we dont allow our beloved companion animals to suffer needlessly so why are we still subjecting people to long drawn out agonising deaths that strip them of any dignity or peace.

Ive witnessed this harrowing appalling process several times and it was gut wrenching and I would have done anything to take away the suffering of my loved ones when they were begging me to let them die.

I am sorry that some people see this as me pushing some kind of agenda..its not. Its sharing lived experience of the grim reality of elderly care and futile medical treatment that just prolongs death and the fact that in a lot of cases the priority should be to relieve suffering and let loved ones have a peaceful passing.

Amen to your post MauveLibrary

You’ve described it so well. Thank you. 😭

I actually had to make the heart breaking decision to put my 16 year old beloved dog to sleep a couple of months ago. It was the hardest decision in the world and I ache from his passing. But I’m so proud I got to release him from his pain in a beautiful and dignified way, in my arms, wrapped in his blanket with a little sunbeam from the garden gently shining on his beautiful face. Yes my heart shattered. But I did it for him. Not for me. He’d been through enough. 6-12 months of serious decline that was only going to get worse, repeat antibiotics that the side effects from were almost as bad as the issue he was taking them for. He was bladder incontinent. We’d had him in a doggy nappy for 6 months.He

He was sad more than he was not. When he started to be unable to even go out for a little walk, I knew it was time. My grief is excruciating but he is running free over rainbow bridge - it was my last loving act. Loving them means letting them go.

I understand of course that everyone is obsessed that for humans this could be bad because they think everyone will try to bump their relatives off to get money, or just because they don’t like them. But I’m not taking about assisted dying or helping someone pass. I simply want an end to endless treatment such as antibiotics which prevent natural death from occurring. I think we are going to look back in decades time and people will say with disgust “You know, they used to make people suffer as much as possible by giving them medicines to extend their suffering.” It is utterly batshit and I don’t know why this has even been allowed to even become a thing.

Mind you - the world’s gone mad and is run by about five male lunatics so nothing much surprises me anymore.

Is this question for me? I don't know if you've got the username mixed up. In case it is for me I'll answer.

Good end of life care involves symptom relief and supportive care of the person until their death. It involves pain relief, bowel and bladder management, care of breathing and management of secretions, emotional support and helping them spend time with loved ones, hygiene care and pressure relieving measures, helping them to take fluids and any nutrition if they want to, helping them to remain in place instead of being sent to hospital. It involves giving proper doses of pain relief and sedation (in the case of terminal agitation or acute anxiety) even if this results in depressed breathing and death.

It doesn't involve repeated courses of antibiotics to treat chest infections, forced feeding or fluids, withholding pain relief in order to discourage sleeping, admission to hospital unless they have a fall and fracture something, choke etc. Endless tests and the prescribing of unnecessary medications.

Keeping people pain free is obviously a priority if they have a painful illness. Being in pain is what people usually fear most.