Care homes make me think people never die

I am not trying to be goady when I say that I simply don't recognise these scenarios at all after my mother's time in six or seven care homes in as many years. You have your two years, then your number's up (made one care home who wanted Dad to do an annuity a bit dodgy under those circs). So I say this: if you don't want your parents to hang around in the aforementioned states, come to Surrey! They will polish them off pronto.

Compulsory seems a bit extreme. We have voluntary assisted dying in place here now, but many care homes refuse access for their residents anyway to keep them going longer.
https://www.theage.com.au/national/victoria/aged-care-homes-deny-terminally-ill-access-to-voluntary-assisted-dying-20260503-p5zt8m.html

I too have a parent in a care home, late 80s LB Dementia, frequent hallucinations and no idea who anyone is / what’s going on. Very frail, falls approx 3 times a week (never broken a single bone) and has been there 5 years - very low quality of life, it’s absolutely heartbreaking.

I read somewhere that as long as an elderly person is medicated for the conditions they have and are being looked after by professional medical staff, they can live (read stay alive) for a very long time. So that seems to be the difference, if you aren’t struck down by an unknown disease like heart attack or stroke before you get to your 80s ish and you end up in a care home you could be there a while. ☹️

@MauveLibrary

I totally agree.

I think that there needs to be a sensible discussion about what alleviating suffering in the dying looks like. I think that some of the assisted dying push is about people witnessing terrible deaths and wanting to avoid that. And some of it is totally avoidable if we accept that prolonging the dying process is cruel and unnecessary and empower medics to follow strict compassionate protocols aimed at alleviating suffering that can be explained to relatives.

I would love to be able to sign a form in advance to say that if I have dementia and am incontinent I want no antibiotics if I contract pneumonia and to have that respected, but I saw with my grandma that this is not what happens in many cases.

I think that it’s hard on relatives when they don’t get clear guidance or understanding about medical care. I saw on my grandmother’s deathbed that it produced a sort of madness in my aunt. My grandma took over 3 weeks to die and it was clear to me and my father that she was dying - she was nil by mouth and really a living corpse. But some days she would rally very slightly - in the grief and stress of her vigil and the awfulness of watching this slow passing, my aunt kept saying that she felt my grandma would get better and make a recovery. It became quite difficult seeing one another, because we were hoping for a peaceful death and my aunt was hoping she would cling to life, despite the fact that she had been saying for months that my grandma would have hated the indignity and had no quality of life. Watching someone die and accepting the finality of that is really hard. It needs to be taken out of families’ hands too.

Thats harrowing...and traumatising for you and the care assistants to have to witness intractable suffering. Palliation should be supported by enough medication to keep a dying person comfortable. Its unforgivable that the GP in this case refused to sign off on a syringe driver.

We absolutely need a grown up constructive discussion in this country about the reality of care for the elderly and those who are dying...and a way to support dignity and peace in the dying process.

I realise this is distressing to have to think about but if I or my loved one were in agony and suffering a long drawn out undignified death I would want there to be room for the people caring for me to top up medication as necessary and if doing so happened to cause respiratory failure then so be it...it is not in anyones best interests to be left to suffer.

There should be protection for healthcare staff to be able to make a treatment decision based on the best interests of the patient and a mechanism to support a patient who wants to die and be relieved of suffering.

Blame Shipman. Everything revolves around covering your arse now. No one wants to take responsibility for withdrawing treatment in case it ends in death. Doctors no longer prescribe adequate doses of pain control in case it depresses breathing and leads to death slightly sooner than it may have occurred naturally. This results in a horrible situation where people are actively treated even though they're dying, but not given adequate palliative care drugs so they suffer whilst all this is going on. I've had relatives argue with me regarding morphine administration and was I sure it wouldn't kill them, all whilst my patient cried and writhed around in terminal pain in the background. The case which led me to quit nursing involved someone being aggressively treated for chest infection and then dehydrated and starved to death (peg insitu, but they couldn't tolerate many fluids). It was so harrowing the care assistants were crying whilst we cleaned and turned the resident. I begged the GP to stop the antibiotics and prescribe a syringe driver, but he refused. It took a month for the person to die. They had no competent relative to advocate for them. I tried and failed. Management just went with the GP and lacked the experience, wisdom or insight needed to handle things better and back me up with the GP.

Palliative and elderly care is as rough as fuck in this country. We need to have proper grown up discussions around death so relatives stop threatening healthcare providers and healthcare providers need a mechanism in law whereby they can put the patient's needs first and foremost and not automatically go to arse covering first and foremost.

I don't have kids, nor a partner, although I suppose I could meet someone but can't imagine living with someone again, and with varying disabilities I don't get out much to meet someone new. I do however have a large stock of medications, many of which are easily fatal in even relatively small amounts, so I think I'd go for that option before ending up in a care home / reliant on full care and not just the bits and pieces I need at the moment. I'm only 53 but my body seems to think it's much older (the irony of many people telling me I only look like late 30s / early 40s!) so I can't see my being even the not great level of health I'm at now into a great old age.

This is the thing. It becomes quite cruel to leave them to fend for themselves with just different carers popping in and out .

Its utterly grim. Surely any GP can clearly see that continuing with this kind of medical intervention is not in the best interests of the patient...its inhumane and just prolongs the natural dying process. Palliative care to keep a patient comfortable is fine but its appalling that the GP then insisted on Abx...futile and cruel and just heaps more suffering on the patient and their family.

One thing I meant to add earlier is some people saying how grim and awful care homes are and how it strips people of their dignity. Well perhaps but having seen my DPs living at home for a year longer than they really should have, the alternative isn’t much better. I organised a cleaner and they had a plethora of council carers, but without someone their to manage it ( I live an hour away and towards the end DH and I were going up twice a week) both they and the house were falling into a state of disrepair. The carers constantly changed so didn’t push too hard for either DM or DF to wash them, I would put on the washing when I was there but there never seemed to be many of DFs clothes in it. I never knew what I would find when I arrived- fly invasion, blocked toilet -I or DH were the only ones dealing with these things.

Their once clean and tidy house was grubby and in ill repair by the time they finally went into the home. We did what we could- DH was amazing considering it’s not his DPs - but ultimately we have our own house and jobs and lives to live.

At least in a care home I know they are being looked after and I can visit DF as his adult DD, sadly DM is a bit past that.

They won't agree to this due to arse covering behaviour. It'll be referred to the GP and they'll have to try to persuade them to stop antibiotic prescribing. I tried to advocate this for a terminally ill resident - literally in the dying process - and the GP wouldn't hear of it and still insisted on antibiotics via PEG tube for the unfortunate person.

Do you have POA? If this is the case you could insist your Mum isn’t treated next time she gets an infection. The home must ask for your consent when the flu and Covid vaccines are given so you could decline those. A DNR is only for when someone has a cardiac or respiratory arrest so unless this happens it’s worthless.

It should never have gone this way.

Treating endless conditions that at any other time in history people would have died of natural old age causes has not been progress.

There are so many factors to this though, a family member pushed for every medical intervention possible when another family member was end of life to push off grief.

The family member was also the type to sue and threatened it more than once. What can medics do?

This is dreadful!
I really think that there needs to be government intervention with the way very frail, end of life people are dealt with, it’s so undignified and cruel.
The money involved with care homes is huge and certainly has a significant impact on treating the elder like battery hens.

I’m there now!

Hopefully, compulsory euthanasia will be law by the time we are old enough to need it

This is a huge topic for me and my husband as we have 3 elderly parents with extremely limited quality of life being kept alive by constant medical intervention. My DM is in a home, has been doubly incontinent unable to even sit up, unable to speak read watch TV for 18 months. Yet they pump her full of oxygen and intravenous antibiotics every time she gets another chest infection or another bout of pneumonia. I've begged them to let her die as has my dad she has a DNR but apparently that's irrelevant compared to the money doctors, nurses carers cleaners etc can make off her ongoing misery.

An answer to the potential problem of ending up like that, and if s so, what can be done?

An answer to what?

Perhaps they’re hoping for an answer !

I don’t understand why people are bothering to say that they want quality over quantity and don’t want to languish for years in a care home with dementia, Surely, that’s just stating the bleeding obvious?

That’s fine if they’re physically fit and have their marbles!

During my days as a care assistant, our residents lived well into their nineties and at one time, we had a 106 year old and a 103 Yr old. They live so long as they have 24 hour care and are seen by the doctor regularly.

Arthur Clough got it right!
"Thou shalt not kill; but need'st not strive
Officiously to keep alive."

More people will be making DNRs