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?

An answer to what?

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

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.

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

I’m there now!

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.

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?

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.

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.

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.

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.

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

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.

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.

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.

@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.

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. ☹️

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 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.

As a person who was a care home manager for 24 years I can tell you that lots of people can and do die in care homes. For every 98 year old there is a 73 year old that dies early due to illness or whatever else takes some people early and others late and then the people in the middle in terms of age (I often think life and the way it’s treated people and their response to it is a huge factor). Women live on average longer than men so that’s why there are more women. What you might think is a bad qualify of life (asleep in the chair at 3pm) might not be a bad quality of life-you’ve no idea if that person had been out that morning, or woke up early and saw a lovely sunrise and got value from that, or saw their Grandchild at the weekend or whatever. Their lives might be ‘smaller’ than yours but that doesn’t mean they don’t value them in lots of cases. Lots of them aren’t just sitting there waiting to die.

I agree we keep people alive longer than necessary in states that cause massive distress and trauma to both them and their families. I know care homes have to make money but I don't think they can be held responsible for the sole decision in keeping people alive purely for money. I've managed care homes before (albeit not elderly ones) and there's so much legislation and policies that have to be followed.

If someone becomes ill then they have to seek a medical opinion. They have a duty of care too. It's then the GP or any health professionals are the ones that are prescribing the medication and the treatment that keeps them alive. I'm not saying its right of course not, people are being kept in alive in states for years that are completely inhumane. But how do we get about it? I'm not against assisted dying but people have to consent to it. If people haven't consented to it then what do we do? Who's the one that plays God in this case in deciding when a person gets medical treatment or not.

Care homes in the right scenarios do serve a useful purpose and I've come across many good care homes in my line of work. I've seen many many horrendous situations of people living at home with four time a day care at home and completely isolated. Families and loved ones can only do so much. When elderly people were maybe cared for at home in the past, they would usually have a short illness before dying. It's completely different now. I've seen families try to care for a loved one at with advanced dementia and it's been absolutely horrendous with families completely broken.

I think it's great people taking steps to be physically active to help with old age but I'd love to see more about the importance of being socially active as well. We go on about how important it is to build muscle but it's equally important to be socially active, to have friendships and community and there are numerous studies as well on the importance on this for wellness in old age. I think it's something that is very much overlooked when we speak about being well in older age.

I understand the fear of old age and being in a care home but where are you getting this idea that being an only child with no children somehow means you're going to be abused and neglected. Not only is it factually incorrect, it's completely catastrophising with no statistics to back it up.

I've worked in Older adult safeguarding and the vast vast majority of abuse cases towards older people were from their own family members, usually involving adult children and financial abuse. I've just had a look and statistics back this up two. Two thirds of elder abuse comes from family members. Less than 10% comes from professional care givers.

I'm not denying that abuse goes in care homes and sub standard care happens but it certainly isn't more prevalent than abuse to older adults from their family members. And it makes absolutely no difference if you have family members to whether or not you're abused in a care home. Your family aren't going to be there 24/7 in a care home to prevent something from happening.

One thing I've learnt from the awful last few years of caring for my elderly parents who are literally not being allowed to die is that I will not be taking any statins heart medication anti-stroke medications anti blood clot medications. I will not be taking any of these things I would like to go with the heart attack or a stroke a normal old age not be kept in some quasi living state.

Do you not have POA for your father? If you do, you can push his doctor for a medication review and talk to them about what's in his best interest.

But if its prescribed by a doctor then of course the care home will have to give it. Do you really think they should unilaterally decide whether a particular medication is in a patient's best interest or not?