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?

@smallglassbottle You can opt out of all the screening tests but it’s a different form for each one. It’s worth doing because it stops the letters and kits you didn’t ask for being sent in the post.
I particularly hated and resented the ‘an appointment has been made for you’ breast screening letters. They almost imply people have to attend. If I want an appointment for anything I’m perfectly capable of making it myself.

That is not what is being said. Every life is precious and being elderly doesnt mean there is no quality of life. What is being talked about is when someone becomes unwell..sometimes terminally so and / or they are facing a sharp decline in health / quality of life.

In circumstances where people are unwell / debilitated from terminal illness or cognitive decline owing to alzheimers / dementia, in those circumstances there needs to be a conversation about what that person wants in terms of their care and wishes around dying.

There absolutely needs to be a recognition that sometimes what is in the best interests of the patient isnt necessarily to continue futile medical interventions to sustain life at any cost. We need to have a better way of supporting healthcare staff to deliver effective palliative care and any medication which is needed to keep someone as comfortable as possible.

I refused any treatment for DCIs breast pre cancer last year. It would have made me a sick person for 5 years with the radiation ect. There is early dementia in my family, my mum got sick at around 40, and I believe I am a carrier as I see signs in my daughter. I sincerely hope something else takes me as I have seen that type of dementia in my childhood, bvftd.

I just used to bin the letters/test kits.

You have to phone them and speak to a human though and I really don't want to be treated as though I'm a child and do I know how important screening is etc. It gets my back up if I'm patronised like that. Why can't they enable opt out via the NHS app? Until they do that, stuff just gets binned.

How many people with cancer who say this do you know? Because it strikes me that is a very easy statement to make when it's all theoretical. I don't know a single person whose been diagnosed with cancer that haven't wanted at least some treatment, even if there comes a point when they say enough is enough.

Fil was early 70s and refused any treatment for prostate cancer. It was the aggressive type and he died of it about 18 months later. His father had died from it, but there was no treatment back in those days. Fil was quite philosophical about his impending demise and just got on with it.

Also, and more grimly, dying of totally untreated cancer can be pretty awful. Its not something we really see in the west so I think people can have unrealistic ideas about how gentle a death it might be.

I don’t think it’s a gentle death but there’s generally a timeline. A person can live with Alzheimer’s for a decade or two especially if they develop symptoms in their 60s and have no other health issues. Personally I’m not afraid of dying and I’d rather not have years of living with a poor quality of life and having to deal with benevolent ageism.

Their relatives are living with it too, for what seems like forever.

Thankyou x

Radio 4 ‘you and yours’ looked at care homes Mon/tues this week, it’ll be on BBC sounds. Apparently 25% of care homes (in England I think) are now owned by private equity, so the focus is on generating the 19% returns for their shareholders.
I think that’s obscene - siphoning off peoples’ life savings. The sooner it’s properly regulated, the better; no wonder so many people have an uneasy feeling that the decisions being made to prolong life, aren’t necessarily in the clients best interests.

It reminds me of when happened in veterinary practice - big companies moved in, the focus switched from pet care to profit, and a Govt investigation led to guidelines which are probably not being followed around increased transparency etc. Care homes should be required to itemise their bills, at least approximately, but they won’t.

What will happen if or when house prices reduce to normal levels, ie when fewer people have overinflated assets which can be liquidated?

They'll introduce assisted dying and no active treatment for dementia patients.

Someone I know had their heart damaged with radiation for exactly the same stage as you. It’s completely affected her lifestyle.😕

That’s awful. I’m incredibly fit and active so if I wasn’t able to do my usual activities I’d be really depressed and expecting me to accept my new normal would not work. I think Doctors rarely disclose lasting side effects so people aren’t making an informed choice about their treatment.

It wasn't regulated under the Tories because the whole care home racket was very similar to landlords who charge extortionate service charges to tenants, and the Tories are the party of the landlords.

It ought to be regulated under Labour but frankly it's like they don't have the balls to do it, or if they attempt it the State/British press goes after them and pretends it's because of immigration of pub closures. It's very hard to turn it around once it's all established a certain way.

What sort of regulation would you deem appropriate?

Hard to say - maybe something like the Care Quality Commission, only not corrupt. So they actually inspect care homes without tipping them off in advance, and if they fail them, post the result within a few weeks rather than waiting eight months to do so, which was policy before (taking sure to rush through any minute improvement with indecent haste). Letting residents know when they will be visiting and letting them make comments, rather than only letting their comments go on the record if they just happen to be visiting on the day.

It was all totally corrupt under the Conservatives, a complete racket. But that's how they wanted it.

It does make me wonder now, if these care homes are deliberately keeping people alive with multiple meds (with the aid of the NHS maybe) so they can milk 1000s of pounds a month off people, (for as long as possible,) and get all the profit from any property or assets they may have.

Stranger things have happened. Exhorbitant vets bills running into 5 figures, trying to keep elderly, sick, and ailing dogs and cats alive, with procedures that make their quality of life worse, and give them no more than 6 to 12 months of extra life. Then the drilling and filling for profit that dentists did in the 1970s and 1980s, causing people to have ongoing dental problems, and a mouthful of fillings and extractions. Then the Consultant who did unnecessary procedures on womens breasts for the money. There are many more examples from over the years.

Makes me wonder what else people are conned into so the people conning them can make a fast buck! It's getting to the point where it will be hard to trust any 'professional' - or professional body - because so many of them seem to just want to make as much money from people as possible...

Certainly agree about the drill, fill and bill which was the dental procedure in the 60s and 70s! Now my teeth are high maintenance as I try to keep them.

Yep! Same here. And I know many people in the same boat (pretty much all over 50.) My DC and their friends/peers/acquaintances born after 1990, have lovely teeth. Barely a filling between the lot of them. Both my DC (in their late 20s) have zero fillings, and lovely teeth/a great smile. Always been to the dentist (since they were a toddler,) but the dentists from the 1990s onwards, didn't do the drill and fill for profit thing. I'm so jealous of my DCs and their friends gorgeous teeth!

I am too. Both granddaughters have beautiful teeth, one has a tiny filling, the other none.

I’m also in that boat- all molars with big fillings which are now coming to the end of their life 😕