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?

No doubt, but the point I am trying to make is that we laud other countries for caring for their elderly when we put ours in homes - but putting them in home is actually what is keeping them alive beyond the lifespan they would have had being cared for at home. In seeking to avoid trauma, we create it for the elderly and demented, who are not permitted to die with any remaining dignity.

For those who say they would rather stay at home even if they are wandering the streets, please don’t do this to your poor DCs. You may think you’re independent and able to make your own decisions but sadly the world feels differently. Funnily enough every single old person I have come across who wants to retain their independence seems quite happy for that to be at the cost of their middle aged DCs lives.

I agree, this really saying the quiet bit out loud.

I know of several elderly people who proudly proclaim to still be living independently, without acknowledging the input of their adult children, and sometimes even their grandchildren in their care, nor the pressure and stress that causes.

But they wouldn’t want to be a burden, oh no.

Just as an aside, re apparent starving/dehydration - having witnessed the slow and ghastly demise of loved ones, I did quite a bit of reading around this. A dying body doesn’t require much fuel, and forcing intake can actually cause harm.

In a dying person, parts of the nervous system that govern appetite and thirst stop functioning, so they no longer feel hungry/thirsty. Also, because the body is shutting down, there comes a point where eating and drinking are no longer helpful.

The digestive system slows dramatically, so even small amounts of food can cause discomfort/nausea or be accidentally inhaled. Ditto drinking: fluids are no longer processed properly by the kidneys, so fluids can cause swelling, breathlessness or fluid on the lungs.

If someone still has an appetite/thirst and is being neglected, that's a different story, obviously. But understanding how dying changes the whole picture was very helpful to me in coming to terms with some of the grim aspects of the whole process.

My parent wandered the streets. Screaming, crying, deep in distressing hallucinations, the details of which were very distressing. Police were called many times, breaking in the house to help the parent, repeat ambulances, repeat mental health crisis intervention teams, repeat calls from district nurses late at night. The one time I refused to go, they gave a stranger my home address and I had people knocking down my door at midnight scaring not only me, but my tiny children. Dementia is no joke. It gave me a complete breakdown and I’ll never recover from some of the incidents I was forced into witnessing due to said parent refusing to care and a care home.

What hyperbole

From personal experience. Healthy eating and strength exercises only go so far. My parents were healthy as horses. In mid seventies one was diagnosed with cancer and the other with dementia. Both remained physically healthy for at least another 5 years. The parent with cancer passed quickly after a short illness. The one with dementia, is now within a care home. Their body is going strong, however their mind has gone and I know in the lucid moments definitely would rather be at peace. DNR's are in place but these only kick in during a health crisis, which they have not had.

The irrational bit was blaming the neighbour for finding her.

“I would rather live at home, dementia, naked out in the street at 2am, leaving the gas on and falling constantly then go in to a care home….
That’s fine for you but as someone who received calls from neighbours and the ambulance service when my mum was found wandering in the middle of the road at night, looking for me, or had fallen over in the street and was bleeding from a head wound. The fear is constant.
I still don’t know how she survived after setting her bed and surrounding carpet on fire due to smoking in bed. I was so relieved when she went into a care home after she fell down her stairs and injured her back. (Not too seriously)
In the care home she was in very good hands and most importantly, she was safe.

I think you'd find that they'd be less popular with their clients if they had a policy of active neglect.

Those with capacity are perfectly able to refuse medication and other life-prolonging treatment if they want to. Things get more complicated when capacity is lost but I don't think it should br up to the care home to decide when medical treatment is withheld.

My mum’s friend has dementia and she got out of her house twice - once she ended up on a motorway slip road and once she ended up alongside a railway track. The police obviously were involved. It’s such a horrible illness.

I know this topic is really upsetting to think about and to talk about. I think its important we have these conversations though. We need to confront the truly inhumane grim reality of the protracted suffering of both the elderly or intractably ill person and their families. I dont think a default position of sustaining life at any cost is appropriate.

There has to come a time when palliation should be the focus rather than subjecting someone to futile medical intervention when it would be a kindness to let that person be kept comfortable but let mother nature take its course. I know some people find this opinion very upsetting.

I’m sorry OP, it’s so hard, dementia is a game changer.

We tried to keep my father at home for as long as possible, but like your situation the dementia made him completely unstable and he eventually went into a care home for the last few months of his life.

By that stage he had no idea where he was - he did used to say he wanted to go hone, but had also been saying that previously when he was at his home, so I’m not sure where ‘home’ really was to him.

We were all traumatised from looking after him, which is why I don’t understand when people say never about a nursing home - it incredibly selfish as the family is expected to pick up the slack.

I think this is true but also simplistic. I don’t think many people would opt to have elderly relatives suffering from dementia or even just very frail living with them - the incontinence, the wandering, the fire risks, protecting everything from falls, inability to go out for any length of time are all a real issue. The pressure to be organising more medical visits to keep relatives alive for even longer when they have no real quality of life. Having jobs and kids at home whilst dealing with this is very difficult. Now people have kids later, it’s possible that this could be in play so that you are a carer whilst your kids are quite young. The reality is that people now often live a lot longer and so the potential is for a very long drawn out period of misery for all.

NICE gold standard guidelines are that for people with a diagnosis of dementia, treatment should be on a palliative basis from day 1. Which doesn’t mean giving up on life, but should imo mean being liberated from medicalisation. What really strikes me about reading old novels, which I have done a lot of, is not that people didn’t live alone ( although a lot of people were in service or had servants living with them; and a surprising number of people lived with landladies in a boarding house/lodger type setup) it is how rare and alien it was to have any kind of medical input at all. I wouldn’t go back to that, but I definitely would aim to stay away from heavy medical involvement.

I think people in the past probably died from infection or cancer. I had quite a few past relatives who just got sick in their 50s and 60s and just died. There wasn't much in the way of treatment. Now, they'll actively treat people into their 80s. Mil was offered a valve replacement at 89. This just isn't realistic I'm afraid.

I think from a philosophical point of view, people no longer accept fate and expect a lot more from life due to loss of religious meaning. Christianity teaches that death isn't a disaster as it releases you from suffering and it's part of God's plan for you. People believed this and had faith. Also, medicine didn't have that many answers or help to offer in the past. Now, people are living on antibiotics, which can keep people going for years in some cases.

more money for the care home I would assume :(

I was listening to someone talking on TV about their mother who had early onset dementia. He talked about the last couple of years of her life, where she didn't know who family were and was tube fed. It made me think that I really wouldn't want to be tube fed or indeed have any other major interventions when all it's doing is prolonging the inevitable. I will be making that clear to my NOK when I get around to doing my POA.

The problem is that care homes are money making centres and keeping people alive, regardless if it’s in their best interest or not, is really all they are interested in because filled beds = good bottom line.
My biggest angst is continuing to give very frail, elderly people statins and blood thinners and whatever else is deemed necessary in the name of ‘preventative medicine’
Now that might have been great in their 60s and 70s when heart attacks and strokes were/ are common but once you go on these meds you never come off them!
We will all die of something that’s for sure but prolonging someone’s life when it is utterly futile seems very cruel to me.
My own father is in a care home, and has been for two years. He is bedridden with dementia but the cocktail of meds he’s ( including statins and blood thinners) have definitely kept him alive and suffering a slow tortured demise which he would not have chosen for himself.
His heart is a strong as an ox.

Infections are also routinely treated with antibiotics so his ‘natural end’ is being curtailed and denied in the name of keeping him alive above all else.
He is thoroughly miserable and wishes it would all end as do the rest of us as life just seems to be on hold and seeing such a strong, clever , vibrant man reduced to a shell is heartbreaking.

One resident recently celebrated their100 birthday. The Facebook blurb proudly announced that she’d entered the home three years ago for end of life care and made a miraculous recovery.
Her poor elderly children look done in!

Modern medicine has a lot to answer for!

Pneumonia used to be the best friend of the old and frail. Now it’s cured, and on to the next , probably stroke, which if a bad one, is a living hell.

More people will be making DNRs

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

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.

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

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?

Perhaps they’re hoping for an answer !