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?

My dad moved to a nursing home 5 months ago with advanced dementia aged 83. He is mobile but cannot communicate any needs and requires help eating etc. I am traumatised to realise he is one of youngest. Most residents are in their 90s and have been there 6 years or more. One lady has been there 17 years...she is 96. It's truly horrific.

It’s very sad. I think it’s because their bodies are so pumped full of drugs it just keeps them going and I don’t understand why we do it to people. I watched my grandma suffer for years and it was awful

Years ago, pneumonia was known as 'the old man's friend' as it usually led to a relatively peaceful end of an elderly, infirm, patient's life.

My ex's gran is 91 this year and in one of these. They have a lot of activities but a lot of them look like the same things nursery age children would do. Ex's gran doesn't have dementia, it's also sheltered accommodation, so (no professional here btw) I wonder why they don't do more appropriate things with them? Colouring in pictures of Elton John and Elvis Presley seem odd. Correct me if I'm wrong.

My MIL is in care with mixed dementia. She is given what I reckon would be $10k to $20k in medication every year. Why? To what purpose? She would be furious about it if she knew.

The care homes are a business that's probably why? Unless there's a waiting list for the room? It's disgusting.

Not sure about the overweight bit. I tend to notice the opposite in care homes - most elderly, as in the over 75 group, are slim/petite. Not a lot of obese people make it past 75, and definitely no overweight people past the 80 years mark. Your vital organs just can’t support excess weight past a certain age. And most old people have very small appetites.

The use of metformin, statins etc keep people alive.

This has been my experience too.

Can you share more about an advanced directive please? Ive not Leeds of these before. Do care teams HAVE to comply with them?

The care home should not have "forced the issue" by trying to make you feel guilty. They should have just respectfully confirmed with you that they should follow what was written in the notes, especially if that was what the relation requested while of sound mind. They deserve a complaint, but I can see it would be difficult without making you look awful.

My FIL is 86 and def not petite - maybe 15 to 16 stone and 5 ft 11 - he also eats well but likes good stuff -salmon twice a week, coupe of veggie meals twice a week, veggie chilli etc, eats veg, limited cakes and sugar - also walks a mile into town and back every day, ( does still drive) - does all his own housework apart from ironing ( which he has done) - no carers. Still fully compus mentis -intelligent guy still keeping up with news and tech - I know it’s luck but it can also be lifestyle for many too .

My Mum is in a wonderful care home.
She's gone 94 been there over 3 years.
Despite many illnesses she's carrying on going and l think it's got to be the care given to them that prolonged their live . It's socially good for them , they are in a routine , regular medications , Dr and District nurses on hand . Good food , regular drinks and entertainment.
It's like a hotel with help. I think your person must be in a good care home@rockrollerpud

It's a fair question. First of all she lived in Ireland which has good policies/supports for care home financing, and the money never runs out! In mum's case the "Fair Deal" applied which meant that 80% of her income and 7.5% per annum (for a max of three years only for the family home) of her capital assets ( savings) were used to pay the fee. This would apply no matter what means she had, even just State Pension.

The asset charge on the family home can be deferred until death/house sold etc. In the meantime the house can be let, and the income is not taken into account for the 80% income levy. Income Tax is payable though, but tax credits for NH fees, at the higher rate of tax are available to offset the liability.

So if a person had income of 100k, 80k would be used towards the fee. If the family home was valued at 1million, then a max of 225k would be used for fees no matter how long a person lives. That can be deferred until death also. Other capital assets are charged at 7.5% pa until death.

So when mum died, the value of the family home was reduced by 22.5% and paid to the Government and that was that, more or less. She still had to contribute 80%pa of her income and 7.5% of her savings pa all along though. Quite fair IMV.

You can select any nursing home you wish, private or public and you will qualify provided the nh can meet the needs. There is no distinction made re costs in either home.

It's a long time ago now, and I may have some info wrong but that's the gist of it.

I have a friend in his early eighties with dementia. He is doubly incontinent, non verbal, spends 85% of the day with his eyes shut. Has to be spoon fed pureed food. He doesn’t recognise his wife or children.

The doctors say he probably has another ten years…

I think medicines which people take are keeping them alive much longer than their body and minds actually can cope with!
whilst you have good health and good mind take the tablets to prolong your life but if that’s stops and you are waiting to die stop taking the medication and let nature take its course. (my medicine I mean like statins etc)

my aunty has dementia and in a care home been in 3 years now and the decline is horrible and she could have many more years of it

I assume that we would simply die at home

Do read the excellent book on this called ‘Being Mortal’ by Atul Gawande. Its context is the US , but much applies to the UK also.

Sadly that might not be your decision. Say , for example, one of you was in absolute agony and the other called for an ambulance…

I was just about to post this. Not so anymore, unfortunately for some, like an acquaintance of mine whose 90 odd year old relative fell and hit their head. It wasnt known how long they had laid on the floor. Blue lighted to hospital, subdural haemorrhage, aspiration pneumonia.
Now 2 years on, in a nursing home, immobile , non verbal, tube fed. Absolutely tragic 😥

Sounds like exception rather than the norm though. But good on him - sounds like he’s living his best life.

We have friends in their mid-80's - no children - lived a fantastic life, still playing golf, driving, had a decent social life. Their plan was like yours.

Several years ago, one of them had a major stroke, and has been in care ever since. Their spouse still lives at home (despite various ailments including dementia), and spends each day in the care home sitting with their immobile partner. Such a sad end to their wonderful life, and one I know they hate.

I hope nothing similar happens to you @OldJohn, but the best laid plans can fall apart.

I am finding it very hard going with two relatives in this situation. I just want their distress to end.

We made the decision to put our beloved dog to sleep recently. He was very old and had been fine up until the last six months of his life. It was the biggest final act of love I could give him. As he gently drifted off at home, wrapped in his little blankets, I felt so relieved that I’d managed to give him such a dignified and pain free end. I miss him like mad but I draw such comfort from knowing I’m timed it right. He couldn’t advocate for himself and he needed me to make that call for him. When you know it’s time - you know. He had been very well cared for and probably his body would have battled for another six months. For what? So we could watch him in pain, unable to walk, distressed, struggling.

I am finding it very hard that care homes and doctors seem obsessed with preventing natural death in patients with zero quality of life. I can’t reconcile this. And the longer it goes on, the more I am realising that many people who get over age 80+ don’t die of a sudden catastrophic medical event, their bodies just slowly slow down. But this sort of slow decline is the sort of decline doctors can and do just stop by over treating.

My MIL is like that - doubly incontinent, in a wheelchair, almost blind, but she is of a robust farming stock and her internal systems - heart, stomach etc - are functioning super well, so she can, potentially, last for another ten years like that, if they continue to treat her infections.

This was not how she wanted to end, and she has no quality of life. Yes, she has DNR, but there are so many interventions before that, and there is nothing we, as a family, can do to stop them except refusing flu jabs.

We feel like we are keeping her hostage in this world. In the past, she would have slipped away and joined her beloved husband, as she wanted to after her first stroke. It's heartbreaking to see.

Why do you think that?
Loads of people on the thread have listed problems - do you have older relatives in long-term care?