Why do we (as a society) do this?

[Zoopet]

So I've just visited my Mum.(stage 4 Parkinsons)
She's in a very good care home and the staff are great.
She had another collapse during the week and was taken to hospital but tests revealed nothing and she was discharged back to the Care Home.
When I visited this morning she asked for the toilet and after the hoist was used and she had to be completely washed and reclothed due to horrendous diarrhoea I was asking myself why do we do this?
It's a miserable existence for her and due to her Parkinsons she has zero quality of life.
She's still convinced that her partner has gone off with someone else( he died from covid last year)
and we have the same conversations every visit.

No dignity just a terrible physical and mental decline.
I just feel utterly depressed.
I hate visiting but will continue to do so but God it is truly awful.
Just wanted to vent.

I have an elderly (nineties) relative in a care home with dementia. They no longer recognise family members, wear nappies, and can not string a coherent sentence together. This in contrast to their past as a highly educated, professional who played a leading role in their community. Their old self would have hated to have become the person they now are.

But that said, they seem very happy. They smile, laugh, like listening to music and eating chocolate and enjoy the interactions with staff in the care home and the other residents. So they have a good quality of life, even if they are now a different being.

They spoke about euthanasia when they were younger but never took any steps to eg travel abroad when they still had capacity and the ability to do so. They would have easily been able to organise and finance a trip to Dignitas. So my take away is that if you want that option you have to act in time.

I feel for you, Zoopet, and for her of course. We never know what will befall us.

My late mother in law had Parkinson's, it was very sad but as her world got smaller, she made the most of what she still had. Fortunately we were able to care for her at home, with help.

Degenerative neurolgical diseases are awful.

I'd agree HeatonGrove. Anyone can make a living will, anyone can sign up for Dignitas but remarkably few people actually do it. And indeed the message of Still Alice and other similar works is that a life that looks nothing like you thought you would want can still have pleasure and be worthwhile.

I'm sticking with my living will though. They aren't hard to do.

My darling Mum had a massive stroke in November and she's gone from fully active, living independently, out every day for a walk, bingo on a Sunday to... this shell. She's bedbound, doubly incontinent, confused and agitated. She cries every time I visit either wanting to go home or wanting to die.

It's just utterly heartbreaking to see this amazing vibrant woman reduced to this shadow of herself and part of me thinks it would have just been kinder if she'd died that night she had the stroke.

@NormaLouiseBates I’m so sorry and for everyone else in this situation

The point about “acting in time” is that you have to do it when you are still active and capable and enjoying life. Difficult to criticise people for nit doing it

@MereDintofPandiculation

The point about “acting in time” is that you have to do it when you are still active and capable and enjoying life. Difficult to criticise people for nit doing it

Yes, it's hard because you don't know it's too late until it is too late. If my grandmother had died at 81 we'd have said it was devastating because she was in pretty good health, sharp and we'd have thought she had many good years left. She actually had no good years left, but lived for another five in a state of rapid and distressing (for her, too) decline.

The trouble is with acting in time, is that it's the boiling frog analogy again. By the time everyone around you realises, it's too late. But at what point do you do it? My mum had a brief understanding that she had dementia, but she was in denial. Now it's blatantly obvious, but she doesn't know she has it. She too, will end up smiling and nodding at people, whilst being cared for by strangers. That's not a life. My older relatives who are still seeing friends, enjoying grandchildren, participating.... they have a life.

My plan is to leave life when it's still so good that it's painful to go. I want to die with regrets. Better that than the decline - for me.

I agree. I shall be shuffling off to dignitas (or hopefully our version of it in the UK by then) when I am still enjoying life and able but have the diagnosis. There is absolutely no way I want to go through what my relatives have. Utter cruelty IMO.

@hamsterchump my DF had similar, he wasn't quite so disabled but he couldn't move around unassisted, and he had the swallowing and coughing problems. He died of aspiration pneumonia, and actually it wasn't a bad death in the scheme of things, he wasn't really in pain, and there was plenty of time to say goodbye. He was ready to go and it was in many ways a relief from his condition. I'd not been aware that it was the way that lots of people with neurological conditions died beforehand, I'd imagined something much more gruesome. They did try to keep him alive in the hospital for a while but that wasn't really what he wanted.

@Livelifeinthebuslane Thank you, I had wondered what sort of end aspiration pneumonia might be and tried to read about it but there aren't many details available about this kind of thing, so it's good to hear it's not too painful. I think it's probably a mercy that his swallowing difficulties are progressing quite rapidly along with everything else.

If my grandmother had died at 81 we'd have said it was devastating because she was in pretty good health, sharp and we'd have thought she had many good years left. She actually had no good years left, but lived for another five in a state of rapid and distressing (for her, too) decline. Whereas my father at that age had another 10 years of productive life offering support to other people.

She too, will end up smiling and nodding at people, whilst being cared for by strangers. That's not a life It is a life if she is content. I would never have believed my father could be happy in a nursing home, but his mind has slowed so much that he does seem to be happy. (And his personal decision has always been that he wants everything to be done to prolong life no matter how ill he is or how much capacity he has lost)

I’m not sure I have the courage to take things into my own hands in an active way. I’ll do my damnedest to avoid being given the pneumonia jab. But at what stage do I, for example, ask for palliative rather than active care should the opportunity arise. The answer is probably “Now”. All I know for sure is that the decision is far easier to make when it’s a distant hypothetical question, when it starts to become a real and more urgent question it’s far more difficult

@PermanentTemporary

My plan is to leave life when it's still so good that it's painful to go. I want to die with regrets. Better that than the decline - for me.

At 7.30pm on 20th Nov DH would have agreed with this. At 7.40pm he had a massive stroke and is now, cognitively, not the man he was. He is in bed 24/7, has lost his speech, a lot of his understanding, the use of his right hand side and his cancer is now running amok because he can have no more chemo due to the stroke. Add to all of that the fact that he had a fall on Monday and has broken his leg in two places. He's 57 so hardly an old man. Life changes in the blink of an eye.

It does. Which is why my advanced directive is absolutely brutal. Once ds is 25 I want palliative not curative care for everything, no exceptions. Ds turned 18 a week ago and my advanced directive states that if my mental capacity for decisions is lost for more than a month, there are strict limits on what the doctors are allowed to do. My advanced directive has been discussed with my GP and is scanned into my medical record. I'm not pissing about. I've seen too much.

There are still no certain guarantees but it should at least restrict the saviour instincts a bit.

That was intensely rude to post that. I'm sorry. It wasn't intended to be rude but it was certainly thoughtless.

My DF had a massive stroke 4 years ago and has expressive aphasia, is bedbound, unable to speak or walk, and doubly incontinent. It took 2 years before he recovered understanding of what was being said to him. I can visit and chat to him and he responds with a smile or pulls a face. For someone who was so physically active and articulate all his life he has no real life now he just exists. The care home staff are so caring with him and you can see that they're very fond of him, but I wish he'd died when he had his first stroke.

We would all want to be bumped off by a caring relative but we can't be. The law must change, and I am part of a campaign. I spent many hours at the bedside of a relative who was just a shell, no speech, no comprehension, no dignity. That person would have hated knowing what they had become and the temptation to use a pillow was very strong at times.

Totally agree. DM has recently had a massive stroke and has been left bedbound and completely incapacitated. She has zero quality of life, and zero dignity. This was a very proud and private woman.

When the Dr spoke to me I actually asked her why on earth she was keeping her alive to prolong such a miserable existence. The Dr thought me a terrible daughter. I think it is wrong.

Nota when my dad had a stroke he appeared much less incapacitated than your mum but I could see that everything in life that he valued had gone for good even though he didn't know it. At 88 he liked playing bridge, driving, newspapers and crosswords, witty conversation (on his terms) and being the competent one in his relationship. None of that was ever going to be possible again.

The hospital hadn't spotted that his symptoms had got worse since admission and that he was eg unable to start off the process of lifting a cup to drink, so he was sitting there slowly dehydrating until I arrived. Because he was posh and would respond with flowery set phrases they thought he didn't have any confusion or language difficulties when in fact he was barely communicating.

He was admitted on a bank holiday Friday and I saw him from lunchtime on Saturday. There was a top consultant on over the weekend and we started to discuss a light touch approach - humane and helpful. Then there was a new consultant on Tuesday morning. He swept into Dad's room with the team and gave a loud enthusiastic pep talk from the end of the bed about how it was a small stroke so Dad would be home soon (I'm sure it was small on the scans. The effect on Dad was not. His girlfriend was 94 years old and demented, so he was not going home).

I spoke up and asked that if Dad had another stroke or an infection, could we discuss less active treatment? I wouldn't have done it in front of dad but it seemed my only opportunity. I thought i was being very reasonable. The consultant reacted as if I'd been found holding a pillow over Dad's face. He didn't pull me aside and ask what I was thinking or what had led me to this, he just blustered. It took him another 3 weeks to agree that we were moving towards end of life, and it still took a very senior nurse at the right moment to prevent inappropriate treatment from the medical team.

I don't know what the answer is. So many families seem poised to guard against the team 'giving up' on their 95 year old crumbling relatives. Frankly I find it difficult but I have to remember that my opinion , that better a week early than a day late, and that quality of life should be more than 'still eating' , isn't everyone's.

Thank you for sharing Permanent

YANBU

There's so little that people can do to achieve their wishes if they would want to go sooner rather than later. DM has an advance directive - only pain relief, no artificial feeding, but despite advanced dementia she's physically not too bad so lingers on despite no longer knowing where she is, not weight supporting any more and often being anxious (so far as we can tell, she's now been non- verbal for a month).

She has a PhD and her intellect and a sense of being useful were absolutely central to her sense of self. When she still had capacity but after diagnosis she tried to kill herself twice - once with a paracetamol overdose and once by not eating for two months. But here she still is and I can't do a thing to help her other than sing her old favourite songs, when she isn't wailing too hard to hear them.

It's very hard. We can make an informed choice to put our pets to sleep to give them a dignified end but not our relatives.

I think we should be able to decide long before we get ill if we would want to be euthanised and at which point, and then I think we should be able to sign off on that decision every year. Even with advanced directives it can be ignored, one of the carers at my Dads home was telling me a fellow relative who had stated that they did not want to be peg fed when they were unable to swallow, when the time came the family disagreed and they were peg fed and continue on. As someone who doesn’t want this (to the point that if there is an afterlife I will come back haunt the fuck out of the person who overalls my wishes) this utterly chills me. The carer said she hated loosing a resident, the problem is they only see the person as they are now, not the Mum or Dad from your childhood who would have hated ending up here, and they just want to keep them alive at all costs and don’t understand these people are dying.