Why do we (as a society) do this?

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

@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.

@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.

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.

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.

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.

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

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

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.

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.

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 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.

And more actually - I’d go so far as to say if couldn’t eat and no longer wanted to or would be aware enough to eat if not want to be fed or anything like that either.

Couldn’t agree more.

I’ve seen post of very very unwell people continuing to be treated for unrelated conditions when they already have no quality of life left and wonder why on earth we do that.

I’d like to have some kind of living will designed to allow me to die when I reach such a stage - eg. If I get an infection I’m to receive palliative care only.

My Mother lived till she was 93 and my Aunt till she was 94. Both of them should have died a decade earlier, because the last decade was not great and the last five years for both were terrible. They did both still live at home with a child caring for them and carers coming in as well. Women in my family often live till in their nineties, it’s not a new thing and has been happening for generations but always in poor health due to very bad bones, hyper mobile joints and mechanical issues so it doesn’t kill them but they are in a lot of pain. As a child I was taken to see a very old lady who was a distant relative and almost 100. She was blind and had to be picked up as she couldn’t walk at all and every movement caused a small whimper. She felt my face and I remember at that time as a 12 year old girl thinking I don’t want to end up like this. She would have been born in around 1880 in mainland China, what a life she must have had.

There's a history of dementia in my family and tbh when my time comes I'd much rather be able to choose my end.

I know how you feel OP, my DM is in a care home, she no longer knows who any of her family are let alone anything else. She has zero quality of life and I know she would hate her existence if she knew about it. As horrible as it sounds, I keep hoping that this won't carry on for years. I'd be quite happy for her to just go to sleep one night and not wake up, because all that is coming is further decline to the point where she won't be able to walk, talk, feed herself and that is hideous to think about.

@lollipoprainbow so sorry you are in this situation too. My mum also had Covid early on before vaccines and survived. She was my best friend and the loveliest, kindest person you could ever wish to meet, we were so close. I miss her every day as the mum I have now, although alive, isn’t the same mum I knew. She would have hated to know she would have ended up like this. She’s on palliative care now so if she has an infection or anything at least she will won’t be going to hospital. I just hope she doesn’t last a few more years like this. It is death by a thousand paper cuts, each time I visit a little bit inside me dies. I sit holding her hand and stroking her hair and wishing she would just take a last breath and that would be it. I don’t think she’s suffering at least which is something but I just hope when the end comes it is quick and peaceful. Sending to everyone in the same situation.

Nothing but sympathy here, Op.

I had to put Mum in a nursing home towards the end of her life as there was no space in any of the local hospices and the technicalities of her cancer care/symptom management meant she needed nursing care round the clock. The whole experience was nothing short of traumatic - largely due to inadequate staffing and my Mum just being depressed and anxious, she was just pleading for someone to just knock her out of her misery. 4 years on and the memories are so awful I have just mentally shut them down. Has made me completely rethink my stance on places like Dignitas....

I have a Living Will lodged with my local hospital and my GP. It says that if I have lost my marbles they must not treat any illness but let me pass with just pain relief. If I do still have my marbles then I've requested treatment for illness.

If it ever comes to going into care then luckily I take lots of meds and if they ever think I need to go into care I'm going to ask for time to get used to the idea, and in that time I will swig my meds all in one go ....

Actually I'm thinking back to my DGF in hospital after the car crash in his 90s. At the time DM was horrified that the nursing staff weren't hand feeding him and said he would have died had the family not been there. I'm now wondering if that was meant as an act of kindness rather than understaffing, as the nursing staff would know the likely long term outcome of things.

@Turquoisesea identical situation to me, five years in a care home, I visit every week but she is usually asleep and when she does wake she doesn't recognise me. We were so close it's heartbreaking. There was Covid in the home last year and they lost half their residents, mum had it but got better. I wish she could be at peace.

I have two close family members with dementia (different variants). If I had the faintest idea I was getting it, I’d be off. It’s not living, it’s existing.