Wanting someone you love to die - sensitive trigger warning dementia and quality of life

[BewaretheIckabog]

Today my mum has had a bad turn.

She has advanced dementia but we have been relatively lucky so far, she recognised us, was pleased to see us, lost in her own world, wandering physically and mentally but generally comfortable, well-cared for without pain and rarely stressed or agitated.

She is declining and today I said out loud that I would rather her die than her condition deteriorate further and her suffer anguish. I have seen dementia where people become really distressed. There is no hope of cure or improvement.

My AIBU is whether it is unnatural to admit it and to feel guilty for feeling this way. I know many on here say they would support a dignified death but the idea of choosing that for someone other than oneself feels off kilter.

I strongly believe that if an illness is terminal and there is no hope then why prolong the agony. Why can't we do for our loved ones what we do for our beloved pets when there is no hope.

I have literally just come off the phone from a friend telling me her mum had died.
When I said how sorry I was, she said 'Yes, well...' and we both agreed that her dying peacefully in her sleep was actually a positive as she too had advanced dementia.

My mum also has dementia, although she is still at the stage of knowing she isn't right and being very distressed about it. The only way is downhill from here, and I would give anything for her not to suffer any longer than necessary - to suffer any more at all, to be frank.

YANBU. It is an awful disease I would not wish on anyone.

You don't need to feel guilty at all. ❤

It's a peculiarly horrible way to experience grief, in tiny bits every single day, sometimes for years before they actually die. Until you've already said goodbye in a hundred different ways - the last time they say your name, the last time they recognise you at all, the last time they even acknowledge another person is in the room.

All that, and then they die, and you have to try and grieve it again when by then, it often feels like relief, so you get a hefty dose of shame with it too.

It's awful. I've done it 3 times now with my grandparents, including being a carer for one of them, (my chances of making it to old age without dementia are, apparently, genetically "yeah, no chance") and it is fucking horrible and exhausting and it can make you so angry and bitter.

My heart goes out to you. Give yourself a break, literally and metaphorically - you're grieving all the time, so be gentle with yourself. And when she isn't here any more, allow yourself to be relieved - for her and for you. That's okay. You don't need permission. Nobody would choose that for someone they love, nor would they choose to witness it themselves, and relief is normal.

A painless death is the last kindness we can offer to our animal companions when there is no hope of regaining health. I have PTS several dogs over 30 years, and am a little distraught that my adored DMIL who has suffered 25 years ill health and now dementia cannot expect the same quiet slip into infinity.

No, my whole family expressed similar feelings about my grandparent towards the end.

Being alive in that condition was the last thing themselves would have wanted too. They had (in lucid moments) made clear their desire to go and we all hated that their body was letting them down.

I totally hear you OP.

My mum had dementia, she went into a care home, she wanted to come home but her needs were too high, doubly incontinent, massively anxious, barely able to walk.
She was unhappy and we had lost the real person. She caught COVID and was dead in 3 days, in a lot of ways it was a blessing as it released her from the horror of dementia.
Otherwise I think she may have gone on for a few years deteriorating further and anxiety increasing.
Don’t feel guilty [heart]

@Thatsplentyjack
It really was awful to watch. Every visit she would get more agitated because she couldn't find her mammy. For the last 2 years, she didn't know who we were. I was actually relieved when she told us at the end her Mammy was in the room😪.
I always believe she came and got her😪😪

You shouldn’t feel guilty at all. I suspect in a quite short space of time human beings will have the opportunity to specify for themselves how they wish to die, well in advance of any serious illness.

I've cared for 3 family members with dementia (2 vascular and 1 alzheimers), so I know in spades how you feel. And the way you are thinking is totally normal and only wanting what's best for your mum.

Sadly we don't legally have this choice yet, but if anyone else could see the absolute terror, confusion and paranoia they have to deal with every day, people would understand how you feel. Literally they can think everyone they see is trying to harm them in some way, either a stranger trying to burn their house down, or you as their loving caring family member are trying to poison them with their medication. In anyone's eyes peace has to be better than spending your last time on earth terrified.

@Aurorie11

My mum had dementia, she went into a care home, she wanted to come home but her needs were too high, doubly incontinent, massively anxious, barely able to walk. She was unhappy and we had lost the real person. She caught COVID and was dead in 3 days, in a lot of ways it was a blessing as it released her from the horror of dementia. Otherwise I think she may have gone on for a few years deteriorating further and anxiety increasing. Don’t feel guilty [heart]

@DoesHePlayTheFiddle

No, it's not wrong, unusual or harmful to hope people will die when that's their best option.

My mum was bedridden, full of sores, and not fully mentally competent but not so far gone that she didn't know what was happening. She was in pain physically and mentally. She asked us to help her die - we couldn't do that. There was no hope of improvement but she had to go through it - why? When she passed it was a welcome end to her suffering.

My grandma was in the same state. While she could still speak she begged us to let her die. I would have. I would have helped her, if I'd had the means and the courage.

My mum died last week. She had a horrible life, was anxious and paranoid all the time, but still seemed to be in good shape physically and we expected her to go on for years. I’m still processing my emotions but gratitude that it didn’t go on longer is definitely very strong. We had the emergency call and I rushed across the country to be with her, and then we spoke to the doctor and she made it sound like it was actually something quite treatable and my overwhelming emotion when I heard that was disappointment that she may have recovered from the illness and carried on with her dementia getting worse for years more. My father (who’s religious) keeps saying how it was a blessing from god that he took her then, which drives me up the wall - whilst I’m glad it didn’t go on longer, if god had wanted to give her a blessing, he could just have taken her before it got so distressing, and why isn’t he having mercy on all the other poor people suffering with dementia. This sort of nonsense is one of the reasons I’m an atheist!

@scarpa Thank you!

Is death still the greatest taboo? The fact I want this support on an anonymous Internet forum is because it feels too awful to say in real life.

My dad died 3 years ago. He’d had Alzheimer’s and vascular dementia for about 4 years at that point, and had lived in a nursing home for 2. He recognised us the last time we went to visit; he tried so hard to make conversation but in the end just held my hand tightly and rested his head against mine while my children played and danced around and the sun shone in through the windows. He died peacefully in his sleep a few weeks later. I’ll forever be thankful he went when he did, and for that last visit.

Op people who have lived with this (me) and looked after patients with it who don't know where they are, we should have assistance dying programs.
If agreed before! It's inhumane and they are so so vulnerable, in homes, in hospital!! Everywhere.
Let's ask to end life with terminal illness in a humane and kind way!

No, not at all unreasonable. for you, and your mum, and for everyone else on this thread caring for a loved one with this disgusting disease.
My mum died with Alzheimers', vascular dementia and 'parkinsonian traits'. It was horrific. We watched her disappear before our eyes. A decade of mourning her loss over and over.

My mum already had horrible anxiety and depression and I could see her just beginning to move into dementia (couldn't follow the plot of a book any more, sometimes thought her parents were still alive) and then she got covid and died. I miss her terribly but I know that she would not have wanted to live this year in a care home, getting worse, and with me unable to see her because of restrictions. A merciful end in its way.

My mum was never treated right in the care home because she constantly went in all the rooms looking for her Mammy. One time I walked in and a staff member was shouting at her.
I swear to God I was tempted to wait outside when her shift finished.

Such a cruel disease. Motor neurone of the mind but less sympathy or understanding unless you've experienced it. I feel the same as you and watching my mum's suffering made me draft an advance statement and directive. I will do everything I can to stop them treating me and extending my suffering.

I am so heartened by the poll result. God give you strength to get through this.

I totally understand. My mother was unrecognisable as her former self when she was suffering with this. Coming downstairs in her nightie and then pulling it up above her stomach and exposing herself; at one point she pulled a wardrobe down on herself; I would rather die than end my days like that.

[quote BewaretheIckabog]@scarpa Thank you!

Is death still the greatest taboo? The fact I want this support on an anonymous Internet forum is because it feels too awful to say in real life.[/quote]
I think it is - my husband's mum spent her last days in a hospice after a decade of cancer and a few minutes after she died, he took this huge deep breath. I will never forget the hospice nurse putting her hand on his shoulder and saying "Feels better, doesn't it? It's over now.".

And he tried to deny it immediately - because what monster feels better after the death of their mother? - and this wonderful, no nonsense woman interrupted and said, "Nope, don't. I see this every day here, people take their first deep breath in months, and every single one is relieved because the waiting and watching them get worse is over. That is NORMAL. So don't pretend you're not relieved. You can be gutted AND relieved. That weight being lifted doesn't make the one coming any less heavy." And she marched off to make us a cup of tea.

He talked about that a lot in the months after - that he didn't feel able to admit he wanted it to ne over to anyone except me. And so many of his friends admitted they'd felt the same in similar situations - long illnesses, dementia etc. It's just not everyone has a wonderful nurse to tell them it's okay and that you can be grieving and relieved at the same time.

No my lovely you're not unreasonable. My amazing, wonderful, funny, loving uncle (aka surrogate Dad) passed away yesterday morning and I'm so relieved that something else got
To him before the true dementia decline, although he still did endure a few weeks it was nothing compared to what he would have had. To see someone you love descending into fear, frustration and confusion is heartbreaking for you and, in their lucid moments, for them. Sending you all the love and strength in the world 🤗 ❤️ x

And then my sister developed it. Would phone me at 6am wishing me Happy New Year, constant phone calls when she would hiss and call her neighbour (who was nothing but a total saint towards her) a bitch and so on.
So my mother and sister went this way ... I worry about it constantly.
OP, I didn't mean to detract from your post - I totally get where you are coming from. Don't feel guilty.