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.

My grandmother had dementia - about 4 years before she died she broke her neck.

THere were many times when I thought it would have been so much kinder for her if she'd died when she fell - there was some guilt in that, but wanting her to stay was IMHO the more selfish feeling

I have a parent with Parkinson’s. I wouldn’t wish it on anyone. I feel like you. Sending love.

I felt the same, and TBH have never felt guilty about it.

My DM had Alzheimer’s for about 15 years all told (she was unusual) and for several of her last years she was doubly incontinent, no longer recognised any of her family, had no clue about anything, and could no longer hold any sort of conversation, let alone join in any activities.
What sort of a life is that?

And I know her former self would have been horrified to see what she’d become.
When she did eventually die, at 97, I have to say it was a relief to all of us that it was finally over. Though of course there was a certain amount of sadness, but I honestly can’t imagine what sort of person would wish anyone to go on - or seek to prolong their life - when they’re in that sort of state - zero quality of life, and, no matter how kind the care (and it was) with every shred of dignity stripped away.

Might add that by a certain point in her dementia, when she was already past 90, it was agreed with care home staff that there should be no ‘striving to keep alive’. TBH, in the circumstances IMO it would have been verging on cruelty.

I am so very sorry OP. I wondered if you’d seen the Alzheimer’s Society Talking Point forum where there are many people going through this

YANBU.My mum had Alzheimers and it was heartbreaking and horrible to watch her declining.I used to think that it would be better if she got another illness rather than potentially watch her progressively getting worse and not recognising any of her family.She was diagnosed with cancer and it was the cancer that took her from us in the end just 3 months after the diagnosis.I felt I was grieving for the loss of my mum a second time.

100% yanbu, unanimous agreement so far. My lovely, vivacious grandma has dementia. I am hoping she goes before it progresses for her and my suffering mum's sake

My grandmother had dementia. It turned a kind, caring woman who was taking the pensioners to the seaside on coach trips when she was a pensioner herself into a swearing, howling woman who hit and bit members of staff and her own family (including me, aged 20).

I loved her, but I wished the end would come for her so she could be at peace.

Thank you everyone- I know there are a million people going through it.

It’s also lovely to remember Mumsnet and AIBU can be a supportive space.

Love to everyone who is dealing with this.

I’ve written it in my will for what it’s worth, and my DH knows how I feel. When they’re old enough my
Kids will know too.

If I ever develop dementia I will be going to dignitas and ending it all on my terms whilst I still can. The last thing I want is my kids visiting me and me not even knowing who they are. Heartbreaking for all concerned and I’d just rather not go through it or put others through it.

I think how you feel is completely understandable.

For all those commenting on here who are pro the choice of allowing assisted dying / choice etc . A website called Dying Matters is a great one to join.

My nan had Alzheimers and I remember my mum being relieved that her suffering was over now as she had been in the care home for 3 years getting worse and worse.

My mum died two years ago, quite young at 68 after a sudden illness. I remember being shocked but also oddly relieved that her worst fear about being diagnosed with dementia never came to fruition.

We wouldn’t allow an animal to die in the way we allow for some people.

I have always said that if I am diagnosed with a degenerative illness such as dementia/MND etc that I will end my life before it gets to the point that I lose the capacity to do so. Since the law does not yet exist for me to be put down I will make it happen another way.

We spend too much time hoping for life at all costs, forgetting that those costs include suffering both to the individual and those around them.

I'm not sure I've seen a completely unanimous YANBU on the voting system before.

I have a relative with terrible terrible dementia and I've always been quite open with friends that it would be better if he was dead, and would have been much better if he'd died of an illness he had 5 ish years back.

I never considered people might be judging me for it because it seemed so clearly cruel and frankly inhumane - we wouldn't allow an animal, even on a farm, to suffer like that. Assisted dying needs introducing.

And to add, scientific progression in the treatment of illness can be a wonderful thing. But in so many instances this progression has meant that we are able to extend life far beyond the point where the person should have died naturally.

Sometimes we just shouldn’t mess with nature.

I’m not talking treatable illnesses here, but illnesses such as dementia/mnd/Huntington’s and others which are a known death sentence and for which there is no cure.

God OP I feel for you. YANBU. My dad died of Alzheimer's, and had recurrent UTIs and bouts of pneumonia. Each one involved my mum having to sit with him in the Heath hospital in Cardiff for hours waiting to be seen with their pathetic non existent dementia pathway, surrounded by drunks and drug addicts and rugby injuries (it was always on a Saturday night). They'd then pump him full of antibiotics and send him back to his care home....until the next time. Hell. By the end I was begging them to let him go, but they said they couldn't.

My heart goes out to you. I think it's completely understandable to feel like this, none of us want a loved one to suffer. My MIL died 5 years ago. She had been diagnosed with bowel cancer but actually died of an unexpected heart attack after being admitted to hospital with an infection. She had completed her second course of chemo and we could all see that it wasn't going to work for much longer. DH and I still say openly to each other that while it was a horrible shock when she died our last memories of her are happy ones and we are grateful for her and us that she was spared a slow, lingering death.

Thank you for writing this, OP, it is relevant to me at the moment and I appreciate reading this empathetic discussion of a difficult matter. I am sorry you are going through this.

No judgement from me. Watched my dad decline with dementia and though he still knew us and loved seeing us, the majority of his waking hours were confusion, upset and depression. He knew something was wrong but couldn't understand what or remember why my mum wasn't there. It was dreadful to witness. I had already lost him, so while I was upset I couldn't be there with him when he died, I was relieved that he wasn't suffering anymore.
Do you have power of attorney OP? If so you can consent to him not being treated aggressively if he becomes ill and just made comfortable and pain free.

I’m so few steps down this road but I mourn my mam already and fear our future. And then feel ashamed.

I feel as though a little bit of me slips away with the little bits that slip away from her. And feel guilty that my thoughts are not solely on her. About her.

I’m terrified that I’m going to let her down by not doing enough. Not being enough. And by wishing away the days because I am scared for her and scared for me.

You are not alone.

Take care of yourself**@SheldonesqueTheBstard** looking after a loved one is hard.

It’s the cruelest of cruel diseases. I prayed every day that my grandmothers body would give up in the same way as her mind.

For three years it was absolutely horrendous knowing that she was scared and confused pretty much day and night.

She died this summer. It was a relief knowing the pain had gone.

I do raise eyebrows when I say it was a relief when she died but we wouldn’t let an animal suffer in the same way she did.

We really need to address the final days of Alzheimer’s and dementia sufferers in parliament. My grandmother would have preferred to have died with much more dignity than she did.

I work with with people who have dementia, families will often privately tell me that they would prefer their loved one to pass away sooner rather than later when they see what lies ahead for their mum or dad. There shouldn't be any guilt or shame for feeling that way- it is because we love that person and know what they would want for themselves. It's incredibly hard to watch the person we love be more and more lost to us and I think families suffer far more than the person who has dementia. Make sure you take time out and don't feel bad.

My lovely neighbour developed dementia and her lovely husband was devoted to her and tried to keep her at home for far longer than was sensible for either of them.

Once she was settled in residential care she ws less distressed and so he was also happier.

"She has a lovely life now. She doesn't have any worries, and whatever she needs is given to her. Who wouldn't like that?"

My neighbour is the only person I know to have been able to find a positive in dementia and I will never forget his wisdom.

OP i am so sorry, it is so hard.

My mum had Lewy Body dementia and always knew us but was very ill. When she died it was a blessed release.

We had a do not resuscitate agreement, which we felt was right.

Don’t ever feel bad it’s an awful disease big hugs x