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.

YANBU. My Nan had dementia and now my mum has early onset dementia. I'm terrified as all the females on that side have had dementia
My Nan used to say "I'm done. I've done everything I wanted, I've lived and now I'm just waiting to die"
It seems so wrong when you wouldn't leave a pet like that

I’m with you 100%. My Nan has had dementia for years but it’s recently got worse. She’s now in bed 24/7. She’s being spoon fed and drinks from a toddlers cup. She’s asleep 95% of the time. She’s just lying there,totally incontinent,covered in sores and being cleaned up by carers and my poor parents. What the hell is the point? If her old self knew she would end up like this she’d have jumped off a cliff. This evil illness robs its sufferers of any dignity they ever had. I’m currently having dreams about her dying most nights. Every morning I’m calling my mum and every morning I hope she’s going to tell me that she’s gone. If I could I would give her something to end her life. I know what you mean about feeling guilty for feeling the way you do but you shouldn’t. No one would let an animal suffer like this. It’s horrific to see anyone go through this and even worse when it’s someone you love. I will never believe in life at any costs because it’s inhumane. Laws in this country should be changed. Thinking of you

@Dita73 this is what I dread for my mum, she has advanced dementia but isn't bed bound yet. There was an outbreak of Covid in her care home earlier this year and they lost half their resident's, my mum had it but she recovered. Her friends husband died of it in the same care home and she said he literally just went into a deep sleep and died. I couldn't help but feel this would have been so much better for my lovely mum.

There are things worse than death...........

@lollipoprainbow your post is heart breaking, I am so sorry.

Why is wanting what is best for our loved ones, so difficult?

@lollipoprainbow- I am so sorry for your lovely mum. One of my grandmother’s ended up like this and died slowly over 6 years of dementia - she was so miserable and there was nothing we could do. The other grandmother was fiercely independent - in the last six months of her life she started losing her memory and called me up to say how depressed this is making her feel. She always had a great fear of ending up in a care home. “Luckily” for her she fell, broke her hip and died.

We are all different people with different ideas and wishes about death. We regulate our assets post death via wills - I think it is much more important that we should have a say in how we are treated medically in old age and how we wish to die etc.. - I really hope it becomes the norm that everyone states their wishes well in advance of old age. I am very clear, for example, with dementia running in my family that I do not want to end up in a home. I would want antibiotics etc refused if I have dementia. My dear father on the other hand is very clear that he wishes to stay alive for as long as possible. When we have dementia we no longer have capacity. It is really important as a society that we talk about this more openly. Modern medicine should only keep people alive who want to be alive in a certain state. People can decide for themselves in advance even if they do not have a trusted person they have given a medical power of attorney to. It should always be about what the person in question would have wanted.

YANBU. My mum had dementia when she died four years ago. She had no quality of life.

I felt exactly the same with my Nana (my GP’s brought me up from age 7). She had dementia and it was progressing to the point she was in a care home as she wouldn’t allow herself to live with me and my girls once she started needing help wiping after the toilet (that was her line).

She got a chest infection and died very quickly and quite unexpectedly and whilst for us the shock was horrible, I am now grateful in many ways that she was spared the dementia getting worse and her losing all the things she loved.

My Dad is 88 and has dementia. Watching him slowly decline physically and mentally - he is totally incontinent (urinary) now and has recently taken to wandering about and peeing in places other than his bathroom (which he has to physically pass in order to do so) - he has 4 carer visits a day and one recently found him outside when she arrived "looking for the toilet".

He no longer knows who I am, confuses my brothers and nephew, thinks they live with him and now doesn't know my mother is dead (she died over 4 years ago).

He is so distressed and a shell of the man he used to be - he was a coal miner and to see this once proud man in this state is hideous.

So no, YANBU - I hate to admit it, but I have begun wishing for a sudden heart attack to take him so that we don't have to witness even more deterioration.

My FIL had no quality of life for the last year of his life and you’d be prosecuted if you subjected a dog to some of the things he had to go through.

The home and Drs were so scared of legal action that at one point the poor man was being traumatised four times a day for antibiotics to treat an infection. It was horrific to see.

YANBU at all and I think anyone who has watched a loved one decline and suffer has felt the same. It's awful, and I'm not even sure how much a change in the law would help as someone with dementia would lack the capacity to make that choice.

However

My mum isn't suffering exactly - no pain, still knows people, still likes food and chats - but most things she enjoys in life have gone forever, there is no chance of her recovering. Of course I want her life to be over. Why on earth would I want anything else?

I see posts like this one and worry a bit - no disrespect to this poster who I'm sure loves and wants what is best for her mum but someone who is basically content and not suffering, still finds enjoyment in simple things, isn't someone I think is better off dead. I don't know what the solution is but we have to find a way as a society to allow people choices and dignity while still acknowledging the inherent value of life IMO.

Having lost both my grandmothers to dementia you are absolutely right in your thoughts.
It's such a cruel and undignified way to live.

Huge condolences to everyone on this thread who has lost their loved ones to this horrific illness.
I lost my Mum in March & you are certainly not being unreasonable in your thoughts.
We’d grieved for years & years with Mum as slowly things declined, she couldn’t use a phone, she couldn’t leave us voicemails, she didn’t know who we were, she became incontinent, she couldn’t do anything for herself. We lost her slowly & painfully.. we also lost her literally (she became a great escape artist!) & would leave the house & get terribly lost, we had numerous calls from well meaning neighbours & strangers returning her home or saying they’d found her. Finally having been discharged from hospital with a broken ankle & completely incontinent we made the heart breaking decision to put her in a care home. Then came Covid. She survived the year with no visitors but then just as we were allowed to visit she declined. The care home were amazing & we spent a week sitting with her, listening to music, reading & chatting to her.. I often describe her last breath as peaceful & finally she was in control again. It was dignified & we were grateful.
I won’t lie, 7mths on, of cause I have huge waves of guilt at times & feel terrible thinking of her in the care home for a year on her own, but we couldn’t have planned for that.

I was recommended a book by the funeral directors & it really helped me.
“We all know how this ends” by Anna Lyons & Louise Winter.
I’ve since given copies to friends who’ve not discussed the subject with their elderly parents & it’s really helped them.

Completely understandable. So sorry OP.

I have it on both sides, and if I get it I would want to be gone sooner rather than later.

We should extend the same compassion to humans as we do our animals.

My gran (mums mum) is currently in a nursing home. She has brain cancer and is on her way out.

She has really deteriorated this last week, she in bed, incontinent, can't eat drinking a little with support.

My mum keeps saying I want her to go now, she has no quality of life whatsoever and it's heartbreaking to see her, just a shell of a woman. However the guilt of my mum wanting her to go, is making her feel like a bad person - it's not nice to want your mum to die.

I feel it would be a kindness for her to go now, I keep telling my mum not to feel bad, it's just that she doesn't want her to be in pain anymore.

It's such a difficult time.

My mum had a stroke last year. She is paralysed on her dominant side and can only say "yes", "coffee" and "tea". She is a prisoner in her own body and my poor dad is like her warden. It has destroyed Dad and I wish she had died. Every day I wake I hope she's died in the night.
She was such an active, lively 74 year old. It's so cruel

I completely understand.

Thank you again to everyone who has replied. In so many ways we are lucky - finances are ok to keep mum in a really good place and as siblings we are all on the same page.

Today mum was admitted to A&E, the saying it out loud on this thread and the support helped me to articulate myself and not to feel guilty or embarrassed.

She’s back comfortable in her care home rather than stressed in hospital being subject to unnecessary, intrusive tests.

Love to all who are struggling and thanks for the kind messages.

@Spidey66

My mum died of cancer and suffered terribly in the end. I wanted her to die as she was suffering terribly.

💐 exactly the same for me. I got quite irritated by doctors suggesting more treatments/surgery/chemo, when she was clearly terminal and needed to be allowed to die in peace.

It is very distressing to see a loved one suffer. I still have nightmares about it, years on.

OP YANBU.

My beautiful mum passed today. I am sad that we will never see her again but rather this than watch the inevitable decline and distress. Again thank you to all who sent kind words.

I am so sorry for your loss.
You have my deepest condolences and I hope you will find peace with her passing.

Have a non Mumsnetty hug and remember we are here all times of day and night for a handhold or a comforting pat on the shoulder.

Dementia is exceptionally cruel. My gran became very distressed most of the time as hers advanced, we were told she also had cancer that would not be treated due to her declining health and we were finally told it would only be around a month. Then she carried on for over a year after that diagnosis. It was incredibly difficult for everyone. I don't think there was one member of our family who didn't verbalise that she'd have preferred it to be done with. When she did die it was sad but honestly we had all lost her somewhere over a five year period as she forgot us completely. It was gutting.

I'm so sorry. I just read your update. . Focus on your memories of better times.

I've only just seen your thread and read through your posts. Your love for your
Mum shines through.
Without minimising it, or being disrespectful, it's what people of my parents' generation would call a 'happy release'.
I really feel for you. It's not easy losing a parent.

My husband feels exactly the same way about his mum. He can only say it to me, not his dad.

YANBU I’ve prayed many a time that my grandma goes to sleep and doesn’t wake up. She is a shadow of her former self, doesn’t know any of us and is wasting away in her bed in a care home, absolutely no quality of life, she has been laid in her bed for 2 years it’s heartbreaking . She has had an amazing life but is now 97 and so poorly.