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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Would you want to live with little quality of life?

140 replies

Isthebusstillrunning · 06/08/2023 20:38

I work in dementia care, and yesterday was in a nursing dementia home. The entire home smelled of faeces, a large number of patients were bedridden, had to be spoon fed baby food, doubly incontinent, could no longer communicate. Basically just being kept alive.
There are residents shouting and wailing out loud all day long 'help me, help me, I want to go home, where are my Mum and Dad'. All day.
There are some that are still very physically mobile but their minds are completely gone, there were some ladies who used to be nurses or carers themselves in their younger days.
Residents would try to go to the toilet on the floor, sexually and verbally assault other residents and staff, strip naked in public rooms, and so on.
I had a pounding headache by the end of the day. It turns people into overgrown toddlers in a way, having to constantly stop residents from touching things they shouldn't, going into rooms they shouldn't, throwing food.
Some of the permanent care staff were quite abrupt and short tempered, however it's an incredibly demanding job for little over minimum wage, and they're often pressured into working ridiculous hours. I don't think 12 hour days should be the standard, it's too much.
Anyway, I always read people saying that as soon as they start to lose capacity, or lose their independence, they're off to Dignitas, or will just end their own lives some way.
I look at these residents and others and I think, well what happened to them all? Did they ever consider doing that? Perhaps it's something that people say but understandably could not bring themselves to carry out.
It was just heartbreaking though. What do you do when you know you'll only decline?

OP posts:
Wingedharpy · 07/08/2023 00:32

CopperSeahorses · 06/08/2023 22:48

I nursed my husband through cancer then a massive stroke, the stroke robbed him of him if that makes sense. He was non verbal, his cognition was greatly reduced and he lost the use of the right side of his body. Because he had a stroke his chemo was stopped and the cancer was savage. He absolutely would not have wanted to live like that. The stroke doctors wanted to send him for rehab but I fought to get him home where he died a few weeks later. I am sure he would've wanted the stroke to be more thorough and to have killed him because his last weeks were unfair and cruel. We'd been able to have those conversations because we knew his cancer was terminal from the outset and I do feel guilty that I couldn't do more for him. I promised him I would fight to get him every treatment possible (for the cancer because he wanted to beat that) and just as he had the chance of a medical trial the stroke happened, I believe I failed him.

On the contrary @CopperSeahorses - you most certainly didn't fail him.
You fought for what you knew he would he would want for himself in the circumstances.

Condolences on your loss.

Bandyarsia · 07/08/2023 00:32

GardeningIdiot · 06/08/2023 23:31

A DNACPR isn't signed by you, but by a doctor, @Bandyarsia. My GP wouldn't give me one (quite reasonably given my age/health). I have an advance directive but don't hold much faith in it being followed.

I think it should be easier don't you @GardeningIdiot ?

I honestly dread the thought on lingering away like that for years.

LuckyPeonies · 07/08/2023 00:45

I think there should be the option of advance euthanasia directives for those who want it, to ensure a peaceful death once the person with dementia is no longer aware, able to function, and has no quality of life. That would allow everyone who does not want to live like that to escape gently, and with dignity.

LoobyDop · 07/08/2023 10:11

It’s making me quite angry, reading lots of posts saying “I don’t want to live like that”, and then others saying “it’s fine, they have some quality of life”. It’s not for anybody to decide on someone else’s behalf that existing without awareness, control or dignity is acceptable. Thinking like that is the reason we’re in this miserable mess.

Xrays · 07/08/2023 10:31

LoobyDop · 07/08/2023 10:11

It’s making me quite angry, reading lots of posts saying “I don’t want to live like that”, and then others saying “it’s fine, they have some quality of life”. It’s not for anybody to decide on someone else’s behalf that existing without awareness, control or dignity is acceptable. Thinking like that is the reason we’re in this miserable mess.

Exactly.

There’s a film / book called Me Before You that tackles this so well. Yes it’s a bit twee but (spoiler alert) the man in it has an accident and ends up in a wheelchair paralysed from the neck down. His carer / love interest tries to show him how wonderful his life can be, and they do a lot of lovely things together but in the end he still decides to go to dignitas and dies because it isn’t / wasn’t the life he wanted, despite others thinking it was possible for him to have what they perceived to be a “good life”. As someone with disabilities I really relate to that. It’s patronising for others to assume what constitutes a good life for someone.

DuesToTheDirt · 07/08/2023 21:02

In reality at what point does dementia leave a person just a shell?

When you can't recognise people, I'd say. If your husband, or your child, comes to visit you and you think they are a stranger, you are no longer living your own life.

Badbudgeter · 07/08/2023 23:13

LaMaG · 06/08/2023 22:36

What about life insurance? Wouldn't that invalidate it? You'd have to make your family very clear about it in case they were expecting a pay out.

My life insurance pays out for suicide after two years. I’m sure all policies are different though.

Iwasafool · 08/08/2023 10:07

Isthebusstillrunning · 06/08/2023 20:41

I just think it's interesting because so many people say they will do it, but there is an ever-growing population of care home residents. Maybe the will to live kicks in.

Talks cheap but facing the reality might be very different. A HCP I know worked on a covid ward through the whole thing. A retired Consultant came in, it became clear he wasn't going to make it, his age and severity of covid apparently made it impossible. He demanded he was taken into ICU, it was explained to him that there was no hope, offered his ipad calls to say goodbye to friends and relatives.

Apparently in his working life he had advised many people to stop treatment as their case was hopeless but when faced with it himself his view drastically changed.

Iwasafool · 08/08/2023 10:17

ForestGoblin · 06/08/2023 22:24

To manage expectations - living wills won't stop you from being kept alive. Post-Shipman, medics take NO chances and will err on the side of preserving you in hell.

I worry about my parents. Hope to God they live long lives and drop down at 90.

I'm killing myself at 70. Two score years and ten is all I need.

I'm 70, fit and healthy. I want to stay well and live long and see my GC become adults. I don't think it is just a numbers thing.

headstone · 08/08/2023 21:06

My experience is the older someone gets the more they seem to want to carry on, no matter how bad it gets. You don’t hear often of older people suicide and older people do no take the risks if young men in particular.

MavisMcMinty · 08/08/2023 22:20

headstone · 08/08/2023 21:06

My experience is the older someone gets the more they seem to want to carry on, no matter how bad it gets. You don’t hear often of older people suicide and older people do no take the risks if young men in particular.

I remember a 94-year old patient who was APPALLED to be diagnosed with an incurable cancer. “Why me? Why me?! I’ve never smoked, it’s so unfair!”

Scattery · 08/08/2023 22:52

We looked after a dementia suffering family member at home. At times, the house reeked of bodily fluids and that was just from one person - and I can assure you we all kept on top of their needs. It was just relentless double incontinence.

I don't want to sound callous, but if dementia sufferers can't consent to assisted dying, why do we then assume they can consent to life-prolonging actions?

When our family member developed UTIs, the GPs immediately prescribed antibiotics. This prolonged life (if you could call it "life" rather than simply existing). Months later, they went through utter agony (peritonitis, but they couldn't tell us...) and died anyway. After days.

Dementia really is just awful and a creaking, patchy social care network makes it even worse.

DuesToTheDirt · 08/08/2023 23:36

I don't want to sound callous, but if dementia sufferers can't consent to assisted dying, why do we then assume they can consent to life-prolonging actions?

That's a very good point.

Iwasafool · 09/08/2023 18:12

I don't want to sound callous, but if dementia sufferers can't consent to assisted dying, why do we then assume they can consent to life-prolonging actions? Isn't it that they can't consent to either but that leaves a doctor in a difficult position. They might think someone would prefer to die but legally can't do anything about it as far as I know. I have LPA for an elderly relative so I can say no antibiotics and agree a DNR on their behalf. I find the doctors very supportive and they will talk through the possibilities.

minipie · 10/08/2023 15:41

if dementia sufferers can't consent to assisted dying, why do we then assume they can consent to life-prolonging actions?

Isn’t it assumed medically that people want to live, unless there is a piece of paper saying otherwise? An unconscious car crash victim can’t consent but emergency doctors get on with life saving treatment nonetheless.

I think this assumption is necessary but I also think it should be made easier and simpler (and more binding) for a person to override it.

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