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Original poster

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:
Badbudgeter · 06/08/2023 23:03

Ive worked in a nicer home and it’s still shit for the residents. Wearing pads and shuffling or being wheeled from bedroom to lounge and back again for toileting. It’s not much of an existence.

A loss of self and just shouting out unable to feed themselves. It is terribly sad I’ve also had elderly relatives with dementia, lovely, kind, proud people who would of been horrified at the shells they would become.

I think we should be allowed to choose our end. For me it’s about quality of life rather than quantity. More countries have introduced euthanasia/ physician assisted suicide over the last few years and I’d hope it’d be an option in this country at some point.

Original poster
Isthebusstillrunning · 06/08/2023 23:07

Withdrawal of treatment does seem the better option.
The staff try their best, it isn't their fault. Most homes cannot afford the number of staff required, they are on the legal minimum.

OP posts:
Dente · 06/08/2023 23:11

For myself I 100% agree. I want to live a life of quality not necessarily quantity…. That means if my mind is gone I do not wanted admitted to hospital for urosepsis… in fact don’t even treat the UTI just keep me comfortable and let me go with dignity. I would not want life prolonging treatments and my family know this.

The problem is that most people are not aware and haven’t had any discussions about anticipatory care and families often want to prolong their loved ones lives and often defensive medicine is practiced.

IMO we should be realistic, People in their twenties should be thinking about what they want to do if their quality of life was severely impacted by their health. It would actually improve efficiency in the NHS and protect resources as well as empowering patients to decide. Healthcare is optional after all!

inky1991 · 06/08/2023 23:15

Well mainly, going to Dignitas is fucking expensive. Not everyone has thousands of pounds to spare and is willing to fly somewhere else to end their life. Especially if they're already old and doddery by this point.

I do know where you're coming from though

Badbudgeter · 06/08/2023 23:24

XenoBitch · 06/08/2023 23:03

I don't think euthanasia for things like dementia is ethical. You can lack capacity to go forward with something like a medically assisted death. There have been cases where people with dementia were restrained and euthanised.
The only real alternative is not pulling out all the stops to save them.... so a withdrawal of treatment rather than euthanasia.

I think in those cases decisions were made when they had capacity that they would like to end their lives when care needs reached a certain point. They then lack capacity to change their minds. In the recent Dutch case both the family and the ethics committee were in agreement that it had been the right thing to do.

Withdrawal of treatment sounds very nice and easy in theory but was that not the Liverpool care pathway that was withdrawn as being cruel? Are we withdrawing food/ fortifying drinks/ liquids or just medication/ antibiotics?

Personally I’d like the decisions I make when I have capacity to be respected. It’s not mandatory and if that’s not for you fair enough. In countries like the Netherlands these decisions must be made whilst you still capacity and in conjunction with your doctors. Its not like people are bumping off grannies all over the place.

ForestGoblin · 06/08/2023 23:25

matchamate · 06/08/2023 22:28

You say that but if you get to 70 and are still enjoying life would you really?

Show quote history

Yes. I don't enjoy life THAT much now. It's a chore and the anxiety and drudge outweighs the pleasure.

Bonfire23 · 06/08/2023 23:28

This thread just prompted me to do an advanced directive I've been meaning to (my mum had early onset dementia)

https://compassionindying.org.uk used this

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.

ForestGoblin · 06/08/2023 23:34

I hate that everyone's tied to the happiest clappiest ideal of life. Life is crap for a lot of people - just let us opt out fgs.

Bonfire23 · 06/08/2023 23:39

I've filled in that form I posted and asked my dad to sign it and now got "why now? Are you ok? What's wrong?" Like I'm having a mental health crisis

Jesus Christ Grin
NOTHING. That's the entire sodding point of doing it now...
next time I need a witness for something I'm asking the cat

Vintagecreamandcottagepie · 06/08/2023 23:42

I haven't read though the thread, only the first page. I know rhe thread is really about the suffering a d plughr kf the patients, but I just wanted to say that I'm so sorry you had (have) th experience these things happening and that we should be so very grateful for the traumatic work that you do for very little reward.

mumda · 06/08/2023 23:42

the true measure of any society can be found in how it treats its most vulnerable members

I wouldn't ever say that keeping people alive once bed bound and completely lost in the dementia world that we are being kind. The options though are unspeakable.

Vintagecreamandcottagepie · 06/08/2023 23:42

Goodness those typos! Suffering and plight it should be. I've only had one glass of wine too...

nolamesallowed · 06/08/2023 23:48

No

ForestGoblin · 06/08/2023 23:49

mumda · 06/08/2023 23:42

the true measure of any society can be found in how it treats its most vulnerable members

I wouldn't ever say that keeping people alive once bed bound and completely lost in the dementia world that we are being kind. The options though are unspeakable.

No they aren't. They're a blessing.

user9630721458 · 06/08/2023 23:54

@ForestGoblin Are you ill? Don't answer if you don't want to, I just felt worried about you.

CKL987 · 06/08/2023 23:54

A lot of people don't realise they are getting dementia so can't just pop off to Dignitas

ForestGoblin · 06/08/2023 23:56

user9630721458 · 06/08/2023 23:54

@ForestGoblin Are you ill? Don't answer if you don't want to, I just felt worried about you.

Perfect health as far as I know. I just don't share the "life is a blessing" point of view. It's a slog at the best of times. And when trapped in your own mind as it rots around you?? Beyond a curse.

mumda · 06/08/2023 23:57

ForestGoblin · 06/08/2023 23:49

No they aren't. They're a blessing.

Show quote history

To kill humans without consent it murder.

There needs to be consent. And many can not consent.

Do we set up consent in cold blood and sound mind? Do we go ahead and kill them when they can no longer withdraw consent?

I am in favour of euthanasia but I don't know how we implement it properly.
I do not want to live when I can not read or take part in society. I do not want to be turned and fed and changed like a baby.

ForestGoblin · 06/08/2023 23:58

mumda · 06/08/2023 23:57

To kill humans without consent it murder.

There needs to be consent. And many can not consent.

Do we set up consent in cold blood and sound mind? Do we go ahead and kill them when they can no longer withdraw consent?

I am in favour of euthanasia but I don't know how we implement it properly.
I do not want to live when I can not read or take part in society. I do not want to be turned and fed and changed like a baby.

Show quote history

Would you rather consent to euthanasia now, change your mind at 80 but have it go ahead anyway.

Or consent to euthanasia now, have that wish totally ignored and be fed and changed but not like a baby because babies are usually loved and cherished while the elderly in that state elicit disgust and horror?

user9630721458 · 07/08/2023 00:00

@ForestGoblin Oh right, I get that. Frankly I operate mostly on behalf of my kids and my cat. I always thought I'd take a long hike through the Himalayas at 70 and maybe not come back! This thread makes me wonder if that's realistic as a plan, however.

Orders76 · 07/08/2023 00:07

I think your picture is blurred and overwhelmed by such an awful place.
I've had health problems from a young age, and always scared of others using my issues or putting me in a vulnerable place
Yes, most ppl want to live.

ForestGoblin · 07/08/2023 00:11

Orders76 · 07/08/2023 00:07

I think your picture is blurred and overwhelmed by such an awful place.
I've had health problems from a young age, and always scared of others using my issues or putting me in a vulnerable place
Yes, most ppl want to live.

Not at any costs. I'd prefer the balance assumed we want to be treated at least as kindly as dogs.

Somanycats · 07/08/2023 00:13

We need to start respecting the decisions people made when they had capacity. If they change their mind and still have capacity fair enough. If they have lost capacity they can't change their minds. That's not neglect or spite. It's simply that we don't have the ability to make capacity related decisions when we have lost capacity.

mumda · 07/08/2023 00:20

@ForestGoblin I don't know. My one grandmother was a prisoner in her body, the other a prisoner of her dementia. It was effectively a prison for both, but only one of them realised.
My husband's aunt was in a home with dementia and I stopped visiting when she could not leave her bed. They cared for her very well, attested to by how long she lasted but she had zero quality of life for the last couple of years.

I have joked when I can no longer read, I will be done with life. I suspect I might not feel that way when my sight deteriorates to the point of there being no point in me holding a book.

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