Would you want to live with little quality of life?

[Isthebusstillrunning]

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?

The home sounds terrible and I think you should report it to CQC. I have an elderly relative with advanced dementia and the home she is in is nothing like that.

Of course some residents need spoon feeding but no bad smells, good food but of course some need help to eat and maybe pureed food, no going round naked.

It sounds like neglect to me.

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.

I looked online and the home is rated 'good' (however that doesn't necessarily paint the full picture)
There was not adequate staffing.
Staff were quick to react, as soon as they saw the lady undressing they would go and assist her.
Hopefully there are homes with better staffing.
I did feel bad for the residents, because it must be so hard to sleep with constant shouting and screaming, even if it isn't their fault.

What a depressing thread!

I agree 12 hour shifts shouldn't be the norm. And that care home sounds shit.

There’s probably no good time to do it; you might think oh I’ll do it next month and then you deteriorate faster than you think. We should absolutely have the right to euthanisia or a living will situation here though - shouldn’t have to go to Switzerland

With dignitas (or whatever) you’d have to go before you needed to, wouldn’t you…so you’ve either got to cut your life short while you’re still well or miss the chance and by the time you start to decline you wouldn’t have capacity to do it. It’s a horrible thought either way.

I think the cruelty of dementia is that it creeps up on people, so there isn’t a realisation (for most) that their mind is going; rather a steady decline such that the mind never gets to have the flash of realisation that would allow someone to plan a dignitas type escape.

It was indeed. I have been in a few care homes but this was the highest needs one I'd seen.
I really don't know why homes do 12 hours.

Yes, I guess that's the case. It is terribly cruel.

I agree with PP that this home should be reported as what you say in your post is completely unacceptable.

That said, my DF has Alzheimers, is in a care home where he is well-cared for, and has absolutely no quality of life. He is frequently distressed, agitated and asking for help.

I would most definitely not want to exist like that, and have been giving a lot of thought to what I would do if I ever received a diagnosis of dementia or similar. My DSis and DS who will have PofA when the time comes, are aware of my perspective.

The issue is timing. At the point you can go to Dignitas you have capacity and probably live a decent life. However you don't know when you'll 'switch' into a life you don't want. And usually by then you've not got capacity to go.

I'd welcome a sort of living will along the lines of if XYZ happen please kill me. I understand there's lots of practical issues with that though.

I predict we will see more people refusing treatment for medical problems in later life.

This scares me. I always think I would end my life rather than end up like that but having watched family recently it seems to happen so gradually and then the person has lost the capacity to decide. But obviously you can’t just end things the first time you forget something. Dementia is a heartbreaking disease.

I think it was really due to staffing issues. The existing staff were stretched to the limit, some residents definitely needed 1-1 staff but I imagine there isn't the funding.
You get residents going in others' rooms, even though they aren't doing it of sound mind. It isn't fair to the residents all round.

It was upsetting to learn about Fiona Philips recently. It must be awful to have known this person with full capacity and then to essentially know them as someone unrecognisable.

This is my worst nightmare tbh. I'd rather be put out of my misery and for my family's sake too. Glad to hear other's experiences are better though. But I don't know how it's possible wrt to ascertaining mental capacity to decide these things.

This. If those suffering with dementia could see how they'd end up I'm sure most would consider ending their lives but it is often a slow decline and people obviously then lack capacity and ability to make massive decisions.

I've no idea why GPs don't have those in the state like the op describes on whacking doses of valium. Not ethical perhaps but neither is leaving people screaming and distressed.

No. The prospect absolutely terrifies me.

My dad and I always said the same, weigh up options and decide what you want to do with your own life. His fear was dementia or motor neurons disease. He said he would take his own life if he felt he didn’t want to go on. He now has dementia, undiagnosed as he will not go to GP and they won’t do anything unless he goes to them and says something is wrong. Luckily he doesn’t realise what’s happening and so now his worst fear has come true but he isn’t in a position now to consider dignitas etc.

for 4yrs he’s been getting worse and is now struggling to walk for more than 10mins, eats food that goes down easily, spends most days in and out of bed and has zero memory. I’m being called all day long and through the night, he insists on having money but keeps losing it, I’ve got POA and he thinks I’m spending his money, gets angry very quickly and taking it out on everyone. My mum now sleeps in another room and still wakes her up, she looks like she’s aged 10 yrs. I dread this getting to the point you have mentioned, ina care home. it’s giving me so much stress and anxiety.

I have an advanced directive that I've given to my GP stating I don't want antibiotics or other treatments when I get dementia. So hopefully I'll die of pneumonia or something if I'm at that stage, rather than be kept alive by antibiotics.

I'm sorry about your Dad xx

No, it's awful. I think I would rather go before I wanted than risk spending any time like that, but it's so difficult with something like dementia because often by the time it's diagnosed, it can be argued the person is lacking capacity to make the decision to end their life via Dignitas or something.

Yeah, I don't know if Dignitas would accept people with a formal diagnosis, even if still lots of capacity?
Also, doesn't it cost thousands? I suppose that's not possible for everyone.

I think it's down to a few things.

• how would you kill yourself? Switzerland? Needs money and planning. Tablets? Razor blade? Not appealing.
• at what point would you decide to do it? For most of us there is hope that things will improve. And if your mind goes, you might not have the ability to actually make such decisions.
• yes, there is a will to live, I think. It's easy to say, "Oh if that were me I would end it," but would you really, when it actually is you?
• and I think people are, fundamentally, scared of death. Leaving your loved ones, not existing any more - that's frightening.

All very true.

No definitely not.

You have just described my mam in your first paragraph. It’s horrific. If I was asked to sign a form asking if we could end her pain and suffering, I would sign it. An animal wouldn’t be left like this.

Her home is nothing like what you describe though.