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?

I agree but its our best hope, plus telling everyone you know about your wishes. I do believe doctors fearing litigation is the biggest issue here. The amount of families insisting their 97 year old nanny with advanced dementia doesn't have a dnar and needs full treatment, the doctors are too scared to say no!

I know

We desperately need assisted dying to be legalised IMO

https://www.dignityindying.org.uk/

Along with, of course, good care for those who do not choose this.

Yes, that’s the trouble with suicide/assisted suicide with dementia. Once you’ve forgotten your intention to die, nobody else can legally carry out your wishes.

In my nurse training I met a GP who had tried to kill himself when he self-diagnosed the early signs of Alzheimer’s. Unfortunately he was found by someone who ignored the letter he’d left explaining why and what he’d done, was recovered in ICU, and spent the next 5 years in a long-stay psychiatric ward, becoming exactly what he’d tried to avoid.

Yo me they need care like a baby/toddler and you wouldn’t leave them to wail all day, alone and scared. No I don’t agree with ending life early, just better quality care.

I agree op. None of the politicians want to address it though. Talking about this stuff is a vote loser, older demographics will say we're trying to kill them off.

The problem is you can go to reassure someone 10000 times in a day, but with dementia they will forget that you have reassured them a few minutes later. Ideally each resident would have their own 1-1 who sits with them through the day, but there will never be adequate staffing.

What will ensure that?

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.

Can you get life insurance at the age of 70?

We are it seems completely incapable of facing reality as a society. We won't allow people to choose euthanasia and yet we are not willing to pay for decent care through higher taxes. I would like people to be able to write living wills where they specify what they want and in what circumstances before they lose capacity. I cannot however see it happening.

Going off to Dignitas isn't an option for a lot of people, surely you'd know that? There are several reasons, firstly is the cost, as far as I'm aware it's around £10,000. Then there's asking family members to help out, a lot of people wouldn't be comfortable asking their children to help them die, and they'd be asking them to break the law, they can be jailed for assisting suicide. Then there's having to go long before your dementia is in anyway advanced.

I'm surprised you didn't know this stuff before making an ignorant comment about how did this happen to all these patients, didn't they consider Dignitas?🙄

A generalised living will isn't really enough, especially for people with any kind of advanced dementia. For my parents it covered - not taking them to hospital (for iv antibiotics) if oral antibiotics weren't effective; not taking them to hopsital if suspected stoke; no CPR; not artificially feeding them if they were 'near the end' and refusing to eat.

As I understood it (and I may be wrong) they would still be given oral antibiotics for a treatable UTI, chest infection or tonsillitis etc. And refusal to eat (in general) was seen as one of the many behaviours and the staff did as much as they could to encourage eating and to give nutritional meal replacement drinks.

I also found out that routine vaccinations were still being given: COVID, flu, pneumonia, and that there was a new prescription for statins to protect against CVD!!

Having lived through (and currently living through) the long proccess with older relatives, my current plan is to 100% engage with my family members and to engage them in my wishes. They mostly involve a sunny afternoon, a comoftable spot in the garden surrounded by my favourite flowers, a lot of wine, and a selection of sleeping tablets - siphoned off gradually from a regular supply.

It's awful

We didn't tell my FIL's sister when he died. She had advanced dementia and would not have remembered us telling her for more than a few minutes. To inflict that grief on her would have been cruel and every time she was retold she'd have felt it as a fresh new grief.

Astounding naivety on here. 12hr shifts are perfectly standard in healthcare, may seem like a long time but you get used to them incredibly quickly. I don't think you can judge a home from what has been said. It takes one person being incontinent in the lounge to make the place stink of faeces and the truth is a lot of people with advanced dementia do all the things mentioned. People saying their relative is in a care home and its not like that.... it probably is at times, just not when you are there.

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.

My mum ended up in a home for people with severe dementia when she had terminal bowel cancer. She had complex medical needs as well as the cancer - mental health issues, copd and Crohn’s- and that particular nursing home was the only place that had a space that could accommodate her needs. And it was pretty much as you describe in your opening post - and it was rated excellent. People just do not want to admit this is the reality of care for many people - and end of life care for people like my mum (no spaces in a hospice, she was fully funded under continuing health care nhs funding).

As others have said, it’s hard to know at what point you pull the plug as it were. My mums world became smaller and smaller. She used to go walking over the fields with her dogs, then she could only manage to get around her house, then she could manage a few steps from her bed (moved downstairs) to her kitchen and the commode with a walking frame. Then bedridden. Then unconscious but still alive. There were various points I kept thinking if I was her maybe I would have necked that bottle of oral morphine she had. But people don’t. They cling on to the very last stages until they’re too far gone to do anything about it. My last memories of her are absolutely horrific. And I nursed my Gran through terminal bowel cancer too so I sort of knew what to expect (and my Mum and I had a difficult relationship).

I am now at a stage in my life where I am facing an uncertain future due to health issues and I am feeling acutely aware that my body is slowing down, I can’t do the things I want to do anymore. And yet it’s taboo to talk about these things. People gleefully tell you you’re depressed and send you off for anti depressants etc but I’ve been depressed before and this is not the same thing. It’s a slow acceptance of approaching the end and I’ve seriously considered dignitas etc. And yet I don’t feel I’m there yet, whilst I still have some joy in my life. It’s very difficult.

Absolutely horrific. No. No and no.

I heard someone on a phone in. He had taken his wife, their daughters went too. It cost around £10,000. Not affordable to most people.

DF always said he’d kill himself if he got like that, his DM had dementia. Unfortunately DF didn’t know he was losing it. He is now in a dementia care home. He’s also the most ‘with it’ so doesn’t really have anyone to talk too, it upsets me to visit him. He thinks he’s on a job working.

I have told DC that if I end up in a home like that I do not want treatment for any illnesses, no antibiotics just painkillers, and a DNR will be put in place. I’d rather die at the earliest opportunity than live like that. We wouldn’t let animals suffer like that, it’s inhumane to let people live for years in that way.

Every DNAR I can sign. I am a member of Dignitas and a bank account purely for this. I have discussed this in depth with each of my children and they know and respect my wishes. I have quite a lot of plans in place, some of which I cannot discuss here but I definitely will not be left lingering in my own shit in a nursing home being spoon fed.

OP:
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.

The problem is OP, that to be accepted for travel to Dignitas to end your life, you have to have full capacity. Once you identify that you have dementia, it's too late to go. They won't accept you. Most people who have dementia don't even realise it, honestly. They usually think the problem is external to them.

The problem nowadays is nobody is allowed to pass away peacefully. They are taken into hospital, pumped full of drugs and sent home for more months of misery.
My Nan died in 1981 age 73. She had a stroke. She didn't recognise anyone . She was in hospital for about a week and kept comfortable and passed away peacefully. I dread to think how much longer she would have lived in misery if this had happened today

DH and I also have this. It’s very clear that if we lose capacity we want no life prolonging medical interventions at all, including antibiotics and artificial feeding. Our aim is to take our own lives should symptoms of dementia develop. But if we miss the window for this we want all medical treatment withheld.

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.