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?

What would you judge then?

Elderly and vulnerable people with one of the most debilitating conditions known?

Having watched my mum's protracted, distressing death over years from dementia I have an advanced directive and have made my wishes clear to all family.

I have considered googling suicide methods (to assess level of pain, speed, distress etc) but fear having that knowledge so I haven't. I absolutely do not want to die from dementia

No - I have done all I can to guard against that happening to me.

I have an advance directive lodged with my will, with my GP and to the holders of my power of attorney that as soon as I am judged to have lost capacity, all medical treatment is to be stopped and any conditions or infections that I have are not to be treated other than with pain relief and sedation.

I don't think it's as simple as poor care vs poor behaviour I.e, staff vs patient. The behaviour of my mum at the end was really challenging. It wasn't forgetful sleepy confusion. It was full on 24 hr relentless and unpredictable behaviour, threatening, crying, frightened, hallucinating, knife wielding, shit smearing, scooping phlegm from her mouth and flinging it at us, moments of lucidity....incontinence...uncooperative with personal care. I loved her and had a lot of patience and just her to care for in short visits but it broke me. I can't imagine 12 hrs with multiple people to juggle

I haven't victim blamed, on the contrary I have recognised that it essentially reduces people to a childlike manner and that they aren't aware of their actions.
I do not blame the residents or hold them responsible in any way whatsoever. Of course, people are people and it doesn't mean every single person with an illness was previously lovely in every way, people can be both ill and also have been a nasty piece of work/bully prior to that.
I blame poor management, lack of funding and poor wages.

This is very sad to read.

While personally, I would not want to live with advance dementia. There are things that can be done to support some quality of life even in this stage. It's just so important to continue to remember and connect with people as people on the level they still can.

Namaste care is something well worth looking at. It can bring comfort and some pleasure even in very advanced dementia.

Teepa Snow's gems model of dementia and her videos on dementia care too.

Here is an example of how she describes the experience of moderate / later stage dementia:

Amber ~ Caught in a Moment

Caution Required

Like a particle trapped in amber, I am caught in a moment of time. It may surprise you to see how I take in the world around me.

I may not know you or see you as a whole person. I react to you based on how you look, sound, move, smell, and respond to me.

I like to do simple tasks over and over and may need to repeatedly move and touch, smell, taste, take or tear items apart.

While it may exhaust or frustrate you, it soothes me. I don’t recognize danger; you will have to safeguard my environment.

I’m intolerant to discomfort because my mouth, hands, feet, and genitalia are highly sensitive due to changes in my nervous system.

Therefore, activities like eating, taking medication, mouth care, bathing, dressing, or toileting may distress me.

Please notice my reaction and stop if I am resisting. I can’t help myself and one or both of us may get hurt emotionally and/or physically. If this happens, wait a few minutes, connect with me, and try a different approach; possibly substituting one area of focus for another.

Thank you, I will take a look at those.
Some homes really try their best and provide activities and stimulation.
Others leave their residents rotting away in a chair all day and do not engage with them, it's terrible.

12 hours is pretty standard. Some are 14 hour days.

I have an advance Care decision in place; with any luck my refusal of all life protecting treatment after I've lost capacity to make health and well-being decisions will mean I die before things get too awful for my family. But it really is a lottery.

This is something that worries me about getting older. Maybe more so as I don’t (and won’t) have children who can advocate for me.

With my animals, my belief is always ‘better a week too early than a day too late’.
But humans don’t have that option. We don’t have the option to choose even when we have all the facts and are capable if making an informed decision.

I struggle with this
My Dad had a stroke in his 90s and was physically and mentally seriously impaired - however he was in a very good nursing home and seemed to be at peace with his life which ended around a year later
DM now has Alzheimer’s and has not reached nursing care levels yet - but always seems happy with her quality of life - in fact she actually stresses less and lives in each moment as that’s all she can remember even if she drives the rest of the family potty with sorting her out
I used to think I would rather kill myself than go through this but actually fear it less and I trust my DC to do what is best for me including assisted death if that is an option
I encourage everyone to sort out lasting powers of attorney and advance decisions though and if you can afford it a Pre payed funeral plan as it relieves so much stress at the time for the rest of the family

Coronation street is about to do a storyline on the right to die. Paul, who has Motor Neurone has already looked up the cost of Dignitas and there has been discussions on his partner helping him when the time comes. Before anyone laughs, Coronation Street got the law changed on single mums going to prison for not having a television licence. So let's hope that this starts up a serious debate.

No. That is just existing and not living. I would rather be put out of my misery. I will have something in place to make sure this does not happen.

After caring for my mil with dementia I fully intend on writing a living will when I get older, which will include the provision of refusing antibiotics if I get to a certain stage of that sort of disease and a dna.

DNR not bloody dna 🙄

My Mum had Alzheimer’s so it’s one of my greatest fears that I’ll get it too, particularly as her brother and sister also had it. My paternal grandfather had vascular dementia, so my Dad (86) is also scared of it, although so far he seems fine cognitively.

We have discussed it, he says he’d like to go to Dignitas if he got dementia, and I said I’d take him, but the trouble is, when do you go? If your quality of life is fine to begin with, isn’t there a risk that you won’t do it in time, that you’ll forget you ever wanted assisted dying? If you don’t do it at the first sign of disease, can you be considered competent to take that decision later on?

My Mum was a nurse and would have HATED what she became. My Dad looked after her at home for much longer than he should have, he had to lock them both inside the house to stop her escaping “home” (to Ireland!). When she went into a care home it was terrible, even worse than when she died 18 months later, the pain and guilt we all felt. I was relieved when she died, had been wishing for it for a long time, which of course brought its own guilt.

I was pretty upset at the whole system, that we can't just prescribe an overdose of morphine once dementia becomes very advanced if all family are in agreement.

It felt a bit like every 2 weeks we went to visit this pet we kept at a house, they didn't recognise us, would only show any interest if i brought pink wafers and fell asleep as you talked amongst yourselves. Meanwhile taxpayers (this was fully funded 1:1) were paying £2k a month! In our case covid took her, a relief all around

Id encourage you to do it now, rather then when you are older. I did mine at the age of 28 when during my nursing career I looked after someone who had an horrific brain injury from a traffic accident and basically lays in bed 24 hours a day and is fed via tube. Dementia is not the only disease that can cause a reduced quality of life.

That is very true. I've previously cared for a 31 year old tetraplegic male who was bedridden 24h a day, paralysed from the neck down.

I am a best interests assessor and I love working with people who have a diagnosis of dementia. Not all people present the same and it is possible to have a good quality life with a diagnosis. Just depends that we go along with the person's reality and don't try to make them conform with ours

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 once read a novel about a woman in her 50s who gets early onset dementia. She can't stand the thought of totally losing her mind so she buys enough pills to kill herself and she writes down about 5 questions that she knows the answers to. She asks herself these questions regularly and on the day she can't remember any of the answers she gets a glass of water and the pills and she goes upstairs to take the pills, lie down in bed and die. That has always been her plan. She has held onto the fact that when things get too bad she can kill herself before she gets any worse.

But by the time she gets upstairs on that planned for day she can't remember why she's there, and so she doesn't kill herself. And so she gradually declines in a way that she was always scared of doing. It was the most depressing book I've ever read!

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

It's really concerning to see a professional witness this level of care and seemingly not be willing to report.

It doesn't matter what the cause is, the result is inadequate care and increased suffering. Low staffing levels alone are a reason to report.

I know nothing about dementia or elderly care really, so I may be wrong here... but I wonder about the drugs provided to extend life, I suspect big pharma are milking all this, its in their interests to have as many of these people hanging on as possible. How many would drift off sooner if there was no medical intervention. I'm talking stuff like blood thinners and standard stuff like that. If a person is non compus mentus then why not withdraw all meds, maybe with the exception of pain relief if they need it and let nature take over.

It sounds heartless but every person I have ever talked to says they don't want to end up like that yet they do. It's morally wrong to try to extend that person's suffering IMO.