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 think people are completely naive about how dementia affects people. I have two relatives, neither terribly old, who have gone downhill very quickly recently. One is doubly incontinent and rips off incontinence pants all the time, meaning her clothes are constantly soiled and her house reeks. The other sexually assaulted his carers and any other woman in his vicinity at the drop of a hat. He can only be looked after by men now, even his adult daughter can't be around him.

The ability to keep them clean and safe without drugging them into a stupor on a daily basis is nil.

I will happily sign anything that gives my relatives permission to kill me off once I've lost my marbles.

I'm a nurse in a nursing home and ending up in one is my biggest fear. I have a living will stating I am not to be kept alive by artificial means if it is not likely I will make a full recovery and that I am not to be artificially fed unless I have the capacity to make the decision. I have let every friend and family member know my wishes too. I have even made a pact with one of my fellow nurses that we will not allow it to happen to each other.

What makes my job hard is I am literally keeping these people alive, we give medications to them to prolong their lives, treat their illnesses etc. A lot of families don't understand what you are doing to their relatives and often push you to treat everything even when you are gently saying maybe its best if we keep them comfortable. And the bloody doctors never put their foot down and just go with the family. Let people die with dignity!

I am sorry about your Mum. I'm glad to hear she's in a more decent home.

I would rather be dead than go in a home.

I was reading something recently about death and how, as wonderful as medical advances are, it means that people are often a lot less willing to accept death, even when it's an appropriate time for someone to die. Death is inevitable, and a peaceful death is a gift.

No. It’s inhumane and the fact we allow people to live their final years like that lets us down as a species. I’ve worked on dementia care and some people have an absolutely wretched end of life. Even in the best care homes.

Not everyone could afford Dignitas (approx £10k), which is why, if this is something you think people should have the right to, you should join the campaign to make assisted suicide legal in the UK.

I think this thread is almost trying to cover too many different issues.

100% I agree that carers need to be better paid and work shorter shifts. Of course the first argument will be that those additional wages will have to be paid for in some way - by families generally, and the cost is crippling. However, I don't think anyone would disagree that more staff would alleviate some of what you describe. However much as we would all want to be cleaned up immediately, I suspect there are a great number of us that wouldn't want to be in that situation at all.

Then you come on to the 'wanting to take your life before you get to that state'.
As has been said, the issue is you don't get a nice clear timeline of 'on this date you will use this function, on this date you will lose that function'. Life, and then loss of faculties just isn't like that.

I am a big supporter of Dignity In Dying but even they are currently only hoping to get the law changed so that people with a terminal illness and mental capacity will be offered the opportunity to end their life when they choose. That doesn't cover those with dementia.

I care for my ex, who has young onset Alzheimers. She is very unhappy. She is still (just about) able to take herself to the local shops, where she regularly buys Stanley knives to slash her wrists with. I look for them and confiscate them. Often I wonder why I do this. Because I couldn't live with myself if I didn't, I suppose, but honestly suicide is kinder than what's left for her. It's such a terrible disease.

When I was a teenager in around 1987, my mother (then aged about 55) and I were coming home one winter’s evening when we saw an elderly neighbour shuffling down the street with her thin nightie tucked into her underwear. She’d soiled herself and was ice cold and crying. We got her home and my mother cleaned her up and put her to bed (having changed the sheets which were stinking). Whilst this was going on I made her a cup of tea in the grimy, foul kitchen.

This woman was a retired professional, the first in our town to qualify and practise in her field. She had been clever, cultured and stylish. My mother had known her in a professional capacity three decades earlier and like many young women, had really looked up to her.

My mother rang social services and long story short …our neighbour eventually went into a care home and died soon after (mercifully).

My mother was so upset by this incident and told me that I was to make sure she never got like that at 80+. She now has. And it is bloody awful. But nothing has moved on in the past 35ish years, elderly people are still suffering because society is too squeamish about the whole thing.

@Reddog1 how sad, nobody wants to end up like that. Sorry about your mother .

The home shouldn't smell of feaces, and the residents should be safe from other residents violent outbursts ,sexual assault,etc.
However emi nursing is very different from homes that just take dementia residents. To be classed as emi ,they must be unmanageable in a regular nursing home setting . Resisting personal care, violent, inappropriately sexual, they will eat non food items, defecate anywhere and sometimes smear it up the walls, attack staff and other residents amongst many other things.
These residents are extremely hard to manage and the balance between sedation and quality of life is a huge debate.
It is incredibly hard to work in, or even visit .
Please don't assume they are being neglected . Because the alternative is to just drug them up to the eyeballs so the place appears calm .

Yes, it was indeed an EMI unit and I know this is one of the most 'challenging' settings.
I am sorry to hear your stories xx

It's awful to think about and something we need further conversations about in this country.

In the meantime, I don't think there's enough focus on prevention and what people can do to keep themselves well. For example, social contact really helps to reduce risk of developing dementia. On the other hand, viral infections (and in particular covid -19) increase risks, there is an emerging body of research on this but it is not being well publicised. One linked below.

So in all seriousness, do what you sensibly can to avoid catching or spreading covid whilst getting on with your life. And in particular do what you can to maintain contact with older relatives but be as careful as you can not to give them covid. So the sort of things I mean are opening windows for ventilation, using antiviral nasal sprays, using masks in some settings (ideally FFP2 masks, at least wearing them in health settings but if you can on public transport and in shops too) and testing before visiting older relatives. And staying away if you have any symptoms, of course. Study shows: Risk of dementia may increase after viral infections - The Limited Times (newsrnd.com)

It's not something I regularly thought about, but that home was emotionally distressing.
My own grandmother has dementia and has a home carer, but still relatively early stage. I think it was just seeing 27 residents with it all manifesting in different ways that was distressing.

I'm sorry for those who have loved ones are going through or have suffered this terrible illness. My family have recently lost someone who had dementia and their quality of life over the last 4 years was awful. It's heartbreaking. I don't know what the answer is, but I hope this country finds a way for people to make their wishes heard (ahead of that time and with full mental capacity) so they can decide and document at what point they would like help to end their lives, and that their decisions are respected and carried out. Dignitas is too expensive for most, and not an option once you have lost mental capacity.

I firmly believe that one of the last compos mentis things my granddad with dementia tried to do was step in front of a lorry. He was grabbed by a member of the public, which was clearly very good for the lorry driver and the bystanders, but honestly less good for my granddad. It had been significant walk, by not the most obvious route, to get to the nearest fast enough road, so unlikely to be an accident.

Totally agree. When we are at elderly end of life stage, it shouldn't be fought, but accepted.

Most of the posters on this thread are so ignorant and naive it's shocking. Yes some homes are a bit better. Many aren't. I've seen many. I've worked in a few, our ambulance staff pick up from 100's, it's all varying degrees of awful. If you think it isn't, you are naive.

My Dad had alzheimer's, he frequently said he wanted to die. In the end he was taken off of all food and water and took 14 days to die. Thankfully he did not seem to know what was happening. We treat animals much more kindly.

I think we keep people alive for longer than they'd choose to be. One way to deal with this is for people to give advance directions for treatment not to be given, but I'm not sure people want to think about it. My lovely granny had dementia and eventually it takes everything from you. It's certainly not how I want to end up.

DH and I are planning to put aside our retirement lump sum for trips to Dignitas if necessary. We've seen his mum, both my grandmothers and two of my aunts go through it. I don't want my kids to go through that with us.

Yes, I really really would do it. Seeing my Nan kept alive with dementia until 102 with zero quality of life was traumatic.

when? Better too early than too late.

how? Two bottles and wine and an evening swim at the beach in heavy clothes.

yes, I have thought about this very carefully and until the law changes I can’t see any other option.

I worked in a dementia care home as a teenager and I was horrified. Residents stripping, smearing poo every where and yes sexual assault happened. I also got to know a bit about what the patients were like when they were younger and healthy. Indeed it was tragic. Severe dementia is really really hard to manage so I wouldn’t necessarily judge the home.

Your op is creeping into victim blaming. They are innocent like children and very vulnerable. Your workplace sounds like a mid staffs in the making as do many care homes due to lack of adequate staffing and not enough regard for care workers.

Are you burnt out?

And yes this home needs reporting as it is not safe.