Many care homes are very depressing environments

[Meandsusiehadsomuchfun]

I know not all homes are like this but many are. What is also alarming in the home I've been in is that many residents in the advanced stages of dementia are only in their early/mid 70s, which is no age at all really.

There are obviously funding issues which means most carers are not well paid at all, and staff numbers are low. It can cause people to be overworked, stressed and to start resenting the job.
A lot of residents with dementia no longer have any autonomy over their lives, and it's sad to see. I understand some of it is necessary as otherwise they can forget to eat and drink, forget to wash themselves.

But I see homes telling night staff to start getting people up at 5am so there are enough residents up for the day staff, a lot of care staff neglecting oral hygiene and residents being put in someone else's clothes because their own have gone missing.

Put into a chair and left there all day apart from toileting, told to sit down, wait a minute, stop shouting. Put into bed at 7pm and again the next day. I haven't seen any entertainments in some of the homes despite management claiming there are always things going on.
I know some homes are really nice and allow residents a lot more choice, and of course with dementia it's difficult as you do need to encourage residents to do certain things.

It's just sad to know these people are in the end stages of their life and would probably be horrified if they could see themselves now. It doesn't feel dignified for them. Care work will likely always be underpaid and under funded though and I don't see things changing.

When people say they are adamant they will care for their own parents rather than a care home they do not know what they are committed themselves. Loosing your job, wage and independence. Moving in with your parents or taking them into your family home. People with dementia can be aggressive, suspicious and even violent. No one knows what dementia will do to a person. You are effectively caring for toddler in reverse, but with an adult size an strength. The very early stages of my Mums dementia turned her into a vicious bully, drove my stepdad to suicide, and when she lived with us briefly it was so relentless, my family was under such stress even my very chill DS (9) at the time lost it and told her to leave. She is now in her 2nd care home as she was told to leave by the first one because her behaviour was “upsetting the other clients”. The care home she is in now is excellent, has a 1 staff to 3 resident ratio and have no problem managing her behaviour. There are activities but she is not interested and sometimes they actually make her more confused and distressed. It’s over £8K a month. Care home aren’t really designed for what they are, they are still being imagined as retirement homes for elderly people with physical disabilities. What they actually are - the privately funded dementia wing of the NHS, funded by the people who are unfortunate enough to have a terminal disease. I know many professional carers who weren’t unable to care for their own parents, the added emotional toll of caring for a loved one on top of the physical and mental load was impossible. And statistically people in care homes survive longer than those cared for at home, while on average carers loose roughly 6 of their own life expectancy. I would not ever want to put that pressure on my children. I think there should be a way to make an advanced directive to say I don’t want to live any longer when I get to a certain point in dementia (for example when you become aggressive, or when you no longer recognise family). I know my Mum thought that’s keeping someone alive with dementia to the point where she is now is cruel, and I feel ultimately responsible and guilty most of the time.

I think there should be a way to make an advanced directive to say I don’t want to live any longer when I get to a certain point in dementia

I think it's worth putting as much of this information in writing as possible. There may well be changes to laws in future that enable this kind of thing. I'm still in my thirties so hopefully don't need to worry about it just yet but I certainly will in a couple of decades (assuming I get there).

Yeah if I get dementia I want to die not live on and on in a bloody care home

Sad but true. I know some women are happy to take on full time care of their elderly parents, but for those of us who can’t/frankly don’t want to, residential care is the only sensible and safe alternative. Carers in the home is great on paper but is a huge admin / organisational burden.

as would have said just about anyone who is currently sitting in a care home with dementia. I feel exactly the same ! But how do we avoid it ?

I feel exactly the same ! But how do we avoid it?

Well firstly they estimate 45% of dementia cases are preventable (or at least delay-able) through lifestyle changes so that's one thing we should all be doing.

Secondly you should put in place a Living Will which enables you to say in advance that you will refuse certain types of medical intervention if you don't have the capacity to do so at the time.

You should also set up a Lasting Power of Attorney which means someone can make decisions about your care and medical treatment for you if you're unable. The Alzheimer's Society is good on all this stuff and I've done this with my parents.

However, if you're sliding into dementia but otherwise healthy then none of this applies. As above, I'd advise stating really clearly (and getting signed off by a solicitor) what your ideal wishes would be in this situation as who knows what the law will be in future.

Personally I've said to my partner that if I have dementia I want him to continually explain to me what's happening (not hide it from me) so I can be empowered to make decisions.

Sorry this is morbid but I've seen this stuff happen with close family members (as have many of us) and so have thought about it a lot.

@CloudPop Umless you have a lot of money, care at home is expensive. £35 an hour privately. Not much different if you employ directly. Plus you have night issues and costs for some people. The state care is 4 visits a day. Around 15 mins per visit.

I’ve no idea how we pop ourselves off. It’s appealing I have to say!

i wish we could …

With an ageing population and people living longer, a redesign to the care system definitely needs changing.

When my relative had to be admitted to a home as there was no other choice, it was hard enough to get a home to accept him. After one eventually did the 'dementia home' couldn't cope with him, despite being specialists in dementia, due to his aggressiveness and 'wandering in the night'. It then took months to find an 'EMI' home that had spaces. We had to go on waiting lists. This was with the 'luxury' of being self-funded. Many homes we spoke to wouldn't accept gov funded and some wouldn't accept CHC, as their costs wouldn't be met.

Surely damand is only going to get higher, there is not enough places as it is.

My grandmother’s was as nice as it could be but she used to complain they played music her mum would have listened to. There’ll be blue bells over the white cliffs of Dover was not what current 90yos were listening to. Their parents yes, but not them!

You're suffering is prolonged in care. Prompted with fluids using ice lollies, yoghurt etc. Poor diet no problem ... cake, chocolate, high calorie drinks. If that fails hospital admission and ivf drip. This is on instruction from the care commission. If this isn't adhered to heads roll.

This is the crux of the issue, as a community nurse we see it all the time, we need to start being more realistic about death and good deaths

@TeenLifeMum There will be blue birds etc! Too many people seem to think older folk were all around during the war! Many now were very young or not born at all! It’s somewhat lazy to think everyone likes the same music anyway.

My grandparents didn’t have drugs pumped into them when very old to stay alive. Family doctors just presided over decline and there was greater acceptance of inevitable death.

Auto correct changed that to bells but glad you know what I mean. I have a feeling they’ll be playing the same music when I’m in a care home when dementia me would probably want Spice Girls 😂

I have worked in a few care homes when doing my nurse training and they are pretty much all bleak places with not enough staff to provide more then basic care. Things have to be rushed and they often take the easiest option just because they dont have time for anything else.
Its very sad but I dont really see things changing, not with an ageing population and very few interested in going into caring roles.

I think I only ever found one care home I actually liked. It was tiny, just 7 residents. The owner and her family lived on site and treated them like family. Everybody would eat dinner together, her kids would sit and watch telly with them in the evening and the family cat would visit all the rooms.
It felt very much like one big family. I doubt it would be financially viable these days and I imagine it would of failed various care standards but if I had to go anywhere.....