Is there an alternative ?

[LaBelleSauvage123]

My father is so unhappy in his care home. He has undiagnosed dementia and is often very confused, though he still knows family and remembers details about our lives. The things he hates and complains about most are:
Having to ask permission to do things
Having to wait to be able to do things
Being ignored or patronised

He told me yesterday that he feels as if he’s being treated like ‘a recalcitrant institutionalised baby’. And tbh, he’s right.

The main issue is that he can’t walk any more and needs two carers to help him stand and transfer to a wheelchair. He wears a pad, but still knows when he needs to go - I think if he was able to go as soon as he felt the urge, instead of having to wait for carers to be ready to take him, he’d be more continent than he is. He’s having weekly private physio and engaging very well with it.

The home is eye wateringly expensive - they’ve just put the fees up £300 pw! He is lucky enough to be able to self fund. His house is on the market and when it sells, he’ll have even more funds. So the money is there for an alternative - but is there one? Going home isn’t possible as his house isn’t accessible and nor is my sister’s. I have a disabled adult son who lives at home and having dad here too just wouldn’t work.

Does anyone have any ideas?

Have you looked at any other homes ?

I’d look for another home and move him now - rather than later. It’s his money he’s amassed and why should his choice of where he lives be taken away.

friend of mine was looking in our area and her search was around 20moh Ed, the prices were all approximately £1300/1500. What surprised me was the big standard but lovely home was more expensive that the luxury place she viewed. You may find something more suitable elsewhere

From your description and his heavy reliance on carers, there may not be a better solution. If he can afford to stay in his own home with full time paid carers, that might be an option. Otherwise, can you or another family member be his full time carer - maybe with some respite carers? Is that something you'd even want? It's hard to be a carer full time.

The only other way is for him to live at home with a live in carer. My neighbour did this, she had her bed, commode etc downstairs. She didn’t have dementia, so could be left whilst the carer went shopping, but this worked well for a few years. It also worked out cheaper than going in a care home.

£300 a week is low. We pay £1200 a week and that’s one of the lowest prices here :( The thing is if he can’t walk to the toilet when he needs to go he will need to wait for carers or use pads.

Does he not have an alarm he can use to call the carers when he needs to go ? He shouldn’t be waiting that long to be taken to the toilet but I’m assuming he’s in a home with other people who need looking after too so he can’t just go soon as he needs to if their attending to someone else:
You could look at 1-2-1 care but that would be a lot more expensive.

Have you looked around other homes ?

He shouldn’t ever be patronised that is not ok.
Report it to the managers.

I feel for you it is an awful situation x

I think £300 was the increase not the weekly fee.
I'd look at other homes but it may be that he will hate everywhere.

How much money does he have? Could he afford to stay in his home and have two living in carers. This would be expensive.

Thanks for all these quick replies.
We have looked at a number of different homes but the ones we like have refused to take him, either because of his dementia or his mobility. I think there’s truth in the comment ‘it may be that he will hate everywhere’. He’s quite impatient and finds it hard not to be his own boss.

Yes, £300 was the increase. The full fees are now over £2K a week ( he gets FNC of just over £200 but is still paying about £1850.

I am wondering whether him buying an accessible flat with 2:1 care might be a better option, but I think that would be even more expensive.

While he still has lucid moments it may seem as though there is an alternative. Sadly, that period won't last. You say undiagnosed dementia - if he does have dementia then once he is diagnosed a lot of doors are opened to extra services. (something else to bear in mind, if he does get diagnosed, not all homes are able to give dementia patients the care they need)
If you brought him home, then you will ultimately need 24/7 and 1-1 care. And somewhere to do it. Your house?
Also, in a good care home he will be stimulated in ways that a 1-1 carer, or even a family member won't be able to do.
There are wonderful carehomes out there, my mother's was amazing. Trips out, even in the later stages, concerts in the home, a project with the local primary school, pet therapy, the whole kit and kaboodle.
At first, when my mum was also having lucid moments, it seemed worse. She'd tell us she was going home because she didn't need to be there etc.
Ultimately it saved my sanity knowing she was clean, safe, and well looked after.

My grandad is currently having a live in carer arranged. He already only lives in the downstairs of his house but his needs are less than your father's sound to be. It is significantly cheaper than a care home and the carer takes 2 hours break a day. They have several who work on rotation and swap every 2 weeks I think.
He went into a care home for respite which cost 2k a week and was told that he could join the 'waiting list' to have a shower and he would 'hopefully' be offered one within the week which is what swung the decision to keep him at home really . God knows what they did with residents who were incontinent but I'm sure being washed once a week wasn't exactly beneficial to either their health needs or their remaining dignity.

The big problem is that no home is going to give him the quality of life that you and he would want, because the staff/resident ratio operating in most homes just isn’t sufficient for people who are totally reliant in others for everything - personal care, food, mobility, mental stimulation. Most homes can just about do personal care and food. It’s my view that there would be an (completely justifiable) outcry about such ratios in a childcare setting.

However, I volunteer in a home where one of the residents has their own private carer who comes in to the home on a daily basis, employed by the family, so he has 1-1 care during the day which is what most dependent elderly people need, of course. She takes him into the lounge, to activities etc. and engages with other residents, but is basically there for him, to facilitate timely personal care and general well-being. Might this be possible for your father?

There are wonderful carehomes out there, my mother's was amazing. Trips out, even in the later stages, concerts in the home, a project with the local primary school, pet therapy, the whole kit and kaboodle.

I so wish my dads home was like this. It’s all bingo and arts and crafts and dominoes, which tbf a lot of the residents enjoy but DF hates. They very occasionally have a concert which he enjoys. We’ve looked at every other suitable home in the area and they either won’t take him, or their activities are even more limited.

I volunteer in a home where one of the residents has their own private carer who comes in to the home on a daily basis, employed by the family, so he has 1-1 care during the day which is what most dependent elderly people need, of course. She takes him into the lounge, to activities etc. and engages with other residents, but is basically there for him, to facilitate timely personal care and general well-being. Might this be possible for your father?

We’ve asked about this and the manager says it’s not possible as there would be a conflict of interest in terms of who the employer is. It’s interesting that the home you volunteer in allows it. I wonder if we could investigate further?

He went into a care home for respite which cost 2k a week and was told that he could join the 'waiting list' to have a shower and he would 'hopefully' be offered one within the week which is what swung the decision to keep him at home really .

Oh God, this rings so true! It’s one of the things that most infuriates DF.

I went to see him today and we had a pretty lucid chat, initiated by him, about what he described as ‘my future’. He listed 4 options: going home, living somewhere else with carers coming in, staying where he is or moving to another home. I asked him if he thought he’d be lonely living on his own and he said ‘I’d be lonely anywhere’ 😞. He said ‘everyone here likes pop music and personality programmes’ ( I think he means the staff). But then he said he’d got used to community living. I think tbh he’s in the wrong home - but moving him now is going to be so tricky.

He is likely to hate everywhere bcos he just wants to be home.
My friends nana cried every day, but as her dementia progressed so did her violence she pushed her daughter down the stairs and broke her arm and it was impossible for her to stay at home with carers.

You could hire someone and introduce them as a “family friend”. Most of what @watcherintherye describes is what family would do.

I would think very seriously about an accessible flat with live in care; it will be eye-wateringly expensive but if there is any chance you have enough money after the house is sold, I would definitely consider it. Given that he's currently paying £8000 a month minimum, you might do. It takes a lot of organising though.

You may have to let go of him being happy. That may not be possible any more. He could, however, have a more congenial environment, and peace, and perhaps as you say better function around continence.

I think for some there comes a time where what they really want is to return to their prime and nothing else will do. My mum is still at home and one day she will be complaining that she's lonely (despite several activities a week) and wants to move into a home so she has company. But if you start looking at options she is horrified by the suggestion.
What she wants is to move to the assisted living flats where a friend lives but they won't accept her now she has been diagnosed with alzheimer's.

So the options are a homoe and sell the house to fund it or stay where she is with carers coming in. She doesn't have the money to fund live in care for very long so that isn't an option.
Basically all options are wrong as far as she is concerned apart from turning back time and resurrecting dad.

I do some adhoc admin work for a 92 year old who still lives at home, but recently with a live-in carer. The carer charges £112 per day plus 3 meals a days & coffees etc when out and has a 2 hour break per day, which she occassionally saves up and takes in a longer block. She's self-employed and has her own public liability insurance. This carer requires her own bathroom, which is not used by the client.

The 92 year old doesn't require personal care (yet) but does require a lot of help with household tasks, shopping, all cooking, washing clothes and help taken out and about and driving and is company for her.

Would this be an option for your Dad? It sounds like it'd be cheaper and more suited to him?

It would, but he needs help with personal care and mobility - would need 2:1 and couldn’t be left alone for breaks.

Hmm. With that level of need then yes I would look for another home. It does sound as if this current one is not ideal for him. They really do vary.

Maybe he can buy a 2 bed ground floor flat and have it adapted to suit his needs. He'd need a 24/7 care, so more than one person which he'd either have to pay for through an agency or employ them himself which would be cheaper possibly and might provide more consistency because someone employed by him can't send a replacement but an agency can (although that option isn't going to be great if he's got dementia, he doesn't need to be dealing with National Insurance and Income Tax deductions, holiday pay entitlement etc and what happens if the carer is off sick or on holiday? He'd need a backup plan). Also as his dementia deteriorated he'd maybe need to go into a care home anyway. That could be a long way off though.

Having to ask permission and having to wait is standard. They're not his personal assistant, they're care home staff and will go where the highest need is. If he hasn't yet soiled himself he's probably not the highest need etc.

The being patronised thing is tricky. Maybe comes across that way as there is actually no ideal solution to dealing with a pissed off person who wants something they can't have ie personal assistant services. The staff don't have hours of spare time to listen to him complaining about what is a shit situation and one they personally can do nothing about. So perhaps are brushing it off and trying to jolly him along a bit when he's grumpy. Would you/he feel any better being told "I'm sorry but I don't have time to talk about this right now" as they bustle about doing whatever practical task they're doing before rushing off to the next person, every single time he wants to complain about his situation? Because that's going to be the truth.

We’ve asked about this and the manager says it’s not possible as there would be a conflict of interest in terms of who the employer is.

This makes no sense. Unless they think you want to pay them extra for one of their staff to do it. If you organised it

[sorry]...if you organised it on your dad's behalf and your dad paid for it, then he's the employer. How is that a conflict of interest?

It’s not a conflict of interest to employ your own person to attend to your family member in a home.

I would though be suspicious of why the home don’t want someone watching what’s happening, what don’t they want someone independent seeing?

My dad is in a home and he hates being patronized and having to eat at set times with the other residents. Every 3 months we have an evaluation with carers (and every 6 months with the doctor) and then he can tell about what bothers him. They made arrangements for him to eat in private when he wants to, carers try to maximize his freedom. The evaluation really helps my father to get his frustrations out. Does that happen in your father’s home as well?

About continence: my father uses a urinal which hangs in his room. I always find it an unhygienic sight… but for him it is freedom.