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?

If his current home is on the market could he downgrade to a smaller home, adapt it and then look to have a live-in carer. He would retain his autonomy but have access to the support he needs?

Live in carer may be an option if his home was big enough or able to be adapted sufficiently. When you say he needs 2 staff to transfer is this using equipment? There may be a suitable standing aid/hoist that one person could use with him safely. Usually during carer breaks the person would be left resting in bed or armchair with TV/radio/book or a sitting service used. But it would likely just be sitting with them and not facilitating toileting.

And as someone else has said using a urine bottle may help continence if he has the dexterity and understanding to use it.

Thank you all so much for your thoughtful replies. Blueskyandbutterflies, you’ve hit the nail on the head when you say he wants a personal assistant. He finds it very hard to accept that he is one of many. He’s always been quite egocentric in a mild way - we suspect that he may be on the autistic spectrum ( my son and my nephew both have diagnosed autism and my brother also has traits ) and this may have intensified since going into the home.

As far as being patronised is concerned, is more that some of the staff ( not all by any means) speak to him in that exaggerated, talking to a child-type tone in a kind hearted attempt to show him affection. A lot of them also completely ignore him when he talks to them, which he finds worse. To them he’s talking rubbish but to him it’s of the utmost importance, or he’s just trying to make conversation. A few of the staff are skilled enough to do the ‘entering into his world’ thing but most aren’t. I suspect that they find what he talks about hard to connect with - he often uses long words and talks about academic subjects, albeit in a very muddled way. It’s exhausting to keep up a conversation with him, even for us who usually have a vague idea of what he’s talking about!

He was using a bottle for urine at night but that has disappeared - I suspect he was making a mess with it. His confusion is much worse at night.

I think the conflict of interest in employing a 1:1 PA comes from the fact that they might do things differently from the home staff and not be under their ‘rules’ because they’d be employed by Dad / us? So it would be a problem with their insurance / risk assessments ?

Damn - typed a long reply and it’s disappeared !

roughly, “entering into their world is basic dementia care “, all staff should be trained to do it. Things like the urine bottle, you should be able to ask why. In our small home I take all these queries to the manager.

Time for new home?

I’d consider paying someone, not as a care assistant, take them along a few times with you as a “friend”, then they start visiting on their own. Mainly to do the things that aren’t high on carer’s list if priorities, though take him to the loo if needed, just as you would yourself.

MereDin - I had thought of that. I do think it would make such a difference to him.