Aunt with dementia

[readsalotgirl63]

Was on this thread years ago when DM was failing and it was very helpful. So now I'm back as have "inherited" DMs sister and her husband who have no other family apart from me and my dsis who lives abroad.
Aunty was diagnosed with dementia in 2019 and because of pandemic I have not seen her since late 2019 - I live about 250 miles away. I kept in touch via email/whatsapp and dsis phones regularly.

Visited for first time at the weekend and aunty is completely incoherent. Uncle is only carer and refusing to have any other assistance. Aunty is clean, fed and cared for in that respect but she sees no-one apart from uncle and she is barely getting out the house.

How do I persuade him that this is not in her best interests ? I have a phone call to the GP lined up and last year I did make a referral to social services which uncle agreed to initially but then refused all help. Really not sure where to go with this or what to do next .

So sorry that you are in this very stressful situation, it sounds Like she needs to be on the social services radar ASAP

@o8T8o thanks. They were referred to SS last year but uncle declined any help and is still saying he doesn't want carers in. I'm hoping GP might be more persuasive.
I've also spoken to dsis who will phone uncle and be more blunt than she's previously been. We're also going to investigate the legal position as uncle has POA for aunt but dsis and I have POA for both uncle and aunt so are wondering if we can compel him to accept help for her.
I'm so sad for her that her life is nothing more than sitting in a chair all day with only uncle for company. I know she is clean and dressed and fed but there's more to life surely ?

I suspect that if your uncle is aware of the ramifications of his refusal, then there is nothing you can do. Your aunt sounds as if she is being well cared for and isn’t at risk of harm to herself or others.
That said - you will just have to wait for a safeguarding issue to arise - such as uncle being hospitalised and aunt needing 3rd party care.

What makes you say it's not in her best interests? Does she seem sad or bored? Does her husband lack capacity? What practical support can you offer him to get her to activities that you think she should be going to?

If she gave him power-of-attorney then she trusted her future care to him. Please don't criticise his care - I'm sure you are well meaning but you're not living his life.

How do I persuade him that this is not in her best interests
It is not in his interest to listen to you, he is doing what is the most convenient for HIM, your aunt has no voice, she has been reduced to the status of a pet. It sounds as if he wants complete control over the situation but of course he will not want the huge imposition and inconvenience of doing what is necessary for her to have as full a life as possible.

If she is totally incoherent, I don't really see why you think she should be getting out more or seeing other people . When people have dementia they really don't need or want to be "getting out", and seeing new people can be very confusing and upsetting for them.

It sounds as if Uncle is doing a good job, so I'd be leaving him to it. Offer help if he needs it but don't be interfering in their lives.

“Clean, fed and cared for” sounds pretty good to me for a person with advanced dementia - especially if she is being cared for in her own home by someone who loves her.

She is not going to get anything more than that in a care home setting - and if she owns a share of her home they will charge her £1000+ per week for their offer.

You might want to discuss respite/contingency plans with your uncle though as I suspect this will be hard for him. But for many people in this position caring for their significant other is their whole raison d’etre so be cautious about removing it.

My dad was like this until my mum insisted - luckily she wasn't incoherent. I really don't think there is much you can do. It's a stoic generational thing and People can be quite stubborn!

Could you offer help in other ways? Maybe fill in Attendance Allowande forms, sort out some meal deliveries/cleaner/gardener?

Maybe talk to him, reassure him that he's doing a brilliant job, but he might benefit from a couple of hours off? You Dan arrange people to look after her while he goes for a walk it does whatever else he likes to do?

Thanks all. I think it is sad that she is doing no more than sitting in a chair falling asleep in comparison to how she used to be. I also wonder if she had had more stimulation earlier in her diagnosis, or indeed been diagnosed earlier, if this would have slowed her dementia.

With hindsight I think Uncle has been covering for her for longer than we realised. I also think he assumed early on that nothing could be done to slow the progress and because of the pandemic things which might have helped such as day centres all stopped. I think now it is too late.
@o8T8o has hit the nail on the head. His refusal to have help in the house is because it would disrupt his routine and yes looking after Aunt has become his raison d'etre. However I think it would benefit them both to have some assistance. It would give him a break and allow him to do things such as watch a tv programme from start to finish. It would also mean there are other people for Aunt to interact with and with whom she would become familiar and so if anything happens to Uncle it might all be less traumatic.

When I say she is not getting out I mean quite literally - they are not even going to sit outside in their garden which Aunty used to love (and which is fully enclosed and secure) let alone go for a walk.

It is clearly not all sweetness and light - I'm aware from comments by Uncle and from a couple of neighbours who "keep an eye" that Aunty can be aggressive. While I agree there are worse things than to be kept clean, fed and cared for by someone who loves you it is not much of a life for either of them. I do think they are both vulnerable and I am concerned. I would like life to be more pleasant for both and really would rather not have it turn into some awful crisis.
@BunnyRuddington I suggested this at the weekend but was met with a refusal but I do think he would benefit from a couple of hours break a week.
@MinervaMcGonagall45 Yes -I think we need to get him to begin to think about contingency plans but I think these would be easier to make if there was some regular support already in place.

Thanks again all - much food for thought

Sounds like my parents. My dad just wanted to keep the peace - he was wary of her aggression and she’d never have accepted help. I suspect that it is your aunt who is resisting SS help. It’s your uncle who’ll have to deal with her wrath so he concurs for the sake of a peaceful life.

In that case I suggest being a wee bit sneaky. Try offering a cleaner or a gardener or even a window cleaner. So it’s a way of a) lessening his load b) getting them used to having another person in the house. Then proceed to perhaps a sitter, so he has an hours break, then carers on a weekly or daily basis as necessary.
To be fair, even if he does think she needs a care home, he’s worrying that she will be locked away without him (like lockdown 1-3).
As a pp said, it sounds like she is getting as a good, if not better care at home. Medication for dementia is very unlikely to do anything at this point - most consultants will consider stopping treatment at some point after family discussions. (Been there, got the t shirt 4 times).
If she can stay at home, a safe, ‘recognisable’ environment is best.
A conversation about the hat would happen if he fell and had to be in hospital, is a good idea. As is one to see that he is claiming AA in her behalf. If money is a worry, that could be a big help toward paying for additional help.

Thanks again. @GreenClock I'm afraid aunt is extremely confused and cannot speak coherently so I don't think this is the case. Uncle has always done everything for Aunt - she was "treated like a princess" but again with hindsight I suspect an element of control at play. They did everything together and had very few (if any) interests apart from each other.
@Bargebill19 These are good suggestions and that's the way we will go. He has agreed he will get the neighbours gardener "next time he sees him" but dsis and I will keep asking about that and I will speak to the neighbour myself and arrange for gardener to call. Then we will work on getting a cleaner.

Good suggestion about attendance allowance - I have no idea about their finances but think they are pretty comfortable but will start asking about that and about what he thinks we'd do if he had to be in hospital. Suspect it will be a long game and fingers crossed nothing goes pear shaped in the short term.