Worried about relative

[Tigercamp]

A family member of mine has gone into residential care after a diagnosis of Lewey body dementia. She is in her 70s, lacks mobility and caring for her at home became very difficult for her partner. The mobility issues were there long before the diagnosis and were getting worse. Over recent months she was still able to move herself from bed to chair or to the toilet with the aid of a walker, albeit very slowly, but falls were a worry and her partner’s life quickly became very limited and hard.

I am not sure what the full diagnosis is, how serious the dementia is or what the prognosis is. She is still lucid, funny and happy. As the day goes on she becomes more muddled but the worst thing is that she now seems to spend all day in bed which is not something that happened at home.

I am really worried that her partner is showing indications that he is abandoning her somewhat. Abandoning may be too strong a word as it is early days and it has been very hard for him, but already he is talking about not visiting as much (partner has been in the home less than a week) I am worried that my relative in care is much more lucid than he (their partner) is suggesting and that she is going to be aware of her partner slowly withdrawing from her life.

When I spoke to her about the possibility of moving into a care home a few weeks ago, she said it would make things easier for her partner and that was only fair. Again, this was before the dementia diagnosis and was talked about as respite care not a permanent move.

It really has only been just over a month between this conversation and the permanent move to the care home and I am shocked at how quickly she has got to a point where she is bedbound. I don’t feel like her partner is communicating with the care staff or with me in an effective way.

Is anyone able to just share their experience of not being the next of kin/partner of a person in a care home and how to get more information regarding diagnosis, treatment and care? I am desperately upset about this but other than promising to visit regularly, I feel powerless. It is also making me feel quite resentful of her partner which I feel guilty about because I do know and understand how hard this has been for him too.

Also can anyone help me understand the speed of progression of this kind of dementia and what kind of medication might be available to help?

sorry if I sound stupid.

You sound clever and caring, not stupid at all.

I’d start with talking to the home - there’s no such thing legally as next of kin but as a relative they ought to listen to
your concerns.

If yr relative is lucid, get her to give you POA for health matters, and make it official.

Her partner probably - definitely - needs a break. Caring is unbelievably hard work and he’s probably half dead, so cut him
some slack. He might up his game later.

Thank you for your kind message.

a difficult visit has made me realise how badly she is sometimes losing track of reality (though other times jolly and sharp) so I am feeling a little less upset with their partner.

all three of us managed to have a conversation about how she is feeling so that’s been positive too.

Good luck. You can get POA forms online and print them off for her to
sign when she’s having a clear day.

To be honest I wouldn’t want to take POA away from her partner. They have been together for several decades and as far as I know my sibling has joint POA with her partner already.

my worries now extend to a general feeling that the care home is not following requests we have made about toileting and activity. I think I need to speak to them about this but worry that lack authority to do so.

You sound lovely OP. I'm sure someone could put this better but please don't feel that you lack " authority' to speak to staff.
You're a concerned visitor, a relative of that makes any n difference.
What can they say - " oh her husband had told us v that she should be left in bed wearing nappies ' or whatever the concern is.
They may appear dismissive or something when spoken to but they will note that you know and are on the case .
What does the latest report on the home say?

Care Quality Commission https://share.google/TM1r9VCCJpP13pzI9

I care for my DH with Lewy Bodies. It can be very tough for a prime carer. It is more variable than alzheimers and sufferers can go up and down with lucidness. As they say, it is the hope that kills you. I think you do need to work with the prime carer. Most of us will take all the help we can get. Whilst there is no cure, calibrating and agreeing medication can make a really big difference to quality of life, so I would concentrate on this. Even though your relative may not realise sometimes who you are, spending time with them is also important so undertake lots of visits.