Wife in a care home with Parkinsons & dementia

I have been a carer for my wife for over ten years. She has Parkinsons and now dementia and is in a home. I have a slightly different question to ask, and hope I’ve come to the right place.

When I visit her, which I do regularly, I am very conscious of the fact that she is on a ‘journey’ of which I have zero experience of understanding or managing. There is help for carers financially, and support for emotional issues, and respite offerings, but I cannot find documents etc which would help me to understand better how to interact and deal with her now she has dementia.

The point I’m making is that her dementia is taking her in a direction I know nothing of, and I want to be able to acquire more skills etc in talking to her. Here’s a very simply example which prompted me to start digging in this area:
A carer professional from the home said to me recently: She isn’t eating her dinner. Not a well trained person obviously, because the answer isn’t that my wife is being naughty or uncooperative. She could be:
forgetful and thinking she has already eaten it
having difficulty swallowing the food and needs to see the speech therapist again
has lost sense of taste/smell and therefore appetite
her perception of the food on the plate is distorted
needs the food cutting up
colour of the plate could be confusing to her

I would like to see carers given the skills to manage this and a host of other situations where it is not easy to understand the issues which the person with dementia is struggling.

Anyone out there who can offer a response?

Hello Rex welcome to the forum
I totally understand your concerns. My lovely late husband had vascular dementia had suffered strokes with other health issues. He only had the use of one arm. It took me months to get through to the staff that he needed food especially meat cut into bite size pieces. He thought he could do it himself with a fork. To tell him exactly what they were going to do re personal care etc then he wouldn’t get aggressive. Several things that to me and my family considered common sense. Not all staff were naive to his needs. He liked staff to knock his door before entering. They had a much better response from him if they did.
I feel you are going to have keep reminding staff that your wife has dementia, that she is not a naughty child. Ask them to use coloured plate, to get to know her ways, her likes etc. If she only wants pudding then so be it.
My husband used to confabulate. I used to go along with it because what he said was true in his mind even though impossible. You will get to know. It’s very heartbreaking and you are doing your best.
Staff have chosen to do the job and should learn the best way to care for your wife.

As dementia progresses many say things that are not true.
Don’t argue with them about it.
It will only upset them and you.
As I say, “Go with the flow.”
Be ready for repetitious talk too. Try not to complain about it.

Some times my wife would suddenly remembered something that
I had forgotten. One thinks that her lost memory is returning but it is not so.
These flashes of memory only give one false hopes.

Hello Rex. It sounds to me that the staff at your wife’s care home have little in the way of knowledge or training about dementia.

My Mum had a few months in a home like this and I found it so frustrating that they didn’t even try to understand Mum and her needs and when I mentioned things which I thought went without saying they just looked at me blankly.

I moved her to a council run home (but she self funded) and they were 100% trained and understanding of dementia. It was like stepping in to a different world and Mum loved it.

I would try and talk to the Manager about your concerns and in the meantime take a look at Alzheimers UK …… they have a forum and a helpline. Obviously stay on here too and we will look out for you.

I absolutely agree with you about training for carers / social care staff regarding specific conditions. Dementia care especially can vary so much between homes, even ones that allege they are specialists.

My Dad has Parkinsons, which most homes SAY they are specialists in, but he is also totally blind and we tried in vain to find a home that had experience of this. His eyes look totally normal and because it is a very recent and sudden event, he still behaves as if he can see in the sense of turning to talk to you etc. It’s really easy for the staff to forget that he can’t see at all, and for the other residents too! I feel like I’m constantly reminding them (and irritating them into the process). I also totally get what you and others are saying about things that seem common sense or you shouldn’t have to remind them - it took a couple of weeks for me to convince Dad to ask every day and for the people dressing him to put his prescribed cream on his feet because he is diabetic and as well as keeping them supple this is a good opportunity for them to check for issues. Creaming feet every day is in the little handbook that diabetics are given when they are diagnosed so I assumed I wouldn’t have to tell nurses how important this is. Today I can see that they’ve been putting cream between his toes - a no-no when it comes to diabetics because it can trap moisture and cause the skin to break. He’s got broken, peeling skin in every gap and some of it looks sore.

I think we try to become specialists ourselves in order to best help our loved ones and it would be great if that was easier to do but also if it wasn’t necessary if / when they need residential care!