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RA, Stroke and Vascular Dementia - Carers UK Forum

RA, Stroke and Vascular Dementia

For issues specific to caring for someone with dementia.
Hey there, I currently look after my mum who has RA and my dad who had a stroke in 2015 and was diagnosed with vascular dementia in early 2018.

Mum is all there but has limited mobility. Dad used to care for her.

Dad has lost all interest in everything. Can’t read gets irritated with TV. He doesn’t want me to ever leave his side. Even going upstairs for a few minutes to put some clothes away sends him into a panic and he starts shouting things like “help me” etc.

He will no longer go to bed now and I have to sleep next to him on a recliner settee. I think he’s scared of lying flat in case he doesn’t wake up. I’ve been sleeping downstairs with him for 14 months now.

Evenings a the worst. Sundown syndrome kicks in and he gets very agitated and irritated at everything. Which makes it very difficult for me and mum to relax. He wants the TV changing over whatever we put on. Repeats “Hey, I don’t know” over and over again for hours. It can drive you mad! Hahaha.

He’s on depression meds which have helped a lot but I was wondering if anyone else has similar experience and can give any advice?

Thanks.
Hi Jason,

Welcome to the forum.

You are a wonderful son caring so well for your parents, but I'm concerned that you don't seem to be getting any outside help. You need time off from caring to look after yourself as well. How to achieve this depends on a number of things.

Does dad have a formal diagnosis of dementia?
Receive Attendance Allowance?
Have you claimed exemption from Council Tax due to "severe mental impairment?"

When, if ever, did you ask Social Services for a Needs Assessment for your parents, and a Carers Assessment for yourself?

Do mum and dad have over £46,000 in savings (Yes/No).
Do you have Power of Attorney?
Have they made a will?
Do they own, or rent, their home?
Do you have a home of your own?
Hey

Thanks for your reply.

Yes Dad has been diagnosed with dementia. He does receive attendance allowance, I didn’t know about the council tax thing, well look into that, thanks.

Social services are involved and they’re just processing the new assessment at the minute.

They don’t have savings over £46000

They own their own home, they have made a will. Mum has power of attorney. She’s all there in her head.

I get paid for looking after them through direct payments. We are trying to get an increase so that I could at least get 2 nights a week in bed. My brothers come and help out so that I get some time off but it’s not very often. I do go away for weekends every now and then and my mental state is pretty good considering the circumstances.

I moved back in with them so I’m in the same house. I’m not married and I worked with people with learning difficulties before dads stroke.

He was a lot better than he is now when I first started caring. When the dementia first started kicking in I went through about a month of him wanting to get up every 15 minutes for a pee all night, it was horrendous. He has meds now that help him sleep which is a lot better.
Under those circumstances, Social Services should fund the majority of your parents care.
Another tip, is that their finances can be assessed either individually, or as a couple. So if dad is assessed as needing care, then a joint assessment would probably be best, especially if he has more in his account or a higher income than mum.
If mum has less in her account, or less income, then she could be assessed separately.
It is NOT up to Social Services to decide whether to do a joint or individual financial assessment!!!
Hi Janson
I'm interested in your comment that you get paid for caring through direct payments, yet you are a family member living in the same house. A lot of us get told this isnt possible, so how did it happen for you? Did you plead special circumstances, and if so what? Your answers could help a lot of us. :)
I'm interested in your comment that you get paid for caring through direct payments, yet you are a family member living in the same house.


Given the main thread , I too will be most interested.

https://www.carersuk.org/forum/support- ... 20payments


Any benefits being claimed ... especially income related ones ???

Add CUK itself ... the whole scenario is with them to sort out !

How your LA is getting around Employment Law ... the crux of the issue.