Stroke - father, what other help is available?

[snoodles]

My father had a stroke earlier this year. He doesn't have use of his left arm, his left leg is getting some movement but he can't walk by himself.
He has 4 x carers a day to help him get dressed and help him on the commode. He has started going to a day centre twice a week. He has capacity, but I can see him deteriorating. He is in his 70s and is constantly calling for my mother who is also in her 70s and they both live in the family home.
He shouts for her to help him wee in a bottle. To bring him things, to lift his arm, to do x y and z. Mentally this is really draining my mother, it's tough work and she feels her life as she imagined is now ruined. She barely has time to make a sandwich before my dad calls for her it's very sad.

I live over 2 hours away. I don't have space for my parents in my house; they also don't want to move.

My father has care paid for. What other help could I look for? Some in home extra help so mum gets a rest? Mum would send him to a home if she could, dad says no he doesn't want to go. We aren't in the financial position to pay for a care home. Should I get him assessed for a care home?

I'm confused and really feel for my mother. She hates life and I want to help her. Any advice would be appreciated.

Who is funding the current cate arrangement? Social Services were prepared to pay for regular respite after MIL had her stroke to support FIL. Sadly he rejected it and then constantly moaned about not getting a break.

Dad is getting full funding from the council.

Dad is getting full funding from the council, that includes the day centre. Could I ask them to fund some respite? What sort of respite did your FIL reject? That's a shame he rejected jt

Does he receive Attendance Allowance and your mother Carer's? Are there any local support groups for stroke survivors and carers?

He does get AA. Unfortunately there are no stroke or care support centres etc in their area.

Social Services were prepared to fund a week's residential care for respite several times a year. He needed it but he was full on "she's not going into a home" stubborn. For the first 2 years after her stroke she was in a home 5 minutes walk from their house and he spent all day there most days and had his meals there. It was the perfect arrangement as he could get a good night's sleep. But he used to get in major strops with the staff if they couldn't react instantly, and I really mean instantly, and got told off for aggressive behaviour so he took her home and that was it. I don't think he had a full night's sleep after she came home. Even when he was dying it was a struggle to get him to accept she needed residential care even though she is profoundly disabled and can't do a thing for herself or talk, read or write to communicate. Eventually we got him to accept a day centre twice a week but even that was a fight.

The Stroke Association have a helpline www.stroke.org.uk

Age UK helped ILs a lot.

Thank you, yes I got in tough with them when the stroke happened but I think I should do this again

How are things now, OP? It sounds to me like your DF is either lonely or worried about being left on his own. Could you ask for volunteer companion carers on Facebook or local site? To pop in, make and share a cuppa, or read him a chapter of a book or extracts from the newspaper, or do a crossword together, or listen to music/watch a DVD together. I wouldn't expect them to help with a urine bottle, but they could do some of the other tasks and give her a break.

Is he having any physio or OT to help him learn to manage more himself?

Thanks for asking. The situation is worse and we are waiting for a call from the social worker today. They are so difficult to get hold of. Dad is very anxious, and also has called people at 2am, myself included asking a question and not realising the time.

Care visits have increased to 6 a day, it's not helping. We paid for full care for a couple of days when the situation got very tough but we need to find some private carers to help too. I had a look for some volunteers that could provide company but nothing available in their area.

We need respite care soon but it's taking so long to organise. The current carers are excellent, really wonderful but then get a lot of staff calling in sick too.

He does have physio often, he walks to well for them, but he isn't motivated to do exercises himself and although carers have had training to walk him to the commode or toilet, they say he isn't stable with them. Something in his brain just shuts down. I feel for him very very much

Has your mother had a carer’s assessment? She is entitled to one, carer fatigue is very real. It might unlock some further support. Also has your father had his anxiety assessed and treated? His GP may be able to prescribe medication and/ or talking therapy to reduce this.

Very difficult situation and it’s awful that your mum has been forced into this.