Help and advice needed - care for elderly grandparent

[Mrsjones17]

Hi I hope someone might be able to give me a bit of advice. Sorry for long story but here goes:
We are a very close knit family and My grandad has just turned 84. He has a respiratory disease that eventually will kill him. He’s had this for a long time but will only get worse. He has been living at home (assisted living but no formal care) with Nan and she has been doing most of the care with my mum helping lots. My mum is a nurse and has significantly reduced her hours to help with care. He has a DNR in place and my mum has lasting power with my Nan etc.

Recently he went into hospital due to in infection and he was there for some time. During this time the doctors told my Nan that she wasn’t coping looking after him and he would need to go to a care home with nursing. she was devestated Whilst in hospital he became far less mobile and struggled to get out of bed to go to the toilet. Prior to the hospital he had been managing to go to the toilet in his flat with the aid of a walker. This is the main reason the hospital has said he needs a nursing home because my Nan can’t get him in and out of bed.

He has just been moved a nursing home and is utterly miserable. He is scared and sad and says that he is lonely and just wants to come home or die. It is heartbreaking for all of us. The issue is if he comes home I’m just not sure how we can care for him. We have been told he will qualify for 4 day visits and 2 night sits a week from nhs funding for care. The problem is the other 5 nights a week and obviously he can’t go to the toilet on demand when the Carers are there.

My mum has suggested we try to do it on a rota but I’m not sure she has considered that people might not be able to do the personal care like she can. For example I am not sure I would be able to and feel absolutely awful and not sure how to go about it. I’m 30 and never even changed a nappy before! I obviously want to help but I’m not sure my grandad would want us doing the care for him either. It would also mean hardly any break for my mum and for example I would work 5 days 12 hour shifts and then care all day Saturday and Saturday night every week. Selfishly I’m also worried about the strain it would put on my marriage etc.

How can we get more care? Can we pay privately and if so where do I like and how much roughly am I looking at?

What do other people do regarding going to the toilet??

I feel so helpless and lost.

Thank you if you have read this far!

Sorry you are in this position. I don't understand what you mean with the 4 day visits, is that just one call for 4 days or 4 calls each day, the same with nights is that just 2 visits a week or 2 carers every night. What I think you need to do is ask to speak to the carehome manager and ask for another care assessment from social services and see if they can get a physiotherapist or occupational therapist to see him to. If your nan is happy for him to go home he will need a hospital style bed, air mattress, commode, possibly some form of hoist, maybe a riser recliner chair, shower stool, urine bottles all these things can be given to your nan from the community, there's no charge. The therapists should also visit their home to make sure they have room for equipment. He needs to have a chc assessment done, look it up on line, even if he doesn't get full funding it gives you an idea of his needs. Of course you can pay for private care but you may not need to, he should also apply for attendance allowance and your nan may qualify for carers allowance which helps towards the costs. Finally try and see I'd he has a social worker, someone must have done a needs assessment for him so see who it was and say he'd like to go home. Does he have capacity to make his own decisions. He may also have a lung care nurse who could help plan him going home.

Couple of other things, is he getting social services funding or privately paying for his nursing home. He may qualify for f.n.c. payments if he has nursing needs in the carehome. If he is in assisted living is there a warden who you could talk to, is there any sort of call line or alarm system set up there. For urine incontinence he could use pads if he was happy with that which us something the district nurses sort out. If he does go home with carers make sure the carers visit him and your mum to make sure they can meet his needs, they should come up with a care plan, gice you an estimate of what it will cost per hour and make sure they have been trained in getting people in and out of bed safely, your nan and anyone else who is having to lift him needs to be fully trained.