Advice please - point me in the right direction

[r3dh3d]

This has probably been done often on previous threads, but I don't know where to start looking. So, am afraid I will now drone on for a bit (to avoid dripfeeding), please bear with me if you've heard it all before...

DH is very close to his grandparents, who are in their eighties. They are a remarkable couple: he had an accident in his early twenties and has been in a wheelchair ever since. He's had various health complications. She had a double heart bypass years ago (I think thirty-odd years ago) and is quite weak now and anyway a tiny wee thing compared with him. So they are frail/vulnerable, but make about one able-bodied person between them so working as a team they amazingly have managed to live together in their little flat with no support from the outside world, other than a helpful neighbour, the occasional visit from relations and a Tesco delivery which DH does on the phone for them.

She had a stroke last week. She has lost all use of her right arm, and has limited use of her right leg. Cognitively seems fine.

Can't get any sense out of the hospital (we only managed to get up there this weekend and of course it's bank holiday so no-one on duty) but they seem to be intending to keep her in for a few weeks. That's all they can tell us.

Now, I can see this going to hell in a handbasket in a number of ways. I'm not convinced he's safe in the house alone at the moment. I'm not at all sure they should/will release her back into the house because I think she's probably going to be bedridden and there is no way he can care for her, if anything it's been the other way round. I'm concerned the hospital aren't doing any assessment or making any plans for therapy (Physio? OT? SALT? - her speech is affected) I'm worried that they won't release her because there's no-one to care for her. I'm worried that they'll put the pair of them in a care home when really what they need is nursing care, either in a home or at home. And - of course - I'm worried about funding whatever care they end up needing.

So. My gut feel is that I need to demand assessments from the hospital (to establish her health need) and maybe matching assessments of his health need (how to do this though, as he's not the one in hospital?), work out where it is they ought to be, and what help they need there, and then try to get it for them.

Where do I start? Any links or whatever to help me understand the process and their rights in all this?

Thanks!

Apologies for not knowing for sure (am no kind of expert), but from my experiences with my gran and MiL I think you need to contact the local PCT (primary care trust) and find out from them which departments to contact and what their processes are. And double check it with a second call, as some don't know their arse from their elbow.
If you don't know where to start, just call their GP.

After an accident, my gran had an OT assessment that arranged for changes to her home furniture and her bathroom being changed into a wet room. She had two carers a day Mon-Fri, and managed on her own over weekends. However once she went into hospital she never went home again - her condition deteriorated dramatically over two months (having gone in with a knee infection) and we all pretty much believed that being in hospital is what finished her off.
My MiL had a combination of respite care and continuing care at home for over 10 years, and it was a never ending nightmare of poor care and burocracy.

After seeing both of their situations for years, my main recommendation is to keep an extremely close eye on their care, medication, and to visit as much as possible. If at all possible, someone (you/DH/another close relative) needs to apply for EPA - enduring power of attorney - for both grandparents. My mother had EPA for both grandparents and it made a great difference, esp with legal and financial issues, but also in dealings with medical staff. Many dodgy things happened with my relatives, and they all had daily family visits - I shudder to think what was going on with those that had no family to watch out for them.

With all council departments, hospital departments (gran had three separate consultants on her case) the left hand generally doesn't know what the right hand is doing! It seems petty at the time, but in hindsight of sooo many bad situations we wished we'd nagged/hassled them more.

There is also a tendency of all medical staff to assume that all elderly people have dementia - generalisations on both sides there! With my grandad we had to point out his confusion was a new symptom, they treated him, he magically went back to normal. Same thing happened on other occasions with both my grandmothers.
But with my MiLs actual dementia, the doc in hospital didn't bother reading her notes so didn't realise she was nonverbal, and basically put her down as 'refusing' tests that could have saved her life.

Sorry for mammoth post, hope my tenpence helps! Good luck helping your DHs grandparents get sorted, hope I haven't been too much of a downer, I just believe forewarned is forearmed! :)

Aww bless ? sounds like they?re a lovely couple.

The hospital should be giving you advice and referring to Social Services etc. It?s crap that they haven?t bothered or haven?t told you about it if they have.

What I suggest is that you ask the ward staff whether they have been referred to anyone and also whether / what type of therapy and ongoing support they?re looking at.

If they haven?t referred her to social services, it might be wise to contact them yourself (telephone number will be on the website for your local office) and at the same time, request that they complete full assessments with both of them and ASAP.

Although he probably has involvement from social services already, his circumstances have changed completely because of his wife?s ill health so that warrants a full reassessment. Both of them are entitled to assessments / care support in their own right and helped to maintain their independence at home as much as possible.

Neither she nor her husband can be placed into care by anyone if they?re able to express this choice and have the mental capacity to make that decision so don?t worry.

Although her stroke has left her without use of her arm, she still has some use of her leg (even if this is limited) but with the right therapy and support, she could make some real progress and strengthen / improve mobility. The fact that she doesn?t seem to have any cognitive impairment is a good sign too.

Just including a couple of links to websites that have lots of helpful advice and guidance you might find useful. Keep us posted. :)

www.stroke.org.uk

www.direct.gov.uk/en/DisabledPeople/FinancialSupport/Introductiontofinancialsupport/DG_10020535

www.nhs.uk/Conditions/Stroke/Pages/recovery.aspx

www.adviceoncare.co.uk/paying-home-care.htm

Much more useful advice there, thank you Parly! :)
Sorry for my v long post, i was a bit waffly last night...