Getting help for DF

[spydie]

Apologies if this is the wrong room, DF is 67 so starting to class as elderly! Second apologies this might be long!

Brief background, he's had 10 + years of liver disease and has deteriorated very rapidly in recent months, being in and our of hospital since early November. He has had a procedure that has left him suffering hepatic encephalopathy: confusion, shaking hands and mobility issues, which varies in its severity. This put him back in hospital before Christmas as he was in a real state, 999 call in the middle of the night as he was basically unconscious.

He's at a point where the Dr's are waiting to see if this settles over the coming weeks, if not it can be reversed but then the last option for his liver disease is a transplant (which he may or may not be able to have). Current state is he's pretty confused, some days better than others, and on worse days struggles to perform everyday tasks such as making his dinner.

My much younger brother lives with him still (early 20's) and I live 2 hours away with a young family, although I've been up and down a lot. My brother works shifts where he is away for a couple of nights at a time, so he doesn't have someone with him all the time. Also added complication of my brothers attitude and frustration with my DF and he's now saying he can't live with him anymore.

DF is currently signed off work sick but I can't see he is going to be in a fit state to return to work at any point - he works from home in a software role. He's already receiving his state pension, but his income makes him ineligible for any benefits. He rents his home privately and if forced to retire (which I really see as the only option) would struggle to afford everything.

We are starting a power of attorney application, and I'm now organising food deliveries as he can't drive (and dear brother doesn't want to take him shopping...), but I need to try and understand what our options are, what help he can get both care wise and also financially if he is forced to retire. Can anyone offer any advice or places to speak to? I worry about him alone and this week his mobile died and I couldn't get hold of him while my brother was working... they got rid of the landline but I think we need to get one put back.

Living with us isn't really an option, he doesn't want to (and we don't really have the space but would make it work, we offered for him to stay with us to recover) but also he's under a large teaching hospital and I do believe has better care there versus our local hospitals.

The ageuk website has some really good information and factsheets, don't be out off by the fact it's for older people, it sounds like you dad has similar needs to someone older needing help.

Secondly, social services can do a care needs assessment and offer information about help available. You can self-refer on your local authority website usually and it should also have some advice about help and support available locally.

CAB can advise about benefits and entitlements and there are some good charities that can help with this too.

so your dad is at home with no carer help?
can you get him an emergency alarm pendant?

can you get him a mobile?

He is still getting his salary so what about getting private care while you wait for an assessment. Then have a look at what he gets when he retires - lump sum, workplace pension etc

then you will be in a better position.

I can understand your brother won't take him to the supermarket, if he is shaky etc then that's not quite right for him to go.

Thanks angeltattoo that's really helpful. Had no idea you could do a self assessment, obviously this is all very new to me and somewhat unexpected.

Emma Emerald he's at home probably 50% of the time alone, yes. I'll look into a pendant. He has a mobile but let's the battery die and then forgets to charge it, so can be completely uncontactable.

I'm trying to understand how much longer he is getting his salary for before going down onto SSP.

My brother not taking him to the supermarket is less to with his mobility (he can get around ok) and more I don't want to, I want to do my own thing.

Is he in hospital now? An you ask the discharge coordinator what type of support is available where he lives on discharge?
it sounds as if he needs a referral to social services. Age Uk and citizens advice can be really helpful too

The pendants are often dependent on a landline so you might need to do the two at the same time - there might be some that are mobile only, I don't know.

you mentioned mobility issues in your first post. Mum walks with a stick now but I took her for her first lunch out (since having a stroke a couple of months ago) and she enjoyed it. Would your dad enjoy lunch or pub or coffee shop, you could take him for a change of scene?

re money, there might some kind of "early retirement for health reasons" option at his work and that would be much more than SSP.

I know it’s hard but your brother is not to blame for your dads state and he is in his early 20’s. You shouldn’t resent him for not wanting to be a full time carer just as he shouldn’t resent you for living a few hours away with a family (being busy.) Your dad has had this heading towards him for a number of years and doesn’t seem to have made much provision for it.

Was he planning to rent till he dies, in which case he must have a fairly good pension coming to him. Can you apply for council housing? It’s likely he will deteriorate more and maybe need living on one level- is his current rental suitable? Would the landlord be amenable to adaptions if needed? Can you talk with his GP and ask for an OT assessment to help with a pendant alarm for the flat? Does he eat well/clean himself and the house? Would he need carers? Getting POA is a great idea, find out about pensions/savings/insurance he may have when he is lucid so you aren’t scrambling round looking for paperwork when he can’t help you.
Talk to your dad- if he doesn’t improve and isn’t suitable for a liver transplant what would he like to happen? Would he want to stay at home with carers or would a care home/supported living be more suitable.

Unfortunately he's been really quite nasty to my dad recently (I overheard yesterday some of the things he's been saying while on a video call with dad) and making my dad cry is not fair. Ive been trying to support my brother from afar (and in person when I can) as best I can but he doesn't make it easy and I'm sometimes amazed at how selfish and nasty he can be. I don't say that to him of course, and I know it's difficult living with my dad as he is right now, but equally it's not necessary. Up until November dad was working full time and fully self sufficient, and subsidises my brother massively.

Yes my dad has had the liver disease for a while, but this is a sudden deterioration, at his consultant appointment in the summer they were happy and he was stable. Its not been until I've pushed the Dr's recently that they have finally admitted the severity of the recent situation. Either he's not understood, been in denial or they really haven't told him, and given some of the conversations I've had with the medical staff recently I could well believe that.

He doesn't have much of a pension, he's really got nothing but a decent paying job that up until recently he enjoyed and was good at. He's had bad luck, redundancy in the past and hasn't been in a position to save. Council housing is definitely an option and I wonder if we can look into that where I live rather than where he is, as otherwise I feel he'd be even more isolated. He's in an old cottage currently, rents from an estate and I know they are pretty amenable but whether the home continues to be suitable long term remains to be seen.

Thank you, some good suggestions to look into here too.

I'd be looking at sheltered accommodation for him. Are there any schemes local to you that might be suitable?

I agree with @AluckyEllie. It’s not your brother job to care for your Dad. It sounds like your Dad has failed to make plans. You need to have an honest chat with your brother and your Dad and your Dad needs an assessment by SS.

Seems like your Dad is quite poorly OP and I’d suggest you have an honest chat with the ward manager about your concerns for him going home. They can’t discharge him unless he’s either safe to go home (occupational therapists often visit to see if the patient can function safely) or there’s a package of care in place. I’ve been in your shoes and worried myself sick about all the different scenarios… in the end the hospital discharge team guided us through what was best. Agree Age Uk have good advice, also carers uk have useful forum.

I also wonder if your brother is scared he’s going to become a carer? Early 20s is very young to deal with a very sick parent. 💐

e money, there might some kind of "early retirement for health reasons" option at his work and that would be much more than SSP. Unlikely to get early retirement if you’ve already passed state retirement age

Had a very dim moment there 😳