How do I sort care home and funding for dad with Parkinsons

[Pearandavocado]

Dad with Parkinsons struggling to get started with next steps. He is living in his own house and just about managing. His walking is getting very difficult and he can't manage without holding onto things or furniture. At some point he won't be able to walk and will need to go into care. He doesn't have any savings as such just his pensions going into this bank and some credit card debts. His house is almost a wreck and is not saleable as it is (he started diy and never finished it). He has an equity release mortgage and no idea how much equity he has in the house. Where do I start and how do I go about finding and funding a care home for him? Any help most appreciated, I'm struggling to see his decline and suffering from depression myself and this all feels too much but I don't have any choice to sort things out for him.

If he has his own house he will have to self fund. The majority of his pension will also go. My dad is left with less than £40
per week. I am having to pay for all the comforts he has had all his life that can no longer afford. It's cruel.

He was transferred from the main hospital after 3 weeks to a community hospital for physio/ OT support to try and get him mobile again. I guess this is what you mean by 'discharge to assess'? then he would be transferred home or to a care home depending on condition from there. The catheter was put in because he was retaining a large amount of urine, he then got a urine infection, the nurse said they will try taking it out to see if he has the urge to go, but can't go home with a catheter. Medically he is ok. He has delirium and hallucinations and the OT mentioned a cognitive assessment which he hasn't had yet.

He has Lewy body so the delirium is typical with this. I think the catheter has partly been put in due to ease of toileting.

He does have his own house so I guess it will be used to pay for care. That's shocking your dad has been left with less than £40 a week and you are having to pay for his comforts. Maybe I should buy whatever he needs now, like a portable dvd player/ iPad now before it's all gone.

I'd have a think about what's likely to happen over the next six months or so and speak to his consultant about that to help you plan.

My DM insisted my DF came home after a long stay in hospital and she was going to look after him with the 4 carer visits but then ended up calling an ambulance for both real emergencies and when they'd had a bad night and wanted a break. DF being in on repeated long and short hospital stays, unplanned, was not great for anyone involved.

Speak to social work about moving to a home and start scoping out what's available locally.

Homes have a lot of activities and your DF will get more out of them while he's more able. Moving to a home isn't easy but the more he declines, the harder it will be.

Are you able to look after him at nights at home if he gets discharged? Or cope with middle of the night emergencies? That's a biggie in terms of where he goes long term.

I'd buy what he needs to stay engaged during what could be a long hospital stay, or stays - it will be useful for a care home as well.

Also, I'd use him being in hospital as an opportunity to sort out the house - speak to the equity company and see where you are with them, sort out any major DIY issues if it's worthwhile and he's likely to end up back at home.

Lots of people of course do live at home witn catheters. Carers can empty and change bags if the person can’t do it. Confusion or lack of mobility: recurrent falls are the most common reasons for not going home. Most other stuff can be managed.

Thank you so much for your replies, very helpful.

Update today, OT spoke to me and said he won't be able to go home and needs to go to a care home. She mentioned a discharge to assess which would take place at the care home.

She also said despite him not being able to walk or stand without assistance, toilet without assistance and not being all there cognitively and she said he doesn't have capacity to make his own decisions. He can have a CHC assessment but not until he is in the care home and she thought it unlikely he would quality as it's notoriously difficult to gain.

So the next step is they appoint a social worker, then do a financial assessment. So house would have to be sold to fund care.

Do you have LPA for finance? If not, and he is deemed to no longer have capacity, then the house would not be able to be sold. My stepfather was in this position - although he only owned part of it and the remainder was held in trust. It also had equity release on it. The Local authority disregarded it within the financial assessment as once sold and all debts paid, the remaining funds coming to him was on the threshold for self funding.
As part of the financial assessment, all his income will be taken into account and he will have to contribute all of it less approx £35 a week allowed for personal items. He will not need any other money though as all his needs will be met in the care home. My stepfather’s personal money was deposited in an account with the care home so they could pay for his hair cuts and buy toiletries as and when he needed them. When he died after being there for almost 2 years I was handed back well over £2000 from this account.

He can have a CHC assessment but not until he is in the care home and she thought it unlikely he would quality as it's notoriously difficult to gain.

Please do not believe any of this. I am an expert on this having got this for my late OH on appeal - and also from having been a hospital social worker and knowing how the system works. People tell you total bullshit .... They are primed to put you off applying and people just drift away thinking they do not qualify when they do. It is a disgrace.

He does not have to be in the care home to apply - that is total nonsense. The application can be made in the hospital now; and indeed people are entitled to CHC funding for care in their own home where this applies (not in your case I know). What you have been told is quite simply an untruth. And it is one that is spouted all the time - it is totally iniquitous.

Basically CHC funding comes from the NHS and he does not have to contribute at all (unlike LA when he does have to make a contribution or pay the full amount once his house is sold.)

This is the assessment form - take a look and see where he fits in: https://assets.publishing.service.gov.uk/media/635165f38fa8f554cb9dc2e8/NHS-continuing-healthcare-decision-support-tool-guidance-2022.pdf You have to wade your way quite a long way down the form to get to the meat.

But before you do anything else or start letting LA assess his means, contact Beacon CHC where they will give you free advice. They are the experts and it costs you nothing. They will tell you every detail you need to know and you only pay them if they launch an appeal on your behalf, and even then they will give you free advice to do it yourself, as I did. My OH was refused twice, but I still got it on appeal.

But, hopefully no appeal will be needed. Just talk to them - they will help you with this. https://beaconchc.co.uk/

Do not be fobbed off - I have watched this happen so many times and it makes me furious. People just believe what they are told and so often it is not accurate.

Get hold of an Equity Release statement ASAP. I’ve just been through selling the house to pay for care and you’ll be amazed how quickly the interest builds up. His was adding about £2k per month. This is important to know for how much funding you might or might not have

We have been in a very similar situation.

My dad (also Parkinson's) was in hospital for 5 weeks before being discharged to a care home in Summer 2023. Despite not being able to walk, wash, go to the toilet and at times not being able to feed himself or communicate, he wasn't granted CHC funding until a final hospital admission last month when he was discharged on End of Life care.

In the meantime we have had to pay the care home fees from his & mum's savings. I even had to loan them some of my own money.

We were told it would be reassessed in 12 weeks. Just what I need to worry about right now!