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

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!

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

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.

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.

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.

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.

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.

They might do ‘discharge to assess’ where they discharge him to a care home paid by the NHS for 6 weeks to see if he will recover enough to then go home. A lot of people do end up staying but as you say it depends on how much he recovers. It can take at least 6 weeks maybe more.

I feel for you @Pearandavocado It's a hard road to be on. It doesn't sound as if he will be safe going home even with carers coming in four times a day.

Do you know the cause of the delirium? Does he have a UTI or Lewy Body? Has he been catheterised so that he's more easily toileted or is there a prostate issue?

Have you any support yourself? You could try https://www.parkinsons.org.uk/ if you haven't already. Please take care of yourself. 💐

Sounds like they are doing assessments for whether he can return home. Don't allow him to make statements about what you will or won't do, speak to the discharge co ordinator yourself. It sounds like they are treating the catheter as temporary. If they decide it's not then he will also need a package of catheter care from the district nurses. My dad was discharged with a temporary catheter so they can still discharge with this , though they don't like to as the bladder can become accustomed to it. He then ended up with it permanently for over 10 years. They will also look at whether he is 'medically fit' to leave hospital (not whether he is able to care for himself) and that's when you have to make sure any care package is in place BEFORE discharge. He may be better of going to a 'discharge to assess' place which gives him 6 weeks to actually get himself back together without being put back home. If he has delirium then they should also assess what his new 'baseline' is if this isn't improving. If social services/discharge coordinator/medical team don't seem to be on the same page, then the words you need (repeatedly) is 'unsafe discharge'

You do have a choice OP and by accepting LPA you are making the choice to be involved at least to some extent. If you don't want to be, then pull the plug on that and leave it to SS to sort things out. This won't necessarily be any easier on you, as you'd have to walk away from your dad, but it's still your choice.

Have you applied for Financial and / or Health & Welfare LPA?

If he has capacity, he decides where to live. SS can make an assessment but unless he has lost capacity he won't be forced to move irrespective of what they recommend. They will also do a financial assessment and decide if he is self-funding or not. He or you will have to provide the financial information to allow them to make this assessment - so (especially if you are going to be his attorney), you need to get into his paperwork and his bank accounts and find out what's what.

SS care assessment should take into account his living conditions, but there are many options between living at home and going to a home. e.g. can he sleep and toilet downstairs if a commode is provided (carers would empty it)? Is there a bedroom / room that could take a bed downstairs? Again, if he has capacity, he decides what happens - for better or worse. This is usually where adult children get sucked in - trying to make changes or provide support that enable the EP to live at home, in an increasingly unsustainable manner, until the wheels come off and a (usually medical) crisis happens. At which the EP ends up in hospital, and everything needs to be reassessed depending on the condition they are in when they leave.

Have a think with your dad about the following aspects of care that can be provided by carers up to 4 times a day:

Medication given
Help to wash / dress / toilet / undress / ready for bed, morning and evening
Food served / fed and cleared up
Drinks served / given

Ask yourself what does he need help with and can it be done, given the house layout? The SS assessment can also propose adaptations such as bars to hold, mobility aids etc.

The things that carers / SS generally won't do are:

Cleaning / housework
Laundry
Ordering medication
Making / getting him to medical appointments and keeping on top of these i.e. chasing referrals etc
Sorting out administration / general life - paying bills, buying clothes etc.

Ask yourself how these will be dealt with if they aren't already?

My MIL had Parkinson's plus other conditions. She stayed at home with help from family until she was unable to walk and no longer continent. She never had carers, but FIL unfortunately wasn't a great carer at home - she hid her medication, didn't eat much, didn't drink etc. so ended up delerious, in hospital and went straight to the nursing home from there.

If SS are paying then they will decide when he is nolonger safe at home and they’re willing to pay to for a care home. If he has mental capacity the he can’t he forced to accept SS’s suggestion and he is free to continue to live in an unsafe way if this is what he wants.

If he’s compos mentis he’ll likely hate a care home. Most people there have dementia and that applies even if not a specialist dementia home (those just have more severe people). I would do all I could to support him in his wish to stay at home.

If they are paying then they decide I’m afraid. He who pays the piper calls the tune. People who can no longer get upstairs usually either have a stairlift or just get a commode downstairs which carers empty. You can get an OT assessment of what aids and adaptations can be done to his home. Ask his GP or his Parkinson’s nurse. They would be very good at helping with this stuff. Attendance allowance is a good shout too. It’s not means tested You can just get the forms for that from the Post Office (or probably online these days) and fill them in.

https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/attendance-allowance/what-to-include-in-your-attendance-allowance-application/

@Pearandavocadore. Attendance Allowance, he could get to up to around £400 a month. I applied successfully for it for my DH who has Parkinson’s- and also for my mum who is 90. The form is very long. Don’t be intimidated by it but there are hints and tips on Age UK (I think) about making a successful claim. Please DM me if you need help with the form.

Go onto the Age UK website - they have all the very detailed information that you need.
Social Services will need to assess his needs and if they agree that residential care is required they can pay pending the sale of his house.
They could also refer to an OT and get equipment in that might mean he could stay at home with care going in - if that is what he wants.
Start with the Age UK website - it is excellent and comprehensive and will point you in the right direction. Here is the link to their info and advice section: www.ageuk.org.uk/information-advice/

Re attendance allowance - go to the gov.uk website and search for attendance allowance . As you have LPA you will have to print out & fill in the form.

If you have time and with your DF persmission you will need to rumage through his paperwork to get info on the equity release as SS may need that info to decide on whether he has to self pay.

The Aged UK webiste is brilliant for all sorts of information, especially financial. So you can check he is receiving all the benefits he is entitled too.

Does he get out at all ? My DP's local Aged UK group was / is a wonderful source of information and support to them. They run social groups, music sessions, all sorts. Also if your DF was in the armed forces the local British Legion can be a good source of support too. My DF goes to their monthly meeting in a local pub!

Care assessment, contact adult social care at his local authority.
Most likely in his current scenario it would be a care package and adaptions , normally up to 4 care visits a day (my dad was physically disabled and could barely walk but still deemed able to live alone, not being able to mobilse doesn't equal going into a care home )
It's worth finding out the details of the equity release as the equity release company can demand the house is sold if he has to go into care. He then has whatever is left after the equity release take back their share. If his savings are then over £23,250 he would be 'self funding' until his money runs out, after that social services take his state pension and he's left with an allowance of around £25 a week. Get the forms filled in for attendance allowance now as it can help pay for care visits etc.
He can also make use of things like care alarms and the community meals service and the community transport service. Social care would also be able to advise if he'd benefit from a day centre place a few days a week.

in a similar situation, we claimed Attendance Allowance that paid towards carers 4 times a day. A bed was put downstairs and when unable to manage with that package had to go into a care home. All ,one y from house and pensions had to be used for this.