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.

Contact Social Services.

But be aware that Parkinson's does not automatically mean his care will be council funded. If he owns his own home or has savings he may need to self fund.

You contact social care and ask for a needs assessment (assuming he is in agreement with all this as nothing can be done without his consent unless he lacks capacity).
Be aware that if social care are funding then it is up to them whether they feel a care home is needed and they choose to fund it. They are unlikely to do that in the scenario you describe. They will more likely suggest aids and adaptations at home and a care package which they will pay for if he has under the savings threshold.
If he wants to sell his home and pay for a care home privately you can still ask social care to assess but you will be on your own arranging it. You just google places, go and visit them and discuss terms. Social care might have a ‘property disregard’ scheme where they pay for the care home initially and you pay them back when the house sells but you’d have to ask them what the terms are. Do you have LPA for him? If not then get him to do it asap.

Contact social services and they will take all the information and do an assessment. They will tell you your options. I

Social care will also do a financial assessment but he’ll have to supply bank statements etc. If he has under the threshold amount they will pay. The value of the house doesn’t count whilst he is living in it but will count if he goes into care

As said by others, you should contact social services but, if your dad still has capacity and you don’t already have them, and, of course, that your dad is agreeable, I’d advise getting powers of attorney for both financial matters and health and well-being. It will make things easier in the long run.

Do you know about Attendance Allowance?

I would advise getting Power of Attorney as well, both finance and health ones.

Make sure there is a will in place, as well as the POA’s

No, what is attendance allowance?

Thank you for all the advice here, can the social care people make a decision on whether he is safe and able to live in his house or do we decide when he needs a care home? He would prefer to stay in his home as long as possible but has to navigate the stairs to go to the toilet and bathroom and they might think the stairs are too difficult for him. He wouldn't want to sell his home to pay for private care but it would seem he doesn't have much choice once he can't cope there on his own. I have done the LPA but am waiting for it to be approved.

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.

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.

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!

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/

@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.

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

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.

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 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.

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.

Thank you all so much for all the advice here it's been very helpful.

Unfortunately df had a fall and was taken into hospital 5 weeks ago and I have been struggling trying to deal with things and visit him every day so not replied.

He was very delirious and is still fairly confused which probably won't return to normal due to the disease and its progression. I probably understand about 20% of what he is saying. He has been bed bound, having physio most days, but is now barely able to walk and is using a walker with assistance of 1. Has a catheter and needs to be taken to the toilet to empty bowels. The OT has asked for photos and measurements of his house if they need to adapt the house/ bring in equipment. They are saying he could regain some mobility but it's hard to envisage because his muscles are so weak. A commode would have to be brought in and a bed put downstairs if he returns home with carers coming in 4 times a day. He needs to be able to wee without a catheter otherwise he can't return home also. So just waiting to see how he gets on and where we go from here.

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'

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. 💐

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.