Preparing for care assessment next week

[FiniteSagacity]

Finally have an appointment next week for a care assessment with LA ASC social worker where DF is living.

I am focussed on getting a professional to assess his needs and to tell DF what level of care he needs.

I need this from the visit because DF does not listen to his children and is in complete denial about the state he is in.

Most importantly, if social worker thinks DF needs to be in residential care, I need it to be said to him and in front of him (district nurses are saying residential care).

It’s a horribly complicated mess financially (DF does not have enough income for the visiting carers he currently has, very little money in savings but does have a house in a different area than where he is living that he is yet to agree to sell). We’d sell the house in a heartbeat (although it would be more complicated than that) but DF needs to agree to sell.

Looking for advice on what to get ready, have to hand and ask/say for the visit please - to keep it focussed on DF’s needs and these being made clear to DF.

@Babyroobs I did apply for DF and DF has just had it confirmed that he’ll get Attendance Allowance - and backdated to when we first asked for the form.

Thank you for asking - I think it’s important people know about the benefits.

It has been a steep learning curve and MN has been a helpful place to research.

I wish I knew what I should expect from each agency - gov.uk and NHS websites suggest they’re all there to help but we feel stuck between a rock and a hard place.

Wow that is a very complicated backstory. So you (family) stepped in to try and solve the problem in front of you, but things have continued to spiral. You really are stuck in a loop. I think the fact that you father has a mental illness (hoarding) rather than dementia etc complicated things, as different agencies have responsibility for dealing with them, and he’s falling between them.

So you’ve ended up in a situation where - on paper - your father owns a property so he is not eligible for financial support / subsidised care ie he’s self funding. But the house in question is a total shithole, which he can’t actually live in and which he’s reluctant to sell anyway. Technically he still has ‘capacity’ - in that he does not have dementia or other neurological decline. But he has a (serious) mental illness which does not allow him to make rational decisions. So, unless he gives permission and hands it over to you, you can’t just make decisions on his behalf. And as long as he owns the house and is self funding, the agencies will wash their hands of him.

if you can persuade him to agree to the sale of his house, that would be a step forward.

you have my sympathy OP. I have a FIL who, for different reason’s, does not make rational decisions and who is very hard to talk to.

Whilst this is clearly a very upsetting situation for your family, sadly if your father is deemed to have capacity then you will just have to accept that this is the life he is choosing to live.
My sister works in the community as an OT on the mental health team and has many clients like your father. Those who hoard can be the most challenging because it’s a very complex mental health condition. It’s frustrating for all those trying to provide support. Currently, no one can force him into a care home or agree to sell his home. Even once you receive LPA that won’t necessarily mean you can sell it if he still has capacity.
You now need to prioritise your own mental health, as hard as that may sound.

@rickyrickygrimes that’s very well summed up and thanks for the understanding. Wishing you strength for your own situation with your FIL.

@Soontobe60 thank you too for reminding me DF has made a lot of the choices that have got us where we are. I know hoarding is complex in itself.

We do need better boundaries, we all have our own jobs and families to prioritise. It’s just hard to watch and not try to ‘fix’ when there’s the next crisis.

Tell your sister the OTs have been the most helpful and insightful people we’ve dealt with. I don’t know how they do such a challenging job.

Where do you think your father should ‘settle’ , for want of a better word? What age is he? should he be near you - if you are the most active in trying to sort this out? Are your siblings involved and to what extent?

what does he want? and what do you think he will agree to?

(Sorry for all the questions)

@rickyrickygrimes DF is mid 70s and wants to be buried with DM which is near his house - but the town has really gone downhill and what he thinks of as home has changed (such as new neighbours). Sheltered options there all seemed to be local authority social housing/no space for private tenants or just horrible.

The sheltered flat where we could get a private place is very close to one of us and in a lovely leafy street, close to public transport, visiting is doable in a day. DF was actively involved in deciding and seems to like the area (although rarely steps out of his flat at the moment).

Social worker explained there are other levels of care before nursing home, but it appears more funds would be needed.
On the outskirts of his town there’s a leafy place with flats with care and a nursing home - futureproof - but they ask for proof you can afford at least 2.5 years…

I am very, very lucky to get on well with my siblings and we’re in it together, we’re just so time poor with jobs and school age children.

Ouf, that's very complex. You are having to juggle mental health issues, medical issues, social care services, environmental health services, legal / POA / benefits issues and a parent who technically has capacity but doesn't sound very rational or easy to deal with. And doesn't have lots of money to throw at the problem.

The bottom line is that if he is not living in the house that he owns, he will be considered to be self-funding. This usually means that social services will do a care assessment and make recommendations but - as long as he is deemed to have capacity - it will be up to him (you) to make the necessary arrangements. It doesn't sound like the social worker said that he needs to go straight into residential care? If the house is sold, then the money will be used to pay for personal care, up to the point where he needs to go into residential care. If the money runs out at any point, he'll move to being funded by the local authority. Does he have an income (pensions, benefits) that he can live on i.e. pay rent / buy food / pay bills etc?

In terms of care, what does your father actually need help with? Does he need help with personal care (eating, drinking, washing, toileting, dressing, taking medication etc) in addition to home visits from the nurses for medical care?

It sounds like he is getting less steady on his feet - is this connected to his medical situation? Can the flat be made safer - any trip hazards removed, mobility aids installed?

If he sees his money dwindling because of paying for flat/care and he has capacity is he likely to want to go home? Rather think of selling? What does he think will happen when he runs oitnofnmoney.

It's bleak but there is little you can do to stop him. There will then of course be the inevitable crisis (as care team can't/won't attend), hospital admission, etc, probably several times ending with care home admission. It will be mightily stressful and emotional all round. But if he has capacity then he can't be forced to do something he doesn't want to do. And you having LPA won't make any difference. If he has capacity you can't sell his house from under him if he doesn't want that as well.

It's hard

@rickyrickygrimes social worker didn’t exactly say what DF needs - can I expect/ ask for any actual document after this care assessment?

The discussion went to ‘extra care’ so current situation possibly not enough, sheltered plus / flats with on site carers would be better, and I’m looking into that but it’s likely that would be a move after funds from the house.

DFs needs are mobility and medication, he can move around (very slowly with a frame) and feed himself but needs personal care, meals prepared, prompting with medication. Household tasks such as laundry, making the bed and cleaning are beyond what he can manage safely.

Pension income was enough when he had no rent but it wouldn’t cover two weeks of residential care.

@Bankholidayhelp I think DF knows he couldn’t actually get himself home by himself, nor could he cope when he gets there. We’ve had crises in the sheltered flat which is why we’ve been trying to work out if the current set up will meet his needs - it probably has to for 3-4 months.

This week he seems to be getting used to carers. I’ve had his permission to get a valuation but beyond that it’s full ostrich head in sand for now. At times DF has been in full denial about not going home or wanting everything from his house brought to his flat.

I’ve left it that we’re fact finding and once we have more facts, such as the valuation, we’ll have to talk about the money again.

Now another care assessment - with hospital social worker… so coming back to see if anyone has any experience of care assessments by a hospital?

DF is really up and down and presented as perfectly sane to Adult Social Care social worker who visited him in sheltered less than a month ago.

But DF has declined rapidly and medical professionals at the hospital are saying he doesn’t really have capacity, it’s not safe to discharge back to visiting care and they have sent their report to hospital social work team.

But no idea how long it will take or whether the council assessment makes any difference.

It was the hospital social worker who finally put an end to all the back-and-forth discussion between Drs, nurses, OTs, physios and social care - and who made the judgement that MIL was not safe to be cared for at home and needed to go into residential nursing care. We (DH, SIL and me) already knew that this was the case. FIL was still determined he could take her home, but hearing it from a professional put his gas at a peep, and we were so relieved to have that decision made.

Is your father back in hospital OP? What has triggered the involvement of the hospital social worker?

I can't see if you've said above whether you or your siblings have POA for your father. This will become very important if you seek to sell his house and release funds / move him from self-funding to council funded.

@rickyrickygrimes yes DF is back in hospital - I think he felt bullied into it by paramedics (but he was seeing them far too often and this team were more cautious when he tried to send them away).

On this visit to hospital, professionals have done more assessments and have had enough time with DF to have concerns about unsafe discharge and he has been properly admitted rather than being in an holding/assessment area.

Family have visited and on any given day DF can be bright and chatty or subdued and confused - but his physical condition is also a concern. DF has been a puzzle for the professionals but they asked for a meeting with family and have referred to the hospital social work team.

LPAs signed and sent for registration but not fully registered yet. Not POAs and no formal diagnosis yet - so we really need the 6 weeks’ grace of intermediate care.

I have the Financial Assessment form from the Local Authority so trying to gather all the information and evidence together ready for that part. I hope to show willing and be as transparent as we can - but really worried about the different areas.

I’ve heard there’s potentially a 12 week disregard on the house value (which ASC at council should really have told us) so think DF might have to contribute something after 6 weeks based on income - but his savings are way below threshold. Hoping it’s possible the LPAs could be invoked close to the end of the 12 weeks.

Thanks for sharing your experience and it’s definitely proving helpful when the professionals are telling DF what he wouldn’t hear from us.

Hospital discharged DF back to sheltered with visiting care (which they’re already trying to reduce down when their care plan clearly says the level they started was to mitigate all the risks).

The discharge note and the care plan lie - saying ‘family agreed…’ to this and that in terms of supporting the unsustainable and unsafe multi-agency house of cards.

The worst thing is that the Doctors will think family didn’t listen - when the reality is we briefed social worker on medical opinion, that we agreed with.

Social worker then allegedly spoke to DF (he didn’t remember this conversation) and gave him what she said he ‘begged for’, which was not to go into a care home.

We did force hospital to handle the discharge and putting the house of cards back up but I’m dreading the bank holiday weekend crisis.

I need to sharpen my pen and consider my words. It not safe to say ‘I understand’ in response to anything - so if social care call me shall I be all pre-school and just ask ‘why?’ to everything?! Or just say ‘you are telling me’ and play it back.

You could ask to record future interactions with SW on your phone "for your own notes".

They'll probably refuse permission though!

@EmotionalBlackmail I might ask (to record) even though I think the answer will be no, simply to send a message that I’ve learned that I need to.

Care agency doing the ‘ongoing Homecare’ have shared the care plan they got from the hospital, I don’t know if hospital know we have it.

I intend to ask the hospital social worker for a copy and then reply with my prepared corrections - because I need to make it clear we are not happy.