Care home fees and top ups (dementia)

[WhatwouldJessicaJonesdo]

Feel like we are in a living nightmare at the moment and the financial pressure is worrying us to death.

F in L currently is in a care home for emergency respite. He lives at home with M in L and has mid stage dementia. MinL is on her knees caring for him and he will need to go into a home permanently at some point within the next few months.

Their assets are under 14k, and so they qualify for council funding. The last assesment indicates that the council will pay approx 500 per week.

Two homes have been offered within this budget, neither of which offer an en suite toilet or are easily accessible on the bus by M in L who does not drive. The toilet is required as FinL has urgency issues following cancer treatment and mobilty issues following a hip replacement, without an en suite he will have accidents affecting his dignity and causing more work for the home. To visit during the week M in L will need to get the bus, as we work in the week and have young children. There are no other family nearby to take her. The upshot being that M in L will travel right across town on a number of buses to visit in all weathers, or no one will be able to visit FinL during the working week to check on his wellbeing/reduce his isolation.

The home he currently is in for respite requires a top up of approx £200 per week (its doesn't seem to be offering any enhanced care but does offer an ensuite and is on the bus route.)

1k per month top up fees is completely unsustainable for MinL or us.

I understand the council have an obligation under the care act to meet FinLs needs with a home that is within their allowance, and top up should only be asked for if the home is offering an extra level of support/care.

Is it fair to ask the council to find an affordable care home which provides an en suite room and is easily accesible to MinL? Does that count as meeting his needs and is that likely to be enough to encourage them to increase the amount they will fund? We aren't looking for somewhere just because we want a more expensive care home, we just need somewhere that is good enough to provide a decent level of care, an en suite toilet and is accessible without paying 1k a month extra for it!

Its a minefield!!!

But the homes within budget can meet his needs. The travel for mil is irrelevant, and the en-suite is a nice to have rather than an essential. There is no infinite pot of money, and care needs to be equitable to all who need it.

You'd probably be best to make some enquiries yourself to your preferred homes abd see if they have space and what the fees are. You can then discuss this with the SW.

Good luck, it's a really hard situation

Unfortunately the local authority departments do not appear to be able to communicate when it comes to needs assessments and financial assessments. They will pay £x but the home needs £x + y pounds to provide the care required and unless there are enough self funders in a home to subsidise this then things like en suite will not be funded.
Does seem a silly way of operating as it will cost the home more in the long run (laundry, bathing and a distressed resident).
Does he have pensions which will go towards top up?

Has anyone explained that there's a client contribution to pay from income (his only - and half of any private or occupational pensions are disregarded plus personal allowance of £24.90 pw.)

In addition to this there can be a top up but only if you have requested a more expensive home than one that can meet his needs.

This is where it can get difficult but it's worth challenging - in the council where I work they've backed down often when vigorously challenged, as to why other suggested homes aren't suitable. www.communitycare.co.uk/2016/09/29/questions-answered-choice-top-ups-care-act/ and assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/315993/Care-Act-Guidance.pdf annex A

So sorry you are going through these additional stress just now where there is so much to deal with.

How do the homes deal with stress/urge in incontinence ? DM used a commode for a few days, we used liners and had a bin beside it so really quite straightforward, really no loss of dignity.

Are there any volunteer services around who could take MiL to visit in weekdays? There is one local to us and another entirely separate one in DM's town.

Hope you find something that works for you all.

In short no.

En-suite rooms often attract at top up and the 'need' can still be met with a commode in a non en-suite room. This is fairly standard practice.

Your MIL can get there to see him it just isn't very convenient for her, but most care homes would be happy for her to spend a lot of the day there once she got there if she wanted to.

There is no way the council will agree to fund a top up when they have vacancies available that can meet his needs within council rates.

Unfortunately this is where having your own assets often buys you more choice (like location, en-suites etc) in these situations.

If the council had a care home with vacancies nearer to MiL that's within council rates then they would have offered it already. You could have a look yourself and see if there are any he could be added to the waiting list for nearer by but it's still unlikely to be en-suite if it accepts council rates.

Thank you all for your replies, from the responses I've had it doesn't sound like we will get anywhere with asking for a closer care home (though we'll try...) and who knew easy access to a toilet and sink was such a luxury...

Thats a good idea about looking for a voluntary group to assist with lifts, I'll look into that, thank you. We did try a commode before in his bedroom but he is so unsteady on his feet we were worried he would fall off it.

A pp mentioned using pension to help fund. Can anyone let me know more about that as I am quite confused and keep being told different things by social services.

I thought any top up had to come from a 3rd party.
FinL has an occupational pension.
I understand 50% can be passed back to MinL. Can the rest be used towards the home fees? (Which is more achieveable)

Or has the occ pension already been taken into account when calculating the amount the council will pay, e.g. the 500 they will pay includes if they take his state and occ pensions and any benefits. So effectively the council only fund say 300 of the 500.

I've also read MinL might be better not having the 50% occ pension and claiming pension credit to help make up her income.
If she does this where does the rest go? Can that be used towards the rest of the home fees?

Sorry to sound so confused, nothing I have read is very clear.

He just seems to have so much less choice because MinL is still alive. If we could sell the house and fund fees from that it would be far easier. (She could sell and move but there is already an equity release on the house and is unlikely to be able to afford to buy anything else in the area)

And my other worry is we could scrimp and scrape together money to help with fees and then find ourselves in the same position with MinL in 10 years time and my parents in 20 years time...

Bloody awful disease. Hope to god that assisted suicide is a legitimate choice by the time I get to that point ...

His pension will have already been taken into account in the financial assessment. The top up must come from a third party and not from his income.

If MIL doesn't take half his pension and instead takes pension credit then his whole pension will be taken into account in the financial assessment, all it will mean is as you say, he will be paying more towards that £500 a week and the council less rather than there being any extra in the pot for a top up.

It is a minefield and some councils are far better at explaining it than others.

I know this isn't your situation OP but I despair when people talk about getting rid of all their assets so they don't have to pay for care because this kind of situation is often the reality of needing the state to fund your care, why anyone would choose to deliberately put themselves in that position is beyond me.

I visit in a dementia home and whilst most rooms have en suite a few have a commode, which does work as well for those residents and is always cleaned properly.

I have great empathy for you all and your MiL as dementia doesnt just happen to the individual, it's the whole family that lives with it. Suggest conversations with MiL about how she needs to look after herself and keep well because it wont do FiL anygood if she becomes ill and also if FiL did go into home, she can visit whenever and not have to deal with the personal care and washing but have more of the nicer times. Heart goes out to you all.

Thank you both. I just can't understand how anyone who isn't self funding is affording top ups!? They must have some well off children... we are now feeling guilty about the house renovations we are midway through, about spending on xmas, about booking a holiday, all money we could be spending on FinL, but then the kids are missing out... how does anyone maintain a balance?

OK I just can't understand how anyone who isn't self funding is affording top ups!?
Most dont. People who are LA funded often don't offer to try to afford third party top ups and they accept the care home placements offered by the LA at their rates. Only those who want to choose more expensive 'their preferred' placement can choose to pay TPTU.
They must have some well off children..
Yes. Or rich siblings or grandchildren. General Public moan about people having to sell their homes to pay for their care home, "and what do they get for it? ", well this is what they get for it. A choice of care home, their children and grandchildren not having to pay third party top ups so that they can choose their home, etc..

As PPs said the LA have offered other suitable care home placements, an ensuite toilet is unlikely to be an assessed eligible need nor is 'must be in the same small town'. Even if you feel so. Those are niceties, fabulous if that's possible if there is suitable and enough care home provision in that area, with vacancies at a time they are needed, but meeting the clients needs is more important so it may need to be a care home bed offered that may be a bit further away.

@WhatwouldJessicaJonesdo, sympathies.
I would urge you/MIL to make a sensible long term choice as you don't know how long he will be in there.

My mother is in a non-ensuite room and has a commode, but as she has been doubly incontinent for years, I'm not sure how relevant an ensuite would have been.

She is in a Nursing Home with dementia. She has been in there almost 4 years having been unable to manage at home, even with carers (and is 88 now) She has self-funded so far, but we are now going through the council financial assessment. The process is as clear as mud. It seems that they have agreed to pay a set amount but it hasn't been put clearly in writing yet.

I am guessing that her pensions will be paid directly to the council who will then top up to their agreed amount. I have been told that the "top up" cannot come out of her account, so we will be paying that as if rather she didn't have to move at this stage.

I too wish that assisted suicide was a legitimate choice - my mother knew what was happening to her mind and wanted to pass away rather than have to move to a waiting room. I would feel exactly the same if it were to happen to me.

FIL went into a home from hospital. His care home fees were paid by the NHS as continuing care. This continued for about 3 years and his pension went untouched. He did not have his own toilet as falling in this area was a high risk.

I would research all options and ask the nurses and social workers where they would and would not place their loved one.

I would research all options and ask the nurses and social workers where they would and would not place their loved one

We aren't allowed to make personal recommendations like that really.

If someone frames the question to me in terms of 'which options out of A and B do you think would best meet my dads needs' though I'm more than happy to answer and give a bit of a nod and a wink if ones far superior to the other

First thing is to get a list of vacancies for homes that can meet his needs
Then enquire about top ups
En-suite and MIL travel will not be taken into account I’m afraid
DB and I paid nursing home top up between us with contributions from DM as it worked out cheaper than extra fuel to drive further
DM visited every day and DB and I alternated so every day between us
If under savings threshold and you have power of attorney you can use his savings to contribute
My Dad lasted a year in nursing home and at rate we were spending could have managed another 5 easily so not a problem but you need to work it out as worse case scenario would be to have to downgrade in future
I found my local authority financial assessment team quite helpful although I had to push for breakdowns and ask lots of questions

In terms of recommendations check out CQC reports, some review websites out there and don’t forget Facebook and Twitter
Although Dad died recently I still get twitter updates from nursing home showing what they and the residents are doing 😊

Please don't advise others to commit financial offences Jace

The rest of your advice is great but not this bit....!!!!! 😧😧
If under savings threshold and you have power of attorney you can use his savings to contribute
No you cant! Not to the fees outside of assessed his financial contribution that L.A. already take into account.
If you mean you used his savings when under threshold to contribute additionally to third party top up for his care home fees, then you acted illegally. Had that been discovered you would have been reported to court of protection , asked to pay it back, and likely had your power of attorney removed as it'd be treated as financial abuse (misusing a POA) under safeguarding.
If you mean you used his savings to buy him items he needed or pay for extras like hairdressers or physio whilst in carehome, or otherwise to to his benefit, then that's fine. If you meant the latter, be careful as your sentence could be misread!

mil travel is more important than en suite. en suite is nice but sadly may not be really needed for long as unfortunately with a deteriorating condition it is entirely possible that he will get to the point of even crossing the room to an en suite is too much. This whole stage of his life is unfortunately going to be messy and undignified at times and a £200 a week top up is not going to stop that from being the case. so much more important is the vibe and the ethos you get from the home. are the staff going to be kind and compassionate when helping with these messy and undignified inevitabilities or will they be too overworked and miserable for that?

hunt more along direct bus routes from MiL house and find more places that are accessible for her. there will be one which is within budget but which hasn't been offered yet as they don't have a vacancy. however if you check on their vacancy situation regularly it won't be too long before a room is available.

(You can pay your own TPTU if it's a 12 week property disregard or a deferred payment and the LA. agrees. They might not agree if they don't think you'll have enough to last you.)

OP have you asked about the local authorities own homes? Can FIL go on waiting list for a place there? Is the care good in the other homes FIL has been offered, even if no ensuite? Can you ask again as those places may have been filled now and you might get offered different ones / different homes

The whole process would be much better if there wasn't the secrecy around finances - care homes do not publish their fees, councils will not say which homes are on their lists for when the money runs outv and do not let you know about top ups and what can be done.

Actually there isn't much secrecy seek advice there are very good legal and long term care advisers who can help negotiate the system

I would look at other options for the toileting. In a decent care home he will only be in his bedroom at night and maybe for a siesta. He might manage a convene catheter at night or a bottle beside the bed. During the day, if he is in the lounge area there should be a toilet nearby and if they know there is an issue here could choose to sit near to toilet. Maybe he could wear a tena pad for emergency back up so as not anxious. I would second the idea of blunder transport for mum to get there. Find a local carer support type organisation who will be able to advise mum how to find resources like this. Maybe ask if he could join a waiting list for somewhere closer to home and if a place comes up you can decide if the other plan is working or whether to move him.

Have just noticed he is still at home currently but his wife is struggling. At this point I would really push to make sure they get all the support possible. In an ideal world he would be attending a dementia friendly day centre several days a week to give his wife a break. He should be having a regular week in RH every 6 weeks or so which mum can look forward to. Night time toileting will probably be the crunch as even if a convene worked, he might forget he had it and still try to get up at night.

You say he needs to go into a home in a few months. Then go on to say two homes have been offered within the budget.

It could be different at your local authority but where I live they can't search for somewhere until the time comes he needs to go and his needs have been assessed at the point. They then have to make 'best value' offer which is the cheapest placement available that meets the needs at the point of the search.

So their banding rate is £500 but the cheapest available place is £650 then they have to use that option and pay an above banding supplement of £150. They can't then force a new search if suddenly a cheaper bed comes up.

Essentially the search needs to be done at the time of his needing to go in to care and you could be lucky at the time of that search.

Apologies if my post was not clear I did say DB DM and I paid third party top ups as it was cheaper than moving him further away
There were other extras which came from savings
I did exactly what the financial assessment team advised and have all the break downs in writing from them

Thank you again all, and apologies for not replying indivually, its been a stressful week.
MinL has decided she def can't have FinL back so he will become permanent. He has had a care assessment and the council has agreed they will fund.

I have rang every care home along the bus routes and virtually every single one is 700 plus per week, 200 over the council rate (allegedly based on market rates). There are two places that take council rates, one rated requires improvement and after visiting I'd hesitate to put my dog in there. The other is rated good and is 'tired' but the staff seem genuine. As the respite care is costing over 2k in top ups and contributions we have no real option other than to take the place.
We have found a couple of places that are currently full which require a smaller top up so going on the waiting list for those, so we have a back up option, and I am asking to increase my hours at work to cover some of the costs.
What I am most disappointed about is that the council have been so poor. They couldn't give me a list of homes to ring, a list of homes that accept council rates, a list of rough fees for anywhere, or a list of current vacancies. We've not seen the care needs assessment either. Surely these should all be provided?