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Elderly parents
Original poster

Care home fees and top ups (dementia)

33 replies

WhatwouldJessicaJonesdo · 18/11/2019 13:12

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!!!

OP posts:
Hepsibar · 19/11/2019 14:18

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.

hatgirl · 19/11/2019 13:40

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.

Original poster
WhatwouldJessicaJonesdo · 19/11/2019 09:36

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 ...

OP posts:
hatgirl · 18/11/2019 15:14

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.

FinallyHere · 18/11/2019 14:51

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.

ashtrayheart · 18/11/2019 13:35

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

fiftiesmum · 18/11/2019 13:27

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?

Countrylifeornot · 18/11/2019 13:25

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 Flowers