Dementia, stage 4 cancer. Care entitlement and nursing homes?

[Pariswithkids]

We have cared for dmil for 8 years. This used to be care we shared with DHs brother (we both adapted our homes) but 12 months ago brother couldn’t continue with it. Dementia is now very advanced, incontinence, sometimes doubly and this week we got breast and lymphoma cancer diagnosis. Mobility is deteriorating very rapidly it feels, she sometimes can’t get on the stairlift now and has to stay in bed. She’s managed it today however. It just feels like the end is nigh and I don’t really know what to do. I don’t want her to get stuck one day and and up in a hospital ward.

should we be considering nursing home? DH is worried about this because when his brother sorted the house sale and poa the solicitor said to take £800 each per month as reasonable care fees for themselves to keep her below the 23k threshold and because they had both had to give up work, so this is what they do. Is that wrong? DH is worried our assets could now be in jeopardy to fund care?

or because of the cancer diagnosis, the dr seems to suggest it’s terminal, are we entitled to maybe some home nursing or something?

i just don’t know where to start and what’s best and it feels she’s got quite unwell quite quickly now

thank you

You can ask the district nurses to do a CHC checklist. That would get that ball rolling.

I would get advice from a separate solicitor regarding the deprivation of assets. Even if she is eligible for CHC now it is reviewed and could be taken away. Your BIL needs to stop taking the £800 too- that is 100% deprivation of assets if not providing care!

What her DH's Will say in relation to the property? Unless he specifically left it to his sons, it will have passed to MIL.

Be aware that Funded Nursing Care (which can be awarded after a CHC assessment) will not not drastically reduce the cost of MIL's care, it is just an element of the care paid by the NHS to the LA and the LA would still assess MIL's contribution.

It could be argued that you could have adapted one house and then the brothers take it in turns to care for her there.

The way the OP is worded, with the £800 being paid to both to keep her under the £23000 limit sounds like it was carefully worked out to prevent care fees.

I can understand why you’ve done this as a family, and the care to date has met her needs.
I suggest you get in touch with your local authority adult social care team for a new Care Act assessment of needs but also read this information from age uk about deprivation of assets
https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs40_deprivation_of_assets_in_social_care_fcs.pdf

I don’t think that would work. You can’t swap homes every two weeks! I work full time, it’s ME (depressingly) who actually provides the care. We’re not even in the same towns.

it was carefully worked out. I didn’t really get involved beyond being caring. I just don’t want to lose my home or something if it’s looked into.

If your MIL had unlimited amounts of money to be able to adapt both properties and then be able to fund any necessary care, then yes she can have the best facilities wherever she is.
Your OP specifically talks about managing money to ensure that her savings stayed below the £23000 threshold. So she DIDN'T have adequate funds for all the adaptations and necessary care. That's the issue.

If you are happy for her to stay with you she doesn’t need to go into a home.
if she’s finding it dangerous on her feet she could be nursed in bed. Choose either upstairs or downstairs living for her. She may be fine staying at home with you.
she may be entitled to funding or have to pay for additional carers.
usually if the dementia is that advanced choose not to have any further medical treatment for cancers etc. It would be worth speaking to a gp to discuss what palliative provisions are available in your area and to put things like an advanced care plan or DNR in place.

OP you sound amazing and your MIL has been so lucky to have you in her life. But you asked about finances and unfortunately the situation does sound like it could have some consequences for your DH and housing brother.

I’m sorry I don’t understand what you are saying. She did have the funds, they were used to make the adaptations.

*I don’t think that would work. You can’t swap homes every two weeks! I work full time, it’s ME (depressingly) who actually provides the care. We’re not even in the same towns.

it was carefully worked out. I didn’t really get involved beyond being caring. I just don’t want to lose my home or something if it’s looked into.*

You need legal advise- someone independent from who advised you before. I understand why you did it, but understand why the council would argue that it wasn't necessary and was done to reduce her capital.

I have seen it happen once where the courts ordered one family of a person in a care home to sell their home in a similar situation but that is only once in 20 years (I'm not a social worker but work as a nurse in elderly care and support in arranging care at home/ care homes).

The £800 per month your bil is still receiving should definitely be redirected into buying in extra care to support you, although it won’t go very far.

OP, make a post in the Cockroach Cafe (on this board) and see what replies you get there.

So who inherited the property when he died?

Look at the end of the day this isn't an issue if you aren't asking the local authority to fund any of her care.

If they/she have deliberately disposed of cash to get it under the threshold (which you have) and you approach the local authority for funds they will look into it.

And BIL needs to think about returning the money for any months he hasn't provided care.

I think you need to decide whether you can care at home (as, brutally, it sounds like she hasn’t got long to live) or not.

If you can, no one is looking at finances too closely.

If you can’t then you need independent legal advice and the brother who is skimming £800 a month for no reason needs to stop, and pay back everything he’s taken!

This, as a family you need to decide if you’re going to fund her care yourselves, either at home or in a nursing home/ residential dementia unit, or get embroiled in an investigation into her/ your assets.
However LA assessment and advice and usually OT equipment is not a chargeable service.

I definitely agree it's the brother who is taking the £800 a month for nothing who is going to set alarm bells off. If you're not asking the council to pay for care (which you're not at the moment) then no one will ask questions. If someone reports him to the OPG for taking £800 a month from her for nothing then he could be in serious bother (and they may start looking deeper into her finances).

Your husband and his brother gave up work to look after her and you say you’re the one providing care. That’s not right. Honestly at this point it may be kinder for all for her to be nursed in a care home. I’d consult a solicitor regarding the finances

IANAL

But, I think if proceeds of the house (which I assume was left to her by her late husband) were used to make adaptations 8 years ago which enabled her to live in two houses for 7-8 years and be cared for, you have a good case that this is NOT deprivation of assets.

I don’t understand the part where you were advised that the brothers can keep the balance of the house proceeds, though. That should be in MIL’s account, surely. Is it still set aside? Could it be returned to her?

I agree with others that DBro should have stopped taking £800 pcm when he stopped caring.

Also, if they both stopped work and you work FT, why the heck are you the carer?

@Pariswithkids IF your MIL needs care funded by the local authority they will assess her finances.As part of that they will be looking for deprivation of assets.
Two homes do not need to be adapted (what adaptations where done?)
Her sons should not have taken out the excess profits to reduce it down to £23000
Your BIL should not be taking £800 a month for caring that he does not do.

Yes, I'm struggling to understand the dynamic.

I actually don’t see adapting two places as unreasonable, given it allowed two family members to care for her and reduced spend on respite etc. But I’m assuming adaptations are things like a wet room and a stairlift, not a two storey extension

CHC can be challenging but she may be entitled to fast track funding which is generally easier to get in place:

www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool/fast-track-pathway-tool-for-nhs-continuing-healthcare-guidance

You can use CHC funding to pay for care at home or in a care home, although not all care homes will accept CHC funding.

Thanks for replies. It has helped me think things through.
Firstly, I think I need to get more information about her cancer. If it’s merely a matter of months I would hope to keep her here.

to clarify a few things, I guess brother would want us to claim that he does provide care. Brothers aren’t on best terms now. She can only ever be officially resident in one town whether care is shared or not so it could just be claimed that shared care continued.

adaptations were big, he made an annexe, we installed disability en suite, disability bed, had the biggest room completely remodelled. Stair lift, rails…

DH does provide care I suppose though I do all personal care which is the hardest bit. He does meals, meds, takes her out though not anymore, keeps her company basically answering the same questions 100s of times day in day out!

I don’t think any of this money would have gone very far and she been in care the past 8 years so I don’t feel bad.

It's not unreasonable to adapt two homes. What is unreasonable is to get the homes adapted and then to change your mind about caring for her and because the money has been spent you appear to believe the state should pick up the tab for a nursing home. Surely you get why eyebrows are being raised about what you're doing.