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

I don’t think making adaptations that allow for 8 YEARS of care and then rethinking it when faced with end of life care is simply changing one’s mind but thanks

This could potentially cause problems if she has to go into care as presumably that money has gone into your home and unless you sell that home to free up some of the money for care fees, it's going to be difficult. I have no idea how the local authority would view it as part of a financial assessment though to be honest. The best scenario given that it sounds like they are not treating the cancer and therefore time is sadly going to be limited, would be to try to keep her at home if you and your dh can cope with this.
You can ask the local authority for an assessment for home care and as she has only got the 23k then it's likely part of her care would be funded by the local authority.
I assume she has Attendance allowance or some other disability benefit being paid ?
If she has a disability benefit, your dh or his brother could claim carers allowance whilst not much can be claimed if they don't work or have earnings of less than £139 a week. this is assuming your dh is under state pension age.

Having been in the position of parents needing 24/7 care, I think what you and BIL have done is fantastic, and the best for MIL and all of you.
it’s my understanding that stage 4 cancer is terminal, I’m sorry if this is the case

@Pariswithkids maybe the adaptations are a red herring. It's the fact that the money has been managed specifically to ensure she would get state funded care if needed. This is not your doing at all, as I said you sound bloody amazing. As I said earlier I'd love to know how the solicitor justified those actions.

Me too. It was DB who handles the legalities so I only really have his word. I recall he was told that proceeds don’t
matter after 7/8? Years

Also it's unlikely they would take her into hospital if she got stuck. The ambulance service could come out to help get her back to bed but unless there was a reason for her needing to go to hospital like having had a fall and injuring herself, then they would not need to take her to hospital. There will likely come a point where you need to make a decision that she needs to have an upstairs or downstairs existence if she cannot manage the stair lift.

Im just going to say that I think you as a family have given her great care, couldn't be better. £1600 a month seems like a tiny amount for that tbh and you've saved the country via the NHS and social care a fortune. I can't however comment on exact rules.

I would talk to her GP, get a prognosis and ask for occupational therapy and social care assessment of her needs. She might well be eligible now for fast track funding as above if she does need care. 💐

Local authorites can go back as far as they want to see where money has gone.

We got CHC for my father but, as others have said, it is hard to qualify and the threshold may well be even higher now (than 4 years ago).
The forms weren't easy to complete but we were assisted by the care home he was in. Basically, he was end-stage cancer (likely within 2- 3 months), doubly incontinent and because he was a tall man, it took three carers to attend to him and then him etc. He needed meds administered by appropriately-qualified people - not something we could have done.
We received the payments posthumously and I wonder if part of the decision to award it was because they knew it wasn't going to continue.

Thank you. I think we’re going to try and manage her here. I was torn about thinking we couldn’t give her the nursing she needs but I think it sounds like we might have options to get in home nursing so this is what I’ll look into.

she does get attendance allowance and we recently found out about carers allowance. We applied and found out brother was in receipt already for years so had to get this switched over.

No time limit;

www.independentage.org/get-advice/health-and-care/paying-for-care/giving-away-assets-to-avoid-paying-for-care

My Mum has the same diagnosis of Dementia and Cancer and we got her a Continuing Health Package.

Speak to Adult Social Care, her GP, and district nurses who point you in the right direction.

Also, Beacon is a really incredible organisation that offers some free advice with regard to Continuing Health Care. They were really helpful with my Mum.

https://www.beaconchc.co.uk/

Good luck, this is really devastating for everyone to be going through.

Your brother has been getting carers allowance for two years?! He sounds like an utter nightmare!

The 7 years relates to inheritance tax after someone dies. There is no set limit with care needs.

I work in this area and I think the adaptations to the homes will be fine. Any proceeds that were left after that and the £1600 per month could be the problem.

7 years! 🤬

Hopefully he informed the carers allowance department when he ceased caring for 35 hours a week otherwise he was claiming fraudulently.

Thanks so much everyone.

Does CHC not look into any finances?

7 years, WTF?
And though I do think the adaptations are a red herring, having an annexe built as he did would be incredibly hard to justify, but that's not your problem.

If you've got an allocated breast cancer nurse speak to them about CHC / fast track. If she does qualify for fast track then I would expect the palliative care team to also be involved.

Good luck

No it isnt, especially your brother whos not even looking after her but has benefitted financially by improving his own property.

No CHC is NHS so not means tested.

Thanks again, he did also care for her for a long time to be fair to him and he didn’t have the support of his wife as my husband does.

@Pariswithkids I'm sorry if my post came across as being harsh, I didn't mean it to. Ultimately though you have both changed your minds though regardless of if it's because it has gotten too much.
Is it a case of it has gotten too much for you because it is now FT rather than 50% of the time or would it have been too much anyway? What I'm getting at is if BIL was still doing his fair share would you be happy with the current arrangement as it is?
BIL needs to stop getting his £800 - if you and DH are doing all the care I don't understand why the brother doesn't think you should be getting his share.

Don't trust BIL. I am assuming you and DH inspected all legal paperwork very carefully before going down this road. In any case it seems an approach was devised to deliberately minimise care home liabilities (focus on keeping her assets below the specific threshold) which were identified as a tangible risk given her health at the time.

If I were BIL I would be returning 800 x 12 payments to DMs account very quickly and stating it was an admin error.

If I were the council assessing assets, I would be considering cash (after BILs repayment) plus money paid to BIL for a care "annex" that is apparently not being used for care. Unless of course, he is paying back too. An annex (to me) implies expenditure way beyond reasonable adaptations where an alternative facility was also available (if it is not now being used to provide care...he will surely have benefited from capital value uplift on the property).

My understanding (possibly wrong) is that it is your mother (not you or BIL) who gets in trouble / pays the price if deprivation of assets is found to have occurred...council can simply refuse irrespective of her circumstances. Each council has a different approach too, some have X years limit, some are indefinite.

You are doing an amazing and incredibly difficult thing, OP. I am in awe of you sincerely hope everything works out the best it can for you, DH and of course your MIL. Don't trust BIL 💐

To be clear I'm not commenting on nature of care and funding rules; merely my take on the BIL / assets situation. Good luck op.

I think it’s wonderful that you have tried to care for her and I’m sure she is much the better for it. The finances sound a bit unusual but focus on what she needs now. You need to ask whether she is considered at ‘end of life’ (usually expected to be less than 6 months) as then a whole different set of support (including at home or residential) hospice care kicks in. I cared for my terminal mum and if you can I would avoid hospital admission and push for support to care for her at home. Once you are in hospital it’s very hard to get discharged with the care you need.