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

Your assumptions are disgusting. She came to us when she no longer could be alone, she was wandering, falling, not eating and not taking meds. She absolutely needed care

You said earlier that she had mental capacity when she made the decision to come to you and split all the cash between the two brothers and financially plan to avoid care home fees? But couldn't remember to take her meds, eat, and not wander....

OK

I've been doing this job a long time. Perhaps I'm a little jaded but I'm very good at my job. I'm warm and cuddly when needed and a cold fish when people are trying to pull a fast one. I only tend to find people being abusive towards me when they know they have been caught out or have something to hide.

The entire premise of this thread was you trying to work out if the finances were going to be an issue. I have no doubt you have provided excellent care, but that's not what your OP was about.

Go fish

The things that jump out on this thread to me are,

You say you do all the personal care but also work full time. Are you working from home? Even so, if she's incontinent of faeces are you always able provide personal care in a timely manner? Would using the £1600 a month on regular carers during your working hour be better if her sons won't do it?

The assets of the house were split and 'most' was used for the adaptations? What happened to the rest? You just took it? Had anyone actually formally assessed her capacity surrounding finances at this point or are you assuming she had capacity? Your description of how she was at this time indicates a significant cognitive decline.

Why are you not enraged your BIL has been stealing £800 a month from her for a year? How has her other POA (your husband) allowed someone to steal from her. That's his job, to protect her money. Not use it for your benefit.

It sounds as if the annexe that your BIL built with his DM’s would now be a more appropriate environment for her to be cared in than the upstairs space that you have where she would be stuck in her bedroom if (when) using the stairlift becomes unsafe.

BIL has been absolutely taking the piss claiming benefits and £800 a month and not contributing to his mum’s care. Unfortunately you and your DH have every right to be worried if you do need to have additional support for MIL that you do not fund privately as you have been complicit with this. Any carers that you do arrange will need to be provided with the correct equipment to be able to care for MIL while keeping her and themselves safe (hoist, hospital style bed, specialist mattress, seating, slide sheets etc). That can be provided by OT’s (I’d get a palliative acre team referral done asap so that you can get the most appropriate ones involved) but if they have any concerns about the situation, they will be duty bound to report to safeguarding as will any other professionals (eg district nurses) who you come into contact with.

I wish you well, it sounds as if you are a lovely DIL but it all sounds very complicated and concerning.

The most concerning businesses all this is the paying of money to the brother in law for goodness knows how long when he hasn't been providing care. I mean you can give money away if you have capacity, but it doesn't sound like she has so could be construed as financially taking advantage. Where are her pensions, private pensions, attendance allowance going ? They have been given away to keep her assets under the threshold for paying for care and it's not even clear whether she has capacity to consent to this !

@hatgirl where do you get that I would avoid outside assistance? That’s what I’m asking for advice about.

yes I wfh. My employer is a massive corporate that makes allowances for such and I’m part of the ‘carers network’ we have. Yes if she needs help it’s immediate.

tbh this thread has really helped me in ways I didn’t anticipate. I was fixated on her been stuck in her room but didn’t make the connection that she is end of life and this is how life ends. The diagnosis is very new, she’s been very ill even tonight. I don’t think I got this.

If you haven't already I would ask the GP surgery to ask for a visit from the district nurses. They can get the ball rolling with CHC, hospital beds etc if they are required.

I also really think you and your husband need to get independent legal advice and do what's right for your MIL. It's not ok that family are stealing from her. It's also not ok that if it comes to a point where she needs a nursing home that the choices of home will be diminished because family chose to prioritise their inheritance/ income (there may be no choice depending on her health and care needs).

OP and her DH have not been complicit in benefit fraud! If BIL continued to claim carers’ allowance when he was no longer a carer, that is on him.

“The diagnosis is very new, she’s been very ill even tonight. I don’t think I got this.”

I’m so sorry, OP

It may be, sadly, that all the financial points are irrelevant if her prognosis is for a short time from here

where do you get that I would avoid outside assistance? That’s what I’m asking for advice about

From the OP....

DH is worried our assets could now be I jeopardy to fund care

and

Is taking money for yourself like this a normal legal thing?

and

*I just don't want to lose my home if something is looked into'

and

does CHC not look into any finances?

I know you WANT to consider external help. My question is will you, if its the choice between external help and the finances being investigated?

BTW as LPOA your DH is equally as culpable as BIL if he knew BIL has been acting fraudently and didn't do anything about it.

I am worried about finances, I’ve made that clear, but nothing you have quoted has backed up the horrible suggestion you made that i would not seek external care for the sake of finances. Yes of course I would enable any care she needs. Don’t apologise for the slight though, I know it’s not in your nature 🐠

I don't think it's as easy as you seem to separate the two.

But if you think when the time comes you will be able to stand your ground against DH and BIL who will individually be facing action from the OPG and potentially even from the police, then good luck and I wish you all the best.

What’s not as easy? What is opg? For extra context her home sold for £112k in the north, she’s not loaded.

You still haven’t answered how about I might avoid any care to protect finances. That’s been been the most hurtful comment to me on the whole thread

I think you have taken a lot of stick on here @Pariswithkids that you are not really deserving of. You have cared for this lady for 8 years, whilst also working full-time. That is a big ask of anyone. It is easy to judge people when you have never been in that position.

You need to sit your DH and your BIL down and have a honest discussion about this next stage of her care. People have a choice about where they would like to die if they have a terminal illness, I appreciate this will be difficult to discuss with MIL due to her dementia, but has she ever mentioned it in the past ? The options are home, hospital, hospice or nursing home.
A lot depends on her prognosis, so months or weeks ? how well her symptoms are managed, is she experiencing any pain ?
There are a lot of things that can be put in place if you choose to care for her at home, additional equipment, night sitters, carers, District nurses etc. But being honest, for the vast majority of the time, the hands on care will be down to you as a family mainly you

Look, I appreciate this is not a situation of YOUR making. I've acknowledged you have most likely provided excellent care for your MIL for YEARS whilst your BIL siphoned off money he wasn't always entitled to and convinced your DH to go along with it trapping him in the same web of fraud.

you sound at the end of your tether. You work full time. You are a carer. You have your own social worker apparently as well, suggesting you have other complications going on in your life.

but

If the choice is between MIL getting additional care and DH having a visit from the police for fraud, and potentially court action, who do you choose to protect?

Who will your DH and BIL choose to protect?

You have posted on mumsnet seeking help and advice. My advice - protect yourself and MIL first.

good luck.

@hatgirl what fraud is it that you think DH has committed?

It sounds like OP and her DH didn’t even know carers’ allowance was being claimed by BIL until they started a claim for it once they were the sole carers.

OP, by OPG, she means Office of the Public Guardian. They oversee LPAs. Whilst your BIL and DH probably should have stopped the carer payments to him, I do not see that this would ever be a police matter, though there might be a request to repay that money to the estate for the time he was no longer caring.

In any event, I doubt this thread will do you any further good, OP. Come over to the cockroach cafe if you like.

One thing that hasn’t been discussed that may be a problem is being in receipt of Carers Allowance and getting £800 as well. There is a maximum weekly income allowed in order to receive CA of about £115 I think.
Your BIL has been receiving it for 8years without declaring the £800pm income. However, unlikely to be police matter if he pays it back.
But make sure your DH doesn’t claim without declaring this income

I doubt it would matter as it's not earned income more like a monthly gift if BIL hasn't actually been caring anyway ! There's no way anyone could ever prove it was earnings, he hasn't been taxed on it or been through HMRC. Just like cash in hand really.

I doubt it would matter as it's not earned income more like a monthly gift if BIL hasn't actually been caring anyway ! There's no way anyone could ever prove it was earnings, he hasn't been taxed on it or been through HMRC. Just like cash in hand really.

Imo, either BIL has paid himself for care, in which case, he was over the weekly limit for carers allowance; and he should have declared it to HMRC; or if he was taking it as a gift, isn’t that fraud and deliberate deprivation of assets?

He could also find, unless he is over 60, that the LA ask for the sum back, spent on the annex? Ditto DH the improvements on his house? They have benefited from the uplift in value in their houses.

I went to a talk by a solicitor on this, and he said if a parent puts money in DC’s house for an annex, there should be a legal document drawn up, to say the money is in respect of care for the rest of their life; otherwise the LA could ask for the money back, if the parent needs a care home in the future:

https://www.hughes-paddison.co.uk/site/blog/private_client/the-granny-annexe-matters-to-consider

Also, the question of an LPA paying themselves for care, as @hatgirl said, the OPG might be interested in it

https://www.brethertons.co.uk/site/blog/covid19-can-an-attorney-pay-a-relative-for-care

IMO, BIL didn’t seek legal advice at all!

At any rate she can go into a care home paid for with public funds if she has no assets but it will be a nasty cheap one with a horrid little bedroom, smelling of piss and cabbage and the only one with any space might be miles away. That’s ridiculous. There are good homes and bad homes at every level. Money gets you choice, it doesn’t necessarily get you better care, as some of the posts on this thread demonstrate.

It’s not necessarily true to say “At any rate she can go into a care home paid for with public funds if she has no assets” That’s not necessarily true. If there has been “deliberate deprivation of assets”, eg she has been giving away large sums to her children, then the financial assessment is done as if she still had possession of that money, and she may be assessed as needing to make a contribution.

@hatgirl Am I right in thinking that the the consequence of deprivation of assets is that the assessment is made as if the money were still in the person’s possession (meaning potentially that the recipient would need to give it back). That there’s no legal consequences, eg fines?

and what’s the last ditch resort - money has been given away, recipient no longer has it, no relatives are willing or able to fund … what happens?

No point, we’re must of us reading this, and the Cafe is meant for chat and support and things that aren’t enough to start a thread of their own

What I meant was, if a DC over 60, is caring for a parent in the parent’s home, then the LA can’t force the sale of the house to pay for care home fees - my guess is they could put a charge over the house. They could still expect BIL, over 60 to pay DM’s money for the annex back; if he was under 60 and couldn’t pay it back, the LA could expect the sale of the house to recover DM’s contribution?

This.

DH is getting confused with Inheritance Tax.