What happens when the money runs out?

[xrayted]

DM (93) and DF (97) both in a nursing home for the last year due to deteriorating health conditions and lack of mobility after various medical crises (mostly falls and unsafe at home). They are both medically fit other than the frailty dementia and mobility issues. Rooms adjacent to each other and well settled. The total monthly bill is around £12,000. They have decent savings but due to my father’s profession they never owned a house. We are increasingly worried about what will happen after the money runs out .. we were originally told no worries and that the LA would step in but we have calculated that after the LA pays the maximum amount of around £800 pw pp and then subtract pension income and AA we will be left with a shortfall of £6,000 a month for the two. This is an impossible situation! Does anyone have any experience of what happens when the money runs out? We are panicking and only see two options: moving them to an affordable home which might be awful and sub standard or taking them into our home which would mean me giving up work. Would appreciate any thoughts.

Excellent advice - you feel guilted into meeting them half way to show willing but that is probably what they are pushing for and would tie us into a mill stone round our neck. A shared room would not be good for either of them.

In reality the council usually coughs up enough. Th2e home will charge less than they do whilst self funding. I work in a care home and it's unusual for residents to be moved out. Sit tight and insist they don't move out. I know it's a huge worry. £12k a month is a huge amount of money but fairly standard. Hold your nerve was what my DM care home told me. She died just before we got to that stage so can't speak of personal experience.

I know from recent experience with my Mum and mother in law that it’s very hard to get, but have you applied for continuing healthcare funding? It might be worth exploring given your parents’ needs.

Omg have never heard of this but on googling to the NHS info site have read the info and they absolutely fulfill most if the criteria listed! It is extraordinary (but strangely unsurprising) that no one tells you about these things. Thank you SO much

So if you apply to the LA for support with funding your Dear parents, as well as a Care Act assessment, they will have to have a financial assessment. The threshold for savings is £23,250 each and this will include any investments, shares etc.
All of their income from state pensions and private pensions will go towards their contribution towards their care and they will each be left with their personal allowance of £30.65 per week.(2025/26). The LA then pays the difference, normally up to Adult Services band rates. This can vary by different LAs.
Once LA funding is in place you will need to inform DWP that your DPs are now funded by their LA and they will lose their Attendance Allowance as they cannot receive two lots of Government funding.
Unfortunately, your DPs will not be able to self top up from their savings once they drop below the threshold and only a third party top up can be paid.
I hope this clears a few things up for you.

Don't get to excited about CHC funding... its almost impossible to get

As munchyseeds2 said, CHC funding is very hard to get. You will almost certainly get through the initial checklist but then when the full assessment is carried out, that’s when it gets difficult. It’s worth trying but don’t get your hopes up.

As soon as you start googling, you will get a couple of companies popping up who say they will handle your claim and when you speak to them, they will tell you that your parents will definitely qualify etc. Don’t make the mistake I did and believe them. Compass relieved me of £4000, sent the paperwork in very late, and sent an incredibly young and inexperienced person to represent me at the hearing. My mums claim was turned down and I pursued it through all the subsequent appeal stages but she didn’t qualify. Having said that, her needs were more dementia related and she didn’t have the incontinence problems that you’ve described and she wasn’t bed bound. There is an excellent organisation that will give you an hours free support - google Beacon CHC. Just avoid Compass!

Wow that is a true cautionary tale: Compass was indeed the first site that came up google and as I realized it was a sponsored site scrolled on to the .gov site. Very good advice and I can’t believe they relieved you of £4k for the privilege. Opportunists feeding on people’s misery :(
It may indeed be difficult but I will certainly give it a try. I am nothing if not tenacious when there is so much at stake! Thank you 😊

This is super useful and very concise - just what we need to help get our 🦆🦆🦆🦆

The nursing home manager will have a good idea if you DPs would be eligible for CHC funding so have a chat with them. There is never a need to use an external company to represent your DPs as the manager can support you. You can download the CHC DST from https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool/nhs-continuing-healthcare-decision-support-tool-guidance
This will give you information and a good idea if you feel you want to apply.

Brilliant- thanks for the link. You are right I am sure the care manager will be au fait with all the ways and means available. I guess they don’t feel it necessary to discuss until we need to. I am just so nervous that having finally got DM & DF more or less settled and comfortable this all rears its ugly head. They did so struggle with the idea that their lives were reduced to a care home room. We haven’t brought it up nor will we until it is clear what is to happen.

nhs continuing care should kick in - have they been assessed yet, if not you need to push for it. They pay what is required to a point though won’t fund “extras bills” in nursing homes nor unnecessarily fancy ones. They were paying £8k a month for my gp in law 5 years ago!

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OP, don’t forget that CHC funding isn’t means tested, so if your parents qualify, they will be able to keep whatever amount of their savings is left.

Wow good to know - although I am not deluding myself, as previous posters have advised it is very hard to obtain this (why?); however, I fully intend to fight for it!

This is definitely worth pursuing. No assessment for CHC but on it tomorrow. Wow £8 per month… 😱

You won't be able to look after them at home because eventually they will have to be lifted and carried.
You will need hoists installed.
I agree about the round the clock care and the soiling.
Would you be comfortable wiping their bottoms numerous times a day?
Changing them?
Feeding them?
Changing drips etc?
Dementia and alzheimers makes elderly people live longer so they could live a number of years more. They could be old and frail for quite a long time to come.

Also I agree that the carer often goes first.
Minding them might kill you.
Who will mind them then?

About 10 years ago I worked in a care home and nobody was ever moved out because they'd run out of money, it would have been considered very poor form considering all their money had gone to the care home! The home would ask relatives to top up but ultimately accept a small top up and council rates. There was a fine balance of having enough self funding residents to help balance the loss made on caring for the council funded residents.

However, a lot of care providers went out of business so they may be tougher now.

But as the manager said don't worry, I think that means they will work something out and there is room for negotiation. Good luck!

This is so true. In the care home where they are, roughly half the residents are bedridden and fully dependent for all their needs. And that stage can last for many months. We managed more or less when we looked after them in Lockdown 5 years ago but they were much more able then. Now the incontinence alone is a challenge not to mention zero mobility leading to frequent falls and deteriorating mental health/dementia. I know this rationally but the guilt remains.

£12k per month to care for a couple who sound like they need minimal care apart from feeding them and making sure they’re comfortable?!! Appalling! Wouldn’t be too bad if the staff employed weren’t on minimum wage, and require zero qualifications. I wish the government would investigate this money making machine.

This organisation has been recommended before for helping navigate care costs: https://beaconchc.co.uk/

@xrayted you already have your answer, you already know:
the manager kind of brushed it off and said that the LA would take over and they had never made anyone leave for lack of funding

The fees that the LA pay are much lowet than the fees that self-funders pay.

The care home never make anyone leave for lack of funding.

It will be fine.

The shortfall you are panicking about isn't going to be there. The care home will lower their fees to match what the LA will pay.

Thanks for the mostly reassuring and helpful comments which have helped my sanity over the weekend. I will update at a later point when things have been resolved.