Assets but no cash to pay for care - experiences and handhold

[Throwaway380]

Can already think of a billion ways I could have made this easier with hindsight, so please be gentle.

My Mum has got a very complex degenerative neurological disease. Has been cared for at home but my Dad can no longer cope and is in an absolute mess.

We applied for CHC but were deemed ineligible even though every care home I’ve spoken to is astounded at this. We will appeal or reapply but that obviously takes time.

My Mum had about 30k in savings but other than that her one asset is a buy-to-let house she and my Dad co own. Obviously selling this will take a while as need to give notice to current tenants etc.

Was told by the social worker that we could get a Deferred Payment Application on the buy to let, but then told by the council’s finance team they would not do this.

We had a specialist care home place lined up for Thursday but as we don’t now how the proof of financing it they have cancelled this, I’d already arranged for her current drop in carers to stop as of 10am Thursday so currently in a worse position than we were before. Am hoping her current care company can come back.

We have told by multiple nursing homes she is too complex and they can’t meet her needs and her current care company specially train people so if we get a random other company they’re not going to be able to provide that same level of care immediately whatever.

Feel like I’ve utterly messed up and we’re going to have to look at equity release. But equally we will need to sell and my Dad is not going to have that much to live on once the income from the letting goes, and don’t want to go into negative equity on that property and seems to not be advised to do it for short term (whilst we end the tenancy and market the house) in any case.

Have seriously been told by two different people at the council to just call an ambulance or go to A&E if it’s ‘an emergency’. She does not need to be in hospital, and it would really distress her (she’s totally cogent although extremely physically limited).

I honestly can’t believe they can leave people like this, literally nothing on the deferred payment form about it not being suitable for second properties, wasted hours filling it in.

Restarting the search for a nursing home tomorrow but going to face same issues of how complex the needs are. And we’re going to be in a mess with the money in 10 weeks or so anyway, and that’s if we spend her last penny.

weird. It sounds like this social worker doesn’t actually understand what’s going on. Or they were trying to do you a favour and see if they could buy you some time by putting your mum into the hospital?

I don’t know. Some of the stuff I hear is just beyond bonkers.

It’s because I was asking what happens if my Mum’s care company can’t step back in, and we have nothing from 10am Thursday. I asked if this shouldn’t be registered as an emergency as Mum would literally die without care and that’s when she suggested A&E. I think it’s because they know they’ve massively ballsed up and want more leverage. If when we initially talked about funding Mum’s care they’d told me about the second property rule, I wouldn’t have wasted all this time on the pointless care placement and getting the council forms done. But she’s stable, happy at home is devastated and terrified of moving into a home and they’re telling me to abandon her.

Is there any chance of keeping her home with 24hr live in care? Might still work out cheaper than a nursing home?

This was our initial plan when applying for CHC but my Dad is just broken and all the people coming in and out he can’t relax properly.

It’s incredible that her care needs are so complex that you cant find a suitable care home and yet she doesn’t qualify for CHC funding, just how bad do you have to be to get CHC?!

A hospital admission putting the onus on the NHS to find her somewhere suitable so she can be discharged?

how far away is the BTL? Could you give the tenants notice and your dad move in there and your mum remain in the house with care? He could then join her when he felt able to but would have somewhere to retreat to?

If he had that as a long term plan then coping in the short term is sometimes easier. I’d also look at him taking a break for a week or two (even locally or with relatives) until care is set up and established.

Yeah, I guess that’s what the social worker was going for, but the thing is…

If you’re going into hospital in that situation, it’s the social workers who are responsible for finding something isn’t it?

If she doesn’t qualify for CHC funding then it will still be social services finding a place not the NHS. It just has a slightly different pathway and priority than people at home. The NHS don’t organise it directly it’s done between social services and the discharge team.

That said I do think if you appeal for CHC funding you’re likely to get it. It’s such a headache but it’s a bit like PIP, they almost always refuse it first time and it’s overturned on appeal. It’s a mad system!

So I have a few further away ones that are possible but because she’s so complex all need an assessment, because of how long my mum takes to eat it’s only possible to do one assessment a day and always have other professionals in and out so some days are ruled out.

One care home messed me about because I think (reading between the lines) they wanted a bed to be available. The charity one does its own special form of assessment and all the others either have no beds or say no. One lovely lovely nurse at a home I visited that was perfect on paper was so horrified by the situation that’s she’s written me an official email with her belief she must have CHC funding. I’ve been trying to arrange care since mid September.

There is an organisation called Beacon CHC who advise and help with CHC appeals, we decided against appealing as even from our own assessment we could see Dad was nowhere near the threshold (he scraped through the first stage with the minimum you need to get to the full assessment) but they were recommended to me by an Age UK helpline advisor. DF got FNC no bother but it was after he’d moved into the home, we got a refund after a few weeks.

Also is she getting Attendance Allowance, it’s not huge compared to care fees but it all helps.

That is possible but it’s four months notice and we’re already at crisis. He could potentially move in here but I think I might murder him and my daughter is high energy so not a super restful situation.

I know! I have no idea what they’re thinking. It doesn’t help that I wasn’t the most cogent on the phone as kept bursting into tears.

My opinion of social workers is very low so I'm not surprised they are advising calling 999! (We had one for a while until she told the CHC assessor that my relative didn't need nursing care so they should cancel the award for FNC! Fortunately the ICB told her to butt out and as we were then able to acc3ss private funds to pay for care we also told her to butt out because she was no longer needed!)

Be warned - if the hospital discharge panel are responsible for finding a care home placement they will take the first place open anywhere in their boundary. The home could be lovely or more likely it will be terrible (because none of the good homes have places at short notice) and it could be a long way from your Dad. I hope you don't have to go down that route.

I hope you are able to work something out. Is it worth a call to the ICB to speak to the manager about your Mum and to register a complaint about the assessor? (Complaint has a great way of focusing minds.) I found them to be very helpful and the number and email were on the letter we received confirming that full CHC had not been awarded but FNC had been awarded. Good luck, I hope your nightmare ends soon.

We’ve been on the waiting lists since the CHC assessment, they have a four month waiting time. I have emailed them again about this situation, which is obviously more pressing.

I’m just dreading telling my Dad all the detail tomorrow. I can’t imagine how he’s going to react. It’s my daughter’s 11th birthday next week and I still haven’t sorted her presents. She hates me staying away from home so if I do need to go and stay down there she’s going to be very miserable (sadly this illness has gone on a long time and also supported my Aunt until her death, and my MIL had a stroke, at one point we were visiting three different hospitals across East Anglia) so my daughter immediately freaks if I start disappearing regularly. When she was about 7 and my Mum was in hospital she literally used to have to be detached from my legs crying for me to leave to go to the hospital. She is quite dramatic and we’ve obviously talked about it but she always gets funny about it.

This is very good advice and similar to my opinion of my Mum’s social worker.

I’ve already fired off an email to my local councillor as he’s actually head of the council, and my Mum and Dad’s one as I know they don’t get along and hoping so pressure can come from there. Also cc’d in our MP.

I will try ICB!

They may have less income but they will have the equity from the sale of the rental. Do they own it as joint tenants? If so, only half the equity will be deemed your mothers to fund her care costs and your father will get the other half to live on.
As brutal as it may sound, they may well be right in terms of getting her in a care home asap via a+e. If she has a fall, for example, and is admitted because there is no one at home to take care of her, she will come under the hospital social worker discharge team. They will do their best to find her somewhere if a discharge back home is deemed unsafe.

Would it be possible to put the buy-to-let property on the market as a going concern, with the tenant remaining in situ? Obviously, it would limit your target market to other landlords looking to expand their portfolio but it would eliminate the requirement to give notice to the tenant.

We’ve asked for valuations for this

My DF did end up initially in a LA funded 6 week placement home, we live at one edge of a very big county and were worried he’d end up an hour’s drive away but they did actually take into account our location and found him somewhere reasonably local (8 miles from mum but on a direct bus route), it was a bit shabby and few facilities but clean and the care was superb. We did move him to one closer to mum and more facilities after the 6 weeks but our fears about the LA placement one were unfounded.

There are also the questions of whether it’s the right home with this route as @SleepingisanArt has mentioned. She literally ended up with bed sores and almost burns (handed a hot cup of tea, luckily I stepped in took it from her) in the last care home she went into for respite as they shouldn’t have taken her in.

Sadly I’m now looking up to 20
miles away, I have tried most places I can find and been going outwards and outwards (aside from the one that literally got ‘requires improvement’ on every single factor in July of this year, confess I’ve skipped that one) and the one possibility is forty minute drive away and it’s a horrible drive at that, literally involves a level crossing where you can wait for 15
minutes plus, two humped bridges that require traffic lights and then miles on the 30 mile an hour roads round our nearest big town that are chocka at rush hour, it’s why I’d discounted it up til now.

Where abouts in the country are they? I work in the sector and if they are in my area I might be able to point to options. I’m in the south west

You could call Care Rights UK for advice as they specialise in issues around residential care and funding. Independent Age are also worth a try as they have specialist social care advisers.

The hospital dm ended up in had a separate company help you find a care home. We had no hospital social worker. Luckily one near me was available and it was a great care home.

The other issue is that councils do all they can to avoid doing anything if you have assets. It’s totally down to you. A social worker from our La did contact me eventually and tried to say the hospital were saying dm was going home. This was a 100% lie. Totally wrong. Dm could never have managed at home. The social worker said she could with 4 visits from the care team every day. This was actually laughable! Essentially they thought they were paying. When I eventually got the message across to this lying “professional” that dm was paying, she climbed down. She said she’d had meetings with hospital staff and they agreed dm could go home and she said she’d seen dm. Frankly I didn’t believe any of it.

I have a friend who could not find a care home when the needs of a family member changed and dementia got worse. Complex needs are very difficult to place. I do wish you luck.

Age uk merely told me I was DMs carer and I needed to accept that. Pretty useless. No help at all.