Mum has dementia. Disagreement with Social Services about level of care required

[Blueuggboots]

My mum has Parkinson’s and has recently been diagnosed with Parkinson’s dementia. Shes 79 and was diagnosed with Parkinson’s 4 years ago and dementia earlier this year, but it is developing quite quickly.

She currently lives in a one bedroom flat that is in an independent living block. This is up for sale because we want to move her to a care home (and she agrees with this) near us and have asked SS to fund this whilst we sell the flat.

They have refused, stating that they think she will be safe with two carers visiting a day.

My mum is currently managing but is in the brink of an emergency all the time. We feel she would be safer in a care home and this would free up her brain power to do nice things rather than worrying about attempting to shop (needs assistance), meals (reheating ready meals is all she can manage) and being in her own other than when we visit. She starts to look at her banking etc when alone and gets very muddled with this.

if ANYTHING goes wrong or doesn’t go the way my mum expected, she becomes very distressed and shakes, cries down the phone and gets herself in a state and we have to go over to sort this out. I don’t mind doing this, but if she was in a home, she would be much closer (10 minutes instead of 30-40) and would have other people on hand to assist her immediately.

SS are suggesting she can manage with automated pill dispensers but I think this is going to confuse her more because she’s not great with technology and gets very confused with her mobile phone etc.

Her medication is on a very tight schedule (she takes it 4 times a day and it HAS to be taken at certain times) and I don’t believe that carers are going to be on time to provide the medication which will cause mum further stress and increase her Parkinson’s symptoms if they weren’t provided on time.

Has anyone else been in a situation like this and what did you do?

Unfortunately you have to try their system and show that it's failing. Two visits a day is very little. I would argue for 4 visits - which is the maximum - on the basis of the 4 times daily medication. Get the carers in place and then check on how it's working, whether they say your mum is resisting help and so on.

Are you seeking funding from social services for a care home or does your mum have enough money to self fund?

If you are not self funding, SS won't authorise residential until failure at four daily care visits at home. Until that point is reached, it won't happen. Get the visits increased and stop helping when things go wrong. Until there is a crisis or a critical incident, she'll be expected to remain at home. SS will be relying on your help. You have to step back if you want change. It's a shitshow unless you self fund and even then, your fee subsidises council funded residents so you actually pay not only for you, but someone else as well.

Step away. You need to force a crisis. Sad but true.

We are asking them to pay for her care until her flat is sold, then we would pay them back with interest!! (deferred payment.)

We are self funding, but we can’t self fund for the required time into her flat is sold.

@Blueuggboots what are the prospects with the flat selling?

Are social care funding the carer visits?

I understand how hard it is to be told to wait for (an even more serious) crisis and possibly moving area and council?

Social workers were not listening to medical advice in our situation and it was so frustrating.

It was a risk but we funded the nursing home until the house was sold - then repaid ourselves from house proceeds. It was actually cheaper than 4 carers plus rent, bills and food - but that will depend on area and level of care.

@FiniteSagacity- who knows? We’ve priced it sensibly but where we live there are a lot of retirement flats.
the care home want proof of 18 months of funds which we can just manage.
i absolutely don’t have the money to pay it myself. When the money runs out, we would expect SS to pay some and we would top it up (we will have more “disposable” funds in 18 months to enable this).

Local authorities have absolutely no money.

They have a criteria for residential care as its an absolute last resort for them to fund and at the moment your mum isn't meeting that criteria.

Lots of people on timed parkinsons meds are at home with 4 x visits a day, if the pill dispenser doesn't work then ASC will try 4 visits instead before considering 24 hour care.

I'm a bit confused about your later posts - does she have 18 months of funds or does the 18months worth of funds come from the sale of the flat?

This is the part that people don't understand when they say they are going to spend all their money to avoid paying care fees - money gets you choice and control and means you can choose 24 hour care when you are ready for it and not when you meet the last resort/no other option threshold for adult social care. Much like a hip op - private gets you seen quickly at a time and place of your choosing but if you are at the mercy of the NHS you get a hip op when you get to the top of their waiting list.

@hatgirl - we have to prove 18 months of funds which we have when the flat sells.
yes, I agree about the money but unfortunately, her and my dad divorced a few years ago and she doesn’t have much money saved. She would be under the threshold for SS if she didn’t own her own flat or if she still lived with my dad.

To make it clear, she needs to show she has 18 months worth of funding. She has SOME savings, and a small private pension as well as her state pension but the bulk of the funds would come from her flat sale.

I know you are very worried but they don’t fund care homes even deferred payments for people capable of making a meal (heating a ready meal counts as a meal) request 4 visits per day in line with the meds, far more likely to get that

What does your mum want? She might want to stay at home? Most do.

It states in the OP she agrees to go into a home.

OP it's tough but there's no money available to fund her or a deferred payment m. Echoing what pp said you must step back to enable a crisis. The more you help the less likely she will get aid.

@Cheese55- she wants to move to the care home. I wouldn’t be pushing for this if she didn’t want to move!!!

At the moment your mum doesn't meet the eligibility criteria for a care home place. You are effectively asking them for a loan, which they aren't allowed to provide.

Do you have LPA for your mum? If not, I suggest you get the application submitted asap.

They aren't a bank, they can't lend you money.
Im sorry but apart from the medication issue nothing you said in the OP is a reason why she needs to be in a care home funded by public funds immediately. If you want her in the home before her flat sells you'll have to borrow the funds and pay it back when the flat sells.

This isn’t true if someone is assessed as needing a care home. Social services will fund the place in that situation until the house sells. Sometimes they put a charge on the property to ensure they’re paid. However, the problem here is that they do not think the OP’s mum’s needs have progressed to that point yet. They won’t either fund it or prioritise her for a place if they don’t think it’s necessary.

@PumpkinTwistyWindToots- it’s called deferred payment and it’s an accepted way of moving someone into a care home????

The medication issue isn't a social care need, it's a health need so social care aren't allowed to take it into account.

Sadly this is just how it is. If your mum has assets she cannot get funding. I guess it makes sense as people would try NOT to sell their properties to avoid paying for care otherwise.

Yes exactly. That's the point I made. OP wants them to lend her the money so her mum can go into a care home when she's not entitled to it. She's asking social care for a loan. It's a different scenario if the elderly person actually needs to be in the care home.

Only when they are assessed as needing to be in a care home! Which she isn't. It's hard for you as her DD and you want her to have all the care she needs but in purely threshold terms you're asking for public funds that she's not entitled to.

@Soontobe60 fortunately we do. We got it years ago.

So we have to allow carers in and watch it fail and watch my mum suffer. They’re all about stepping in early to avoid crises….apparently!!!!