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?

Believe me, if she can do all this then she absolutely does not meet the threshold for needing residential care.
She may want to live in a residential home for company, for meals to be provided, for laundry to be done, but that’s not the same as NEED.

Just want to say thanks for posting that. My uncle has recently moved into residential care. The other LPA was given a figure for the amount we will have to pay when the 4 week assessment period is over. It’s £1040 per week and I can now see where this figure is derived from.

The definition does fit where my uncle is at the moment in terms of his needs. it’s helpful to have the official view.

You absolutely are scaremongering.
If someone’s care needs are at the extreme level of care then the likelihood is that they would qualify for CHCF, and the LA would make sure this is applied for.
The person would have to need 2 carers 24/7 to cost £8000 a month!

None of the funding decisions are made because of being broke. It's about protecting Adults from over zealous relatives forcing them into care when they fare better in terms of well being at home (not saying that is the case here but most relatives jump at the chance of resi care for solvable problems)

Unfortunately this often isn't true.

In patient hospital, SW, in home support often do not understand that every two hours means exactly that.

The worst was in hospital, we were begging for the medication (that we usually administered but they had taken off us) but they wouldn't change the order of the ward round. Took us three days to get a Parkinson's nurse in to force a change.

I just want to protect her quality of life and was a total newbie to all this, if people think I’m entitled, I’m sorry. Ignorant, yes. Entitled, no.

You arent entitled. The threshold for funded care is dangerously high and you just wanted whats best and safest for your mum. Good luck OP.

I had case of someone with 2 carers over 24 hours fully funded by social care. More usual is 1:1 over 24 hours. Also not funded by CHC.Challenging behaviours are not seen as a health need.

Yes sometimes you are thrown into it through circumstances or a sudden change with no understanding of the process.

@toomanydicksonthedancefloor1- I hear you.

Blue - please stop taking rubbish. You will probably scare people. £250k or over £600k per year is complete shite. No one will be paying this.

@Blueuggboots those of us who've been round the block know just how terribly high the threshold for residential care is. That's why we roll our eyes when there are posts from people who say they will give away their money so their care is funded.

@countrygirl99- no giving away here! She just doesn’t have a lot, but is over the limit for funding, but doesn’t have access to the money unless her flat sells. From what people have said here (and I AM listening!!) moving her to a care home, (regardless of our very lovely intentions) is not going to be possible. 😩😩

Unfortunately it is a bit of a catch 22. My uncle probably should have been in residential care I would say a year before it actually happened. But I don’t think social services would have agreed at that point. I remember having the discussion with the other LPA saying we could just decide ourselves to move him but if we do that without SS agreement what happens when the money runs out? Which it would have done within a year/18 months without the sale of his property.

we had to go down the carers route first which we didn’t think would work for him and sure enough he got worse and the whole thing clearly wasn’t working within a few months.

@Blueuggboots not saying you are giving away and you are in that awkward zone financially. But so often you see that shortsighted comment and your predicament illustrates the drawback perfectly. You know your mum would be better off in a care home, she wants to move in but without the ready cash you are stuck. At least she can once the flat is sold. If she had done what so many suggest and either spent it given away her money you would have been in an even worse position.

Unfortunately they don't help until there is a proper crisis.

With MIL, I contacted every agency, politician, councillors, and charities (e.g Alzheimer's UK) I could think of. Pretty much no one helped except our local Tory MP. Most others ignored me.

When MIL set her kitchen on fire by microwaving something so long it spontaneously combusted, the Fire Service were great as I asked them to do an adult safeguarding referral. The GP did one as well etc but still no help at all from Social Services.

In the end, the crisis happened, fell and broke her hip and that was the point we finally got her into a care home after several months of her bed blocking the hospital. We had to be very assertive with social work and make sure they documented no one in the family was able to be the carer. At one point they wrote down we were suffering 'carer stress' which was bollocks.

This is where every one of us who is able, needs to be working and paying Tax to fix this as the whole care sector is on its knees. We must start paying care sector workers a proper decent wage and not the minimum wage for shift patterns that could be anytime 24/7.

When FIL was ill we had a lot of issues with social services to the point we ended up paying for private carers and doing a huge amount of care ourselves as we didn’t want to wait for them to get their act together while he suffered. If it’s an option to get any care privately at all I’d recommend that if it’s an option for you. We arranged a carer for every morning to help with washing and dressing as MIL couldn’t manage that due to her own health and then we did the rest between us . It just got care in place quicker and kept FIL comfortable. I really feel for you as it is a terrible situation to be in and so frustrating

@countrygirl99- but as others have said, if we move her, and in 18 months when her money runs out, she still doesn’t meet the criteria, then we’re properly screwed…..

at present, mum has to contribute £70 a week to fund 2 carers visits……

Yep. Horrible when you have to keep your fingers crossed for a fast enough decline when it's exactly the opposite of what you want in reality.

I think you should look into an extra care facility which is a half way place between a sheltered scheme and a residential home.

In extra care, she would have her own flat but the staff are on site 24 hours and offer care and support. Extra checks can be written into the care package and they can do shopping and laundry on top of meal prep, personal care and meds prompting. It’s quite a lot cheaper than residential care as you pay rent and care bills but are financially assessed for both. She would start off by paying full rent and carers bills due to the equity but once she has under £16k, housing costs will be subsidised via housing benefit and care costs may also start to be subsidised.

They have high thresholds and, in my experience, the only people not accepted are those who wander or who are behaviourally aggressive/challenging. As it is usually social housing, you’d have to check whether they would accept a home owner. They might need to see proof of sale first.

@Florencesndzebedee(great name!) yes, that has crossed my mind. There’s a nice one about 10 minutes from us. This is the other issue - we live in different towns so are working with SS in HER town but will actually end up working with SS in ours!

Any social worker experienced in working with older adults will be fully aware of the importance of timed meds visits for Parkinsons. As should any domiciliary care agencies they contract with.

I wish - we could not even get staff on a hospital ward to get that right! The Parkinsons nurse had to give them a bollocking and we had to stay with him in order to remind the nurses when the meds were due.

The idea of an extra care facility is great in theory but what it often means is that the person has to move twice: once into this facility, then (when the move has confused them they decline rapidly) a further move to residential or nursing becomes inevitable.

In the end, the crisis happened, fell and broke her hip and that was the point we finally got her into a care home after several months of her bed blocking the hospital. Such a common and unnecessary scenario.

It is hard for SWs - I was one for 25 years, so I know - they have to protect people from over-zealous relatives who want them to be in a home when that is not what the person wants or needs, but they need to avoid prolonging care at home with the risk of the "terminal event" of a fall and fractured femur.

The reality is that LAs fight tooth and nail to spend as little as possible - I would do an assessment and the LA would prune my recommendations to the bone, putting the person at risk - and there was nothing at all I could do about it.

It was because of this that I eventually left because I knew that the assessments were often ignored.

Having secured some home care visits, you then have to run the gauntlet of the flawed system: "getting up" visits delayed till lunchtime while the carer dashes round all the others on her list, incontinence the minute the carer leaves, incompetent uncaring carers (some are angels, some are not), carer sickness and person left uncared for .... the list is endless.

I speak as a retired social worker and as someone who employed care for my late OH. I could not leave him on his own in the house, so when a carer arrived I would take the opportunity to go for a walk. I returned one day to find the darer administering a drug dose that would have killed him ..........

@Mischance- we had the same issue with medication in hospital. The nurses were giving my mum less medication than she should have had and also not at the right times. They got very shirty when I told them it was wrong. It added to my mum’s distress at being in hospital and meant that I basically had to stay there all day to ensure she got the right medication.

I am NOT trying to shove my mum into a home to forget about her but to ensure she has quality of life and that we as a family, (possibly selfishly!!) can relax some of the time.

Yesterday, we dealt with 6 phone calls from mum about different things and my partner popped over to see her in the evening as I couldn’t.

we both work full time and I have a teenager who also needs support and transport to different things. Juggling is already difficult.