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?

I had a nurse who didn't understand the problem in giving important information over the phone to mum with Alzheimer's when dad's notes said all discussions needed to be with DB or me because mum was incapable of retaining information. Dad has demerium from an infection and mum hadn't even noticed he was ill.

I completely disagree that it is entitled to expect adequate care for someone in their later years, especially a lady who is actively saying she wants care herself.

The threshold is too high and waits for people to hit crisis point. This is completely wrong. The burden is placed entirely on families to the point that it completely destroys their mental health.

MIL cannot cope at home, we don't need a social worker to tell us that. We are the ones dealing with it daily. They just turn up, put a care package in place with carers that only stay for 5 minutes and leave again leaving family to deal with the fallout when it all goes wrong.

@sugarandcyanide- exactly this!!

I have an older brother but he’s got a young child and works 4 days a week, 8-5. I have a teenager and work full time but do shifts 7-7 so I am available more and my mum would never bother my brother because she always rings me first but I actually work far more hours than my brother does.

I’m medical in my line of work so I go to all her medical appointments because I hear more than people who aren’t medical and read between the lines, which my brother wouldn’t because he’s not medically minded.

To be fair to the social care sector they have been telling people the system is fucked for 20 years but nobody really listens until it personally affects us and successive governments haven’t tackled it because it’s too big of a job.

It isn’t entitlement OP it’s just not realising the reality of things until you are faced with it. Some good advice on this thread though.

One of the CHC funding assessment domains focuses on challenging behaviours.

Why would I do that? Why would a solicitor in community care law lie in a workshop?

Few families could afford to pay 6 figures for care, but LAs and ICBs do. You are clearly not familiar with this sector!

It takes three full time staff to provide 1:1 care in waking hours. That would cost £75,000 pa alone, just in wages, then there’s employer’s NI, annual leave, sick leave, pension contributions and training. No way is £8,000 pcm x twelve, £96,000 going to cover the costs of six full time staff in waking hours! It’s going to be £150,000 pa, plus the additional employment costs as above, hotel costs, admin costs, activities, facilities, etc….

We looked at a care home in 2021 for DD1. They decided she needed 1:1 care 24/7 and they quoted £5,000 to £6,000 per week for her. NB - possibly £300,00 pa for 1:1 care. Not 2:1!

You are also wrong that any LA would tell the family to apply for NHS CHC funding. Nobody at Social Services even told me about it. Someone on a charity forum told me. Then I asked the social worker about it, and they told me DD1 was unlikely to get it.

DD1 was at a residential school in another county. I applied to our home CCG for NHS CHC funding for her. They said she was the responsibility of the school’s local CCG. They weren’t going to take responsibility for her either. I had to write to the Secretary of State for Health to ask who was responsible for her. They told me to take it up with NHS England. It took me two years of chasing to get the answer out them - it was our home CCG. I could have given up at any time, and our LA would have ended up having to fund DD1.

As for NHS CHC funding for challenging behaviour in adults, there has to be a primary health condition behind it. (I am not familiar with children’s CHC funding, but I would have thought fundamentally it’s still about a primary health condition)

Exactly so , I started work in the time when elderly people were sent off to nursing homes at the drop of a hat until people worked out that a. the cost was becoming exponential b. they realised that supportive care in the home was preferred by many of the elderly people themselves and also helped preserve mobility ,function and social connections. The ironic thing was despite the much lauded move to intermediate care and support /rehab services in the communtiy (which meant the NHS reduced its bed capacity which has led us to the terrible issue with lack of movement through the whole system from A&E to safe and effective discharge planning) there has been an utter erosion of said rehab. support and primary care services that allow people to safely remain in their homes and reduce pressure on families. So we all have to currently suck it up,acknowledge that the system is fxxked and plan ahead for our future wherever possible.

So, started looking at extra care places so we can move mum closer to us. Nope, that’s not going to work either as all the local extra care places are organised through the council.

As she is already known to social services can they make the referral, that's how it works when we looked for our parent, the flat was self contained with 24hr support and rented even though they were self funding. Are there supported housing schemes ,in the areas you're looking at.

What part of the country are you looking at, we have some lovely extra care near us in the south west

But the council don’t want to offer her a place elsewhere? They think she’ll manage on two care calls a day…..this is also a different council as she lives in the next town from me.

@Blueuggboots we had a social worker suggest extra care when they were obviously trying to work through a slow process and we were trying to make it clear that we were barely managing between crises. Have you spoken directly to extra care places? To understand if they have any spaces and how suitable they might actually be - when I spoke to a couple of managers they wanted to understand need level first. Even from our phone conversations they said needs were beyond what they can usually support and I was able to report this back in my argument with social care. If you have discussed needs you are at least armed with whether 4 calls at set times for medication is even possible.

Also, record every issue in a timeline, call to notify her council about every problem, make them have to record these - keep reminding them 2 calls are not keeping her safe and well. If they keep having it pointed out, you may move up the list.

This was the issue we had with my relative’s care. He lives in one county and the other LPA lives in a neighbouring county. So relative was never going to live in a home very close by due to where the funding will come from when he runs out of his own money. He’s ended up 45 mins drive away. Not ideal but he’s close to where he had his house so he does have some local friends visiting which takes some of the load off the other LPA.

Once you're in a care home you are completely reliant on others. You say she can't get the bus alone etc, but in a care home she'll never ever take a bus again, even with a carer. The things she can do will deteriorate. I honestly think you need to try anything you can to keep her at home.

@BillieWiper- we’re looking at extra care, as a care home has been ruled out.
She can’t physically manage to get a bus easily physically or mentally. She uses a wheeled walker.
I don’t want her catching the bus! She goes out with friends who pick her up but I want her closer to me so I can pop round much easier and take her out as well.

I know what you mean. My mum uses a wheeled walker. They're great. But yeah it's not easy getting on and off busses with one..despite them supposedly having a ramp.

I'm glad you're going to try and get extra care at home.

It's good she says she wants/doesn't mind the concept of a care home when the time comes. But for now try and just give her as much supported independence as you can.

@Blueuggbootsagain you’ll be up against the barrier of her not having the level of need that is required for extra care sheltered. The council will not fund it. Looking at options outside her home borough then complicates it even further, as their responsibility it to manage her needs within their jurisdiction.

A different council from the one she currently lives in will not fund her. She needs to self fund. Otherwise she needs to try the POC they are offering, only once this is increased to the maximum and it is breaking down frequently will they consider funding anything / anywhere else, and this would be the same council unless very specific care needs that cannot be met by the council she is in.

@Blueuggboots solidarity for the rubbish situation you’re in. Similar to my mum, she would have benefited enormously from moving into the care home she’s in now 6-12 months before she did. They do trips out and daily activities in the home and they’d have kept her safe and stimulated instead of mouldering away in her bed all day alone at home. It was slightly different for us as mum was the one refusing to move, and had LA commissioned carers 4x daily, although she paid as she had a small lump sum from my dads pension when he died which took her cash over the limit for self funding.

We had to wait for the inevitable crisis, and everyone at the hospital agreed with me that she was no longer safe enough at home, even with all the adaptations and carer visits. Her LA, which is allegedly relatively well run in the big scheme of things, didn’t even come to the best interests meeting at the hospital or meet her. A SW from the LA reviewed the hospital paperwork and decided she could go home again and they’d up the care visits so that it was 2 carers 4 times a day. And mum could wear incontinence pads and lie in her own waste until the next visit.

That was not something DB or I would ever accept, but the LA would not assist us in identifying a suitable care home, even though mum would be a self funded once the house was sold. They bluntly told us we’d be on our own if we declined the care they offered. I happened to be fanatically lucky in that the second care home I rang in a panic was the first in her area to get an outstanding CQC rating and happened to have a vacancy (they’ve currently got a waiting list). I’m paying the fees from my pension savings with DB’s agreement I’ll get the money back when mums house is sold. When mum arrived the care home manager was very shocked that the LA said she could go home from hospital, and said they already had residents in a much better state than mum that the LA funds.

There’s a resident there that I was chatting to on a recent visit who was telling me how much she loved it there. No cleaning or laundry to do, nice home cooked food prepared for her, regular days out (they do a weekly trip to the local pub for bingo!), always someone to chat to if she wants and if not there’s a quiet conservatory to sit and read the paper. I think with recent advances in medical treatments, our elderlies are now surviving previously fatal medical events, but then “existing” in poor health for their last years. So there’s a much greater need for care homes these days than ever before. I’ve seen how it can be done right at mums home and it’s a very long way from the days of the sitcom “waiting for God” when every single one of those residents would be living at home these days!

@neverevergonnaeatkale- I know! But how are we supposed to manage when we both work full time and have children to look after and spend time with too, whilst juggling frequent phone calls and emergency visits to sort out my mum?
if we can move her closer, then that will make it so much easier.
I don’t have room for her to live with us and I wouldn’t want to do that anyway. She lives with us for 7 months when her and my dad split up (prior to her dementia and Parkinson’s diagnoses) and it damaged our relationship and mine and my partner’s relationship too.
It’s just a bit shit. She’s worked all her life from 16-65.

@funnelfan- I’m sorry for all that trouble but glad you’ve got your mum into somewhere lovely now!

Have the carers started yet? If not, you may find that the twice a day regular visits and new routine will help calm down her anxiety and lead to far less calls to you.
Have SS talked about direct payments? I know your mum is largely self funding, but you can opt to have the SS contributions paid directly to you instead of them setting up the care package. You can then add that to her contribution and create a private care package that is really tailored to her. For example, it could be at different times on different days.
It’s really important to keep a diary of the bouts of anxiety / calls to you about this. This will help inform the next SW review of her needs.

@neverevergonnaeatkale- no they haven’t. We’ve asked for them to implement the 2 care calls a day but we’ve not heard from them…..!!

We have to pay £68 towards her 2 care calls….

Per week or per day?
I imagine the delay is in the SW taking it to panel where it’s gets presented and then hopefully signed off. Unfortunately it’s never a quick process.

@neverevergonnaeatkale- a week.