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?

You need to be willing to to try what they suggest OP, so the meds thing, carers etc. they will not fund care, even deferred payment, until other (cheaper) options have been explored and trialed. To be fair it sounds like your mum is a long way off meetings the criteria for funding at present. Have you worked out how long the money from the sale of the flat will last her in terms of payments for a care home? You are aware that after that money runs out S.S may not be willing to fund it meaning you will have to self fund or your mum goes into some H.A assisted living scheme. Or if they do agree to fund it is likely to not be the full amount meaning large top up fees for you or a move to a cheaper care home which can be very disruptive and not necessarily near you.

From your op, your main concerns are:

• can only heat ready meals
• 4 times daily medication
• finds shopping difficult and needs support
• gets distressed when things go wrong.

Unfortunately, that's going to fall way short of the requirements for residential care.

Good quality ready meals are relied on by many older people. There are services that will deliver them daily, hot, and will even cut them up.

Medication would be given on the 2 visits, and the carers would note if they found the medication hasn't been taken when they visit in the evening, which would be evidence that your DM needs more calls.

The shopping can be dealt with by online shopping.

The distress when things go wrong is difficult, but a lot of relatives deal with that.

Unfortunately, it's just not going to meet the criteria, yet.

She’s going to exist, not live. That makes me sad.

What do you mean? People in care homes are not having a grand time! Most would prefer to be at home

I would suggest contacting Parkinson’s UK Helpline & asking to speak to one of the advisers who specialises in care ( they have a team of care advisers ) to discuss how you can challenge SS. You sound like you want to make to best decision for your mum by being proactive, madness to wait for a crisis.

Having been through some of this with late parents. You are really not understanding how SS work because what you want is that:

1. SS agree she is at a stage of needing a care home which for many many people are the very last resort
2. They lend you the money and one day in the future you pay them back
3. Retirement complexes are very very difficult to sell. Late parent rented so we didnt have this issue.

We are talking about £££ for people living in a care home circa £6-£8k per month.

What happens when the money runs out. If you have chosen the care home yourself you might well need to move Mum out although you do seem to indicate that you will top up when the time comes.

I always knew my late Father was topping up people who were funded by the LA. His fees when he passed were £8k PER MONTH. No LA will pay this. Could you afford a good few thousand every month.

My late DF lived in a care home for over 4 years. Late Mum only 1 month.

I dont mean to be harsh but you need to take a deep breath here and think about what is on offer as opposed to what you would like to have for Mum

I understand your sadness and frustration at the situation, OP. As everyone has said, you need to try care at home before anything else can be done. Deferred payment can only be considered if the outcome of her Care Act assessment is that she needs residential care. Otherwise, as pp have said, you are just asking SS for a loan.
Are SS funding the two care calls a day or is she self funding for that too?
I agree with others about being mindful about her still not meeting the threshold for residential care once her money runs out. It may not be the case, but what would you do of it was?
Regarding her anxiety, I recommend that you keep a diary as evidence so that you can use that to inform any future assessments/ reviews. Does she have any specialist PD/ dementia teams involved? Are there day centres or groups that she can attend to help improve social contact, cognitive stimulation etc?

Most elderly people are anxious in later years. My Mum drove me bonkers.

She didnt do online anything so I didnt need to concern myself that she would be scammed. Mum used to worry about all sorts and calling me about things that you and I would just deal with but to her it was the end of the world. I had to have her post redirected to me because she would get herself in a state when a letter came that she didnt understand.

If there are less than 18 months (is this equity in the property?) and your mum does not have a residential care need, youvwill be putting her in a very precarious position.

From what you have described, it doesn't sound like she does have residential care needs.

I know it is very difficult to gauge when it is your own parent.

You need to take their guidance, they will know the legislation and what is possible. It is not a case of SS being mean or unhelpful, they have very strict parameters to work within.

We're in the same position, it's horribly stressful and a constant worry. No advice because we have the same challenges but I sympathise.

The only difference is we have tried everything already. Tech solutions and carers only marginally helped and have massively drained any savings. LA carers are dreadful and they won't fund better care.

Yes social care is expensive and LAs can't afford it but this is a problem that comes with an ageing society and it needs complete reform. It is not stressed out families' fault that the system is broken.

@Blueuggboots has she had a review of her Parkinson’s recently/do you have a Parkinson’s nurse involved? Just because a. sometimes PD meds need to be adjusted as they themselves can worsen PD related dementia symptoms b. Sometimes nurse specialists can help with advance planning and suggestions of managing medication issues. Please don’t think that care homes are always a good option and reduce problems…take someone away from their own homes and routines, and it can mean mobility, cognitive functioning and physical function reduce. SS are definitely far less likely to move people into care early - this is obviously generally motivated by money but supportive care in the home can be a better option whilst the person still can manage (but i recognise that getting adequate care visits is often the issue and can cause a lot of worry as a family member).

https://www.hants.gov.uk/socialcareandhealth/adultsocialcare/carehomeframework/ratesandneedsprofiles

It may differ from LA to LA, but here's a guide to the eligibility for different care levels.

Our family is going through the process at the moment with DF who has needs that I think 99 out of 100 people would consider absolutely exceeded threshold for residential. The 100th person would probably be a social care manager holding a budget. People would be terrified for the future if they knew presently how high the threshold is.

You have two options. Try the two visits a day (likely to increase) and see how it goes, document any issues and get feedback from the care agency. It may become clear without your support she does need a care home to be safe. If she starts turning the gas on, wandering, having frequent falls etc then it would be a case.

Or carry on as you are, wait until the flat sells and move to a care home when you have funds. By the time the money runs out her conditions may have developed to the point where a care home is necessary anyway.

I sympathise, my mum has advanced dementia but in our case my dad was carer long past the point where she would not have been safe to live alone.

@Bahbahthe- yep, Parkinson’s nurses involved.
I’ve ordered automated medication boxes.
We live about 30 minutes away and one of the reasons for moving her was to move her closer to us so we can pop in and support her more in the care home and so that shopping, cooking etc was removed from her so she doesn’t have to worry about it.

@neverevergonnaeatkale- she goes to church on a Sunday and a Wednesday, gets taken shopping on a Thursday, goes to a church group on a Thursday evening and meets up with friends on a Tuesday lunchtime (she is collected and dropped home as is not safe on public transport) and family see her about once a week minimum dependent on what is going on, so she has quite a lot of social interaction already.
but I have phone calls from her friends who are concerned about her and her poor memory/cognitive function.

Our family went through similar with our mum. I have to agree your mum is nowhere near the threshold for residential care. We went through every type of tech/gadget to help at different stages of her cognitive decline e.g. cctv in the house and trackers in case she wandered. The decline is so hard to watch. I think you have to try the 2 (hopefully 4 visits) a day for now (although carers were never punctual). We had a different scenario as when my mum was competent she said she always wanted to be at home. This bought it's own challenges.

My aunt, who had Parkinsons, had her medication through time release patches. This was 15 years ago though. Is that an option for your mother?

Indeed. I worked in adult services and said in my post that it hinges on the LA assessment and also pointed out that the assessment often does not reflect the reality that relatives are seeing..... no-one's fault .... it is impossible to truly assessment someone's needs in the time available to the SWs .... they just see a snapshot.
Relatives often have to be very firm to get the real picture across as they do not want to achieve the safe care of a residential home only after a fall has happened.

They will pay more than £8,000 PCM. I have across people costing £250,000+ pa.

Blue - that is not true. £20k plus per month??? Stop scare mongering!

OP I feel for you. We are suffering crisis after crisis with my mother in law who has Alzheimer's who is currently 'caring' for my FIL who has terminal cancer and is in and out of hospital and has nearly died several times but keeps recovering and then going back home. They currently have carers 4 times a day but they are both pig headed and stubborn and refuse cleaners, meals on wheels, etc and pretend they are coping. Every time FIL goes into hospital MIL almost has a breakdown and starts being very aggressive with her family members. She is not capable of looking after herself or my FIL. Every time he goes in hospital he is malnourished and dehydrated: social services have assessed her 3 times and say even though they know she doesn't have capacity she is passing their capacity test. So they advise carers 4 times a day is sufficient. They say until something bad happens (which it will) they won't act against her will. The medication you mentioned stood out to me, she will NOT remember this on her own. Getting my MIL stable on her meds was a long and hard battle with her. They are now locked away in a safe she doesn't have the code and the carers give her meds morning and evening so if your mum needs 4 meds a day she needs 4 visits if she isn't in a home doesn't she? Like your mum she can't shop, can't make a shopping list, can't cook, can't even really put away a Tesco delivery. I really really feel for you as the system isn't working for us, basically until a crisis happens we feel like we are on our own. And the whole situation has almost broken my DH and his brother. It feels like we are fighting everything and everyone including the parents in law that we are trying to help. My MIL and FIL also get these obsessive fixations, does that sound familiar? It could be a lost phone charger that ruined their entire day (both their phones were charged and a new one could've been delivered by Amazon the day after) or their usual obsession is the Ring doorbell. It's hard to talk them down from these and it usually ends up with my DH having to leave work to resolve them. You mentioning the banking app made me think of this that's all. Anyway I have no answers but I just really wanted to tell you, you have my utmost sympathy you really do

I am a retired nurse and my experience is that you will have to try carers at the maximum 4 times a day that then fails before SS woukd step-in snd pay for a care home by putting a charge on her flat until sold. I believe the interest charges are quite high. It’s not right but there it is. All councils are broke!!

I am not scaremongering! The most I ever heard of, at a workshop with a solicitor in community care law about 15 years ago was £600,000 pa. She did comment that she couldn’t help thinking, health should have been contributing to the funding!

A deferred payment can be used if someone is professionally assessed as needing to go into a care home, not if the family think they do. The elderly person also has to be able to agree to a deferred payment scheme - if they have detention they may well be assessed as having no capacity to make that decision.