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?

Her flat is up for sale for this very reason.

But only if SS have assessed that that person needs to be in a care home and at the moment she doesn't meet that criteria from the sounds of it.

I think you need to try carers at home and utilising assistive technology first. Ask for an OT assessment to see if there any other aids or adaptations that might help. At the very least this might delay her needing residential care until the flat is sold. Use the need for 4 x a day meds as the reason for carers. She will be financially assessed for this care.

Retirement flats can take a very long time to sell and you may need to drop the price which might affect what home she can afford.

Be aware as well that once funds run out, the local authority sets a cap on fees so if the home she has chosen is too expensive, she will need to move unless you can make up the shortfall with her benefits. Best to check now with the home you have in mind that they have beds at the local authority rate.

@Florencesndzebedeethank you. Yes, they are aware of her financial situation and we would top up the difference once she was being funded by SS but we cannot afford to do that now, or fund her entirely now.

she’s already had OT in and has been given extra aids etc.

we are aware of the difficulties of selling a retirement flat and have priced it very sensibly with that in mind.

her physical ability is not too bad considering she’s got Parkinson’s, it’s her cognitive ability that is declining rapidly.

If when the money runs out they still don't feel she meets the criteria they still won't fund the care home. She would need to move out again - they would probably look at sheltered extra care etc.

But in 18 months, her condition is going to have deteriorated considerably. It’s deteriorating daily as it is.

Not necessarily enough. Dementia decline often plateaus and that can last quite a while. One of the reasons dementia is so hard to manage is because pathways are so individual. My mum was diagnosed 5 years ago after it being obvious to us for a couple of years, still lives at home with twice daily checks to make sure she hasn't switched off the heating or left the freezer open etc but she still shops and cooks for herself. She can easily go a year stable and then something else gets lost. Someone else might go from forgetful to incapable of anything in 12 months.

I've said it before and I'll say again and again - watching someone with dementia (of any type) is like watching a slow motion car crash - you know what's going to happen and are powerless to prevent it. Usually it's because the person with dementia or their immmediate partner is refusing additional support / care.

Look I appreciate 2 visits per day is minimal and at minimum your Mum needs help with medication 4 times a day - take what's offered and then pester for more.

Has you Mum claimed every benefit she's entitled to - reduced council tax, attendance alowance etc . If not put the wheels in motion as they coud help pay for extra carer time. And attendance allowance is payable when in a care home and therefore contribute to fees.

Also try and get your Mum out for social things too. Local authority day centres are probably a thing of the past, but local community groups are around and can be a life line. My dad was reluctant to take my Mum who had dementia but we eventually persuaded him to go a a music group which Mum loved. He still volunteers there and Mum's been dead for coming up 3 years and she was in a care home for nearly 2 before she died.

Check the Alzheimer's society website for local groups - they don't give a fig for the type of dementia the person is living with. Aged UK website is brilliant for financial things too.

First thing is for your mum to have a capacity assessment and a care needs assessment, you can speak to her GP and dementia or pd nurse about this and her medication. If she is deemed to need residential care push for the deferred payments, if she is considered safe with 4 x daily carers then you'll have to try that. Is there a keysafe, falls alarm, mobility equipment, also look at benefits, attendance allowance, if she has nursing needs fnc. Is there poa in place, can she have you do her banking, online shopping.

She’s had a care needs assessment. They think she can manage with two calls a day, we don’t agree. She has a key safe, mobility equipment and has attendance allowance.
Her friend takes her shopping once a week.
we have POA.

Medication is so important with pd and I wouldn't leave it with ss to decide what's safe. I'd ask for a GP, pd nurse, community pharmacist review and assessment, they may suggest patches or if not decide she would not manage taking tablets on time. Would she have daily hot meals delivered, there are several companies where I live that do this. What do ss suggest the carers do, are they offering medication, personal care, meal preparation.

As PPs have said the current practice is that someone will not be deemed as needing a care home unless 4 x a day care package at home has not been enough to meet their needs. If you need any funding from SS then she will need to meet their criteria for care home funding.
Have you thought about borrowing some money against the flat to fund the gap until it’s sold?

She isn't anywhere near the local authority threshold for residential care though. If two care visits a day aren't enough try three or four. Try extra care if independent living is no longer working.

I appreciate you want your mum to be safer but a care home will take away any last scrap of independence she has and if she's still able to prepare meals etc then she isn't at the resi care stage.

You are the expert in your mum but the social workers are benchmarking her against the 100s of other people they support to safely remain in the community until that is no longer possible. Perhaps also ask about day centres, social opportunities, direct payments, extra care housing etc to see if there is a balance somewhere between independ living and residential care for the moment?

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.

So how would 2 visits a day work with 4 x day meds if the person cannot manage themselves.

Because they have suggested a way she can manage the meds herself thus doesn't need 4 calls (pill dispenser). They are obliged to try this first before putting in 4 calls

The system is fucked, OP, in short due to a serious lack of funds and there is an ocean between what your Mum needs and what she'll get. Can you look at equity release on her flat instead whilst it's on the market?

Giving over the amount of care calls she needs, if she doesn't have capacity, is the most restrictive option. ASC are obliged to maximise independence by law . Its nothing to do with funding

How long will they monitor it, do they ask the community pharmacist and GP to assess. Op, how does she manage her meds at the moment.

@MissMoneyFairy- i order all her medications, i put them in dissey boxes for her. Initially, it worked well. Now, not so much. I find boxes with empty sections that I know I filled, and today, she took her morning and night time medications at the same time.
we have ordered her automatic dispensing pots today but I think they’re going to confuse her more!!!

her physical health is generally good and although she’s slower than she was physically, she does pretty well. Only has occasional falls. It’s the cognitive and memory issues we are very concerned about. The deterioration in 6 months has been massive. She can’t go out on her own, she can’t catch a bus or a train alone. She can’t shop anymore without support (used to go with a friend who was also doing her shopping at the same time now only does mum’s shopping and rotates the stock in the fridge and throws away any manky food.)
Her short term memory is dreadful and she gets really anxious. I don’t believe carers popping in for 15-20 minutes twice a day is going to solve this.

*dosset boxes

Ask the LA to put a legal charge on her property which means that they fund the care till the house sale goes through and then recoup the cost. This happens all the time. I understand their reluctance to do this as they do not think she needs residential care - but often this decision has a financial basis in reality. People are put at risk with inadequate care based on a brief assessment, when those around them truly know what is and isn't safe.

What does your Mum want to do or has she lost capacity?

The other option is a loan pending house sale.

Again

Local Authorities cannot just fund residential care for every person who feels they now require it.

Local authorities can only fund residential care where there is no other option to keep the person safe. It is an absolute last resort.

This isn't adult social care being mean or penny pinching, there is a huge range of services the OP and her mum could access before considering residential care. If the OP and Mum did have the funds to pay themselves then even then any good social worker would still be advising them to try increasing the care or considering extra care or day services first.

In my local authority care home places are scarce and many extremely frail older people with no other option are left in hospital beds on busy acute hospital wards at huge infection risk waiting for places to become available.

OP is rightly advocating for her mother but the social workers and the local authority are looking at the bigger picture and trying to keep people in the community where possible and prioritise resources for those that need to be in residential care as best they can.

if you disagree with the assessed level of need then fund it yourself. Why is it social services that have to do a DF when they have assessed eligible need. They are highly trained and highly skilled to do so. I’m sorry to be harsh but where does this entitlement come from? It’s frustrating but are also involved and as she is going to be a self funder then resolve it yourself

My mum has dementia and uses a pivotell (timed device for meds) for her meds and it works well. They sound an alarm at the set time and you can only access that dose so much better than dosette boxes for someone who gets confused.