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

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.

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.

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.

@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).

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.

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.

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.

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?

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 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.

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

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.

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.

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.

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

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.

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.

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.

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

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?

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