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?

So going on an average of £20/hr for care, SS are funding 3/4 and around £200pw of the care package (apols of my numbers are wildly out). So you could have that as a direct payment and create a more bespoke package. It does mean you have responsibilities as an employer, but SS should have a team to help you navigate that. Could be a better idea of you’ve got quite specific needs that don’t necessarily come under a traditional SS package of care?

How long are the care calls?

All you can actually do at this point is ask them to increase the care visits, which would increase her contribution. The threshold for going into a care home is high, my mum developed dementia and we had nearly 3 years of increasingly aggressive behaviour towards my dad (threatening to 'put a knife through him' at 3 am in the morning etc and carers reporting that she was hitting him and social services sending the police around) before they finally did a care assessment review and realised she'd been walking to the local high school and shouting verbal abuse at the students. She then suddenly met the the threshold and moved into care a week later. She met the threshold because she had become a risk to herself and others.

They just won't assist you with a care placement if you require funding until the 4 care visits a day plan has been exhausted. They don't want to know that you would like mum closer, care placements aren't designed to accommodate family helping, that's more the assisted living or extra care model within adult social care. Particularly if you are asking for funding in a different county, that's even more reason why they won't fund (I used to work as a sheltered housing manager and in council run care homes so have seen a lot of this)
We had to step away from my parents completely and show the social workers that there was no assistance to even get 4 care visits (my dad was physically disabled and part of mum's dementia meant she decided she absolutely hated him) it's going to be a battle for you to get this sorted out and currently your mum won't meet their thresholds.

It sounds like OP's mum is reliant on others anyway. Care homes do take residents on days out and they're not held prisoner. OP can still take her mum shopping or out for tea and cake if she wants to even if she's living in a care home.

@Lougle- I don’t know because we’ve asked for them to be implemented and they haven’t returned my emails.
it’s just so sad that so many people are being left to rack and ruin before getting any sort of suitable care.
i don’t think it’s unreasonable to want my mum to be safe and happy!!

I’m not suggesting anyone on this thread is saying that, but SS, with their ridiculously high thresholds are!!

Ok, you need to ring the social worker and ask about your mum's care plan. If the social worker can't give you an answer, ask to speak to the social workers manager. I say this because my parents social worker did a care assessment, didn't file it and then went on sick leave for over 6 months. Can you evidence that your mum needs more care than she's receiving at present? No disrespect, but it doesn't sound like she is a care home level yet and the funding wouldn't be made available. If you chose to find a care home after the flat is sold, then be aware the local authority can still require that she moves somewhere cheaper when her self funding runs out, they won't automatically accept a top up as there is a set amount they will pay.

Unfortunately the funding just isn't there for people to decide to go into a care home so unless they can fund themselves that's how it is. They will risk assess that your mum is safe and happy at home and most local authorities have a policy of enabling people to stay in their own homes for as long as possible, which is after all what many elderly folk profess to want. Local authorities don't see it as leaving a person to rack and ruin and it's often why admission to a care home is triggered by a crisis.

In my experience, hassling social services consistently and becoming a huge pain in the butt is the only way to get what you need

Social services also have a duty to choose the least restrictive option for care. My mum's capacity assessment took over a year for the social worker to complete. Both parents flatly refused to do power of attorney and mum's dementia became so advanced that she didn't know what money was. We literally had to use meals on wheels , on line shopping , tracking devices etc

I'd contact the ss manager and ask when the 2 visits are starting, they won't put this as a priority while you're helping, she goes out several times a week and has had ot input, does she have a falls detector care alarm, ss, the carers or emergency services can be the first responders. Could you rent out her flat instead to cover the cost of a residential home or private extra care.,what are the 2 care visits a day being asked to do, are there any day centres or social prescribing groups in her area she could access through her pd or dementia nurse.

Ars you claiming carers allowance which would cover this

The OP works full time so would not be entitled to carers allowance. Her mum has attendance allowance which is for this purpose and is taken into account as part of the financial assessment.

@MissMoneyFairy- can’t claim carers allowance. I earn too much money to claim it. You have to earn less than £190 a week to be eligible for it.

@Lightuptheroomim so sorry to hear this. Fortunately my mum got me and my brother POA 14 years ago.

Please check that you have POA for health and welfare AND finances, particularly if she did it that long ago x