Hypothetical question around custody/care of my disabled sister once mum passes

[velocity123]

She isn’t going anywhere soon (mum) but she had mentioned how she doesn’t want my younger sister being cared for by our eldest sister. My elder sister is an alcoholic (she thinks functioning, she’s not, can’t hold a job down for a start)
Anyway, she is not a nice person, she does love our sister no doubt but she’s very selfish, hasn’t seen our mum and sister in over 2 years, only the odd phonecall. She stays at home getting pissed all day, her son doesn’t go to school for the last 2 years and she hasn’t really tried to get him back in, claims it’s his mental health but then doesn’t turn up to cahms meetings or assessments 3 times in a row. Something is always someone else’s fault, no accountability for her actions, she is volatile, loud and too opinionated. Our sister wouldn’t be able to cope in that environment and mum knows this. Hence her not wanting to have my older sister being my sisters carer. How can we make sure this doesn’t happen ?
My sisters gets high payments of pip etc and I feel deep down that’s the only reason my sister is saying she would be the one having her when mum passes, I mean, she’s said it to my mom on one of these phone calls !!

That sounds like she was seen by the NHS learning disability team not adult social care.

You would self refer to adult social care, they arent involved unless you ask them to be and they aren't looking at the health aspects but at what support can be offered e.g. respite for your mum or planning longer term for e.g. supported living.

My nephew is severely autistic and has just gone into his own assisted living facility. He has own flat and round the clock PAs/carers so it is possible. It took my sister a long time to find the right place for him so if you’re thinking of something along these lines I would start the process sooner rather than later

Counties and City Councils organise slightly differently so there may be different priorities.
After my parents could no longer look after my sister, the county Social Services Team took over. Most of the decisions were taken by them about where she lived etc. As she was an adult and I was only a sibling I had very little authority. I was always informed and attended regular meetings. She moved into a home first than into a house with 5 others in an ordinary street run by Mencap for the Social Services Dept.
Sister enjoyed meeting new people and was a popular family member. She did develop more.
Her benefits were paid to me and I paid the CC. All the above was nearly 20 years ago.

GP’s do not arrange care and support. Local Authority social services teams do. So contact them and ask to have an assessment around future care planning.

Why are you against assisted living it seems the best option for everyone with a gradual move and you visiting

The other thing to take into account is the increasIng toll this will take on your mum as she gets older. Has your sister never gone into care for a short time to give your mum some respite?

A friend's daughter went into a care home for respite and loved it so much she asked to stay there, she lives there very happily, surrounded by friends, and my friend visits when she lies and takes her out for the day regularly.

Agree with PPs, trying to organise such a move in advance might well be best all round.

I guess because she’s never been without us, especially mum and she does get anxious when mum isn’t around

No she’s never gone into any respite because my mum always felt guilty

No she’s never gone into any respite because my mum always felt guilty

Of course, it's a common problem I'm afraid, but it really is vital for everyone. The stress on the carer is huge, sometimes they don't even recognise it themselves. With elderly people it's very often the carer who dies first. A friend of mine was in hospital when they brought in a woman with Alzheimer's whose daughter (her carer) had had a heart attack - in her 50s! There was no back up plan and nowhere else to put here other than a hospital ward.

Perhaps this is something you could try and arrange. It would only be for a few days and would gradually introduce everyone to a new regime.

The best thing you and your mum could do for yout sister is to start planning for this now.
Discuss the options with SS and get your sister settled somewhere BEFORE anything happens to your Mum

The thing is though guilt and shame @velocity123 are very personal feelings and actually relate to your mother and her view of what it would mean to put your sister in assisted living rather than actually looking into whether it would actually benefit her.

So I brought it up with mum today, she’s dead against my sister going into any kind of assisted living place, which I do understand, she said she has only ever been with her, my sister has the mental age of a child so it would be hard for everyone

@velocity123 has she acknowledged that she is not going to live forever though, and that she is going to get more frail? That when she dies your sister will be grieving and then facing a crisis move to a place she doesn’t know, rather than a managed process that your mother can be closely involved with?

set up lasting powers of attorney asap

Is your.mum the legal guardian and hold authority to make decisions for your sister? You can actually apply yo the court of protection to be given authority to act where the person doesn't have capacity to set up a lasting power of attorney. There's information here https://www.gov.uk/become-deputy/apply-personal-welfare-deputy
That way you would already be legally appointed to act for your sister and ensure what you and your mum thinks is best actually happens.

I think she doesn’t think about the future too much to be honest , my mum is very live for the moment. But will keep on at her

My son is similar to your sister in support needs/ capacity etc although younger. Some practical things we've done now are: -
had him put on the learning disability register so that we can access his GP/ speak for him/ get special services for sight/ hearing/ bloods/ hospital visits.

Had wills made so that inharitence goes into a vulnerable persons/ dusability trust- the la will take it to pay for care, by doing it this way the funds can be used in other ways.

Make sure benefits are paid into an account which allows an appointee to access (appointee is different to deputy but allows responsibility/ management of benefits). When your mum passes it will make things easier if you are already appointee. This also keeps a good record of her disability related spending.

We are applying for deputyship. I've seen in many parent groups that health and welfare is difficult to get as services should be cooperating with family and all acting in best interests- we all know this doesn't happen as the norm.

Something i've not seen mentioned already is that if/when your sister gets a social care package the LA will take the majority of her benefits for this. Start making a list/ look up what your LA class as disability related expendature and the amounts so you can evidence these eg more gas due to heating on more, pads/nappies, chewlry, special equipment. She/ you will be able to keep some of the benefits to pay for these.

We worry that when we die if he is still living with us he will not only lose us but his full life will be turned upside down. We hope to have him settled before this happens so the amount of change/ impact is reduced. It also means we get a say in the provision and how it looks.