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 !!

I am sure you and your mum will be able to take steps to prevent this OP.

First and foremost your mum should make a will in which her wishes are clearly spelled out. It need not cost that much and would put your mind at rest. Any decent solicitor will have lawyers who have experience in this area.

I'm assuming that your good sister doesn't have full mental capacity to express her own wishes, but if that's not the case then her wishes would certainly take precedence over hopeless sister.

I would hope that the system works to ensure that vulnerable adults are not left at the mercy of family carers like hopeless sister, she must have notes and warnings in various records that she would not be a fit and proper person to look after a vulnerable adult, but I'm afraid this can not necessarily be taken for granted.

Find out first about your mum making a will and take it from there.

You haven't mentioned your ability/willingness to look after your sister? Your DM can put her wishes in her will?

Can you be made your sisters LPA for both health and finances?
You can do that now

Only if her sister has the mental capacity to make a lasting power of attorney.

If she doesn't have capacity then OP could discuss with wider family to apply for financial deputyship if no one has it already.

OPs mum can't 'will' an adult to someone else to look after. If OPs sister has social care needs that require care then she will be subject to a Care Act Assessment and depending on her capacity/wishes and those of significant others adult social care will make a decision/support with making care arrangements.

If OPs mum is concerned she can ask for a Care Act Assessment now and start making some early plans about what care for her daughter will look like in the future.

Does your disabled sister have capacity to make decisions regarding her own care?

Sorry I should have said I am more than happy to look after my sister, the last thing I’d want is her to have to go onto a home or something.

She doesn’t have capacity to make her own decisions no, she has learning disabilities and is also autistic. She cannot bathe herself, make herself food, go out alone etc

There is no social care involvement, she is nearly 40 so they stopped caring a long time ago!

Sorry, I don't understand? Adult social care is for anyone over the age of 18. If nothing else a carers assessment/ care act assessesment can support with putting contingency plans and respite support in place.

It's not just about putting someone in a home?

@velocity123

I am no expert so I suggest you take proper legal advice.
However, unless your mum gets hit by a bus, I would think that this will become an issue long before your mum actually passes.
This is about the safety and long term interests of your sister.
You elder sister doesnt get 'first dibs' because she is the eldest.
Im sure there are lots of options available to your mum but she needs professional advice.
Good luck

As someone with a disabled sibling over the age of 40 who has been cared for in a living home environment, I can confirm that social services are happy to leave you to it. You might get a letter every 5-10 years or so before you are moved to the bottom of the pile again.

Op, I would go with your mum to the GP and have you on record as someone they can talk to about medical concerns. This will allow you to be involved in any medical care plans.

It would also be good for your mum to document your sister's wishes around where she would like to live and have these drawn up by a solicitor.

I would put plans in place for the transition without your other sisters input. She can be be told firmly what the plans are when they need to be actioned. Until then keep away from the subject or gently advocate for your sister.

I can assure you there is absolutely no adult social care involvement with my sister, my mum takes her to the gp every so often etc but that’s it as far as professionals involved, she even had her reassessed a few years ago due to behavioural issues and all they cared about was whether she was hearing voices 🤔

This is great advice, thank you.
It’s going to be hard enough for my sister when my mum does pass and not understanding where she has gone etc so I just want to make sure it can go as smoothly as possible for her, mum has asked her if she’d like to stay with her older sister before (just more out of curiosity as to what she would say) and while she doesn’t really understand properly she did actually say no.

Thank you. I think that’s how she sees it to be honest, like it’s a given, but she can’t run her own life let alone looking after my sister who also comes with her own set of problems, she’s just not the right person for it, maybe a few years ago before she became an alcoholic but not now, she isn’t the same person she was. I think she just sees a brand new car and hundreds of pounds in the bank each month

A close family friend had a similar family set up. Her parents lived until they were nearly 90 but didn't really plan for their disabled (learning difficulties and probable autism rather than physical) daughter's care after their deaths. They just assumed the youngest adult daughter (our friend) would step in and live with her when the time came. By then her own health would not allow it (she was in her 60s ). The parents deaths caused a huge sudden major life adjustment for the sister at the same time as everyone was grieving. Our family friend wished her parents had moved her sister into the assisted living facility in a more gradual way while they were still around to help the transition..

There were some very difficult months making the adjustments and then very sadly our friend died suddenly shortly after her parents leaving the sister very unsupported. It was very sad.

I know there is never an ideal solution (and accessing the right supported living is a battle) but you are doing the right thing thinking ahead. I wish you all the best.

Just want to check what country you are in? I can chip in to discussion if Scotland, our process is different to other parts of the UK.

Oh isn’t that awful, how tragic all around.

Yes we are trying to plan ahead, it’s not a nice conversation to have but we do need to face up to it and have a plan in place. I think what I’ll do is go to my mums and sisters gp with them, explain what we want to happen when the time comes and hopefully they can refer us to the right people ?

Hi, we’re in England

Over 40’s would be cared for

My friend was in a similar situation with her brother - he lives in his mums house now but has a PA.

A patient I visit has Down’s syndrome and dementia as moderate learning disabilities and lives in her own flat and has a PA during the day to help her

Neither are considered to have capacity

Could this be an option?

I think they would need a social worker - when your mum does go then your sister will definitely require one. You can self refer

How does the flat work ? Do they have daily visits several times a day ?
My sister cannot make herself food, wash, anything a neurotypical person can do basically ! She would sit and watch movies all day 😆 her special interest !

The PA stays all day - ensures she gets dressed, has a wash with help, changes her pull up (she often sets herself), makes sure eats meals (they make them together) and takes her medications, goes to her social clubs, hair dressers, medical appointments and gives her a daily allowance so she doesn’t spend all her money on bingo and new watches (she loves watches)

Your sister will probably be eligible for support in a supported living environment. It is important to have plans to move to independent living now rather than wait for an emergency situation.

You need to contact social services. No need to ask GP.

I definitely think a joint visit to your sister’s GP for a physical check up would be very worthwhile. I’d ask for a double appointment. Ask about you both being the main contacts for your sister. Refer to your elder sister as an alcoholic so that it’s on the record. Ask about a care needs assessment/supported living options. If you all do decide that aiming for supported living is the right approach, it’s likely to take years to set up, but it would mean that as and when your mum becomes more frail and eventually dies, your younger sister will be in a familiar setting with people she knows. It probably isn’t the only option, and I don’t want to sound as if I think it would be easy to get, but it might be a possibility.

If you wish to be your sister carer I would start now. Create an arrangement between you and your mum where you provide respite (how every often you feel suitable) This can be done officially through social services or you could have a private arrangement but document it too. Increase it gradually over the years so your sister becomes use to you being involved in her care. Attend appointments with her too. As your mum gets older and needs more support gradually move your sister in with you and make you her carer while your mum is still alive. ( this is assuming your mum lives to old age) If there’s any paperwork/doctors etc change it over to your name. Your mums will should also stipulate you as named guardian.

This should make things clearer when the time come .