Disabled sibling/ dead parents

[Eggomobile]

I've nc for this as it's very outing...

What do you genuinely think you would do (not what you'd like to think you'd do) in the situation that a disabled sibling is left without either parent to care for them.

Siblings are all 30's/40's with their own families (except disabled sibling), all working and no one with a spare room. Disabled sibling cannot be left on their own, has a mental age of 8, and has epileptic fits most days.

I would take them in. That's what families do. The thought of shipping my disabled brother off to a care home breaks my heart.

There is no shame in saying "no, i wont cope with this, it will disadvantage my children, we dont have the room or money"

My parents are dead, my brother disabled and in supported living afaik. I feel no guilt, though granted ive been estranged for 15 years. If i got a call tomorrow asking to take him in, i would say no without hesitation. Its simply not viable for us to do it

I guess if you took her in you would get carers allowance which could help financially as presuming you have a mortgage to pay etc, how old are you DC? I know she doesn’t want to go into a residential place but ultimately she might be happier, maybe more suited to her needs, more stimulation etc? Could she come at weekends? Between you all, I know her mums death was sudden but yes guess this should have been agreed, furthermore she could outlive you all so a plan should be put in place from now on

but I wonder if all of those suggesting institutional care are expecting the same treatment by their partners, and children should they become disabled?

If caring for me means dd or dp have to give up a job, study, move and essentially lose their freedom till i die then yes, put me in care.

I'd look into supported living and if possible a day options program with activities she would like to regularly attend in the community so she can mix with a variety of people.
You and your siblings can still have as much input as you would like and arrange regular visits. Perhaps if you were able to work out a schedule between siblings of when someone could visit her and when she may be able to visit for a day/weekend, seeing that visually on a calendar might help reassure your sister that she is not going to be left 'alone' and will still see her family.

Taking on a carer role is exhausting even for family and in a situation where there are other options that will support the loved one and encourage their own independence you shouldn't feel guilty.

I wonder if all of those suggesting institutional care are expecting the same treatment by their partners, and children should they become disabled?

I'd expect assistance in finding somewhere that suits my needs but that's about it, no way would i expect anyone to put their life on hold to care for me 24/7. I would rather continue to be as independent as possible in my own set up where it's my home and people are there to specifically help me, not family having to schedule around me and the things i can and cant do.

My aunt is in a care home and has been since my DGM died 10 years ago. She is happy there. She has friends, activities, nice surroundings. Before that, my DGM was elderly and they basically sat in the living room for days on end.

My DF still feels guilt sometimes but the burden of full time plus care for an adult would have crippled him and my mum. Not to mention that the adult will require more and more care as they and siblings age and are less and less able to provide it.

I wouldn't dream of expecting my sister to sacrifice her life, finances, physical and mental health to care for me 24 hrs a day, 7 days a week for 30 or more years.

I don’t know what condition your relative has but if it is something like down syndrome they general do very well in supported living arrangements.

Don't feel guilty, taking on full time care of an adult is a massive commitment, and speaking from experience, whilst family members will loudly tell you about all of the support they are going to give you, that will naturally drop off and you'll be on your own.

The only other thing I would look at is that if there is any sort of inheritance, I would probably look at everyone chipping in some or all of theirs, depending on the amounts of course, into a trust account to cover additional expenses for your sibling throughout their life. This is probably the only time I would ever advocate for one sibling getting a larger inheritance than others.

I'm a bit late to commenting but deal with this kind of circumstance fairly regularly as part of my job. It's important to remember 2 things;

1. There is no obligation to take in a sibling
2. If you did decide to offer your home to your sibling, it doesn't instantly mean having to give up work etc.

Your sibling should be allocated a social worker due to her support needs. It is really important for everyone to have open and honest conversations with each other to achieve the best possible outcome all round.

Taking on a caring role, whilst a huge responsibility does not instantly mean give up your life and be available 24/7. Any good social worker will work with you to develop a package of support (PA/ home care/ activities/ day centre/ respite etc.) to meet your siblings needs, and your own support needs as a caree without there being a significant detrimental impact on your daily life.

Giving up work is not and should not be an expectation.

Remember that with a mental age of 8, her own wishes will, like other 8 year olds, not be based on a full understanding of the options. She may say she'd rather be with family but she doesn't understand the consequences of that.

If there are significant assets from the deceased parents the siblings could agree among themselves to direct the majority of these assets to one sibling who then buys a bigger house with room for the disabled sibling and is compensated for the financial hit of reducing their work hours. However that would often not be the best solution, and a supported living environment would often make much more sense all round.

If there was a guarantee that family members equally shared a responsibility moving in might work but that isn't usually the case, it's usually the elder female who takes on the majority of the support. And say something happened to her or her DH, or they separated. In the end supported living for life in a good home sounds best.

I will be in this situation in the near future I think. My disabled sister lives with my father who is 93 and in very poor health. No provision has been made for DSis and my father's expectation is that I will become carer and sort everything so that she can stay in their house with me looking after her for the rest of my life. I've spoken to SS many times but nothing will be put in place until our father dies. I've told my father many times over the years that I am not going to become mother to my sister, but this is ignored.

If your sibling is used to living in a family home then look at shared lives rather than supported living or residential sharedlivesplus.org.uk it’s not appropriate for everyone, but if it is can work really well and be much kinder than institutional care. (I say that as someone who works in institutional care).

Supported living can be fab (my son has his own home & 24 hour 2:1 care 5 minutes from my house) but he has that because it’s the only way to keep him out of a hugely expensive hospital placement - most set ups are not like that because they are expensive & with austerity are getting worse (ie so called Supported living with 20 flats and no choice of care provider - rubbish care). Good Supported living is brilliant but there is a lot of dross out there. Please don’t assume that any old Supported living place can give a better life then a family home - done well it can but done badly (& there is a lot of bad stuff) it doesn’t.

It must also be a huge shock to your sibling to have lost home & parents - a huge change will be difficult right now so any consistency while sorting out a long term package will be helpful. If they aren’t already involved you need to get the Community Learning Disability Team involved to help provide support for your sibling & sort out what is going to happen.

Btw - because terminology is important - ‘Supported living in a good home’ doesn’t make sense. Supported living should be in your own home - either one where you own it or more often have a tendency. ‘Supported living in a good home’ is residential - which is a very different existence.

If your sibling doesn’t have capacity & no-one has deputyship you enter the world of best interest decisions and to be blunt that can be a nightmare in terms of getting the family voice heard (& choosing providers). I really would check out shared lives first - depending on support needs it can work well & you wouldn’t have to battle SS for it as it is cheap!

She has cerebral palsy and from that suffers with mobility issues, although she can walk short distances. Epilepsy and has almost daily fits, often more than one a day if she’s stressed or hormonal. She has emotional and behavioural issues and learning difficulties.

Nothing has ever been discussed with me because I’m only a half sister, the “baby” of the family and my mum and dad got divorced too when I was very little. It has probably been discussed amongst her full siblings and her parents. Maybe they are following through with what was agreed, I will certainly be asking the question now.

I can’t imagine there will be any inheritance for her I’m afraid.

Thank you to everyone who has reassured me we are doing the right thing.

Remember that with a mental age of 8, her own wishes will, like other 8 year olds, not be based on a full understanding of the options. She may say she'd rather be with family but she doesn't understand the consequences of that.

Whether or not someone's disabilities impact their cognitive understanding, they still have every right to their views and wishes to be taken into account in the decision making process. They should not be discounted or ignored because they different to your neurotypical person's thought process.

As adults we may make unwise decisions but that doesn't mean that we lack the capacity to make those decisions.

Independent advocacy can be used really effectively to understand someone's views and wishes, and support them to be heard within the wider context and decision making process.

What a hard situation. Be kind to yourself are you fearing that other people will judge you if you mention your sibling is in a care home? 99% of people will not judge you badly for this, and really the 1% that do probably have never been in this situation so who are they to judge.

You never know your sibling may be very happy once settled.

I will be in this situation at some point later in life . I absolutely will not expect my dd to care for ds . She will hopefully have her own life and he would be a burden . Just because she is his sister doesn't mean he is her responsibility.
Please don't make them feel bad that they don't want to / can't care for him .

The most supportive thing you can all do for your sibling is help them access long term suitable accommodation. This is likely to be an assisted living facility. They have been subjected to a lot of loss, upset and uncertainty in the last year and they need be safe and supported.

You can the support your sibling in many ways both with settling in and longer term. Things like going shopping, to the cinema, inviting them round for a family meal are all important things.

Look after yourself and know your limitations then you will be best placed to offer ongoing support to your sibling. Don't forget you and your siblings have also faced bereavement recently.

Eggomobile - with the needs you describe she will probably be pushed towards residential because it will be the easiest way to provide what she needs. Without accommodation the options are limited (my son just spent 16 months in hospital 370 miles from home because there was no accommmodation). Some residential homes are good and some can provide reasonably personalised care although to have any chance of that there would been to be 1:1 assigned hours.

I agree with wunderlust an advocate would be a great help, particularly because there will likely be a lot of best interest meetings/decisions and her voice needs to be heard in those.

My father took in my stepmother’s sister when he was 60, she has Down’s syndrome and later dementia. He felt it was the best thing for her, which it probably was, but as a result he barely knows his grandchildren (my children) as he’s tied to caring for her and with her deteriorating health can no longer visit. We visit sometimes but too far for me to drive on my own (5 hours).

It’s wrecked his health and stolen his twilight years, by the time she dies he’ll be late 70s and his health already isn’t the best.

Yes it may have been the best for her but a good choice of home may have been a close second place, and improved the life of many others affected by the decision.

"Any good social worker will work with you to develop a package of support (PA/ home care/ activities/ day centre/ respite etc.) to meet your siblings need"

True in theory ....
But the buck stops with you.
Carer sick? You take over.
Epilepsy lands person in hospital? Your call to drop work and go.
Have carers only at set hours or take the budget and become the employer recruiter organizer so you can deal and organize hpurs and carers.
If you take on the caring role you unlikely to get 24 7 support.

My d's with complex needs is now in supported living. It s a huge difference to being the full time carer even with plenty of support .

And being family means supporting them to have a good independent life in a set up which has longevity not necessarily becoming a full time carer to them