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Original poster

Disabled sibling/ dead parents

76 replies

Eggomobile · 02/02/2019 23:24

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.

OP posts:

HollowTalk · 02/02/2019 23:25

Is sheltered accommodation with regular visits from siblings a possibility?

Original poster

Eggomobile · 02/02/2019 23:28

Yes that’s what we are currently considering but it feels so wrong and disabled sibling doesn’t want to go. But I’m not sure there is an alternative...

OP posts:

zzzzz · 02/02/2019 23:29

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Message withdrawn at poster's request.

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Families

cestlavielife · 02/02/2019 23:30

Supported living or care home.
Siblings can visit and have the sibling visit.
Just like other siblings.
Disabled sibling may thrive in a good placement.

cestlavielife · 02/02/2019 23:32

It s much better to have the disabled adult settled in supported living or care home long before the parents die.
Look at good practice like dimensions care etc

JiltedJohnsJulie · 02/02/2019 23:32

So sorry that you are going thorough bereavement.

What plans did the parents put in place?

cestlavielife · 02/02/2019 23:35

www.dimensions-uk.org/what-we-do/full-time-support/
As an example
Siblings can be involved without taking on 24/7 care and all that entails.

Didiusfalco · 02/02/2019 23:38

Supported living. It’s not a horrible thing to do to someone and you mustn’t feel guilty. It could give the sibling independence they wouldn’t otherwise have.

Original poster

Eggomobile · 02/02/2019 23:39

Tbh I’m a half sister. My sister lived with our dad her whole life until he had a stroke (and later died). She moved in with her mum and her death last week was very unexpected.

Her full siblings are taking the lead with everything and arranging the home and I’m not really involived in any of the discussions but I can’t help but feel we should be taking her in.

OP posts:

junebirthdaygirl · 02/02/2019 23:40

Know 2 families in this situation. Sibling is in a care home in a cheerful, free moving sort of place so not a typical institution as we would have seen in the past. Both go to various siblings for Christmas, holidays and family occasions. They also visit regularly and are on hand for any medical emergencies etc. Works very well.

HollowTalk · 02/02/2019 23:43

I don't think any of you should feel guilty. If you visit frequently and if she spends important times with family, then she'll be fine. She'll make friends and get into a routine and will enjoy it there. If she was at home then someone would have to spend all their time with her and that would lead to resentment. As it is you could each have her for tea once a week and take it in turns to go shopping or to the cinema with her at the weekend and nobody will be resentful.

zzzzz · 02/02/2019 23:49

This reply has been deleted

Message withdrawn at poster's request.

Iloveacurry · 02/02/2019 23:52

You shouldn’t feel guilty, at the end of the day, it’s a difficult one ... I assume all siblings have their own families with young children. Life is sometimes difficult enough for most people. I certainly wouldn’t be in a position to help if it was me. They need to go into a care home, leave the siblings to sort it out, and you can visit, have them over for the day.

RavenWings · 02/02/2019 23:52

Well, you never asked to be born and it's unreasonable to expect you to be a permanent carer for a disabled sibling. Not saying that that's what is expected at all, but us siblings can feel beholden and it's important to dispel that - your first responsibility is to yourself. You need to look carefully at whether or not you could care for them. If not, there's no shame in it.

In many ways the supported living could be wonderful for your sibling and would give them great independence, as well as possible levels of care you couldn't provide. It's not like you're chaining them to a wall in a basement. Relationships can definitely be kept up.

In any case, I don't think you can dictate that the others need to take care of their sibling. If you want to do it yourself, fire ahead. But if they've worked out a healthy plan for all, you can't really overrule them and expect them all to take a hand in personally caring for your sibling.

Rachelsholiday · 02/02/2019 23:53

My DHs aunt his Mum's sister lives on sheltered accomodation. We visit and so does her sister.

She is happy lives a full life she can't read or write but she can get herself dressed and had friends. 8 is probably her age for some things 14 for others she has no concept of time so cooking has to be supervised. She has a better life than she would living with us out at the work all day as the flat she's on has a shared lounge and she can socialise.

Don't think her living with a sibling is automatically the best approach look at alternatives.

LoafEater · 02/02/2019 23:57

My brother (who has profound and multiple disabilities) carried on living with my Dad after our mum died, and it was very difficult as my Dad did not cope very well. It was an enormous strain on me for 8 years as I was raising my own small kids, running a business and working part-time. When our dad got sick, my brother moved to a residential home for a while until a flat became available in a supported living unit.

He now has a very settled, happy and fulfilling life with a great social life and is well cared for. I see him every week and take care of his finances and advocate for him.

That's all my parent sever asked of me, that I be his support and his friend.

I love my brother, but he is not my child and I could not live the hard life my mother did for him.

I don't feel guilty or sad about it and nor should you or your siblings. It should be your job to help your adult sister have a happy, independent life, not to become thier carer.

Yabbers · 03/02/2019 00:01

I can’t help but feel we should be taking her in.

Have you offered?

If the siblings are looking at SA, it’s likely this was agreed a long time ago. You can’t blame the siblings for making this choice, being a full time carer for a sibling isn’t something everyone is capable of doing.

Having to move someone who doesn’t want to go, into a facility for care is difficult, but unfortunately it has to happen sometimes.

cestlavielife · 03/02/2019 00:02

Taking in an adult requiring 24 7 care is not easy.
If you do ...you would then have to fight for respite and support.
If the adult is in care home or supported living you can fit in visits and have them with you when you can.
Structure of a care home or supported living may be better all round. And better for the adult with disabilities.
Why do you think you or sibling should take on the role?
Have you or siblings been very involved to date? E.g. having the sibling to stay over ? Taking care of sibling for a whole day? Do you/siblings have epilepsy training and experience of caring for them overnight? If yes then they they will know how feasible...if no then it s huge ask. A care home or supported living with trained carers may be better day to day...you and siblings can visit and be involved as much as you can or want to.

Original poster

Eggomobile · 03/02/2019 00:12

No I haven’t offered to take her in because my situation doesn’t permit it, however, that’s part of my feeling guilty and I have been questioning if I and my sibblings are being selfish, should we be making life altering adjustments like giving up work, moving homes to take her in.

The responses on here have helped massively in reassuring me that we are doing the right thing. We just have to hope we can get her in somewhere near to us all so we can visit as often as possible.

OP posts:

cestlavielife · 03/02/2019 00:14

No you should not move homes or give up work. Why would you? Unless you were intending to anyway for other reasons.
Your sibling is entitled to receive 24 7 support of her own.

Original poster

Eggomobile · 03/02/2019 00:20

To answer why, I guess because she’s family. You do everything for your family don’t you and putting her in a home feels like we are giving up on her a bit.

I know I’m wrong, I’ve thought everything everyone has said here about her having more structure, independence, a social life etc. But I guess I’m scared of the unknown for her.

OP posts:

zzzzz · 03/02/2019 01:28

This reply has been deleted

Message withdrawn at poster's request.

Butterymuffin · 03/02/2019 01:36

So would whoever takes her in also have to give up work? Otherwise she'll be alone all day. But that of course then means financial and social deprivation for that sibling. Is that the kind of 'doing everything' you mean?

She will have a better life in a supported living place. Honestly. And you will all be better siblings to her in that situation, too.

SnappedandFartedagain · 03/02/2019 01:40

I have a severely disabled child requiring 24/7 care and when I die there is no way on earth I want my other children to feel obliged to take him in and sacrifice their freedom, financial security and happiness like I have had to. I would be very grateful if they did visit him regularly and give him care and attention though.

It’s all sorted in my will and I’ve made financial provision for him to hopefully avoid any issues when the time comes.

zzzzz · 03/02/2019 01:41

This reply has been deleted

Message withdrawn at poster's request.

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