Adult siblings with SN

[MrsMuddle]

I am 40-ish, and I have a sister who is 10 years younger than me with DS. She lives in a residential unit with constant support, and comes home to my mum's once a month or so for a weekend, and at Christmas and Easter etc.

My mum's getting older now, and I'm starting to worry about the future. I feel really guilty because I don't really have a relationship with my sister. I left home when she was young, and to be brutally honest (and I've never admitted this before) the main reason I left home was that it felt like everything revolved round my sister with DS. (I was a very selfish teenager!)

There is no question of her living with my family - not because I wouldn't have her, but because she is happy, settled and as independent as she can be where she is.

My mum has always dealt with things alone, and has never involved me or my brother in any decisions that needed made. I know she has done this for the right reasons - that she doesn't want us to be "burdened". But I feel now that we should be more involved becuase if anything happened to my mum, all that knowledge would be lost. But she's fiercly protective and wants to do it all herself.

I'm waffling now - I can't put into words how I feel. I guess what I want to ask you as a sibling of an adult with SN, is how much day to day involvement do you have with your sibling, and have you got a plan for the future?

If you've got this far, thanks for reading.

A different twist in my case as my 2 younger sisters with DS are my foster sibs, C was 2 wks old and E was 8 mths old when they came to live with us.

In 2004 when mum died they were 30 and 24.

C went into a residential home and her care was badly mismanaged and lots of things were hidden from us, last year the truth started to come out and she is now in a different area and her needs are being assessed and she is becoming happier.

E is in a family placement who also have a small holding and she has florished and 2 weeks ago 'aided' alone in the birth of 2 lambs and is justifyable proud of herself.

I am involved with them both and we go out for meals and to see dad but i am not in a position of being able to have them overnight at the moment.

When i left home in 1988 i visited every month and so i was always involved in their lifes and long term planning, sadly tho the plans had to be bought forward when mum was diagnosed in mid 03 with end stage cancer.

I am invited to care reviews and have regular phone and email contact with those caring for my sisters but they have also got new interests and friends which is great.

My son is not an adult but has severe LD. We do not really involve the other kids in his care - my 17-year-old DD does 'not do' nappies, feeding etc. and my youngest is 6, though is showing signs of being more helpful and understanding than DD. I think we have never made them help out much because we want them to have as normal a childhood as possible, especially in a house that can revolve around disability. We have made sure they are not what is termed 'young carers', but if they wanted to help voluntarily, we would welcome it.

However, I would be incredibly sad to think that the kids would not keep up in some way with my son if and when he is in residential care. I have hopes that they will visit, invite him to their homes, maybe even have him home for Christmas when we can no longer do it. Certainly, the best thing they could do is keep an eye on his care to make sure he is safe and happy and speak up for him when things are not going well. At the same time, if their lives took them away from him, for instance if they want to move abroad, I would not want them to feel they are trapped.

The fact that you are worrying about your sister means you are being a good sibling. Perhaps you could decide realistically how much input you can offer when your mum can no longer help her, without turning your life upside down and make your own plan. If your mum really won't talk to you about her, could you go to the home and talk to the staff about her care so you are more prepared? Maybe MENCAP or a similar organisation can advise on financial matters and so on. It's fantastic that she is happy at her home because that is where her life is now. You can just provide the icing on the cake.

Thank you both for thoughful and thought-provoking replies.

My sister has limited verbal communication, so phone calls and written communication are both out.

I've been thinking about this since I posted, and I think the issue is that I have been a support worker for people in supported tenencies in the community, and I know the way things should be done (eg encouraging community involvement, person-centred planning etc etc) in an ideal world, with committed staff and limitless budgets!

Her place of care is very old fashioned, and I think I have made the mistake in the past of speaking to my mum about things that would be reasonable to ask for/expect to happen. This has understandably put my mum on the defensive.

I will offer to go to the next review meeting, and I will remember that my sister is happy and settled there, and that's what's important.

Thanks for your input.

It is indeed MrsMuddle

In an ideal world our SN family members would be cared for well, and in most cases that happens.

In E's case it certainly is.

In C's case it hasn't, as she has been enabled to become 60% overweight which has had devastating health implications for her, she is now in a new situation and they are involving all the right people to get her back to the healthy person she was 4 yrs ago, it is heartbreaking to see her so unhappy and i am looking forward to the next report, C is non verbal so we are unable to actually have a conversation with her, she answers questions some of the time but in much the same way a under 2yo would.

My dsis is 6 years younger than me and I suspect is autistic but was never diagnosed as such. But she is fairly independent, lives in a house with 3 other ladies with SNs and works for a broadcasting company doing cleaning work so is delighted with herself as she gets to chat with slebs!
She does have issues with some things like money but has had good support from staff who have looked after her very well. I don't think my mother has to get involved much
Actually MatNan, one issue that does trouble me is dsis's weight. Her cooking skills are fairly basic and she and the ladies she lives with are inclined to cook easy things like fatty frozen foods that only need oven-baking, in fact a bit like the kind of food my dh cooks!
Tbh, I am a bit worried about becoming responsible for her as she is very stubborn and even if I politely suggest something she thinks I'm interfering with her nice routine.

MatNan and chipmonkey, it's interesting that you both mention your relatives' weight as being a problem. That's one of the issues where my mum and I are at odds with each other.

My siser is overweight and is getting more so. It's not unhealthy food so much a portion control. She's in a "house" situation, where the food is cooked, and the people with SN and the supporters help themselves. She can also access the kitchen and eat when she wants - as indeed she should be able to.

My mum would like the support organisation to limit her portions. They won't (or can't) because she has capacity to decide how much she wants to eat. I think they should support her to do an exercise class or weightwatchers - my mum won't ask. She doesn't want to appear too demanding, I think.

Slightly different from your sister, as mine is never happier than when eating - so not affecting her happiness.

I've been looking for a thread like this for years. Not had the courage to post one - have been lurking for years too. Thanks so much.

I have a sibling (older & late 40s) with DS - severe/profound learning disability and no (or v little)language.

Roles of Parents & other siblings - when we were growing up life expectancy of DS was such that my parents believed they would outlive him. Your mother MrsMuddle may share this view. Sadly this is now unlikely to be the case and, in their 80s, have been willing for us to engage in decisions relating to his future post them.

Getting involved - it's brilliant that your sister is settled. However, funding streams, social workers, government priorities, and the person's needs all change (sometimes at very short notice) so what works now may not be possible/suitable in the very near future. There's something to be said for gently getting more involved so you know what suits her and can then argue her case when and if you need to.

Food choices and capacity - care homes get shot if they don't allow service users to use their capacity. What is a minefield though is judging whether the person has the capacity to foresee the consequences of a bad decision. We've had a real battle to get the carers to see this and with horrid health consequences for our sibling.

Does anyone know of a support group for adult siblings of SN people?

Hello justchilli, and welcome to the thread!

Your point about government priorities and funding streams is very valid. I have friends who are doing the same job, supporting the same people, but are employed by their third organisation due to local authority retendering. I have also seen people start out in supported living with a 24/7 package, then have it reduced over time - ostensibly because they become more independent and need less support, but in reality it's a funding decision.

If anything happens to my mum and my sister cannot - for whatever reason - stay where she is, should I do what my mum would have wanted (ie, safe, secure residential care) or what I know can be a better option (but often isn't).

These kind of dilemmas are what I'm worrying about, and also practical issues - my sis is looked after for 46 weeks and spends six weeks at home over the course of a year. I only have four weeks annual leave. I'd also like to live abroad when my own children leave home, but I don't feel I could leave my sister if my mum is no longer here.

Not sure if there's a support group, but I'd be very interested if there was. I'll have a google and see what I can find.

I have friend ( approaching 50) who has a slightly younger sib with DS. Friend has HAD to get more involved in decisions that affect his brother with the death of their father and the aging of their mother.
Friend has started attending review meeting with his mother, has access to some money that is held for his brother and spends it on things his brother will like but has not got ability to ask for ( like special outings or magazines). At no point will his brother come to live with him, but I understand my friend will continue to keep an eye on his brother and Do what he can from the other end of the country to make sure he is cared for and comfortable.
I do not think friend is in contact with any kind of sibs group, but hes not teh kind of chap to "do" a group.

"Tbh, I am a bit worried about becoming responsible for her as she is very stubborn and even if I politely suggest something she thinks I'm interfering with her nice routine."

Remember people with LD's have every right to make their own decisions, even if they are poor ones. This is something that can be really hard to get our heads around, but is important I think. Perhaps investigate things like cookery courses for those with LD's - or look online for some recipes (perhaps with symbols as well as words as instructions) - sort of gently push.

I have 3 children, one of whom is severely autistic and will require lifetime care. I don't expect his siblings to care for him, but I do expect them to care about him. As adults I would expect them to slowly get more involved in care reviews- if its practical for them to attend in person great,if not by email/phone with the carers. I hope they will visit their brother, but that very much depends where they live. If they can't I will encourage them to stay in touch by emailing photos to his carers/ building a website of photos for his carers to show him etc.

It's hard for you to do much if your mum wants to still be in control - and I can understand that- it is very hard to let go of a disabled child. I would ask to go along to care meetings with her and really not say very much (anything) to begin with. Just listen. Also if its possible perhaps start visiting your sister fairly regularly and just getting to know her better. Gradually hopefully your mum will trust you to start taking over more, and then is the time to start trying to make changes.

ChipMonkey C can't cook and didn't even ask for food when she first entered the group home, but it seems food was used as a bribe and she has been helped to eat the wrong types of foods.

MrsMuddles She is now unable to walk well, her spinal deformaties are now making her very sore and her ankles and shins are grossly swollen, the skin is shiny and clearly touching them is painful. She is now under a dietitian and her food is being handled sensitively and C has never had a problem with eating different to others at the table, as we as a family often ate different meal combinations.

JustChilli exactly, we are happy for C to be able to choose her own foods but from a sensible selection. She is unable to cook for herself in any independent capicity but is happy to help in the kitchen.

She also loves tasks that make use of her OCD like table setting and clearing, drying up for example and they give her a sense of accomplishment and activity rather than sitting around doing large piece jigsaws and colouring.

She loved going to the day centre gym an hour a week to do rowing, cycling, treadmill and medicine ball.

I am currently working away but i have contact and attending meetings as i can and see C & E on a spur of the moment way as i am never sure until the day before if i will be able to take them out and i refuse to say i will but that not be able to. I do speak to their carers tho to suss out good possible dates with the proviso that i will call the day before to confirm/make new possible arrangments, and both sets of carers understand that group activities come before my possible visit.

For anyone who's interested, I found a site for siblings here

Thanks MrsMuddle