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Looking for others with a sibling in residential care

Jennybea

Hello everyone, my name is Jenny. I do not have any disabilities myself but my sister does. She has recently moved into residential care, and while she is flowering I am finding it exceptionally difficult to adjust. Are there any other siblings out there? It would be lovely to get some support.

Many thanks Jenny

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JennysDad

Hello Jenny @Jennybea and a warm welcome to the community. I'm not sure , but it appears to me that this post first arrived in the 'welcomes and introductions' thread earlier today and has subsequently been moved to Parents &Carers? And I've seen an appeal, in effect, from Scope, reaching out to siblings, which might be connected.
I very much hope we find somebody for you (and I suspect we will

), but I wonder if how your feeling relates at all to how I felt when I lost my daughter a long time ago? Until her death, her mother and I had 'lived' for our Jenny (coincidence!), spent our time at hospitals or special units learning to do things for her and trying to get resources for her, whilst our 'social life' was entirely comprised of interactions with friends who were also parents of disabled children, with their children, with doctors, nurses, social workers and all the rest. So that when we lost her, everything disappeared. It was weird, strange and disorientating.
Just wondering if what you're going through is anything like that? If not, ignore my message

but, if it is, we might be able to share some experiences.
Warmest best wishes to you,
Richard

Jennybea

Hello Richard, thank you for reaching out. I am sorry to hear of your loss, I can’t imagine how hard that must have been. Yes to some degree, my parents feel that same disorientation. Although my sis is still here. I think it is the lack of control that bothers them the most. For me it is the guilt of the well one and not having the resources to have her live with me. That said I don’t think she’d want to! She is happy so I am trying (failing) to focus on that. Small steps I guess. @JennysDad

JennysDad

Hello @Jennybea and thank you for getting back to me. I would be very glad to be of any kind of help.
When my Jenny was alive it took us some time to realize that whilst she was a 'disabled child' we were, in fact, a 'disabled family'. Her life meant that our life could never be quite the same as those of most other people.
Attempting to meet her needs inevitably meant that we needed to ignore our own, and everything was indeed about control and planning, from managing her medications and feeding to keeping her clean and physically healthy, to ensuring that the medics did not succeed (they tried more than once) in giving her the wrong medication, to coping with the results when we had a rare brief respite that meant leaving her in the hands of well-meaning others who simply could not follow the routines she (and we) needed.
It was damned hard work, often endless. Doing, watching, observing, checking, investigating, managing. That list is probably too short.
Your mum and dad have 'done their bit', I would guess, at enormous cost to themselves - in terms of rest and relaxation at least - and it must also have been at some considerable cost to you. I've seen many siblings of the disabled pushed - unwillingly and unwittingly on the part of the parents - into the background because of a disabled child. Disabled children create their own priorities and we have to meet them just to get by.
Rather amazingly - or perhaps not - siblings of disabled people have always been among the best people I have ever known. I suspect you are one of them.
Nature, in our case and in the shape of medical complications, took our Jenny away, and in doing so took that entire 'disabled life' away. We could plan trips and holidays, we got to be able to sleep at night, got to learn that the 'ping' of a microwave was not the beginning of a medical alarm.
And suddenly, grotesquely, we discovered that being without her made our lives easier. If it is awful to lose a child as a parent, it is the more so to discover that that loss makes life easier for you. We'd rather have kept her and kept the strain, the labour and everything else, just to see her smile.
Some of our friends couldn't hack it. To see us was to be reminded of what their lives might be like if their own children passed. And just as the routines of time in hospital, keeping watch on the medics and nurses, welcoming the case worker and all the rest suddenly ceased, so a number of those friends backed away.
And her passing brought guilt. Had we done enough? Had we tried hard enough? Had we failed her in some way we had not recognized? And wasn't it awful that after a time we could actually begin to enjoy ourselves because she was no longer there?
Survivor guilt hits us all, but you clearly don't deserve it.
You and your parents are experiencing a loss, I think, and you will grieve, I think, very much as we did, despite that your sister is still 'there'. And the fact that she is happy means a very great deal. She has been loved, by mum and dad and by you, and you have given her all that you can and will continue to give her all that you can.
Time does heal grieving, and, yes, baby steps too. Try to hold on, now, to what is good about this, to her happiness and security, and give your parents and yourself some of that much-needed TLC that you have so willingly given your sister.
Scarcely knowing you, I am honoured to know of you.
Very warmest best wishes to you, and to your parents,
Richard