I have been thinking more and more about the future and I have been thinking about my family. I love them and I help do a lot for them as they do me. But just lately I have been thinking more about myself and the fact that I might want the chance to have a relationship or even go onto have a family but then I come back to the fact that I will inevitably be the carer for my autistic brother in later life and I feel as though I won’t get to have the chances that a lot of people have. I feel guilty for feeling like this but when I have been looking this up I realise that others feel like this as well and I shouldn’t feel guilty at all but I can’t help but feel that if I try to do anything else I would be abandoning them and I don’t quite know what to do or what to feel. I just wanted to talk to someone else as I can’t face talking to family about the matter just yet.
I know a lot of other people go through this as well and I have read lots of stories where most people just accept their lot in life but I cant help but feel that I would like the chance in the future to do something more than I am now.
I know that he isn’t thrilled about leaving us and I know I might find it difficult to go about the topic of assisted living or independencey and I’m not sure what to do.
How do I go about talking about my life and the direction of it in the future?
If you’re the sort of person that cares then your future partner is very lucky.
I don’t really have any expertise in this area, but I’m online at the moment. You can’t be expected to sacrifice you own life because of the care needs of your brother. You are not legally required to take on the role of carer. Why do you feel this is something you will be doing - is it because you believe other people think you should or because morally you feel it is the right thing to do?
You can have your own life and still support your brother. And sometimes having a relationship means you have someone else to help you. I’m not sure from your post how old you are at present, or how old your parents are but I think rather than thinking you might want the chance for a relationship decide that you have the chance to have a relationship. This is something you do really need to talk about with your immediate family, before the time comes that decisions need to be made. Is there someone who could advocate for you in that conversation if you don’t feel confident facing it alone?
You might find help from the National Autistic Society (https://www.autism.org.uk/) and Sibs (https://www.sibs.org.uk/).
There are many versions of being a carer. It doesn’t necessarily mean you being a servant 24/7. At the other end of the scale is the “care manager” who overseesthe care and and finances etc but does little hands on.
I suggest you look at positioning yourself towards the latter by starting steps now to get your brother into some sort of supported living. If he wants to stay in the same property that might mean outside carers coming in or him going to outside activities.
It will to as time to arrange and get him used to, but I think you will feel better to know that the majority of your life can be your own, but you can still look after your brother some of the time in a different way.
What care arrangements are in place currently?
Thanks for replying everyone.
Just a bit more background: I am still currently living at home (in my 20s) with my mother and brother and I’m essentially a help to them both. I think it has just always been assumed that I would stay and care fir my brother in the long run and he seems prefer being with thin a family unit for care.
I have always thought about the idea of a relationship and possibly even a family of my own to care for but then I think back to the fact that I will most likely be the long term carer for the whole. I have never really discussed my feelings on this as I don’t feel comfortable about it and it is just the status quo at the moment. I don’t know how to go about it but I know I want the chance to do something more.
There’s another thread on this forum about shared lives you might want to read