Anxieties about the future: taking over my brother's care.

Hello to anybody who takes the time to read this, and thank you in advance to anybody who considers responding. I would greatly appreciate some insight Smile

I'm 23, and my brother is 22. He has low functioning Autism, and is non-verbal. My parents are his main carers (49 and 51 years of age). They're fantastic with him. They've raised him to be a mild, playful, sociable and calm young man. Respectively, I partake in more of his care the older I get.

Lately, due to certain developments in the family, I've been worried about the next 10-20 years or so. I know that even 10 years can bring huge changes - employment, housing, relationships, a possible family of my own etc. I also know that my brother's needs and tastes will be subject to some changes and some "slowing down" as he ages (i.e. we're not getting any younger!). Even so, sometimes, I feel like I shouldn't be planning too far ahead with my life. I feel like my life will eventually need to be a devoted safety net to his needs, and I sometimes feel guilty for wanting to press ahead with so much personal ambition in my own direction. I don't believe my parents have encouraged me in my education to university level, and to pursue my career, only to drop it all and become a full time carer one day. And frankly, I wouldn't want to after so much self investment. Of course I'm willing to make compromises. I always want to be in my brother's life. I just fail to see how this is possible if I have my own 'full time' life and career; especially as it is likely I would NOT choose to have any respite care provisions for him (I don't disagree with respite outright, it's just not something my parents have ever wanted for him, and I respect this).

I know this is something which would be a highly appropriate family discussion. However, my dad isn't one for talking. My mum is what we affectionately deem as "old school", in that she'd simply tell me to be young, have a life, and not worry (which is easier said than done). I'm not an only child. I have a twin brother, but despite him having a very responsible job looking after vulnerable adults, and being fully aware of our home life, he can be fairly oblivious and selfish in his life sometimes (ironic, I know). He's known for being unreliable in family matters. This aside, he also works very long and antisocial hours, and I hardly get to speak to him.

I feel lost. The impact of this unavoidable outcome seems to be developing a wider black hole in my mind day after day now. I'm not asking for a timeline, because I know life doesn't work like that. I suppose I'm just looking for some sort of similar story, kindred spirit, or something to anchor me back down to earth, if at all possible.

Could somebody please offer me some perspective(s)?

Parents
  • Hi Sia,

    When I read your post I was happy to know someone else feels the same as I do but also saddened by that at the same time.

    I'm 25 and my low-functioning autistic brother is 19. Like you our parents have been right with him his whole life and he's lucky to be part of such a caring family.  However I also worry about the future a great amount and know that a few years makes a big difference. I also have another sibling who is our older sister, but like your twin brother she is more self involved than I am in terms of our brother, and I don't think there's anything wrong with that  but I'm fully aware that it is something I consider more than she does.

    I think it's safe to say that I worry about him on a daily basis, like it is always in the back of my mind and like you I feel a certain guilt that I want to get on with my own life but also want to be there for him. I am engaged and soon to move in with my fiancé and start a new chapter. 

    My brother is quite severely autistic, he flaps his hands and hums a lot. He is easily agitated and can be very very awkward, which is sometimes comical but draining at times. He is not one of these autistic people who could live on their own and get by as an adult, sadly he requires full time care and always will do. So I know that one day I will be regularly visiting a home of some kind... Or maybe I will be his carer and he lives with my future family and I? I really don't know. My parents are all for me doing well in life, so I guess we differ there, but I wonder if your parents do wish you all the best on our own journey and maybe you are seeing it differently because of your worries. 

    I guess as time goes on there will be more and more help for adults with low-functioning autism. As isn't it becoming more common? But I have to say I'm right with you on this :) 

    Sorry I have been of little help, I've just spoken about my situation, but it's nice to get it out of my system. 

    I think we both need to accept that we must get on with our lives and make the most of what we have, but always have our brothers best interests and to love them dearly :) 

Reply
  • Hi Sia,

    When I read your post I was happy to know someone else feels the same as I do but also saddened by that at the same time.

    I'm 25 and my low-functioning autistic brother is 19. Like you our parents have been right with him his whole life and he's lucky to be part of such a caring family.  However I also worry about the future a great amount and know that a few years makes a big difference. I also have another sibling who is our older sister, but like your twin brother she is more self involved than I am in terms of our brother, and I don't think there's anything wrong with that  but I'm fully aware that it is something I consider more than she does.

    I think it's safe to say that I worry about him on a daily basis, like it is always in the back of my mind and like you I feel a certain guilt that I want to get on with my own life but also want to be there for him. I am engaged and soon to move in with my fiancé and start a new chapter. 

    My brother is quite severely autistic, he flaps his hands and hums a lot. He is easily agitated and can be very very awkward, which is sometimes comical but draining at times. He is not one of these autistic people who could live on their own and get by as an adult, sadly he requires full time care and always will do. So I know that one day I will be regularly visiting a home of some kind... Or maybe I will be his carer and he lives with my future family and I? I really don't know. My parents are all for me doing well in life, so I guess we differ there, but I wonder if your parents do wish you all the best on our own journey and maybe you are seeing it differently because of your worries. 

    I guess as time goes on there will be more and more help for adults with low-functioning autism. As isn't it becoming more common? But I have to say I'm right with you on this :) 

    Sorry I have been of little help, I've just spoken about my situation, but it's nice to get it out of my system. 

    I think we both need to accept that we must get on with our lives and make the most of what we have, but always have our brothers best interests and to love them dearly :) 

Children
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