I’m 24 this year and I’m still currently living at home with my mum and autistic brother. I am a carer to him and obviously support my mum. We were evicted from our property last year and now in a new property altogether. I feel that because I never expressed a thought about moving out and I feel that it is just a fact now that I will stay at home and eventually look after my brother full time.
I don’t know how to go about talking about the idea of wanting to start my life off and maybe even going for a relationship and a family at some point. I wouldn’t just go right away but I’d like to know that I might have the opportunity to do something more.
My brother has spoken on and off about how I’m his carer and that we might be living together and I have never really approached the topic because I don’t know what to say or do or feel really. I love my family but I’d also like to express that I might want to have my own life at some point where I still can.
What possibilities are there? Shared living with my brother and a potential partner, more independent living for him, etc. I know he wants someone he knows and likes which is understandable but I want to know that I might be able to have a life more for myself at some point which sounds a bit selfish but it is something I have been thinking about more and more lately.
Every day you don’t do anything about this will make it more difficult to extricate yourself.
It’s so important that your brother has a life of his own, ready for the day when he might be without family left. I know this is difficult to think about, but as the mum of someone with LD I know that pretending I will live forever is NOT an option!
Tell us more about how your brother spends each day at the moment. What activities have Social Services arranged for him?
Does he go to day services, or do any college courses?
Well at the moment he will occasionally go to a little cafe by himself a few times a week. A small club every Monday for people with disabilities and that’s about it really. There isn’t any involvement by social services, doctors or careers. I think my mother prefers it to be a family unit thing.
I know I need to step forward and talk about it but I feel quite anxious and because I’ve never mentioned this sort of thing before it would come as a bit of a shock I think.
Look at a different way. Your brother is able to safely walk/travel to a café on his own, engage with familiar staff, choose and purchase what he wants, take it to a table and sit down. He can drink without prompts and return home safely. He prefers smaller/less busy places.
He definitely doesn’t need a keeper/carer, he needs people who can help him become more independent, gain confidence and realise how capable he is.
It is difficult for many people with autism to imagine what something new would be like, how they would find a new situation.
Start planting the seed at home. Get leaflets about supported living, college courses, print out information on getting a Needs Assessment and Carers Assesment; start leaving them around for your Mum and brother to look at.
Your Mum has probably lost confidence and her life has narrowed if she has purely cared for your brother all these years.
Trying to “keep it in the family” is a BIG MISTAKE. It’s really limiting your brother’s choices.
Social Services should do a Needs Assessment for him, and a Carers Assessment for mum and you.
Hi Antony, You sound like a really caring brother and son. I wish there were more young men like you around!
BUT you are entitled to meet other people and to leave home when you want to. It’s obvious that you love your family very much but that doesn’t mean that you have to give up your freedom in order to look after them. Your brother is not your responsibility - you didn’t bring him into the world. When you want to go - please do so otherwise you could regret it for the rest of your life.