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Worries for the future

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berlingirl
berlingirl Community member Posts: 2 Listener
in Autism and neurodiversity
Hi. I am the Mum to a beautiful daughter who turns 26 today. She has Asperger's and still lives at home with me and her Dad. She is very dependent and struggles a lot with most things. I have multiple chronic health problems and am almost completely housebound. My husband works extremely long hours. (He is working from home due to the pandemic but normally he is out of the house from about 8am to 7pm - sometimes later). 
My big fear is what will happen to my daughter when my husband and I are no longer around. She has a sister who lives with her boyfriend, but she has a lot of mental health problems and I don't think she would necessarily be able to cope with sorting things out/looking after her.
I have this huge worry constantly hanging over my head about what will happen and how she will cope. We don't have friends nearby and our friends are our age anyway. Forming friendships has always been a problem - people are put off by all my problems and the autism! My husband has good work colleagues but he doesn't work very locally.
I just wanted to get this off my chest really - hopefully it won't be a problem that needs to be dealt with for another 20 years or more!
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  • Geoark
    Geoark Community member Posts: 1,464 Disability Gamechanger
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    Hi @berlingirl and welcome to the community.

    First of all, you are not alone; this is a common fear for many parents of grown-up children with special needs and disabilities. 

    I do have a potential suggestion, one which you may not like. From your description, your daughter will, at some point need to go into some kind of supported/independent living. A transition that she is likely to find difficult. It is a decision which can be left until it has to happen, but do you want to leave it until she has little or no family support?

    I am not suggesting this needs to be done now, and suspect you may not be ready yet to make such a decision. But it could be worth starting to look around for what options there are for your daughter, and more importantly, chat with parents whose adult children have gone into such schemes. If nothing else it may help to relieve some of your worry about what happens next.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi @berlingirl Welcome to the community great to have you on board.

    I can imagine what a worry this must be for you and think the advice @Geoark has given you is a good idea.

    You would feel more at ease if you could find out what support would be available while you are around to support your daughter. You may want to speak to your GP to signpost you to organisations that can help or maybe adult social services    
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  • berlingirl
    berlingirl Community member Posts: 2 Listener
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    Thanks for the comments. We have tried a few times with about 3 different services/places over the last 4-5 years - different things but the biggest was building up to spending time overnight with a lady for respite care, as much for us as for Ellie. She has completely rejected everything. It doesn't help that she has severe anxiety (which she is on medication for).
    We have also discussed my concerns with our GP so they are aware of the situation but they didn't suggest anything. I think the things we have already tried might be all that's available locally.
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