Hello all, thank goodness I’ve found you.
I’m a 55yr old carer for my sister who has Autism with significant needs. I’ve been doing this for near on 20 years, since our parents passed away. They died within 18 months of each other.
It’s hard at times and really hard at others. I’ve got used to never putting myself first or looking after me and feel I only exist to care for her. I work full time and have a grown up daughter.
The one thing which really gets me down is my sister’s constant fear that something is going to happen to me. She always wants to know where I am. She never wants me to go anywhere without her for fear something bad will happen. She needs constant reassurance that everything is going to be ok. This in turn has made me not want to go anywhere and I feel guilty about even thinking of having time to myself.
I’m dealing with anxiety and depression purely caused by this situation.
Any one got a magic wand to make all this better… please.
How much support does she have from Social Services?
Plans for when you cannot care for her any longer?
Been through adult services and she’s not comfortable with anyone new going in to see her.
I know I need to get something in place regarding the future and will be talking to my daughter about it. We have a joint LPA re finance and medical for my sister.
I am looking for any tips about the fearful thoughts my sister has about me.
Has she had a Needs Assessment, and have you had a Carers Assessment? Does she never ever do anything without you? Social Services should have been supporting her since she became an adult.
Hi @Bunny28
Big hug! Welcome to the forum. Really happy to see you here.
Hi I’ve Victoria! when you get a moment check out roll Call https://forum.carersuk.org/t/roll-call-august-2024/125468?u=victoria_1806
for some friendly banter - sometimes some lighthearted nonsensical chat helps (I literally just posted a comical post because after a small tongue op I feel a little 
) (be warned some words don’t work and stop a post 
Gosh it sounds like you’ve been doing a LONG and LOT of caring for your sister over 20 years! Would you mind sharing more context - any other family, friends, neighbours, connections, Autism support groups/community or friends??
I’m only asking because from what you’ve shared it seems like you’re all alone and my first thought is that if you’ve reached out to us, perhaps it’s time to reach out to others locally too. It may feel weird, scary, or a lot of effort, but from how you’ve shared things, you’ve nothing to lose by exploring…the Carers UK helpline could possibly help you identify ‘good’ groups locally
Helpline and other support | Carers UK.
I don’t know this organisation - perhaps ask Carers UK for their thoughts: Support available for carers in England
I just wanted to share some resources and hope they could poss help. BUT you know more than I do given the 2 decades of caring. I just hope you can find more support.
BIG hugs, I hope you’ll post again and share your thoughts here or on Roll Call.
You’re NOT alone.xoxo
I’m old enough to remember when parents of a special needs child were given two options, either admit the child to a special hospital or do it all yourself! Your parents may have grown up with this idea, and done their best for your sister. Fine when they are young and well, but catastrophic when they die. When my brain damaged son was 16, I was very ill, and he moved to boarding school, then a residential college. He has always come home very regularly, but has a life apart from us as well. Gradually your sister needs to get to know and trust others. This has to start with a Needs Assessment from Social Services and a Carers Assessment for you. If she doesn’t like others very much, maybe start by having a “cleaner” into the house, so she can first see you having a chat? Going out for a walk, or similar. Whatever seems most appropriate. You need time to yourself, confident that she isn’t stressed.
@Bunny28 hi
My way of being with things like your things,
Being with someone’s fearful ideas is a hard teaching.
My daughter is similar to your sister.
I respond to fear with a practice I learnt,
Breath in the difficult feeling and on breathing out think / imagine what you hope for the sufferer.
This Tonglen meditation gives me space to feel I can bravely breathe in any fear and the space to respond with separating the feelings from the story.
I respond with externalising the story / narrative, but connecting through the feelings.
I hear you’re scared, I am not scared, I love you.
Not trying to argue or disprove, just abiding with.
Warm wishes to you Bunny 
Ula
Things to hope for sufferer,
Things to say,
May you feel safe and secure,
We are love
Ula 
Hi @Bunny28 I understand where you’re coming from. 10 years ago today I took our autistic son to visit his mum just before she had an urgent spinal operation. Soon after, she was transferred to another hospital and Mike didn’t see here - except on Skype - for over a month. Every day he would phone to see if she was still alive, because three of his grandparents had gone into hospital and never came out.
When I finally was able to get him to the hospital to see his mum, his first words to here were: “Mum, you’re still alive!”
It took a long time for him to get used to the idea.
He still gets anxious if Gill is poorly for any reason.
She’s his world. And that’s your problem, too. You’re her last link with her past and the potential for change is really scary.
Over the last few years we’ve worked with his staff (he lives alone with staff support 24/7) to build systems that mean he has more control, and that needs less input from his mum. It’s helped to reduce his anxiety levels but he will never not be anxious about his mum.
It’s important to make sure you do go out and she finds out that you do come back. It only has to be for a few minutes to begin with, but if you don’t, you’re not only ignoring your own needs, you’re supporting her anxieties, making them worse. And making life harder for you.
And if you think it’s bad for you, think what it would become like for your daughter…
Hi @Bunny28
I care for S and have done since 2000. I’m the one consistency in his life, he is now nearly 33. I’m a little bit older than you. Planning next steps is hard isn’t it because of the anxiety we know it could cause.
Does your sister need care when you are at work?
Rather than you leaving her (to start with) does she go to any clubs or groups?