Cerebral Palsy
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Hi, my name is jimza!

jimzajimza Member Posts: 2 Listener
Hi everyone, 

I  am 29y/o F, joined this forum as a sibling of a sister (19F) with special needs. She has mild cerebal palsy, so suffers from mobility issues and  learning difficulties. She goes to uni, studies  hard  but occasionally has to use a motorised  wheelchair, is not able to cope with any stress emotionally.  She is currently cared for by  my parents, whilst I have moved away to another city. 

The reason why I'm joining this forum is because as the only sibling, my anxiety is getting worse around how I could care for her whilst  both of us can lead independant  lives. My parents aren't in the best of health either as they get older. We don't have a great relationship because everytime I try  to discuss her  future options for support when  they're gone, they bury their head  in the sand. I even had  to have several arguments with  them before  they  seriously considered getting  her  a wheelchair last year, which has boosted her confidence. 

I guess this might  come across as selfish  to  many  (including my parents) but I don't want to live in with  my sister after they are gone. I would love for her to have a job after uni, enough support with  day to day  living and for me to visit her physically once a month or every 6 weeks. I  want her to have her  own network of support and  some friends, none of which  she has except for her parents. They  don't include me  in  any conversation and my  sister is not sociable at all, having this conversation with her will not yield anything. 

I'm hoping to learn  from other members here, share experiences and hopefully  figure out a better plan for her myself and understand how much money I need to set aside per  month for her going forwards. This sounds very dramatic but at the moment, I don't know where to start, don't know how to cope, but I guess it can  only get better if we plan now. 

Replies

  • Abdi_ScopeAbdi_Scope Scope Posts: 234 Pioneering
    edited March 2020

    Hi @jimza - welcome to the Community. Firstly, thank you for your openness and honesty - that can’t have been easy to write. I can’t imagine the various scenarios you have had to go through in your head and the emotions that must come with that. I have aged parents and I know how these discussions can be difficult for all involved; having to face the brutal realities of life and be honest about the vision for ourselves or our loved ones. I hope some in the group can give their experiences and thoughts. Rest assured, this Community is non-judgemental and is a source of great advice and encouragement. 

    We have specific boards where you can learn more about finances and benefits, as well as other topics that may help to alleviate some of your anxiety from not knowing the ins and outs. If there isn’t a particular board, feel free to post in the Lounge and I am sure people will contribute.

  • jimzajimza Member Posts: 2 Listener
    @Abdi_Scope thank you so much  for understanding. Look forward to becoming a  part of the Community and maybe one day, I can  get my sister on board too!
  • Abdi_ScopeAbdi_Scope Scope Posts: 234 Pioneering
    @jimza - That sounds like a great idea to get your sister involved. I know personally, I never like to hear things from family or people who I think don't really understand my situation and the challenges and emotions that come from my disability. When I hear it from others who have the same experience though, I see the same advice as less of a threat and more as a support.
  • chiariedschiarieds Community Co-Production Group Posts: 9,129 Disability Gamechanger
    Hi @jimza - Welcome to the community. Thank you for joining & sharing about your family situation. I don't have any answers, but must admit my first thought was how can you involve your sister, as you can't plan for her future without her willing  involvement. Perhaps you could just chat about what she hopes to do after uni initially, & see where that leads.
    You come across as a very caring young person & I applaud your efforts to support your sister. I think, perhaps, you both need to understand the other's point of view.
    I'm sure Abdi has been able to help, & perhaps others may join in. I hope you enjoy being part of this friendly & supportive community. :)
  • WestHam06WestHam06 Member, Scope Volunteer Posts: 1,354 Pioneering
    Hi @jimza
                      Welcome to the community and thank you for joining us. I am sorry to hear of the anxiety you are feeling and thank you for your honesty. As @Abdi_Scope has said the online community is non-judgemental and we are here to support one another. I am unable to offer you the answers but the first thing I would say is to talk to your sister about what she would like in the future as then her voice as well as yours have the chance to be heard. Also, have a look around the Scope website as there is support available. I too understand how conversations such as the ones you have mentioned can be really difficult for all involved. I hope that with the advice @Abdi_Scope has given and if others share their experiences, you are able to start to move forward in a positive way for you, your sister and your parents. This may involve introducing the online community to your sister when the time is right, it would be wonderful to meet her too. What is she studying at uni? Thank you. 
  • Richard_ScopeRichard_Scope Posts: 2,834

    Scope community team

    Hi @jimza, a very warm welcome to you. It's great to have here!

    Firstly I don't think you are being in any way selfish. It is always a good idea to plan for the future. Your sister must be fairly independent if she attends university?  I echo what has already been mentioned about involving your sister in any decision making. Your sister will soon need to think about what it is she would like for her future and it might a good way to start a broader conversation. 
    I have worked with a great charity called Young Sibs they have resources for the brother or sister of a disabled person.

    Don't be too hard on yourself, you come across as a very caring and thoughtful sister.
    If you want to talk further or in more detail, then do let me know :smile:
    Scope
    Specialist Information Officer - Cerebral Palsy

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