Hi, my name is jimza!
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.
Comments
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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.
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@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!
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@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.
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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.
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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.
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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
Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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