This is a challenging situation for the whole family and the word that you all need to embrace in the future is “support” for your sister and each other. In this way you can all continue as a family and as individuals whilst giving your sister confidence that you are all there for her. I have listed some support groups below that will be able to guide you through coming to terms with the changed circumstances in your family. It will also be as important to be educated in the condition and aware of any new treatments or developments.
If you have not done so, ensure your sister’s home environment completely meets her needs and enables the family to co-exist alongside her. Your local social services will be able to help you with any adjustments or equipment that may be needed. You will need to contact them. It is possible that you already have a case manager at social services but if you haven’t you can request one. Family members who are good at DIY can also be bribed with cake to make minor adjustments to the home, anything that makes life easier.
Continue to do normal things that your sister likes. Plan things and let her decide what and when she would like to do things (give her back some control over her life). Meet as a family (and friends) decide who can help and with what tasks or events that need achieving. In living life to the full in a loving, supportive environment, your sister will be more able to accept and alter to her changed physicality. The Health at hand team is always here to offer additional support with health information and advice.
Answered by Health at Hand nurses
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