I am a 75-year-old Dad of a daughter with autism. My daughter has her own car and is quite independent. She lives with me and we just moved closer to my son so that when I die my daughter could stay in this new house, and my son could help her. She really only needs help on financial matters, for instance, ensuring bills are paid, checks are written, maintenance on the house, she needs her brother to be her representative payee for her benefits, and she just needs him to stop by or call every couple days. My son’s wife has been traveling quite a bit for work, and he just told me he is not sure if he will be able to help his sister, and I may need to find another living arrangement for her that is more managed by a company. That was quite a blow, and quite unexpected. Do you have any advice on what I should do next?
I am sorry that your plan for your daughter’s future has been interrupted; however, it may not be lost forever. It seems as though your son’s life may be a bit overwhelming at this time with his wife not being home due to her recent travel for work and with your move closer to him which brought the impending responsibility of caring for his sister front and center in his life. Your son is most likely envisioning his life without you as the primary caregiver for his sister, and he sees a great deal of extra work, time and responsibility that he is not sure he can handle.
Your situation is quite common at this time of life. I call it, “The Impending Passing of the Torch.” At this time, your son is wrestling with fear, but it is not fear of caring for his sister, it is fear of the unknown, of not knowing what “caring for his sister” entails. This is when communication becomes paramount. If you have not completed a LIFE Journal™ or Letter of Intent, this is the time to do so. The LIFE Journal™ is a written document that details your daughter’s daily activities, important professionals in her life (i.e. physician, therapist, case worker), her medical history, the areas in which your daughter needs support, and your hopes for her lifetime. It is critical that you complete this document, and schedule some uninterrupted time with your son to review it with him. It is very likely that he just does not understand what he is being asked to do in reference to caring for his sister, and this document will provide him that understanding.
Please don’t lose hope regarding the plans you have for your daughter. It has been my experience that once your son understands exactly what his responsibilities will be, he will accept and settle in to that role.
Please follow this link to find The LIFE Journal™
For more information on how to prepare for the future, be sure to contact a financial advisor who specializes in serving families with special needs. A Special Needs Plan is driven by what they call Unleash L.I.F.E.™- L.I.F.E. meaning Lasting Independence For Everyone™. This is accomplished with education, action, and support in the creation, implementation, and continued monitoring of a specifically designed lifelong and integrated plan for your family: parents, caregivers, your loved one with special needs and their siblings.
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This article was featured in Issue 37 – Making Educational Strides