In an insightful post for Black Youth Project, Ariam Alula, a member of the Sibling Leadership Network’s NY chapter, reflects on how to care for her brother with autism and his mental health after her parents pass away:
“My parents have long avoided having the talk with me about how I can take care of my older brother when they are gone. Daniel, who is 29 and on the autism spectrum, needs full-time supervision and someone is always at home with him — my mom, my dad or me. But I worry about the future when I will be his primary caregiver…
…About two years ago, I joined a group run by ‘SibsNY‘ which offers support for people who identify with my concerns. What I learned there convinced me even more that, as a family, we need a plan.”
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That was a fantastic post. Keep pushing your parents and also prepare yourself. Just being connected to other siblings is a great start. I would also remind you that your brother does not have to live with you. Good luck!
I so relate to this post. I am 45 and it was only this year that I finally got my mom to have a will drafted with the needed documentation for me to take on legal guardianship of my sister after our mom passes away. Even though taking care of my sister will mean selling my house (which cannot be made accessible), selling my mom’s house, and trying to buy a new house in my budget in a very expensive area, which means lots of financial planning is needed, my mom did NOT want to talk about what would happen after she dies. She did not want to make plans – even though I can’t plan until she does – and she did not want to have any conversations. We actually fought about it and stopped speaking for a month – that was what actually prompted her to finally take care of the will. All I can say is to keep talking to your parents and keep reminding them that the best way to show their love for you and your sibling is to help you plan for their care after your parents pass away.
Thanks for the great post. This sibling is really thinking ahead and will do well. Siblings are the longest relationship most of us will have. The best thing to do is to educate yourself on your particular state’s service delivery system. Residential, day or work program, transportation, in addition to health care (medicaid eligible? Medicare eligible?). It is not rocket science, but the devil is in the details.