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I cannot emphasize how critically important this topic is. I recently lost my brother who had Downs Syndrome. He passed away at 51. A generation ago, this would have been very old for persons with DS. However, beginning with his generation, this is no longer the case. These young men and women are living longer and longer. That’s the good news. The bad news is that many of them will develop Alzheimers, Parkinsons and or Seizure Disorders (among other things). My family and I were like pioneers trying to find suitable facilities for him to live. My parents had spent a lifetime preparing for his future. That all went down the drain when his Alzheimers became to severe for him to live on his own. It was certainly an eye-opening experience…..that began with convincing certain family members that he needed additonal support all the way up to his passing…. which included finding housing that was more supportive up through hospice care. It included educating staff at the nursing home where he spent his final 10 months. This was an exceptional staff, but they had worked with geriatric patients…not mentally challenged patients. It included working with attorneys to be sure that he received all of the governmental assistance he had earned. It included setting up support groups for him and for me. It included delagating responsibilites to various family members. It was hard work….physically, emotionally and spiritually. But it was by far the most rewarding thing I have ever done in my life!
Thanks for your thoughts, Mary Beth. Your story is one that needs to be shared with others. I think a lot of siblings worry about that stuff.
I am interested in long distance caregiving of aging schizophrenic siblings. Also dialysis involving older mentally ill siblings. Thanks for any leads to discussions of these subjects!
Thanks Susan. If I come across anything, I will make sure to post it to the SLN.