We get older while our handicapped sibling seems to remain the same. They have reached their full potential years ago. This is the case with my sister who will be 51 this year. After years of speech therapy, special schools and now workshop, she remains chronically mentally disabled. Her behavior is similar to what it was thirty years ago, except she is getting older.
We often forget that our disabled person is as old as they are when their behavior is that of a child. Yet, they are aging as we all do and are experiencing more health and weight issues. After years of taking medication to modify her behavior, weight gain has become an issue as does the fact that they are aging and experiencing more health issues, making caring for them more challenging.
My sister has been in a home for the disabled for many years. She began her journey at Devereux, a school for the disabled which at the time was the Harvard of the handicapped. She currently is five minutes from my parents, making it easy to visit her and have her sleep over, of which they do often. Yet, my parents are pushing eighty years old and experiencing their own health concerns. Caring for my sister is becoming more difficult for them.
As her sister, I have been a “back-up” for her care, but what happens when my parents are unable to handle her visits anymore? It is something that they don’t want to consider and is an issue that I will have to deal with. Living two hours away from where she resides, it is a challenge for me to care for her the way my parents would. It is also something I am not accustomed to nor could not handle. I have not spent the night with her for decades. Her severe anxiety makes her a light sleeper; she often gets up and wanders around.
Her weight is also becoming a concern. She has put on twenty pounds over the last year and headed toward obesity. Some of the weight gain is her added medication, but she has packed on the pounds at an alarming rate. I am quite sure her metabolism is slowing down, yet the added weight is not healthy for her. She was never a fat kid, so seeing her so heavy breaks my heart. It is difficult to cut back her food intake since it is a major source of pleasure for her.
The issues surrounding an aging disabled person are many. If a person still lives at home with their parents and their parents can no longer take care of them, who will? A sibling, a facility for the disabled if they can get in and afford it? Someone in the family will bear the brunt of the responsibility no matter who carefully a family plans for this. When a person is unable to take care of themselves they will need someone to make sure they are safe and loved.
I am fortunate that my sister is at a wonderful facility where she has had her family of nuns and other resident for almost fifteen years. This is home to her and where she is protected; yet, she is also accustomed to visiting family for activities such as bowling, lunch, movies, and family gatherings at the holidays. When my parents can no longer care for her, her life will change. I will always be in her life, but she is not my life. I have my family and journey to consider.
It is a painful and complicated issue caring for our disabled sibling, where there is no right answer.