On our drive from Chicago to South Dakota, we turned down the music for a while to interview a Chicago psychologist, David. David’s sister, who is four years younger than he, was born prematurely and suffers from physical and mental retardation and severe mental illness. She was diagnosed with 18q Minus Syndrome when she was 18 after the completion of the Human Genome Project. He described her as “very smart, very eloquent, but also very evil and conniving.” He described her as the type of person that does much better in situations that involve boundaries and rules. Throughout his life, David has gone to IEP/ILP meetings with his parents, has been involved in processes relating to her medicines and living situations, and has a very open communication current with his parents regarding his sister and her life. He depicted his desensitization from being embarrassed in public, his confusion about whether his sister’s tantrums are a part of a personality or a factor of her disability (a very common incertitude we have seen over this trip), and his realization that his sister lacks empathy, which makes having a relationship with her tremendously difficult. “There are certainly times when she would throw tantrums for the sake of getting her way and it’s just very difficult sometimes to tell whether this is her trying to get her way or [her] being a relatively disabled person.”
So, why does he bother staying involved in her caretaking?
David’s story epitomizes a key trend that we have seen over and over on this trip. He told us blatantly that he stays as involved as he is because, at this point, he is “doing things for [his] parents now, more so than [his] sister.” “If my mom didn’t care that I go and see where she lives, then I wouldn’t care.” We have spoken with many primary caregivers whose decisions towards their siblings are intrinsically tied to their feelings about their parents. Many times, older siblings take on more of a role in their sibling’s lives because they feel guilty that their parents are still doing it, that their parents will never see their retirements. Other times, we see siblings who take on adult-roles in their sibling’s lives because they know that after their parents pass on, no one else will. Still other times, we speak with sibling who feel contrite and accept caretaker roles because they know that their parents want them to do so.
As David told us, he is a psychologist that doesn’t “do feelings” in his work with cognitive psychology. Sometimes, as we have seen numerous times along this journey, the best role to take on during long-term care is the one that you are comfortable with the most, even if it involves more overseeing than seeing.