One day, I’ll be the sole caregiver of my adult sister, who has Down Syndrome.
- My 20-year-old sister, who has Down Syndrome, lives at home with my mom. Eventually, my mom won’t be able to drive my sister to work or doctor’s appointments, or remind her to fold her socks and floss her teeth, and the only person left to do those things will be me. It’s a terrifying thought that never really goes away, and planning for my own future with this sense of constant anxiety and uncertainty can sometimes feel impossible and pointless.
My reluctance to embrace this role isn’t something most friends or acquaintances can relate to, and neither can a lot of other siblings of special needs people I’ve met—especially the ones who grow up to be special ed teachers, disability rights attorneys, or publishChicken Soup For The Soul-esque books and blogs. I love my sister, but being her full time caregiver isn’t something I’ve ever wanted. And of course, I often feel guilty for not wanting it.
Providing care for a family member with a disability can be emotionally and physically taxing—particularly for siblings of people with special needs. People with learning and cognitive disabilities are living longer with greater potential to outlive their parents, and while that’s amazing, many adult siblings may feel responsible for providing care for a sibling when their parents are no longer able. Those with the means to may be able to hire professional care workers, or divide the responsibilities of care among multiple siblings and family members, but outside resources aren’t always accessible.
“Caring for a disabled sibling is often brutal,” says Thomas Plante, a psychologist and adjunct professor of psychiatry and behavioral sciences at Stanford University School of Medicine. “Often folks have very mixed feelings and ambivalence abounds. The caregiver often feels burdened and stressed, but also feels guilty about feeling this way.” Plante says he meets many individuals in his clinical practice who struggle to balance their own personal lives and responsibilities while caring for a loved one, an experience that can be difficult for many to talk about, even with family or close friends.
Some choose to take on the role of caregiver or guardian even before they have to, when parents or other family members aren’t willing or able to provide sufficient care. “I’m a co-guardian of my older brother,” says Kate Lewin-Hilgenberg, a line producer in New York City. “I have always known that I would take over caring for him, and I am a better advocate for him that my mother is, so it just made sense.” Lewin-Hilgenberg has two children, and though her brother lives in a group home, “it can sometimes feel like having a third child. I need to approve doctor appointments, be available for meetings regarding him, make sure his needs are being met.” Her husband, she says, is incredibly understanding but her children don’t feel as comfortable interacting with their uncle. “The stress, when things are bad, can definitely take a toll on me,” she says.