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 publish Chicken 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.
Others may feel they’ve been pressured or expected to help care for their disabled siblings since childhood. “My whole life I’ve been ‘available’ for my family,” says Lauren Bebeau, whose younger brother has Cerebral Palsy. “My parents got divorced when I was in the 2nd grade. I can’t tell you how many times I’ve been the babysitter for each parent during the weekend. However, I don’t know any different. That’s just been my experience.” After graduating high school, Bebeau stayed in her hometown of Beaumont, Texas to work as a caregiver for her brother. She says that when the inevitable happens and her mother passes, she will be responsible for her brother. “I don’t foresee any of our relatives stepping up to help.”
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Bebeau adds that she’s unsure of how she might be able to date or have a family of her own. “I have dealt with the fact that I probably won’t have children so that I can be available for my brother,” she says. This doesn’t bother her as much, Bebeau adds, but her responsibilities to her brother have affected some of her romantic relationships. “I dated a guy for almost ten years who started to resent my brother. He just couldn’t deal with the disability,” she says. “I’d say he was pretty much jealous of the attention and help my brother received.”
Establishing a family emergency plan can help ease some siblings’ anxiety about the future, Plante says. Asking an aging parent to essentially plan for their death can be a difficult conversation to initiate, potentially stirring up emotional memories or fraught family relationships. “It’s good to be mindful of family dynamics and relationships,” Plante says. However, he also recommends that siblings “have things written down,” and keeping the planning conversation “very objective, using a problem solving focus. Avoid going into past slights or relationship challenges.” An trusted but neutral mediator, such as “a professional therapist, health care advocate, or cleric” can also keep the discussion focused on devising a step-by-step plan in the event of a parent or parents’ death, Plante adds.
Access to resources for individuals in need of full-time care “really depends on the illness, money, insurance, and willingness to participate and seek out support,” Plante says. Qualified, reliable in-home care workers can be hard to find, and the search requires time and energy many caregivers don’t have. “It is so hard to find and count on competent people to care for her that I had to quit my job and become her full time person,” says Kira Volar, whose sister Tara is 47 and has developmental disabilities. “It’s a very physical job,” Volar says. “I love my sister and I'm happy to care for her, and I know I'm doing the right thing, the best thing. But I struggle daily with frustration and anger…the system is stacked against her in every way.”
Group living facilities may be an option for some, but one that comes with its own risks. People with intellectual disabilities experience a heightened risk for abuse, and living in a group home can make abuse difficult to detect. “My sister Natalie with intellectual and developmental disabilities was being sexually assaulted at an outside caregiving facility,” says Julie Neward, 37, of Concord, CA. Natalie is nonverbal, and her story was reported by NPR last January. “The only evidence of her being violated was a positive test for gonorrhea, that an urgent care doctor finally did. The medical community kept treating her for yeast infections and UTI's,” Neward says. Following the incident, she asks, “How do I trust the system when it already failed us? How do I live my life and raise my family knowing that one day my sister will be under my care, and she was already abused?” “Our society isn't set up very well for this overall,” Plante says.
But there are ways to cope by organizing. The Right Care Now Project are working to help put guardians at ease by keeping medical staff, state agencies, and care workers accountable for the health and wellbeing of the people they care for, in addition to the Caregiver Action Network and National Alliance for Caregiving featuring community discussion groups and resources for locating backup caregivers in their community. Sibling-specific groups like the Sibling Leadership Network and Sibling Support Project lead support groups and advocacy training, and for those who aren’t able to connect in person, Facebook is a resource for finding a variety of groups for siblings of people with autism, Down Syndrome, and other intellectual and cognitive disabilities.
Whenever possible, it’s vital for a caregiver to reflect on what they, themselves need in order to feel supported and strong. “I treat people with these concerns and have seen with my own eyes how they can benefit from therapy and support groups,” Plante says. Cognitive interventions lead by a therapist or group leader, like managing “how you think about the stressors,” spiritual interventions such as “engagement with one's spiritual or religious tradition, prayer, meditation, and rituals,” or simply talking with trusted friends and supportive family—in person or online—can help.
Feeling supported and having access to caregiving resources can help mitigate feelings of uncertainty, and the help provided by state agencies isn’t enough. “I want siblings to have peace of mind,” Neward says. “I want change.”
I’m prepared to become my sister’s legal guardian one day, and whether or not I become her caregiver one day, I just want to know that she’ll be happy, healthy, and loved. I want her to live a life she’s excited about, and I want to do everything I can to make sure she never feels alone. I want the freedom to make a five year plan for myself, make commitments and set goals, and become who and what I need to be for myself and for her because I can’t imagine myself without her. I want us to get older together. It’s something I look forward to.
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