Sibling Caregivers Share Rewards and Challenges
Nora Fox Handler's three unmarried adult brothers were still living at home in upstate Illinois when their mother, Mary Lu, died from an aneurysm in 1998. The oldest brother, Marty, is autistic and the two younger brothers, Michael and Patrick, had been diagnosed as children with FG syndrome type 1, a rare genetic disorder characterized by intellectual disability and poor muscle tone.
For six months, Nora, who was a stay-at-home parent, and her older sister, Margaret, a schoolteacher, took turns living with their brothers for a week at a time. The sisters eventually found a group home for the younger brothers and independent housing for Marty. Now 69, Marty still lives by himself and makes his own health care and financial decisions. But Nora and Margaret became legal guardians for Michael and Patrick before the brothers died, in 2016 and 2018, respectively.
“We were brought up to believe that we would take care of our brothers. My mom never asked; she just expected it. There was no specific plan in place when she died,” says Handler, who is 67 and lives in Chicago. “When my sister and I made the decision to find other living arrangements for them, we felt horrible even though Margaret quit her teaching job and took a few years off to manage their care.”
As improved care and treatment allow people with neurologic disorders to live longer, the number of sibling caregivers continues to rise. In the United States, it is estimated to be at least 82,000. “We expect this to increase as people with neurologic conditions and disabilities continue to outlive their parents or their parents' ability to provide care,” says Meghan Burke, PhD, professor of special education at the University of Illinois at Urbana-Champaign and a leading authority on sibling caregiver research.
Taking on the care of a sibling involves more than companionship. “Assuming responsibility for housing, health care, legal and financial matters, potential employment, social activities, and more can make us feel more like their parents and can be overwhelming,” says Emily Holl, director of the Sibling Support Project, a national program that provides resources for caregivers of people with special needs, and co-editor of The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities (Woodbine House, 2014).
“It's easy to fall into the trap of playing the parent, but that's not a sibling's role in caring for a brother or sister,” says Seth M. Keller, MD, FAAN, a neurologist in Lumberton, NJ, and past president of the American Academy of Developmental Medicine and Dentistry. “Sibling caregivers are guardians of the brothers or sisters, but they still need to find ways to connect as siblings, whether through common interests, shared experiences, or childhood memories.”
This predicament is familiar to Holl, whose 51-year-old brother, Peter, has fragile X syndrome, a genetic condition characterized by intellectual disability, learning and behavioral problems, and sometimes seizures. “Now that both our parents are gone, conversations with my brother usually revolve around some aspect of his care,” says Holl, 49, who lives in Seattle while Peter resides in Brooklyn, NY. “Like many adult siblings in our online groups, I sometimes resent that I cannot just be Peter's sister. I'm working on figuring out what it means to be a sister and how Peter and I can focus more on that part of our relationship by steering the conversation into non-care-related topics.”
Potential Difficulties
Setting boundaries can help, says Tamar Heller, PhD, professor and head of the department of disability and human development at the University of Illinois at Chicago. Dr. Heller, 71, has a younger sister, Daphne, 61, who has cerebral palsy and lives in a group home about 45 minutes away. Dr. Heller and her husband visit Daphne every other Sunday for lunch and bring her favorite foods, like bagels and lox. “In between our visits, she calls me several times a day, and I enjoy staying in touch. I've told her she can call me as many times as she wants, but I've also let her know I won't always answer.”
Tamar Heller with her brother and sister, David and Daphne Ron. Daphne has cerebral palsy and lives in a group home. Photo Courtesy Tamar Heller
In serving as caregivers, or even just preparing for it, siblings may have to deal with difficult behavior such as tantrums, stubbornness, or aggression. Nathan Grant, a medical student at Harvard Medical School in Boston, and his twin brother, Nik, are 25. Nik was diagnosed at birth with Hunter syndrome (also known as mucopolysaccharidosis type II), a rare neurodegenerative disease that causes Nik, who is nonverbal, to be aggressive, impulsive, and given to outbursts. His condition causes him a lot of pain, but he can't express himself, so he acts out, says Nathan, whose parents care for Nik. “Identifying what might trigger an outburst has helped reduce the frequency [of those behaviors], and staying calm during an episode helps defuse the situation.”
Jessica Guenzel lives with and cares for her brother, Paul, who has neurofibromatosis type 1 and impaired short-term memory. Photo Courtesy Jessica Guenzel
For Jessica Guenzel, 43, a professional dog walker, the incessant questions from her brother, Paul, can be exhausting. Now 37, Paul was diagnosed at birth with neurofibromatosis type 1, which causes tumors to grow on the spinal cord and brain and leads to developmental and intellectual disabilities. He is blind and deaf on his left side and has impaired short-term memory. “He'll ask ‘What's for dinner?’ several times even though I've just answered him minutes before,” says Guenzel, who moved Paul into her small apartment in Rutherford, NJ. “We have the same conversations over and over again throughout the day. It's definitely a test of patience and can leave me feeling upset and anxious.”
Some studies have noted mental health issues among sibling caregivers. A 2016 study published in Research in Developmental Disabilities, for example, found significantly higher rates of depression and anxiety among adults caring for siblings with autism and other developmental disabilities than in a control group. It's important for sibling caregivers to seek support and therapy to deal with the emotional aspects of caring for a sibling, says Dr. Burke.
A Support Network
People shouldn't feel like they alone have to do everything related to their sibling's care. Holl has set up a support system for her brother, which includes his care manager (who was assigned to him through Medicaid) and many friends and neighbors. The care manager coordinates Peter's treatment services and oversees an annual planning meeting with Medicaid to determine his goals and needs. “Knowing that someone is advocating in Peter's best interests gives me and Peter peace of mind,” says Holl.
When Peter was in the hospital in New York City last year, Holl flew east to be with him. Her friends in Seattle helped with childcare and meals for her husband and kids, while other friends visited Peter in the hospital. “My ‘village’ helped me get through an extremely difficult time,” says Holl. “I think caregivers sometimes feel guilty about building relationships and lives outside of their siblings. However, it's these very relationships that strengthen us and enable us to support our siblings.”
Guenzel is the first to admit that she struggles to focus on herself. “I was cleaning out my closet recently and threw out a bunch of ‘date-night’ shoes because I don't date anymore, but then I realized that I need to take more time to meet people and do nice things for myself, whether it's scheduling a facial or dinner with a friend.”
Women who care for a sibling tend to marry and have children later than noncaregiving women, though the divorce rate among sibling caregivers is below average, according to an online survey of 1,166 adult siblings conducted by Vanderbilt University. The now married Holl says that when she was dating, she would watch how her boyfriends treated her brother. “I knew that I would eventually have the responsibility of caring for my brother,” she says. “The way they regarded Peter—whether they were friendly, curious, or dismissive—told me a lot about their values. I wanted a life partner who accepted that Peter and I were a package deal.”
Securing the Future
To ensure that adults with special needs are cared and provided for, Dr. Keller works closely with his patients and their families to map out the future. “It's normal for families not to plan ahead, but [not doing so] can be detrimental to siblings with disabilities,” he says. Planning is not a one-step process, adds Holl. It starts with siblings getting full information about the sibling's health and being involved in interactions with doctors and therapists.
“It's important [for parents] to include siblings in conversations around key transitions in the life of the person with a disability, like when they turn 18 and age out of special needs education services,” says Holl. The more knowledgeable someone is about their sibling's situation, the easier it is for that person to participate in such steps as setting up a special needs trust or other financial planning and establishing guardianship, she says.
In Holl's case, her brother broached the subject of his future living arrangements. “I just figured he would live with me, but it turns out he wanted to live independently,” she says. “So we talked about what that would look like and what other services we could put in place to make it work.” Holl had lived near Peter until she relocated to Seattle five years ago for her husband's job.
Some parents are hesitant to let go and allow siblings to play a role. That's been Nathan Grant's experience, but he continues to raise the topic with his parents. And now that he's in medical school, he's noticed a change. “When it comes to health care decisions for my brother, my parents are starting to include me more.”
As circumstances change for a brother or sister, plans may need to be revised, says Holl, who is reassessing her brother's living situation because new health concerns have emerged. “Peter is getting older and having mobility issues,” she explains. “I'm not sure how long he'll be able to live independently, so we're starting to talk with his case management team about options for the future.”
Guenzel admits that it scares her to think about the future. She doesn't have other siblings or children, so there is no one else to care for Paul if something should happen to her. “I know it's something I need to do, but it's hard to figure out how to start.”
Covering Costs
A special needs trust allows families to leave money or property to someone with special needs by designating sibling caregivers as the trustees who will control the property and determine how the money is spent. This type of trust would not disqualify the special needs adult from receiving Medicaid, which could happen with a regular trust.
Handler also recommends opening an ABLE savings account. These tax-advantaged accounts, established through the Achieving a Better Life Experience (ABLE) Act of 2014, are designed for people with disabilities to fund costs associated with housing, health care, and other day-to-day expenses. In the absence of a trust for Handler's brother Marty, she established an ABLE account for him.
Guenzel's brother, Paul, works about 30 hours a week at the local Goodwill store to help pay for his living expenses. In addition, because of his disability, Paul receives Social Security survivor benefits from his deceased father. He also qualified for Medicaid and has a small monthly budget for extracurricular activities through the state Division of Developmental Disabilities. “A care partner will take him to the zoo, the aquarium, or the amusement park to help him stay active and experience new things,” says Guenzel. “The budget also provides for a job coach to directly handle any performance issues between Paul and the store and make sure he's working in a safe environment.”
Caring for a sibling is often a positive experience and can foster resilience, empathy, tolerance, and adaptability. “Based on several studies, siblings report feeling invested in the future of their brothers or sisters and genuinely want to spend time with them,” says Dr. Burke, whose younger brother, Ryan, has Down syndrome. “When my siblings visit my parents' home, where he lives, it's really Ryan they're coming to see.”
Many caregivers say their siblings helped shape their career and professional choices. In high school, Grant started Siblings with a Mission, an advocacy group for siblings of individuals with complex health conditions such as rare genetic diseases. “My brother inspired me to develop connections with the sibling community and develop a stronger network where we can help support one another,” he says.
Subscribe to Our Email Newsletter!
Subscribe Now
By signing up, you agree to our Privacy Policy and Terms.
Dr. Burke says she and her siblings were influenced by Ryan. “It's not a coincidence that all of us have chosen professional careers in health care,” she says. Her older brother is a child psychiatrist, her youngest sister is a speech language pathologist, and her middle sister is a direct support professional, who provides assistance to people with disabilities to strengthen their living skills. “Without Ryan, I'm sure all of us would have chosen very different career paths.”