Caregiving for Siblings: 5 Key Ways to Prepare

How to get ready when it's your turn to care for siblings with a chronic illness or disability

Paul Wynn,

AARP

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Published September 05, 2025

(From left) Sibling caregivers, Margaret Fox-Hawthorne and Nora Handler visit with their brother Marty as they head out on a family fishing trip.

Tim Klein

Becoming a sibling caregiver can happen suddenly or gradually, often as parents involve siblings more in care and decision-making for adult siblings with disabilities or chronic conditions.

It happened overnight for Nora Handler and her older sister, Margaret Fox-Hawthorne. Their three unmarried adult brothers were living at home in northeast Illinois when their mother, Mary Lu, died suddenly from an aneurysm in 1998. The oldest brother, Marty, now 72, has autism, and after many years the two younger brothers, Michael and Patrick, were eventually diagnosed with FG syndrome type 1, a rare genetic disorder characterized by intellectual disability and poor muscle tone.

For six months, Handler, who was a stay-at-home mom to a teenage son at the time, and her sister, a schoolteacher, took turns living with their brothers at their mother’s house. Handler had to drive three and a half hours to her mom’s house, and Fox-Hawthorne lived 45 minutes away. After Marty lived with various family members, the sisters, with support from other family members, eventually found independent housing for him and a group home for the younger brothers, who died several years ago.

“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 69 and lives in Woodstock, Illinois. “I’ve never stopped being Marty’s sister, but at some point you realize you’ve become the parent too. And there’s no road map for that.”

Following a major fall that led to a hip replacement in 2023, Marty was moved in and out of several facilities, some of which said he was a fall hazard and had to leave. He currently lives in an assisted living facility in Illinois that accepts Medicaid, close to both of his sisters and other family members.

Marty and Margaret find ways to have fun and stay connected.

Tim Klein

Who are sibling caregivers?

Sibling caregivers are a small but growing community, as adults with disabilities and chronic diseases are living longer because of improved care and treatment. According to “Caregiving in the US 2025,” a joint report by AARP and the National Alliance for Caregiving, caregiving for a sibling increases with age. Only 4 percent of caregivers ages 18 to 49 care for a sibling, but that figure rises to 11 percent by 65 and 13 percent by 75.

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“The likelihood that someone is caring for a sibling increases as they age,” says Rita B. Choula, senior director of caregiving at the AARP Public Policy Institute.

“While many have been caring for a sibling throughout their lives, the later-in-life role, may increase due to parents aging with needs or passing away. This care can be met with challenges often faced by other caregivers, including navigating existing family dynamics.”

“Siblings are usually recognized as the next generation of caregivers in their families, with the oldest daughter most likely stepping into a caregiver role versus younger sisters or brothers,” says Tamar Heller, a professor and director of the Institute on Disability and Human Development at the University of Illinois Chicago. “In smaller families, the lone sibling usually has very little choice but to take over caregiving responsibilities.”

Juggling several roles

Sibling caregivers face many challenges and juggle several roles, says Emily Holl, 51, director of the Sibling Support Project. She is the primary caregiver to her brother, Peter Marino, 53, who lives with Fragile X syndrome, a genetic condition characterized by intellectual disability, learning and behavioral problems and sometimes seizures.

“The relationship siblings share growing [up] often changes when one sibling assumes the role of caregiver. Being responsible for your sibling’s housing, health care, legal and financial matters, potential employment and social activities can be overwhelming and shift the dynamic in ways that are challenging,” says Holl. She is coeditor of The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults With Disabilities.

Meghan Burke, a professor of special education at Vanderbilt University, describes a growing trend known as compound caregiving, a reality for many midlife siblings juggling multiple caregiving roles simultaneously.

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“We’re seeing siblings like myself not only caring for our own children, some of whom may have disabilities, but also planning for or actively caring for a sibling with a disability and potentially aging parents,” she says.

Siblings sometimes find themselves taking on a parental role, called parentification. “It’s easy to fall into the trap of playing the parent, but that’s not a sibling’s role in caring for their brother or sister,” says Burke, who has a younger brother, Ryan, with Down syndrome.

Heller, 74, recommends setting boundaries with siblings. She has a younger sister, Daphne, 63, who lives with cerebral palsy in a group home about an hour away from her in Chicago. Heller and her husband visit her sister every other Sunday for lunch and bring her favorite foods, like lox and bagels.

“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 she knows I won’t always answer,” Heller says.

Caring for a sibling with a disability or chronic disease involves many challenges and responsibilities, but thoughtful preparation can make a world of difference. From future planning to creating a strong support network, check out these five key areas to focus on to ensure that siblings’ needs are met while also safeguarding your own well-being.

Plan for the future

Families rarely talk about future caregiving plans unless a crisis forces the conversation. Even in families where the siblings are involved and well intentioned, it’s common to make assumptions about what’s best without ever asking the sibling with a disability what they want.

Marty, the fisherman.

Tim Klein

While Handler and her family didn’t plan ahead, Burke and her other siblings have worked with their parents to outline a clear plan for Ryan’s future. Burke’s parents have provided her with key documents and financial details, ensuring she understands Ryan’s services and support needs. Her family, including Ryan, regularly talk about the future, focusing on his goals and exploring the services needed to help make them a reality.

In a 2018 study, Burke found through interviews that many sibling caregivers may not know what kind of plans their parents have made because they avoid talking about them. Families often struggle to afford legal help, and there can be long lists for housing and support services that can make planning feel even more daunting.

“Recognizing these emotional, financial and logistical hurdles could help families find the right type of support from local and national sibling advocacy groups,” Burke says. (See sidebar for resources.)

Secure financial and medical protections

In addition to a durable power of attorney for finances document and a medical power of attorney document to make financial and medical decisions for siblings if they can no longer do so, some families explore special needs trusts.

Key Resources for Sibling Caregivers

Find help and support from local and national sibling groups:

These trusts allow families to hold and protect money or property for 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.

Marino is independent enough to be his own guardian, so legal planning for Holl was more about supportive decision-making and talking through things like health care and finances.

“Guardianship is not a one-size-fits-all process, and it’s important for families to consider how to protect the legal rights of their loved ones while offering the appropriate level of support,” she says.

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.

The family heads out in hopes of a great catch. Nora’s son, Michael Handler, joined the fishing expedition.

Tim Klein

Discuss living arrangements

While some sibling caregivers would prefer for their brother or sister to live with them, in general a small percentage of siblings end up living with their nondisabled sibling after the parents can no longer provide care.

“Siblings can remain in a close relationship even if the sibling with a disability lives in some form of supported housing, by visiting them or having them come and stay for short periods of time,” Heller says.

Burke says her brother Ryan does not want to live with her or any other siblings. Even though all four nondisabled siblings are willing and have space to take him in, Ryan prefers living with his parents because the environment is “calm and quiet.” Ryan is open about not liking kids, and since some of the siblings have young children, he’s not interested in moving in with them.

During the family outing, Marty casts his line and waits for the fish to bite.

Tim Klein

Create a circle of care

Building a support network — or a “village” — has been essential in reducing sibling caregiver burnout for Holl. Having a trusted care manager for Marino offers peace of mind, eases the stress of navigating services and ensures his needs are being met. Beyond professional support, sibling caregivers should not be afraid to lean on close friends and loved ones for emotional support.

“It’s common for siblings to not reach out because we don’t want to burden the people we love,” Holl says. “But these relationships give us comfort and strength and enable us to show up for our siblings.”

Handler and her sister have recruited several other family members, including other siblings, to be part of Marty’s life. “Caregiving isn’t a solo act,” she says. “For Marty, our family came together to share the load, each of us stepping in where we can. That support keeps him safe and lets us all breathe a little easier.”

Connect as siblings

The pressure of providing care can take its toll on the sibling relationship, Holl says.

“Now that both of our parents are gone, conversations with my brother often revolve around some aspect of his care,” she explains. “Like many adult siblings in our online groups, I sometimes resent that I cannot just be Peter’s sister. It’s something 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.”

Marty starts off the family fishing trip with the first catch.

Tim Klein

Handler strives to remain Marty’s sister, not his mother.

“I used to call it being a sister-mother,” she says, noting that while she and her sister often remind Marty to do things like clean up or use his walker safely, she tries not to let caregiving overshadow their relationship.

Over time, Marty has shown more appreciation, and their connection still includes shared laughter and moments of affection. “However, there’s always going to be a bit of nagging, things you wouldn’t do with a typical brother.”

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.