When the author's infirm parents didn't arrange care for their adult child with Down syndrome before they died, the author juggled caregiving her brother, tween, and a full-time job. She's not alone.
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Years before my mother, at 74, received the diagnosis of Stage-4 ovarian cancer, she’d planned to place my middle-aged brother, Mark—who has Down syndrome—in a Southern California group home with his longtime friends. She’d put him on the waitlist for a coveted spot in an apartment down the road from the day program he adored. But when his name came up, she and her wife couldn’t fathom asking him to leave the home they’d all shared for so long.
For decades, Mom had kept a keen eye on Mark’s daily schedule—made sure he dressed well, ate well, caught the bus to work on time. She drove him almost nightly half an hour down the Ventura Freeway to Special Olympics practice and dances while simultaneously caring for her mother who was dying of cancer. Nothing could keep her from attending to my brother’s basic needs, even when she learned that she herself had only four months to live. She clung to Mark and refused to engage in uncomfortable conversations that might lead to conflict—like where he would live when she passed away. So I shouldn’t have been surprised when she looked up at me from her hospice bed two weeks before she died and said, “I guess you’ll have to move Mark up to Oregon with you because your stepmother’s too frail to care for him.”
I nodded with barely hidden dismay. I was, at the time, immersed in helping my 12-year-old daughter—adopted from foster care—navigate middle school bullying and severe ADHD as she struggled with schoolwork, while I was teaching and burning the midnight oil to meet a book deadline. Now, I was supposed to move my brother 700 miles up north, away from his lifelong friends and his work, his Special Olympics sports and social groups?
For several months after our mother’s death, Mark remained in California with our stepmother, a 73-year-old diabetic weakened by multiple heart surgeries and crippling grief. And then came Covid and a global shutdown..
Oh God, I thought, stretched so thin already that I worried I might become transparent. How am I going to take care of all of them?
My mother, in the last couple of days before her passing, must have anticipated my question. Worried about my own mental health, she came up with what she thought was the best solution. But I wouldn’t find this out until months later.
Gen X: The Sandwich Generation
A 2021 Pew Research Center survey found that 23 percent of adults in their 30s, 40s, and 50s have at least one parent 65 years or older and a child younger than 18. Sometimes, they’re also financially assisting–and housing–a young-adult child. A 2016 survey conducted by the employment website Indeed found that approximately 37 percent of graduating university seniors planned to live with their parents for at least a year after graduation. In 2021, 59.7 million U.S. residents shared a home with multiple generations of family members…some of whom were disabled.
Approximately 7.39 million people in the U.S. live with intellectual and developmental disabilities (IDD); 60 percent of these people reside with their parents and/or siblings. A 2024 study confirmed what these mothers and fathers and sisters and brothers have long known: physical and mental health services for people with IDD decline after a child graduates from high school, and 21 percent of adults with IDD don’t have a job; this demographic is twice as likely as their non disabled counterparts to be unemployed. All of this translates into vulnerable young adults languishing at home, reliant on family members for all of their needs.
. As we caregivers age, we often find ourselves tending to adult family members with IDD, elderly parents, and our children—not to mention working full-time jobs. A disproportionate amount of this caregiving falls to the women in the family—mothers and daughters. While we adore our families, we’re overextended–not least of all because there are so few caregiving resources in the U.S., especially for people with any sort of physical or intellectual disability. This confounds our attempts to provide loved ones with the best and most independent life possible.
Caregiving with little government support is nothing new. However, Gen-Xers, in particular, shudder at the skyrocketing costs of retirement homes, memory care facilities for parents with dementia, childcare costs, college tuitions, and—for adult offspring with IDD—the cost of day programs and group homes and paid respite staff. Add to this the lack of emotional support for caregivers and we’re running ourselves ragged.
When my mother first fell ill, I googled “caregiver support for Down Syndrome” and found general information on websites for the National Down Syndrome Society, as well as Global Down Syndrome Foundation and Down Syndrome Resource Foundation. However, every state has its own funding systems, its own support organizations—some robust, and some almost non-existent. Florida has long been seen as providing the gold standard of opportunities for people with IDD—the state offers an abundance of resources for people with Down syndrome and similar conditions, from entrepreneur academies and teams for almost every Special Olympic sport in the world, to robust communities dedicated to helping parents at any stage of caring for a family member with Down syndrome. Thanks to its tropical climate, Florida also has numerous resources in place for elderly adults with increasing physical and mental health concerns. Oregon, where I live, not so much. I couldn’t help wondering, when my mother passed away, what the hell I was going to do with my brother all day every day.
I wondered, too, how I’d pay for his long-term care. The amount of Social Security income (SSI) for a person with IDD varies by state. A person with a disability in Hawaii qualifies for $483.61 a month in financial assistance, but only $37.28 a month in New Jersey. And while some states offer Supplemental Payment (SSP) to bolster SSI monthly payouts, other states do not. This income often makes the difference between a loved one happily engaged with peers in a for-profit day program and/or residential facility and a family member sitting day after day in front of Full House reruns on your living room couch.
So Many Challenges
Shelley Gottsagen, 69, sits beside her 39-year-old son, Zack, at a hip Portland restaurant, consulting with him on his breakfast order. She and her wife recently picked up their life in Florida and relocated to Oregon for nine weeks while Zack films a movie. (In 2019, Zack co-starred with Shia LaBeouf in The Peanut Butter Falcon and became the first person with Down syndrome to present at the Academy Awards.) Shelley Gottsagen has the luxury of travel only because she and her siblings just spent years helping their mother to find an assisted living facility. During this time, she drove Zack an hour each way to his concessions job at a movie theater and accompanied him on his speaking engagements and film gigs around the country.
“It’s great,” Gottsagen says of Zack’s success. “He’s provided me with a whole different life, totally unexpected at my age. But my mother is turning 90, and my wife is turning 70. There are so many challenges.”
After Gottsagen’s father died, her mother became isolated and began to fall. The siblings found what they thought was a suitable retirement home, but the bed provided for her mother was too high and she couldn’t get out without sliding off the mattress. “They considered that a fall, and they basically threw her out,” she explains. “I’m fortunate that I have two siblings, and the three of us really worked together at helping our mother find a new facility.”
Gottsagen also depends on her siblings to provide emergency care for Zack, should she herself become incapacitated. “I didn’t want to appoint a guardian,” she explained. “It talks away too many rights for someone independent like Zack.” Instead, she created a special-needs trust and gave her wife and siblings his medical and financial power of attorney should she pass away or develop dementia.
Parents and siblings of people over 40 with Down syndrome are ever on guard for dementia. A 2024 study found that almost all middle-aged people with the condition will develop Alzheimer’s. This means that mothers who might otherwise look forward to retirement must instead work overtime—like Shelley Gottsagen—to plan for the safety and well-being of vulnerable adult children … often while doing the same for elderly parents with dementia.
I Want My Life Back
The parents and siblings of people with Down syndrome and other IDD–so desperately in need of support–tend to remain invisible except to each another on Special Olympics practice fields and the occasional regional or nationwide conference and on Facebook support groups.
Jadene Ransdell, mother of a middle-aged man with Down syndrome, moderates a Facebook group called Down Syndrome and Alzheimer’s Support. While she didn’t care for her adult child and parents at the same time, she lost her husband to COVID while trying to make sure that her son got all his needs met in a group home 15 minutes away during the pandemic. “Most healthcare providers don’t understand the conditions that come with aging and Down syndrome,” she said. “They don’t even know that when our folks hit 40, they’re starting to have health conditions seen in the general population in their 60s.”
Her Facebook group members—mostly women between the ages of 30 and 70—post stories and questions related to their adult children or siblings. One explains that she’s parenting small kids while becoming a standby guardian for her sister in case their elderly parents pass away. Another describes caring for her mother who died of cancer and bringing her sister with Down syndrome into her home after their father became ill. One woman simply posted, “I want my life back. I’m tired of caregiving.”
“It’s horrendous,” Ransdell says. “People with Down syndrome used to live 25 years. Our loved ones are living longer, but medical professionals haven’t kept up with this fact. We’re left here trying to figure out how to do this.”
I’ll Make Sure She’s Looked After
Like me, Tiffany McDowell remembers the day her parents brought a newborn with Down syndrome home from the hospital. She thrusted out her hands to hold her new baby sister, Mallory. “I said, ‘I’ll take her,’” she recounted with a laugh. It’s a powerful statement, one that she’s backed up continuously with action. When their mother received a diagnosis of terminal cancer at 50, Mallory was just finishing high school. McDowell, 26 at the time, assumed guardianship of her teenage sister. “It’s just always been known that I’ll make sure she’s looked after,” she explains.
As parents pass away, the siblings of people with Down syndrome may find themselves taking on legal guardianship and faced with the decision of whether to open up their home or find a suitable group home, which is difficult because of waitlists, high staff turnover, cost, and a tendency toward what Gottsagen calls a “six-pack mentality; everyone has to do the same activities at the same time.”
McDowell had a husband and three small children when her mother died; she invited Mallory to move into her home, later extending this invitation to her ailing mother-in-law, as well. She admits she was frustrated with the lack of support offered in North Carolina. “After high school, there’s little for people with Down syndrome to do,” she explains. Mallory, now 35, has been on the state’s Registry of Unmet Needs for 15 years, hoping eventually to qualify for a job coach and transportation to a day program for people with developmental and intellectual disabilities. Weary of watching her younger sister languish without a sense of purpose, McDowell quit her corporate job and launched Joy Bar Coffee with one of her daughters as manager. She hired Mallory and other “Experience Facilitators”—employees with intellectual and developmental disabilities—to greet guests and deliver drinks curbside.
Today, Mallory still wants to live with her older sister and her husband. “But as she develops relationships with friends, all that may change,” McDowell says. “My hope is to find a place where she can enjoy a life that’s as independent as she wants it to be.”
When Caregivers Can No Longer Assist
Zack Gottsagen is still young and showing no indication of dementia. He lives in his own apartment down the street from his mother, who can pop over and help him fix his air conditioning or report a plumbing issue. She can do the same for her mother. But Gottsagen worries that she might become unable to care for either one as she herself ages. She and Zack are helping to fund-raise for the IDDEAL Foundation’s new independent residential community—safe, affordable apartments linked by a communal dining room and kitchen and recreational facilities with paid staff to assist with residents’ needs.
“He’ll have his own bedroom and bathroom, which is good, because he likes his alone time, but he also likes to socialize. He really likes his book club,” Gottsagen says. Zack is a good cook, but if he gets busy with acting and speaking engagements, he can opt into the community’s meal plan and break bread with his neighbors. “There’ll be people around him, you know?” she adds. “If myself and my wife die, he won’t be totally alone.”
I admire her willingness to look at her situation objectively and take steps to ensure Zack’s independence. I adored my mother, but her lack of preparation failed both me and my brother. She passed away five years ago without naming anyone as his legal guardian. Despite my plea to assume the role of caregiver, our stepmother applied for full guardianship of him and grew so abusive that I eventually surrendered the fight. Did my mother, witnessing my parenting struggles in the last days of her life, ask her wife not to encumber me with further caregiving? I believe now that she did. I heartily wish she hadn’t.
Tiffany McDowell understands the conundrum of being stretched very thin and yet wanting to care for a sibling with Down syndrome. “It has been my absolute honor to figure out life together with my sister,” she says. “None of us come into life with a manual of how we age or what our health is going to be like. When it comes to someone with an intellectual or developmental disability, it’s a little more complex because now we’re talking about Medicaid and Medicare and legislature that might affect the way they receive care. But we’re all aging, all of us, no matter our cognitive ability. We’re all going through this together.”
My stepmother ended up moving Mark across the country away from his work and friends and sports teams, where she awarded co-guardianship to her sister, then died of a broken heart and left my brother to languish in a group home with three non-verbal roommates. This is where he lived when I flew across the country to New York numerous times to help my husband with his mother before she passed away. This is where he lives, still, with staff who show varying degrees of care. He has a lackluster part-time job folding cutlery into napkins for minimum wage at a steakhouse, and he sometimes goes to Special Olympics practice on Saturdays—my brother whose calendar used to be full of exciting events every day of the week.
Am I pissed? I am.
If I want to take him to a movie or out to pub trivia or make him his favorite meal, I must leave my daughter who’s taking a full load of college classes as a high school student and fly across the country. But first, I must get permission from my stepmother’s sister whom I only met last year. I talk with Mark every night, and struggle to get group home staff to help him FaceTime with me, cut his toenails so he doesn’t limp when he walks, and take him outside so that he’s not sitting endlessly in front of the TV.
“I know that my mom worried about the undue burden that would be placed on me and my siblings,” says McDowell of her sister with Down syndrome. “It breaks my heart to think that parents worry about that. I see Mallory as the first blessing of my life.”
I can relate. I believe my mother was trying to spare me the difficulty of caring for a daughter, sibling, stepmother, and mother-in-law while I was working and attempting to be a decent partner to my husband. Sometimes, when there aren’t enough hours in a day, I understand her reasoning. But despite the potential overload and the inevitable challenges, I’d much rather have my brother home with me.