Take Her Home & Love Her

By Meghan McCarthy

Editor’s Note: This article is part of the Disability and Dementia Series, an ongoing project highlighting the experiences of individuals with intellectual disabilities who are affected by Alzheimer’s disease and related dementias (ADRDs).

“Take her home and love her.”

That was the advice Ellen Boyle’s parents received the day she was born, a simple but radical directive in 1965. Ellen had just been diagnosed with Down syndrome (DS), and in a time when institutionalization was often recommended, one pediatrician offered a different path. Take her home. Love her.

And they did.

A Sunday Birth 
Ellen was born on a Sunday to an Irish Catholic family in New Jersey. Her father, Jack, worked as a sheet metal foreman in Newark. Her mother, Eleanor, had three older children—Mary, Jane, and John—when she became pregnant at 39.

After Eleanor gave birth, Jack arrived at the hospital and was met with silence. The obstetrician wouldn’t explain what had happened, and fear took hold. In a moment of grace, he crossed paths with the family’s pediatrician, who went to find answers.

“She has Down syndrome,” the pediatrician eventually told him. “People will give you all kinds of advice. You can run around creation and get all kinds of opinions. But my advice? Take her home and love her.”

A year later, John and Eleanor took their older children out to dinner. They gently informed them that Ellen had Down syndrome.

The children paused. Then, with characteristic innocence and clarity, they asked: “But, can we keep her?”

From that moment forward, Ellen brought the Boyle family together in a special way.

“Sweet, sweet Ellen became the light of our family,” her sister Jane shared fondly.

A Full Life at the Shore
Ellen was funny, social, stubborn, and quick-witted. After graduating from high school at 21, she worked for 20 years in supportive employment, most memorably running the laundry at a local lodge with a coworker who also had special needs.

“They never took a day off,” Jane remembers. “They were never late. They were professionals.”

Eventually, the family relocated to the Jersey Shore, where Ellen blossomed in a rich and joyful routine: Special Olympics basketball on Mondays, aerobics on Tuesdays, swim practice on Wednesdays, dances on Fridays, bowling on Saturdays, and church on Sundays, where she served as an altar server for over 26 years. She watched the Yankees, Giants, or Jets in between.

As her parents aged, they began planning for her future. They wanted her to remain at home, and asked Jane to be Ellen’s successor guardian after their passing.

At the time, Jane had a full life in northern New Jersey, nearly two hours away from her family’s shore home. Understanding the importance of Ellen’s routine, Jane relocated her life to support Ellen’s when her parents had both passed.

“I thought about her schedule, her community, and just knew,” she said. “So I made the leap. And I’m so glad I did.”

When Alzheimer’s Set In
Ellen Boyle was meticulously organized. Whether it was her room, her belongings, or laying out her clothes the night before, her routine gave her stability and purpose.

Suddenly, her sunglasses and phone weren’t where they should be. She didn’t want to go to Special Olympics. She wouldn’t board the bus.

Jane feared the worst. Was she hurt? Abused? After months of searching for answers, a call to the Arc of New Jersey Medical Mainstreaming program led to clarity.

“I left her a message, and she called me back in an hour, which was like a gift from God,” Jane reflects. “She knew exactly what I was talking about and gave me a list of nine referrals.”

After six months of testing and appointments, Ellen was diagnosed with Alzheimer’s disease (AD), a diagnosis that disproportionately affects individuals with Down syndrome.

Preserving Dignity Through Change
For many individuals with Down syndrome, behavioral symptoms of Alzheimer’s are mistreated as a psychiatric illness. This can be a major disservice to accessing proper care plans.

Jane fought to avoid that fate for Ellen. She built an interdisciplinary team and found that the interventions that most sustained Ellen’s quality of life came from an occupational therapist (OT).

Through the therapist, Jane learned the “Three Rules of Dementia”:

1. Less is more
2. Don’t fight with Alzheimer’s
3. “No” doesn’t mean “no”

For example, when Ellen could no longer process verbal commands, Jane learned to help her nonverbally, guiding her hand to her coat, offering gentle touch, making her laugh.

She even adapted Ellen’s environment. After discovering that the black rubber steps on the bus appeared as an abyss to Ellen, Jane went to the hardware store and applied caution tape for contrast for the bus steps.

Ellen’s advocacy went beyond the bus stop. As her disease progressed, Jane advocated fiercely against punitive measures from Ellen’s day program. Despite resistance, even dismissal from a state commissioner, Jane persisted. She transitioned Ellen into a specialized Medicaid Alzheimer’s day program and became a certified dementia-capable caregiver herself.

Ellen’s story mirrors that of many with Down syndrome and Alzheimer’s, where ignorance and prejudice affect care.

Eventually, Jane coordinated hospice care at home. Together with Ellen’s medical team and siblings, she created a POLST (Physician Order for Life-Sustaining Treatment) to guide Ellen’s peaceful passing in January 2018.

A Legacy of Love
In honoring Ellen’s life, Jane fulfilled her parents’ greatest wish: for Ellen to remain at home. She did more than that. She gave Ellen a life filled with dignity, joy, and belonging.

Since Ellen’s passing, Jane has become a fierce advocate for families navigating Down syndrome and dementia. She’s built support networks, shared resources, and continues to uplift those walking the path she once walked.

“Families devote their lives to building skills, advancing and supporting their loved ones,” Jane explained. “There is this universe of siblings who, like myself, have stepped in with their parents gone… We’ve learned so much.”

The journey wasn’t easy. But when asked if she’d do it again?

“In a heartbeat,” Jane said. “It was the most important thing I’ve ever done.”

Because someone once said, “Take her home and love her.”

And the Boyle family did, with everything they had, for the entirety of Ellen’s life. 

To learn more about the life and legacy of Ellen Boyle, please read her obituary here.

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