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).
Mary Sparkes-Merriman was born on September 18, 1965—exactly two years after her brother Pete.
Over the years, Mary joked to Pete that she was the ‘best birthday present’ he would ever receive. What began as a shared birthday and a childhood filled with laughter would become a lifelong bond, one that would be tested, deepened, and ultimately defined by love, resilience, and advocacy.
Pete had Down syndrome (DS).
When he was diagnosed with Alzheimer’s disease at the age of 55, it was Mary who became his fiercest advocate and most devoted care partner.
Growing Up
Mary was the youngest of three siblings. Joe, the eldest; Pete, the middle; and Mary, the baby sister. Her memories of childhood are filled with warmth and connection.
“We would hug each other so tight and say, ‘I’m glad to have you for my sister,’ or ‘I’m glad to have you for my brother,’” she recalled smiling. “Pete was my playmate, my best friend, my first friend.”
Growing up in the 1970s brought challenges, especially for a child with Down syndrome. Institutionalization was still common, and inclusion was only beginning to take root. Many neighborhood kids didn’t understand Pete. For much of their youth, it was Pete and Mary side by side, playing, imagining, learning.
That bond never loosened.
In Michigan, Pete attended a special education program through age 26. He cycled through classes in retail and café microbusinesses before landing his first job at McDonald’s. He loved it—and thrived. After graduation, McDonald’s kept him on. Pete worked there for over 20 years.
It was a change in management at McDonald’s that first raised red flags. Pete stopped getting scheduled for shifts, with no explanation. Their mother had recently passed away, and Pete was living at home with their father. There was no clarity, no feedback.
Through Medicaid, Pete was assigned a job coach to help him assess the situation. That coach was the first to raise the connection between Down syndrome and Alzheimer’s disease.
“No doctor had ever told us that,” Mary said. “We had no family history of Alzheimer’s, so we kind of laughed it off.”
To handle the situation, Mary and her family encouraged Pete to retire. He was celebrated by coworkers and loved ones who adored him. But behind the smiles, something had shifted.
In 2019, Pete was hospitalized with pneumonia. In the weeks that followed, Mary noticed signs she couldn’t ignore.
“He came home from the hospital and was using the phone thinking it was the TV clicker,” Mary explained. “There were additional signs of confusion, and I was like ‘okay, I can’t ignore this anymore.’”
She pushed for answers. With help from Pete’s primary care provider and a geriatrician, he underwent diagnostic testing. The result: Alzheimer’s.
Becoming an Advocate
Mary was grateful for Pete’s kind and open-minded doctors, even if they lacked experience treating individuals with Down syndrome. She began learning everything she could, joining the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and diving into research.
When the COVID-19 pandemic hit, Mary adapted. Determined to preserve Pete’s vibrant spirit, she filled his days with community art classes, virtual music therapy, and Standup for Downs Zoom sessions.
“He was just such a social person,” Mary explained. “He loved to be out; our brother Joe called him the mayor because he just schmoozed everybody he met.”
But Mary’s role quickly expanded beyond enrichment. Pete’s care needs became more complex. In late 2023, she noticed what she believed to be myoclonic seizures, sudden jerks often associated with dementia, occurring when he transitioned from sleep to wake.
Suspecting facility staff weren’t reporting them, she spent the night to observe. Sure enough, she witnessed one herself.
When she tried to explain what she saw to the staffing agency, her concerns were dismissed.
“They didn’t want my input,” she said. “They wanted full control. Pete wasn’t a burden to me. But I shouldn’t have had to fight so hard for someone I loved. That was the burden.”
And still, she fought.
She worked with doctors to adjust his medication schedule. She ensured Pete was fitted for hearing aids, coordinated his cataract surgery, and handled every detail with care and precision.
Mary acknowledges she had more time and resources than many families. With the ability to retire early, and a supportive husband by her side, she prioritized Pete. When the emotional toll grew too heavy, she began grief counseling.
“I felt so angry, so helpless,” she said. “There were moments I told myself, ‘This doesn’t even feel like love anymore.’ But it had to be. Because I wouldn’t have done this for anyone else. I loved him with my whole heart and soul.”
For Other Families
Mary’s most powerful advice? Plan ahead.
Whether it’s medical directives or palliative care, start early.
As Pete’s condition worsened, she switched hospice providers in search of more compassionate support. She minimized traumatic medical tests, especially because Pete had anxiety. She leaned on experts like Seth Keller, MD, and shared resources from the NTG with Pete’s clinicians.
One of the most effective tools? A photo album.
Showing hospital staff pictures of Pete smiling, working, and living fully helped them see the person, not just the patient.
Pete lived for five years after his Alzheimer’s diagnosis.
After his passing, Mary compiled a detailed timeline of his final eleven days by cross-referencing hospice notes, messages, and her own memories. She hopes the record will help researchers better understand Alzheimer’s in individuals with Down syndrome.
The birthday bond between Mary and Pete never faded. It only grew deeper, more courageous, and more powerful with time.
