"You would never know Marie had a terminal illness early on," Paul recalls. "Her main symptom was that arm twitch, and it was barely noticeable to most."
Determined to help his wife, Paul scoured the internet for clinical trials and treatment options. Through the Mayo Clinic, Paul connected with Dr. Stephen Salloway at Butler Hospital's Memory and Aging Program (MAP) in Providence, RI. Despite Marie's relatively good cognitive condition at the time, Dr. Salloway welcomed her into the program's studies.
"That gave us tremendous hope," says Paul, who left his career as an insurance technology executive to become Marie's caregiver full time.
“The first couple of years were relatively normal,” Paul remembers. The couple made the most of their remaining time together, traveling extensively across the globe and returning to Marie's beloved Disney World.
Their daughter Jennifer would drive an hour and a half every weekend to help care for her mother, often staying overnight so her father could rest. As Marie's condition progressed, Jennifer processed her complex emotions through poetry, continuing a practice she had used since childhood to navigate life's challenges. She created 38 poems that chronicled the family’s journey with the disease.
"The poems became a way for our extended family to process their feelings, too," Jennifer explains. Her poetry became a “springboard for friends and family to ask questions and share their thoughts,” and ultimately, find connection and process their grief.
Marie participated in a Biogen clinical trial at MAP for about two years, until travel became too difficult for her. While the family notes that the treatment didn't significantly slow Marie’s decline, Jennifer found hope in the possibility that their participation might help advance research for better treatments.
The family praised the compassionate care they received at MAP. “Everyone was very kind, very supportive, very helpful,” Paul recalls. “Marie enjoyed it.” Paul and Marie even shared their story at one of Dr. Salloway's lectures at Brown University to help other families facing similar challenges.
Throughout her illness, Marie maintained her characteristic grace and kindness. Jennifer notes that even as her mother eventually lost the ability to recognize her family members, she remained gentle and loving.
Marie passed away peacefully at home on April 12, 2016, at age 63. Now, nearly eight years later, Jennifer has compiled her poems into a book titled “When Words Disappear: Poetry and Reflections from Caregiving and Beyond.” The book, published on March 1, 2025, chronicles her journey through caregiving, grief, and ultimately finding peace.
Paul says the encouragement of the doctors, nurses, and staff at MAP helped the family to recognize how sharing such intimate experiences could help others facing similar challenges, is what ultimately made the book possible.
“I want people to understand that they aren't alone," Jennifer says. Her father echoes this sentiment, hoping the book will provide comfort to other families navigating the devastating impact of early-onset Alzheimer’s. “If it helps one person, it will be worth the effort," Paul says.
The poems trace the family's experience from early diagnosis through their final goodbyes, capturing moments both heartbreaking and tender. In addition to writing, Jennifer found solace in Kundalini yoga, especially the final savasana pose, which brought her a profound sense of connection to her mother's spirit.
The Theriault family's story illustrates both the devastating impact of early-onset Alzheimer’s and the power of hope, love, and creative expression in navigating loss. Through Jennifer's poetry and their continued connection to the Memory and Aging Program, they transform their personal journey into a source of comfort and understanding for others facing similar challenges.
Marie's legacy lives on not only through her family's memories but also through their commitment to supporting dementia research and helping other families find their way through the darkness of diagnosis to moments of light and healing.
"Hope can coexist with heartache," Jennifer reflects, channeling the spirit of resilience that characterized her mother's life and her family's journey through loss and recovery.
Jennifer’s book “When Words Disappear: Poetry and Reflections from Caregiving and Beyond” is available for purchase at major online retailers.
{Poem from Marie’s Book}
When
When you think of me at the end
Remember me at the beginning
In your mind’s eye
Picture a baby squalling
For the first time
Feeling cold
Breathing air
Seeing light
This world is a wheel
We don’t choose the turning
Writing our destiny
Fate is the gift
Of the gods
Release your grip
On my body
Our human limits
It is my soul
You will hold again