One woman’s legacy: A book that helps children understand dementia

Patricia Edwards, known to her family as Grammy P, holds the book her daughter and
granddaughter wrote to explain dementia to children. (Photo courtesy of Simone Morris)

In families with young children, a loved one’s dementia is often discussed behind closed doors. But for Norwalker Simone Morris, including her daughter, Millie, was essential for her family to cope with the declining memory of their beloved Grammy P.

Simone’s mother, Patricia Edwards, immigrated from Jamaica when she was 35. She made her home in Stamford and devoted her life to caring for others, first as a nurse’s aide at St. Joseph Medical Center in Stamford, and in later years, as a children’s nanny and a caregiver for elders. Grammy P had ample love to give, says Simone, an entrepreneur, who was one of six children. “My mother was all about family.”

She was also “very social,” Simone says. “She never drove, but she was very independent moving about town.” Her deep familiarity with Stamford was evident in the way she committed the bus routes and drivers to memory. The drivers all knew her name, too.

The first time Simone recognized something was different about her mother was a moment “I’ll never forget. We were in Stamford, in Columbus Circle, and my mom knew Stamford like the back of her hand. We went to visit my friend’s business, but when we came out, she looked around. I saw that she was confused, but she covered it up. But that moment signaled to me that something was off.”

Her condition worsened, with her memory fading. In 2016, at the age of 78, she was diagnosed with Alzheimer’s. “It was a rough journey. It isa rough journey. That disease is so devastating to families,” Simone says. “It is the process of losing your loved one in front of you. And that’s the heart-wrenching piece of it. You just see them slipping away, and it’s a slow process. It’s like a repetitive loss. Each interaction with my mom was a repetitive reminder.”

Once the disease began to affect Grammy P’s cognition and behavior, she came to stay with Simone, her husband, Stephen, and Millie on weekends. After dinner one night, the family decided to play Trouble, a game Grammy P knew well. However, each time it was her turn, she sat quietly, looking at the board. As her dementia became undeniable, Simone and Stephen noticed Millie’s awareness of her grandmother’s changing behavior, yet she couldn’t grasp the reasons behind it.

Thus, the storyline for Remember Me, Grammy P was set. “I thought, how about we tell this story? And recognize that kids go through the journey, too, not just the adults,” Simone says. “Because we were going through the journey, but she was just along for the ride, and we weren’t stopping to get her up to speed. We had to meet her where she was, as a younger child, and answer questions in a way that resonated with her.”

Having pondered the idea of a book for several months, Simone began writing it on a plane, en route to a family wedding. It was a particularly stressful time for the family, with Grammy P hospitalized due to her condition.

The book tells the story of the night Grammy P forgot how to play Trouble, and how Simone and Stephen explained the situation to their daughter: “It’s like no matter how many memories they put in, the memories kind of drain out the bottom.”

Grammy P had instilled the importance of love within the family through her lifelong commitment to caring for others. Once she became ill, the family had to adjust. “Because of the changes, we’re going to have to learn to love Grammy P a different way, in a way she can receive,” Simone explained to Millie.

They showed their unconditional love for Grammy P through patience and kindness. Simone says she would rub her mother’s hair and kiss her forehead. She would sit and watch TV with her, episodes of Joel Osteen, Guy’s Grocery Games, and Grammy’s favorite, Young Sheldon. She talked to her mother, even though she couldn’t respond. Simone cherished the moments spent in her mother’s company, even when Grammy P would occasionally glance over, having seemingly forgotten her daughter’s face. Yet amid these lapses, there were still tender moments, when Grammy P would smile, offering glimpses of recognition and affection. “Sometimes she would squeeze my hand, and I would squeeze back. It was just a little juice to keep going.”

Grammy P’s battle with Alzheimer’s taught the family there is strength in vulnerability. Simone, a coach, trainer, speaker, podcaster, and author, realized people wanted to help “if I was willing to be vulnerable, which took a long time because I was processing, and it was a hard thing to share.”

Once she began, though, she encountered many others who could relate and offer valuable insights from their own experience with this challenging disease.

Millie offered her mother a shoulder to cry on, saying, “It’s okay, Mommy.” 

She also played a significant role in keeping the book authentic to their family. “She was very opinionated about the book. She went through the whole illustration process to say, ‘I wouldn’t wear my hair like that, I need earrings. That’s not how I wear my backpack.’ She was very influential in the look of the book. And she would say to me, ‘I would never say that on the playground, Mommy,’ and ‘Grammy didn’t say that.’” Keeping Millie involved was very important to Simone. “I want her to feel proud, that her voice is heard, and that she is a big part of the process.”

Haitian artist Audeva Joseph illustrated the book. Simone and Audeva had worked together on Simone’s first book, Charlotte Wants a B.F.F. Simone discovered Audeva’s works years ago and reached out to her. The two hit it off immediately. It was Audeva’s idea to include Millie’s drawings as well.

Simone describes the writing process as “cathartic.” The book was released on February 10, 2024, the day before Grammy P passed away.  “It just makes me feel like we are honoring her legacy and telling her story in a beautiful way that will help other families,” said Simone, “I feel like it’s so pervasive, and so many people are impacted by it.” Millie, who just turned 9, showed Grammy P the book before she passed, and while Grammy couldn’t communicate, Simone said, “She looked at my daughter, her granddaughter, with complete wonder, and for me, that’s communication.”

The book has received lots of praise, from Millie’s third-grade classmates at Concord Magnet School to family friends, and other families facing the challenges of the disease sometimes called “the long goodbye.” “It touches my heart that there is a piece of my mom’s legacy that lives on in the book. And that people will remember Grammy P, even though the book is called Remember Me, Grammy P,” Simone says. 

Simone and Millie plan to write a second book together, inspired by Millie’s experience as the only little girl of color at summer camp. They have once again reached out to Audeva for illustrations.  

Remember Me, Grammy P. explains dementia in a way children can understand. It also includes games, resources, and advice on how to care for a loved one with Alzheimer’s. Simone describes it as a conversation starter for families. The word “dementia” is now a regular part of Millie’s vocabulary as she better understands the disease. “I wish dementia didn’t take Grammy from us,” she says.

The book has achieved its purpose by showing how to involve children in conversations about what is happening around them. “When I hear her talking and using the language, I just want to cry. It’s a journey, it’s still a hard loss,” Simone says.

Simone encourages other families “to notice the impact on the children. Give yourself grace because there is a lot to deal with. Especially if you’re in the middle, caring for both your parent and your child. Give yourself grace and be kind and compassionate to yourself. Take advantage of resources that are out there.”

Simone attended a caregiving class and set up Zoom calls with people at the Alzheimer’s Association to learn more about common dementia behaviors. These include “pocketing” food: i.e., holding food in the cheeks or the back of the mouth instead of swallowing it, which tends to happen when people with Alzheimer’s become tired or distracted, or have trouble swallowing. “I was learning things I could feed back to my mother’s aides,” Simone says.

The family continues to grieve the loss of Grammy P, cherishing the memories of her love, her exceptional cooking, and the many trips they shared with her to Calf Pasture Beach. Grammy P’s legacy lives on in these treasured memories, and the family’s bond grows stronger as they honor her memory and support one another through their grief.

To keep her spirit alive, Simone cooks her mother’s fried dumplings and works at mastering her Jamaican rice and peas. “She really loved (Stephen’s) cooking, and in fact, when I made a yummy dish, she would assume he made it. To his credit, he would always sing my cooking praises to her. He lost his mom, so had a special relationship with my mom.”

Simone, Stephen, and Millie will participate in the Alzheimer’s Association Walk in October at Calf Pasture Beach. The location, where they shared so many special moments with Grammy P, will serve as the perfect backdrop to honor her memory.

Additional information and resources, as well as the book, can be found at the link below:  https://www.simonemorrisenterprises.org/remember-me-grammy-p


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