Norwalk family copes with 'Grammy P's' dementia diagnosis, death through new children's book

Apr. 16—NORWALK — Millie Walton, 8, has an infectious toothy smile that crinkles the corners of her eyes that bear a warm twinkle.

Millie, who speaks with an emotional intelligence that often lends itself to eloquence, radiates joy despite the fact that her grandmother, fondly called Grammy P., died in February at 85.

"What I miss most is seeing her smile and just hearing her talk, using different ways to communicate, hearing her voice and looking into her eyes," Millie said of her grandmother, Patricia Edwards, last month. "Even if she just hugged me, it would make my day."

Millie loves drawing, her family, and Calf Pasture Beach — where she would often spend time with her grandmother, who had dementia, a disease afflicts about 76,800 people aged 65 and up in Connecticut, the Alzheimer's Association reports.

Spending time with her grandmother is the premise of a children's book that Millie and her mother, Simone Morris, wrote together: "Remember Me, Grammy P." The book shows how a family adapts to the ways dementia can turn interpersonal dynamics on their head— but also serves as a guide in how to discuss dementia with children.

Illustrations by Haitian artist, Audeva Joseph, populate the book that features Millie's drawings within its pages, hidden like Easter eggs.

A day in the life

In the book, Morris picks up Millie from school, joining her father and Grammy P. at home for dinner and a game of board game Trouble.

The book positions Grammy P.'s cognitive decline, where she forgets how to roll a die and the rules of the game, at the intersection of Millie's developing awareness and understandable frustrations toward her grandmother's changing abilities.

When the family started playing Trouble, Millie and her parents rolled the die, "but when it came to Grammy P.'s turn, she seemed to have forgotten how to," the book said.

"Grammy P. looked baffled when it was her turn to play the game," the book said.

At the beginning of "Remember Me, Grammy P.," Millie doesn't yet know her grandmother had dementia. After the game of Trouble, Millie's parents decide it's time to break the news.

"It's like no matter how many memories they put in (Grammy P.), the memories kind of drain out the bottom," Millie's parents explained to her after the game of Trouble.

"Remember Me, Grammy P." lays out the changes an elder can face in dementia.

"It's called dementia, which means gradual memory loss, loss of sense of smell and taste, lack of desire for activities, loss of ability to walk or move around, and loss of ability to take care of yourself. Grammy P. will need help eating, bathing, brushing her teeth, and going to the bathroom one day," the book said.

Morris said that including her daughter in the writing and editorial process was a given.

"We never said 'dementia' (before)," Morris said. "And the book is really about acknowledging, accepting dementia if the elders in the family are dealing with this declining disease. (But) we weren't talking about it. It was impacting her and she was seeing it."

Coping with dementia

Having conversations about dementia is tough, but important, Morris said. Kristen Cusato, communications director at the Alzheimer's Association Connecticut Chapter, agreed. Cusato's mother also had dementia before she died.

"What people need to understand is that when people have this disease and they appear to be giving you a hard time, they're not giving you a hard time. They're having a hard time. They're having a hard time understanding what you're saying. You may be speaking too fast, you may be giving them too many things at once. It's a processing disease."

Cusato said that being patient and understanding is crucial when coping with dementia — but that means having patience for both the afflicted family member and oneself.

"We're always into really making sure the caregivers take care of themselves because if they don't take their oxygen first, they won't be in a good place to take care of their loved ones, right?" the communications director said.

Slow losses

Dementia is a degenerative brain disease that causes the slow loss of a person, bit by bit, day by day.

Millie saw those losses in action.

"She would forget who I am," she said. "It would frustrate me and sometimes she would forget who my mom is. It was pretty frustrating because she couldn't remember everything."

Despite frustrations, Millie and her parents exemplified the kindness Cusato advocated: in the book, when they began the game of Trouble, Millie's father explained the rules for everyone, even though the only one in need of hearing them was Grammy P.

When Grammy P. got confused upon her turn, Morris gently explained the rules again. When Millie's parents explained dementia to Millie, they said "we need to love on Grammy P. extra hard as this is a very difficult disease."

The disease is one that results in a number of losses, Cusato said. Instead of a grandparent getting to relish in the joys of being a secondary caretaker to their grandchild — and a parent getting to share in that joy, partnership, and convenience — the parent then often becomes caretaker to another dependent.

"It's kind of managing care for people that would take care of themselves and then raising their kids (too)," Cusato said.

Morris agreed.

"It's just an ongoing grief for the loss of the person that you knew," Morris said. "The way they were and they're still there. The person is presented in different ways. So, it's really a hard pill to swallow."

But kindness and patience are the way to go, Cusato and Morris said. And while families face losses daily when a family member has dementia, they also stand to gain another community.

The Alzheimer's Association Connecticut Chapter, which Morris' book references, hosts supportive programming to help families affected by dementia: support groups, message boards, consultations and a 24/7 helpline are just some resources families' disposal.

Cusato said that while the impacts of dementia can feel isolating, families and caregivers are not alone.

To learn more about dementia or to access resources, call the Alzheimer's Association helpline at (800) 272-3900 and read Cusato's informational ABC's of Alzheimer's and Dementia for Caregivers. To get involved, learn more about the Fairfield County Walk to End Alzheimer's here.

To purchase a copy of "Remember Me, Grammy P.," published by Morris' business, Simone Morris Enterprises, or to learn more, visit remembermegrammyp.com.

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