Nova Scotia

These brothers wrote the kids' book they wish they'd had when their grandmother got Alzheimer's

A Nova Scotia family decided to create a book about Alzheimer's disease, written for children by children, after their own two boys found there were few resources to help them understand their grandmother's illness.

Alex and Ben Kennedy found few resources for kids whose grandparents were changed by the disease

Alex, Marie and Ben Kennedy published a children's book this month about their family's experience with Alzheimer's to help other kids better understand the disease. (Submitted by Marie Kennedy)

Marie Kennedy still remembers driving home from the long-term care centre in Sherbooke, N.S., as her children asked why their grandmother could no longer remember their names.

That conversation a decade ago and the ones that followed were hard ones.

Their grandmother's heart, Kennedy told her sons, was undiminished — inside it lay a love just as fierce as when she'd proudly held their hands on a walk.

Her brain "full of bright lights," however, was being dimmed by a disease called Alzheimer's.

"They had a hard time trying to understand what was going on, why I was so sad, why my mom didn't remember who they were," Kennedy said. "So we were driving home from one of our visits [and] I think one of the kids said, 'You know, this is hard,' and I said, 'You know what? Maybe we need to write something about this.'"

The book It's Going to Be OK was illustrated by Meaghan Smith. (Meaghan Smith/It's Going to Be OK)

At the time, Alex and Ben were 10 and seven, respectively.

They say the explanations their mother gave them form the core of the book they all went on to write.

They wrote it, they say, because it's exactly what they would have wanted to read at the time — but found their parents were the sole source of support and education about their grandmother's illness.

"It was really hard for me, the transition from her recognizing me to the point where she didn't really remember my name," Alex said. "I didn't understand it at 10 years old, how someone's brain could go to that."

That was in 2012. Later that year, Kennedy's grandmother, Ruby MacLeod, died.

Careers, school and family life in Lochaber, N.S., have kept them busy in the intervening years, but they continued to write and kept searching for a publisher.

With the encouragement of Nova Scotia children's author Sheree Fitch, they decided to self-publish the book, with singer-songwriter Meaghan Smith capturing the family in her illustrations.

In this 2012 photo, Ben and Alex Kennedy, right, sit with their grandmother, Ruby MacLeod. MacLeod developed Alzheimer's disease and the brothers have since written a book about it. (Submitted by Marie Kennedy)

The book launched this week, called It's Going to Be OK: Our Family's Journey with Alzheimer's.

It's written for children by children using the same clear and honest language that helped Alex and Ben, now 20 and 17, respectively, to understand what was happening to their grandmother.

Marie Kennedy, a school counsellor at Saint Andrew Junior School in Antigonish, N.S., has already used the book with students who have a grandparent that's been diagnosed with Alzheimer's. 

"It's a hard conversation to have … but I do feel that as a resource it's going to be helpful for kids," she said. "I think kids deserve to understand what's going on with their grandparents, but at their developmental level."

The book can be purchased online and, one day, the family hopes it might become part of the Nova Scotia education curriculum.