Marie Kennedy still remembers coming home from the long-term care center in Sherbrooke, Nova Scotia, when her children asked her why their grandmother couldn’t remember their names.
This conversation ten years ago and the ones that followed have been difficult.
Their grandmother’s heart, Kennedy told his sons, had not diminished – inside him resided a love just as fierce as when she proudly held their hands on a walk.
His brain “full of bright lights”, however, was clouded by a disease called Alzheimer’s.
âThey had a hard time trying to figure out what was going on, why I was so sad, why my mother couldn’t remember who they were,â Kennedy said. “So we were driving home from one of our tours [and] I think one of the kids said, âYou know, it’s hardâ and I said, âYou know what? Maybe we need to write something about it. ‘”
At the time, Alex and Ben were 10 and 7 years old, respectively.
They say the explanations their mother gave them is the heart of the book they all wrote.
They wrote it, they say, because it is exactly what they would have liked to read at the time – but found that their parents were the only source of support and education about their grown-up’s illness. -mother.
âIt was really tough for me, the transition from being recognized to the point where she couldn’t really remember my name,â Alex said. “I didn’t understand at 10 how someone’s brain could do this.”
It was 2012. Later that year, Kennedy’s grandmother, Ruby MacLeod, passed away.
Careers, school, and family life in Lochaber, Nova Scotia kept them busy in the years that followed, but they continued to write and seek a publisher.
With encouragement from 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.
The book launched this week, titled It’s gonna be alright: our family’s journey with Alzheimer’s disease.
It’s written for kids by kids using the same clear and honest language that helped Alex and Ben, aged 20 and 17, respectively, understand what was happening to their grandmother.
Marie Kennedy, a school counselor at Saint Andrew Junior School in Antigonish, Nova Scotia, has previously used the book with students whose grandparents have been diagnosed with Alzheimer’s disease.
âIt’s a tough conversation to haveâ¦ but I think as a resource it’s going to be useful for the kids,â she said. “I think children deserve to understand what is going on with their grandparents, but at their level of development.”
The book can be purchased online, and one day the family hopes it can become part of the Nova Scotia curriculum.