I’ve always had a really bad memory. So when my mother got Alzheimer’s disease, I knew that I had to record what was happening to her and to our family. I wanted to be able to look back over my notes and remember all the moments of craziness, beauty, and tragedy—and not lose any of them.
Mom started showing symptoms of Alzheimer’s in 1996, when she was only 52. Our family ran through all the possible explanations—job loss, depression, menopause—until finally we realized it must be something neurological. She was diagnosed with Alzheimer’s in 1998. For the next six years my father cared for her, eventually with the help of hired caregivers. Mom’s sisters, Debbie and Sukey, and my sister Hannah and I helped as much as we could.
I lived in Vancouver and my parents lived in Fredericton, New Brunswick. I visited two or three times a year, and took notes and drew pictures the whole time I was there.
I often felt like Harriet the Spy, or, in darker moments, like a vulture hovering and waiting for Mom to say or do something that I could record and preserve, even as she slipped away from me. Sometimes she would pull on the page or grab my pen as I tried to write. The pen would skid and make a mark and I’d label the mark: ‘‘Mom moved my pen.’’ I wanted to keep every trace of her.
I ended up with a box of notes and sketches, some careful and considered, some dashed off in the middle of a crisis and barely legible or blotched with dried tears. There are small notes I made on scraps of paper right as things were happening, like at the dinner table when Mom started talking to the broccoli.
During Mom’s illness, I started using some of my notes to write stories and essays about what was happening. I imagined writing a book. About nine months after Mom died I went through the journals, sketchbooks, and scraps of paper I’d collected over the six years of her illness. I chose a small number of drawings and notes, compiled them into a booklet, and made a few colour copies. I realized that instead of writing prose about my mother I wanted to do a graphic memoir, and I spent the next four years writing and drawing this book.
My mother loved her family with a fierce and absolute love. Alzheimer’s disease tore her away from us and from herself in a cruel, relentless progression of losses. But even as she lost her ability to form sentences, and stopped saying our names, and stopped understanding ideas like sister, daughter, or husband, she would still cry out with joy when we came into the room.
I created this book to remember her as she was before she got sick, but also to remember her as she was during her illness, the ways in which she was transformed and the ways in which parts of her endured. As my mother changed, I changed too, forced to reconsider my own identity as a daughter and as an adult and to recreate my relationship with my mother.
This is the story that I have pieced together from my memories, my notes, and my sketches. Other people in my family may remember things differently. In the end, this is only my story: the tangled story of my mother, and me, and Alzheimer’s.
Sarah Leavitt, Vancouver, March 2010
Reprinted here with the permission of Sarah Leavitt and Freehand Books.
Read my interview with Sarah on this website.