Minden Hills author Fay Martin writes to figure out what she is thinking.
The creator of the soon-to-be released Dementia Widow is asked if penning her memoir was therapeutic in the aftermath of her husband Michael’s death in 2020.
“Writing it was very therapeutic. I learned to love him again through writing it because that goes bye bye,” she said in a recent interview.
Martin said she diagnosed Michael in 2005, although it took the medical profession until 2013 to make it formal. One of the themes of her book – about being a caregiver to Michael for 15 years – is her perception of an inadequate diagnosis system.
She said she knew something was wrong because Michael was being a “jerk,” and not behaving like the man she had married. She calls it the eight bad years in the book. She described the behaviour as micromanaging, taking her ideas and adopting them as his own, and being mean to her in private. Once, he told her to shut up in public. There were arguments behind closed doors.
At one point during a stressful family road trip, she pulled the car over, planning to chuck the car keys somewhere and just walk away. It wasn’t the first time she thought about leaving.
“When I figured out he had dementia, I told myself, ‘okay, you have to decide. Are you going to hang in? If you are, you’re going to do a good job. If you’re not, bail now so he’s got time to make arrangements.”
She opted to stay, realizing he was never going to be the husband he had been before. “Kind of like Prime Minister Mark Carney’s speech to the World Economic Forum, “the world order has changed. Figure out what you are going to do moving forward, then do it. That is exactly how I felt. I’m not a wife any more, I’m a caregiver. I can do caregiving. I was a mother, a caregiver when he had cancer.
“Once he was assured I was hanging in there for him, to do what was needed to have a last chapter, he settled.”
She said Michael was not completely incapacitated. There was “flickering” or times he was there and times he was not. “As a caregiver, your job is to keep them functioning as well as they can for as long as they can.” She would grieve when realizing something was gone in him, only to have it come back the next day, asking herself what she should be doing to keep that around. “Then it’s gone again. After a while, you think ‘to hell with this grieving bit. I’m just surfing’.”
Michael’s work in those years he retired to his office was to take a song off YouTube and a photo and write a 50-word explanation of what the song meant to him. “He was able to keep care of himself until the week before he died,” Martin said.
Hour of his death
Martin doesn’t shy away from talking about his death. She said Michael’s sister had urged her and Michael’s daughter to recite the Catholic Hail Mary prayer on his death bed at home. She said, as protestants, they practiced beforehand to get the cadence right.
As they said the prayer, Michael asked Fay what was happening. She told him she thought it was the hour of his death.
She said Michael, “just curiously walked over the portal” as if pondering, “what’s through that door? He let go of my hand and stepped through the portal. It was beautiful.” Her goal had been to give him that kind of passing.
Martin did her Bachelor of Fine Arts as she wrote the memoir. She said the book “was to figure out what the hell had happened. The second reason was for other people, “because caregiving for someone with dementia is lonely. I thought if I could do something that would help people who are where I have been feel less lonely, at least say ‘I see you. I’ve been there. I know what you’re going through to some extent’.”
It’s taken about five years to write the memoir. It required going through 46 years of their life together. At one point, the project’s structure required myriad Post-its on a wall.
“That kind of review of your life is cathartic,” Martin said.
As a social worker by training, she was used to writing case histories. She calls her memoir “just an excruciatingly honest single case history.”
That case history will soon be in the hands of readers. The book will be launched at Rails End Gallery March 6, 3-5 p.m.
Martin said she knew the book was ready for consumption after a life-changing trip to the Netherlands with McMaster University and visiting Green Care Homes for people with dementia. Folks in fifth stage dementia were puttering around in their life. She said the homes’ philosophies were: nurture independence, find joy and purpose every day, and live until you die.
“Have I accomplished what I was put on earth to accomplish? Have I done my job? If I have joy and purpose every day, I’m good. When there isn’t, I’m ready to go.”
