Charlottetown resident John Flood, who sits alone now that his wife has moved into a professional care facility for Alzheimer’s, advocates for the therapeutic properties of healing through writing.
©Guardian photo by Emma Childs
Within the walls of the small house in Charlottetown, only five have shown up to the volunteer meeting for the Alzheimer’s Society of P.E.I.
One person sits relaxed and composed on the corner of the couch by the window and says nothing until he is called upon. John Flood is his name, and his wife has had dementia for more than 10 years.
It was at the former Rollaway dance club on Lower Grafton Street in Charlottetown where Flood met his partner decades ago.
“That’s where I first saw Eileen,” he smiled. “I saw her dancing with another fellow and I thought, ‘wow... would I ever like to dance with her.’”
Flood mustered up the courage to ask and “that was it.” Shortly after, Eileen and John were married.
Life carried the pair to a number of different cities throughout Canada, in which Flood described Eileen as “a really carefree, fun-loving, wonderful, loveable person.”
The signs of Alzheimer’s came when Eileen was just 50 years old. Small words escaped her memory as she spoke.
“She was reaching for those words and couldn’t find them,” said Flood.
Over time, she was forgetting “certain things, certain histories, certain elements” of their lives together.
After five years of decline, the pair moved back to Charlottetown where they’d met, where they’d married and where they’d spend their final years with one another.
“The first two years were lovely,” said Flood.
But their time together took a turn, as dementia will do, when Eileen began clinging onto her clothes for extended periods of time and refusing to put them down.
“These are elements of what she knew identified her own self to herself, and she didn’t want to let go of them,” explained Flood.
She lost the ability to form sentences and words almost entirely. Flood struggled with the decision to move her from their home on Grafton Street into a professional care unit until the day he asked, “Eileen, would you like to go to the doctor?”
“Yes. Doctor. Doctor,” was the response.
Today, the effects of primary progressive aphasia have their hold on Eileen. She cannot speak and can hardly move any muscles on her own. She sits in a wheelchair, and her transition to and from bed is done using a sling to support her body weight.
But Flood’s face warms when he talks about her. His voice is not laced with sadness or despair, but with such fondness that one might believe Eileen had never had Alzheimer’s to begin with.
“I visit her every day to help feed her and be there for her and bring joy to her life,” he smiled. “Quite simply because it’s a way of receiving back what she’s given me over all those 45 years of marriage.”
One of his fondest memories came from a visit that started off like any other. In the process of removing his jacket and overshoes, he noticed Eileen’s eyes scanning the busy room in which she was seated. Her eyes fell on Flood and her face erupted in a smile. As she beamed, Flood realized that Eileen was recognizing him.
“That moment I realized that I was witnessing what I would call a form of epiphany in Eileen,” said Flood. “That was a moment where life was full again. Life was meaningful and life was beautiful ... you could see it in her eyes.”
“I realized that wow ... this is not something that you can sit on and just cherish privately, it justifies itself being rendered into a poem,” he said. When a poem did not accurately capture the moment, Flood wrote about it in prose.
Flood says these moments come in crests and troughs; good moments and bad moments, a stream of struggle “penetrated with moments of glee.” He believes that channelling these moments through writing can create a sense of understanding and acceptance between the writer, the companion and the subject of dementia itself, providing “a springboard to accepting the stigma and seeing beyond it.”
Flood reads his prose at the meeting, ending with the lines: “Where do you find the strength and energy to continue looking forward to the next ephemeral instant of happiness that makes the agonizing hours in between tolerable and even worthwhile? In my case, as long as I can conjure up the image of Eileen smiling, I will be content. I call that gift ... Smileen.”
The meeting has drawn five who sit and listen and say little, but five who have been affected, who have digested the implications of dementia and who have committed their time to the cause.
“It’s not an easy task to be a caregiver ... and it’s not easy to identify (Alzheimer’s), because we want to live the dream. We want to live out that life together, as promised in our wedding vows, for as long as possible,” said Flood.
“The real key to doing all of this is remaining positive,” he concluded. “It’s not something we choose, but you can choose to embrace it.”