Caregiver Solutions - Summer 2017

Ode To Joy (And Sorrow)

Stephen Trumper 2017-06-09 04:39:12

It starts with a small wedding… Our wedding day, September 3, 1981. Actually, it was more like semi-elopement day as we had made a quick decision to marry and all we desired was a quiet, private ceremony in Toronto with a minimum of fuss and guests. On my side: My father, sister and my dad’s second wife. On Judy’s side: Her brother, sisterin- law and good friend Donna, a photographer. Nobody else knew—with the one exception of Judy’s mom, who was caring for her husband, who had Alzheimer’s, at their Cobourg home about 90 minutes away and the location for our microreception. It was, using my father’s memorable phrase, “a bright, shiny, copper-penny day”—a term he would often use on days of particular beauty, hope and promise. At the City Hall chapel and throughout our festivities, my new bride was aglow with happiness and stayed by my side, making sure I didn’t go poof and somehow magically disappear. I cried when the minister read some words from my father about how full of joy my mother would have been if she had lived to see this ceremony. I didn’t mess up my vows (nor did I trip or lose my balance) and the micro-reception was delightful, even with serious illness in the house, a situation my wife handled with her customary grace and thoughtfulness, effortlessly helping her father, mother and me. But then, on return to Toronto, a shock: One of the cars left behind in favour of convivial group travelling had been ransacked and our luggage for our New York honeymoon was gone. Later (after talking to the police, going back to our apartment for plan B clothes and checking into our hotel), we sat in the comfortable confines of our room, sipping champagne, eating an expanse of cheeses, pâtés and fruits, and looking back on the day. In many ways, said Judy, our wedding celebration was a perfect synthesis of married life—stress, joy, sadness, love, nerves, the unexpected, family, illness… Judy went on to talk briefly about the “in sickness and in health” example set by her parents. Her mom was stalwart in the role of chief caregiver to her ailing husband. Whenever my wife talks of serious concerns she speaks quietly and slowly, in an almost halting manner, carefully choosing each word without ever quite losing her intoxicating smile. It is one of the 36 million reasons why I love her so deeply. Lest the night get too gloomy, Judy refilled our glasses and spoke in wonder of her mother, who had managed to get a tiered wedding cake, albeit a small one, at short notice in such a semi-rural area. We toasted her, Judy’s dad, my parents and, many times, ourselves. It is memories like this that sustain the heart and soul during difficult days. I have lost count of the number of times I have thought about our wedding in the almost four years since my Judy was diagnosed with early-onset Alzheimer’s disease. None of it has been easy, although I am thankful for Judy’s slow-moving deterioration, which has given us time to discuss the possibilities that may await and what her preferences would be. There was one thing she was particularly adamant about: No adult day classes, she said, “Where they make you do children’s things.” My Judy has never been a group person. She mostly enjoys her own company, particularly when working in her studio on the collages and dolls that grace our walls. Nowadays, however, she has great difficulty stringing more than a few words together. It is not safe for her to be alone. Her days of creating with paper, clay, canvas, ink, glue and paint are over; I’m not sure she even realizes that the artist who produced the works on the walls she walks past dozens of times a day is her. As for her husband of 36 years— she does recognize me, sometimes. More importantly, I always recognize her and the plight she and we are in. Although I find it incredibly frustrating not to be able to help her physically, I never forget that Judy’s own frustration levels must be so much higher. Yet day after day she keeps her composure, willing herself to keep moving forward against impossible odds. I love her for that, too. And as much as I reflect on our memorable wedding day, I think more about the morning after Judy received the Alzheimer’s diagnosis. As we lay on our bed, still in shock, Judy squeezed my hand and quietly, softly stated: “Well, that’s life. Things come and things go.” There it was, in eight short words: Her somber acceptance that she would follow in the footsteps of her father, and an example to me of how to accept dealing with a disease that may well bring an early demise. Poof. Stephen Trumper serves on the board of the Canadian Abilities Foundation. He is also a journalism instructor at Ryerson University.

Published by BCS Communications, Ltd. View All Articles.

This page can be found at http://publications.caregiversolutions.ca/article/Ode+To+Joy+%28And+Sorrow%29/2809570/415997/article.html.