Alex Perron: a quest for balance between filial love and the reality of being a caregiver

“My mother has a very rare form of glaucoma,” explains Alex, sitting in the lounge of the Sainte-Anne residence in Beauport. This disease, which appeared many years ago, has gradually affected his mother Ginette’s eyesight. “I would say that at the moment she has about 15% of her sight left,” explains Alex.

Despite this difficulty, Ginette long insisted on remaining independent, even refusing to use a white cane. But this was only the prelude to a series of challenges to come.

The first signs of change were subtle. Gradually, memory loss was added to the picture. Alex remembers: “There were a few small memory lapses. Nothing too serious, but you think, ‘Oops. That’s weird’.”

Alex had to start paying more attention. “You think about it all a bit more and more often,” he explains, referring to his growing concerns, especially after the winter snowstorms. Another telltale sign: the decrease in the usual jars of spaghetti sauce and chicken pot pies that he traditionally brought back from his visits. “There was no longer that kind of natural momentum that had always been there,” Alex observes.

As these small changes accumulated over time, they gradually painted a picture of a new reality, the beginning of a process of loss of autonomy that neither Alex nor his mother had anticipated.

“Everyone is shocked when that point comes,” says Alex, his gaze lost in his memories.

In Alex’s case, as an only child brought up by a single mother, the geographical distance adds a layer of complexity to the situation. “I live in Boucherville. Even though we have close family here in Quebec City, I am her son but I am far away,” he emphasizes.

This is a reality shared by many caregivers, who must juggle their personal lives, their careers and the growing needs of an aging parent. For Alex, each trip between Boucherville and Quebec City becomes a moment of reflection, anticipation and sometimes anxiety.

One of the most difficult stages for Alex was broaching the subject of a residential home with his mother. “At first, when I brought it up, she refused point-blank,” he recalls. This initial resistance is common among the elderly, who fear losing their independence.

Alex had to show patience and understanding: “At a certain point, I had to take a step back. I had to let the idea sink in. She had to think about it for a while.”

This approach finally paid off when Ginette herself broached the subject, probably following an incident that had frightened her. “From one day to the next, suddenly, without me even bringing it up, she said to me, ‘Hey, I’m ready!’” says Alex, still surprised by this turnaround.

Once the decision was made, Alex embarked on the search for a residence suited to his mother’s needs. This process proved to be a challenge in itself. “There are many kinds of residences… and many ranges of budgets,” Alex notes.

He had to navigate between his aspirations for his mother’s comfort and the financial realities. “You have to do something like, okay, where do I stand in terms of what we can afford but also what services I want to have,” he explains.

Ultimately, Alex and his mother found the Sainte-Anne residence in Beauport, a place that met their needs and budget. “It’s perfect. It’s not too big in terms of the number of residents. It couldn’t be a better place,” Alex says with satisfaction.

One of the most difficult aspects for Alex was managing his own emotions in the face of his mother’s situation. “I left crying far too often at the beginning, far too often. I can see myself sitting here in the street, sitting in the car, bawling my eyes out for fifteen minutes,” he confides.

This grief is common among many caregivers, who have to face the progressive loss of the person they have always known. Alex has had to learn to better tame his emotions: “Now, when I get there, I tell myself it might be fun, kind of fun or not fun at all, but that’s the way it is. I’m ready for it all. I take it all in, I’ve gained some insights.”

Like other caregivers, Alex’s journey is punctuated by small bereavements.

One of the most difficult is the gradual loss of heart-to-heart communication with his mother, whose memory is deteriorating more and more.

“The biggest loss is, of course, communicating with her without really communicating that. It’s extremely difficult because I wanted to have conversations with my mother, to talk about things that are happening to me,” he shares. “I can call my mother on Sundays, and we’ll have a good conversation. I call her on Tuesdays. Sometimes she won’t remember that we spoke on Sunday, and then we can talk about the same thing again. But sometimes that’s not the case,” he explains.

This situation requires patience and understanding. Alex has learned to adapt: “I respond with the same energy. I start the same story again, with the same enthusiasm, the same sense of pleasure.”

Another significant loss concerns family traditions, especially culinary ones. “My mother was always a great cook, and that was a big part of the pleasure: giving, sharing and passing on. What makes me sad is that I’m not a very good cook, but for a long time I thought that my mother would have to show me this or that recipe,” Alex laments.

Despite the difficulties, Alex still finds moments of joy and bonding with his mother. He shares a touching memory: “We were at the table. We’re eating. It’s Christmas dinner. It’s going well. And then, suddenly, the radio comes on, and there are Christmas songs playing. My mother starts singing the French Christmas carol Petit papa Noël. The whole song: one phrase after another. She doesn’t miss a word.”

These precious moments remind Alex that despite the changes, his mother is still there, capable of moments of lucidity and emotional connection.

The transition to life in the residence has been a definite relief for Alex. The staff at the Sainte-Anne residence, especially attendants like Angie, play an important role in Ginette’s daily well-being.

Angie, resident care attendant, passionately describes her role with the residents and their families: “I am their eyes, as they say. I take care of them. I have to do visual checks. I have to change them regularly; I have to ensure they stay hydrated when it’s hot.” In addition to physical care, she also looks after the emotional well-being of the residents, organizing activities and stimulating their memory.

For those around her, Angie becomes an indispensable ally. “The relatives ask me questions to find out how they can help, because they are not there like me, eight hours a day with the residents,” he explains. This collaboration between professionals, like Angie, and caregivers, like Alex, is necessary to ensure the best possible support for the residents. It allows Alex to feel reassured, knowing that his mother is in good hands, even when he cannot be physically present.

When asked how he sees the future, Alex remains realistic: “I know things won’t get better.”

This clarity in the face of the inevitable progression of the disease is both painful and necessary. Alex expresses a feeling shared by many caregivers: “I don’t want my mother to pass away. At the same time, I don’t want it to drag on forever for her. I want the best for her.”

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