Staying together, staying at home: Linda and Alessandro’s daily challenge

When Linda met Alessandro, she never imagined that their love story would be marked by such a daunting challenge. The diagnosis came as a shock when Alessandro was only 29 and the couple was planning to get married.

The news came as a huge shock to Alessandro. “It was terrible because I had never heard of multiple sclerosis. It was like a bullet to the head,” he confides. Faced with the unknown and filled with fear, he even considered the worst.” I thought about it. Absolutely. The desire to die, the desire to say I’ve had enough. I don’t have the will to live anymore.”

“In the hospital, when he was diagnosed, he said to me, “I don’t want you to go through this. I’d rather you leave me,” Linda recalls, her voice filled with emotion. But for her, leaving was never an option. “I never even considered it,” she says with conviction.

Their home became the battleground in their fight against the disease.

Over the years, Linda found herself not only supporting her husband, but also her aging parents. “That’s when I started to realize that my life was taking a new turn,” Linda explains. “At first, I didn’t see myself that way. They were my mom and dad, and they needed me.”

Juggling the needs of her parents, her husband, and her children was not without its challenges. Linda struggled with exhaustion and guilt. “It’s 24 hours a day. I don’t say everything I see or experience, and I don’t say that Alex is getting worse. It’s not that I want to hide anything, it’s just that I don’t want to burden others, especially my children,” she confides.

While attending an information fair in Candiac, Linda met Nancy Gilbert, a caseworker at the Centre de bénévolat de la Rive-Sud (South Shore Volunteer Center). It was a turning point in her life. “I still remember our first meeting,” says Nancy. “Linda was at the end of her rope. She had come up against a brick wall.”

Nancy was able to offer Linda the support she desperately needed. Through coffee meet-ups and training sessions, Linda was able to start getting her life back on track. “We provide them with guidance on how to take care of themselves. It’s a step-by-step process,” explains Nancy.

Thanks to this support, Linda grasped the importance of setting aside time for herself. She began taking her watercolour painting classes again, an activity that she had abandoned for years. “It does me a lot of good,” she confides. And far from being jealous, Alessandro encourages her in this activity.

Nancy uses a striking metaphor: “I often talk to them about their energy bank account. Be careful not to go into energy bankruptcy. We need to put as much energy into ourselves as we give to others.”

This is a particularly relevant metaphor for caregivers, who often give of themselves tirelessly until they are exhausted. Nancy emphasizes, “If you want to be the caregiver you aspire to be, you have to ask for help. You have to ensure that you are equipped both physically and mentally to keep going.”

The progression of Alessandro’s disease has required ongoing modifications to their home. “We started with small things,” explains Linda. “First a handrail in the bathroom, then a ramp for the front door. Every change was a challenge, but also a victory in terms of staying in our home.”

For Alessandro, the idea of leaving his home is unimaginable. “I would choose to die at home,” he says emphatically. The couple has already begun adapting their living environment, notably with a platform lift. Linda confides, “We were lucky. We received a platform lift as a gift from a lady who no longer needed it. It allows us to stay in our home longer.”

The couple is also thinking about the future and the long-term care that may be needed. “We try to think as far ahead as possible, where we can stay at home for as long as possible,” explains Linda.

Thinking about the future is important, although it can be difficult. Nancy encourages caregivers to prepare for it: “There will be an end. Prepare for the end. Don’t bury your head in the sand.”

Despite the difficulties associated with his illness, Alessandro remains positive. He looks back with pride on the years he was able to spend looking after his children at home. “I had some wonderful years with my children,” he says. “Being a parent is a beautiful gift.”

This period was a source of unexpected joy for Alessandro. “They called me the soft-hearted father, the sensitive man,” he recalls with a laugh. “For an Italian, it was a little frustrating. But I knew I was lucky.”

Today, at 67, Alessandro is facing the progression of his disease, but he remains determined to enjoy life. He particularly enjoys spending time in his garden and doing activities he can still do with his wife. “When I look out into my yard and see all the things there, the little birds outside, I open the windows and hear them singing, I feel happy,” he says with emotion.

This determination sometimes translates into a stubbornness to stay active, which is stressful for Linda. Alessandro continues to undertake physically demanding projects, such as when he recently varnished the porch. “He was on all fours when he did that,” Linda explains. “When he takes on jobs like that and doesn’t set any limits for himself, there comes a point when I’m not there to tell him to stop.”

This activity, while a testament to Alessandro’s desire to remain independent, is a constant source of concern for Linda, who fears for his safety and health. It’s a delicate balance between encouraging his independence and ensuring his well-being, a daily challenge for the couple as they navigate life together.

Nancy Gilbert emphasizes the importance of support for people like Linda and Alessandro. “You have to give them the right to say ‘I’m scared’ or ‘I’m tired’ or ‘I can’t do this anymore,’” she insists.

She highlights an often-overlooked aspect: the recognition of their role. “I wish people in Linda’s situation would recognize it sooner,” she says. “Often, they tell me, ‘No, I’m not in that situation, Nancy. I just help my spouse get dressed in the morning and take a bath.’ But that’s exactly what it means to be there for someone else.”

She believes this recognition is fundamental. First, it makes it easier to access available services. But beyond the practical aspect, it plays an important role in self-esteem and psychological well-being. “When they recognize themselves as caregivers, they better understand the importance of their role and the need to take care of themselves,” adds Nancy.

Despite all the challenges, Linda and Alessandro’s enduring love remains the pillar of their lives. They continue to share moments of closeness and laughter. “We still have fits of laughter,” says Linda.

Linda and Alessandro have found ways to continue enjoying life together. Getting an electric wheelchair and a quad bike has been liberating. Linda explains: “It allows us to do things together. We can go for walks in the park, go to the mall, have coffee together.”

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