What is a Caregiver?
Many people are familiar with the term “caregiver,” but the reality of this demanding role often remains hidden. It is described as self-lessness, providing daily support, sometimes relentlessly. However, people don’t always choose to become caregivers; they choose to remain present and continue to care for their loved ones. Out of commitment, compassion, and dedication.
Acting as a caregiver does not always mean providing daily support. It also means helping someone facing the challenges of the disease, sometimes on an occasional basis, by offering transportation, searching for information for that person, or listening to them. Every gesture, big or small, helps make everyday life easier for someone in a vulnerable situation.
An Essential Role for People with ALS
This is a well-known reality for people affected by amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that requires significant support from loved ones. Like the symptoms of the disease, the role of caregiver develops gradually but rapidly, as needs and challenges evolve over time.
This is what Jocelyn Théorêt and Ghislaine Tardif, both caregivers, shared with us through their touching and inspiring testimonials.
This week, learn about their stories and see how caregiving is a unique reality for everyone, but always guided by kindness.
Caring For Each Other: The Story of Jocelyn and Chantal
A Bond Strengthened by ALS
People living with ALS are most often accompanied by a loved one from their immediate circle. This loved one is above all a trusted person with whom there is a genuine connection, because providing help requires teamwork. Because of this support, the quality of life of the person affected is better preserved, and they can continue to live as fully as possible.
This is the case for Jocelyn Théorêt, Chantal Lanthier‘s husband. With time, and as the disease progressed, Jocelyn explains that he learned to adapt to his wife’s needs, to the point where he became a natural extension of her movements.
“When one of Chantal’s members ceases to function normally, my body replaces it. Over time, I have become her hand, allowing her to scratch herself, for example. I have become her legs, helping her to move around, and so on,” he explains.
Jocelyn Théorêt, Caregiver, and Chantal Lanthier, Living with ALS
Working as a Team to Tackle the Challenges of ALS
Even before the disease, Jocelyn and Chantal always worked very well together. Both are enterprising, organized, and forward-thinking. With the reality they face today, their complicity has grown even stronger.
“We’ve reached a point where we don’t even need to talk to understand each other. I can tell what Chantal needs just by her gestures and facial expressions,” explains Jocelyn.
But this collaboration works both ways. Chantal also looks out for Jocelyn.
“Chantal was the one who sounded the alarm for me. I’ve always been a calm and positive person. But at one point, she told me that I seemed less patient than usual, which wasn’t like me. She advised me to see a professional. That’s when I realized I needed a break, and I asked for help.”
Forward-thinking and attentive, Jocelyn and Chantal have always shown caring and understood how important it is to maintain their well-being. Now, Jocelyn enjoys a day of respite on Wednesdays to get out of the house, do an activity of his choice, and enjoy some time to himself.
The Importance of Support Services
Jocelyn’s story illustrates the importance of taking care of yourself in order to better care for others. That’s why support services and resources exist to offer respite, advice, and support to all caregivers. Like Jocelyn, caregivers can seek help to get a respite during the week, allowing them to find a balance between providing support and maintaining their own well-being.
Coming Soon: One day at a time with Ghislaine and her husband Donald, who has ALS
Stay tuned to discover the story of Ghislaine Tardif, also a caregiver, who lives in Abitibi with her husband, who lives with ALS. For her, facing the challenges of the disease is done one day at a time, finding respite in small moments of tranquility. Her story embodies the quiet strength and courage of caregivers who gently adapt to each new day.