In 2001, Martin and Anick were planning their lives together, looking forward to great adventures, determined to climb their respective career ladders and to start a family. But fate had decided otherwise. That summer, Martin was plagued by great fatigue, fever, and a loss of muscle strength. The couple learned that he would have to undergo a series of medical exams to determine what was wrong just as they got the news that they were expecting a baby.
“During my pregnancy, we visited many physicians. Some visits were to prepare for the birth of a life. Others – it was always lurking at the back of our minds – to prepare for the end of another life,” explains Anick. One month after their daughter, Frédérique, was born, the diagnosis of ALS hit them at their core. “We were told that Martin would never see his daughter grow up.”
Fourteen years later, Martin has beaten the odds: the average life expectancy for people with ALS is between two and five years. For Martin, Anick and Frédérique, it has been an emotional and physical roller coaster: love, guilt, happiness, sadness, stress, anxiety, solitude, sleep disorders, moral and physical exhaustion. “None of us had envisioned our lives taking this path. In addition to being ‘Mom’ to my daughter, I am also a caregiver to Martin.”
Little by little, Martin has completely lost his autonomy, with his head being the only part of his body that still moves. He requires assistance in every aspect of his life. To feed himself, to brush his teeth, to answer the phone, to scratch himself, to go to the bathroom, to reposition himself about ten times per night, among other things… “For caregivers, everyday requires generosity, patience and acceptance. But we need recognition, support and, more than ever, respite.”
In July 2015, the ALS Society of Quebec responded to that need and launched a Respite program.
“For the first time in fourteen years, I was able to take a break. Thanks to the Respite Program, I took some much-needed time for myself while certified home care workers were with my husband.”
Since the launch of the program, many caregivers, some even for the first time, took advantage of the Respite Program. This has meant uninterrupted sleep, worry-free errand-running, or squeezing in some much needed social time for people who have dedicated their lives to supporting their loved ones.