As part of the Caregivers’ Week, the Society wishes to shed light on the resilience and the extraordinary work done by caregivers for their loved ones. On May 13, 2007 Annie Huard was unaware that her life would be turned upside down as this marked the day that her husband Claude Fortin received his ALS diagnosis. Follow this heartwarming testimony of a woman full of hope that is learning what it’s like to be a caregiver as seasons change.
SEASONS OF LIFE
It was a beautiful warm and sunny summer. Claude and I were busy with various projects around the house, travel planning and busy with our jobs. I owned my hair salon and Claude was a social worker at CLSC. We had family or friend gathers almost every weekend. Our daughter Marie-Philippe who was a teenager then was always on our minds. We simply had a normal life. We were happy, healthy and had recently celebrated our third wedding anniversary. Our lives felt sunny and warm like summer days.
The stormy weather started on May 13th 2007. Claude and I had returned from a wonderful two week vacation on the French Riviera. The following day, I noticed his speech had changed almost like he had been drinking, which of course was not the case. Claude consulted with his doctor in early June. Not understanding his symptoms, we worried about what the prognosis could be. It felt like dark clouds were surrounding us. I had to deal with the stress of working over 70 hours a week and that of medical appointments that came regularly. Claude was in denial of his illness for several years because in his case its evolution is slow. It took the doctors more than two years before confirming the ALS diagnosis without being 100% certain. We were in shock especially when we learned that he had bulbar form, the most aggressive form whose life expectancy is between 18 and 36 months.
I kept up the facade of a strong and courageous woman, but I was slowly and surely losing the battle. On May 3, 2011 I finally cracked under the pressure. A burnout diagnosis. What! Me? Not me? Annie Huard? I was in shock! A cold winter wind chilled my blood.
Even though I was at my weakest, I continued to care for Claude. Months passed and the demands increased. Help him to get out of bed, dressing, showering, sit on the toilet, going to bed, etc. Despite his huge efforts to help me care for him, my presence was needed constantly to ensure his comfort and all of our responsibilities fell on me.
To watch him slowly deteriorate before my eyes due to spasms and stiffness is excruciating because I miss my Claude. The Claude who couldn’t stop talking, who always teased me, who was always singing and whistling. The worst is to feel helpless and having to protect myself from this storm. Not wanting to impose on anyone, I was afraid to ask for help. Yet, I am so grateful for my family and friends. They provide us with delicious meals, care for our lawn, trees and flower beds as well as clear the snow from our walkway. We are so fortunate to have them in our lives.
Losing oneself is easy when you become the caregiver of a loved one. I have often heard “You must take care of yourself, otherwise you will get sick.” It is for this reason that Claude goes to respite twice, three weeks per year. Everyone tells me to pace myself, but I admit that I have a hard time letting go.
HOPE FOR SPRING
Winter goes on, Claude and I continue to deal with the griefs of our past life when it was always summer full of pleasures and hopes. However, Claude always challenges me. Recently, I made an “Ice Bucket Challenge” video with him in which Claude challenged Pierre Lavoie. I said to him, “When you get an idea you never give it up.” He had also challenged Pierre the previous year. He is so persistent, I so admire that in him. Pierre Lavoie responded to the challenge, but did so in his own way with an ALS Sports Challenge. The media coverage that followed in our region has created such a beautiful energy that brings hope for things to come.
I hope, no, I know that it will be spring again when all ALS patients receive the well awaited treatment. According to researchers, that treatment should be coming along in just a few years. Although nothing is for sure, it is mine and Claude’s greatest hope. Our love is still strong and is what keeps us going. I will continue to keep a good morale as I pursue my role of caregiver in hopes that we can overcome the harshness of winter.
Caregiver since 2007.