Jocelyn’s Story

Digging deep: finding strength

Chantal Lanthier et Jocelyn Théorêt

It was as if someone had punched him in the gut. Jocelyn Theoret was stunned by the news his 46-year-old wife Chantal Lanthier had Amyotrophic lateral sclerosis (ALS). “I was frozen, mute. My wife was asking the doctor questions but I was doubled over in my chair. I couldn’t move not even to go comfort her,” he recalls with some emotion.

Ironically, a couple of months prior to his wife’s fateful diagnosis, Jocelyn had watched a news report about ALS. “I remember thinking you wouldn’t wish that (ALS) on your worst enemy. The report was sad and touching, but since I didn’t know anyone with the disease, I didn’t give it much more thought.”

Keep calm and carry on

Chantal and Jocelyn were floored by the diagnosis and it would take them a good two months to come to terms with their fate and decide to stand up and live through it. “We are happy despite what we are living. We have learned to appreciate and savour the little things. We live day-to-day and have fun every day.”

Sometimes our work as caregivers is not for the faint of heart. But, you will never know what you are made of until you step into the fire. Step bravely!
– Deborah A. Beasley

Jocelyn says people don’t realize just how difficult it is to be a caregiver and the toll it takes. When people learn one spouse is taking care of another they think that’s ‘nice’, but really have no idea what it entails. Watching your loved one lose their abilities is heartbreaking, he says. “The caregiver literally has to step-in to take over for them. You physically “become them” for every little thing,” he says. “You are beside them from the moment they wake, till they go to bed and even in the middle of the night. You continuously strive to give them the greatest possible life.”

Jocelyn encourages Chantal, the love of his life, in everything she does. They both founded and attend their local monthly Café Rencontes for those living with ALS. He attests the support group really helps caregivers as it gives them an opportunity to open up and talk about things they wouldn’t dare broach in front of a loved one. “We talk, we make faces, we have fun. The support group gives a chance to be perfectly honest with people who understand,” he says.

Chantal-JocelynJocelyn says raising funds for the ALS Society of Quebec continues to be an imperative noting the Ice Bucket Challenge was like manna from heaven thanks to which his wife’s dream of starting a respite program became true. In July 2015, the ALS Society launched a respite program allowing families to receive up to $1,500 to reimburse expenses for respite care, in order for those caring for someone with ALS to find additional support or the opportunity to take a break from their ongoing responsibilities.

We are not given a Good life or a Bad life. We are given a life. It’s up to us to make it Good or Bad.
– Unknown

He wishes courage to all caregivers, “Life brings us hardships, but we can overcome when we look for the silver lining. In the end, you can only live the life you are given.”

Jocelyn knows life will get harder as the disease progresses and his wife becomes increasingly weak. “It won’t be easy on my wife and personally, I wonder if I will be up to the challenge, but I believe we have more strength than we are aware of. When you love someone, you simply find the energy to continue, to make their life better and to make them comfortable. It isn’t easy, it is hard, but it has served to bring us even closer together.”

Written by Lisa Dutton, Shout! Communications