As part of National Caregiver Appreciation Week, Chantal Lanthier shares her testimonial to highlight the valuable contribution of her husband and friends in her daily life.
I have ants in my pants!
When our life hourglass runs out, we feel a great urgency to live, a real need to celebrate life in all its beauty, a desire to savor every moment. Many people have asked me if I have a “bucket list”, you know that list of wishes that we want to fulfill before we die. Personally, I don’t have one. My life has always been complete, I have lived it to the fullest, I have paid for my follies and I feel no need to draw up my end-of-life inventory.
I do, however, need to be stimulated to stay alive on the inside. An outing, a chat with friends, a dinner with family, a visit to a garden, etc. Lots of little things to make me feel like I’m still a part of life. I’ve always had an appetite for life, and this illness isn’t going to change that. The pandemic affected me greatly emotionally because I had no contact with the outside world. I was moping around and had almost lost the will to live. At least with the vaccine passport, I can go out without taking too many risks. It is by far the best method to avoid total reclusion. I die slowly if I don’t get out of my house during the week. It’s comfortable to stay at home, but life is about experiencing things, meeting people, it’s about relationships with others.
Of course, it makes me very tired. Sometimes it takes me a few days to recover from a simple outing. Not to mention all the equipment it takes when I go out. But it is so worth it! I used to be stimulated by work and our family projects. Now I have to develop other interests if I want to stay alive in my head and heart; to not die before I die.
To go out, I need to be accompanied by someone. Jocelyn is a homebody, so I started going out with my friends (Nicole, France, Julie and Maryse). They take turns coming over during the week and taking me to the movies, shopping, or visiting memorable places. They pamper me, do my hair, cook my favorite foods and make me eat. With them, I live again and again. They stimulate me with their jokes, anecdotes and stories. Between us, love works, and with such power! We share joys and sorrows, and my relationship with each of them is unique. We have been an inseparable group for years. We look out for each other. They are the sisters I never had.
While they are with me, Jocelyn takes the opportunity to take a break. The caregiver-care receiver relationship is better this way. It’s not always easy to synchronize everyone’s needs. Healthy people can decide to go out on their own, but unfortunately, I am dependent on others. When I want to go out, Jocelyn rarely refuses, but I know that he does it to please me. He would rather stay at home.
I have a great thirst for life. I am very active (even though I don’t walk anymore). I want to feel useful again. I want to stay in communication (even if I don’t speak anymore). I want to make the most of the time I have left. To do this, I have to accept that Jocelyn is not the only one taking care of me. It’s hard when you’re vulnerable to trust anyone other than your spouse. We are in our old shoes…lol. I do have to be willing to introduce others to my personal brigade though and I have quite a brigade! I have to trust my friends. Learn to let go and not control everything.
I am blessed with curiosity, which is great. The worst thing for me would be not to be interested in anything anymore. Some people with disabilities remain active and interested despite their disabilities. And others, on the contrary, are much less interested. In my head, I am free, inventive and full of projects. It keeps me alive.
It’s quite an inner adventure to swim through the disease, but I still manage to keep my head above water thanks to my network of unwavering friends and my superhero Jocelyn.
I love you all so much. Thank you for being there for me.
Diagnosed with ALS in January 2013