Discover the inspiring story of Ghislaine Bourque, caregiver and author of Et si perdre la tête rapprochait les cœurs… [If losing one's mind brings hearts closer together…]. She tells us how, over the course of seven years, she cared for her mother who had Dementia with Lewy Bodies (DLB) and how she tamed this disease to maintain contact with this “new mom.”
One year after the diagnosis, we had to place my mom in a long-term care facility because she lost the use of her legs very early on. Her entire body had become rigid and it required two people to move her. I felt distraught and helpless having to watch her suffer physically and emotionally. I did not know how to support her in her descent into hell.
My granddaughter who was two-and-a-half years old visited her great-grandmother; it was wonderful to watch them together! I felt their complicity and their love for one another. And I said to myself that if little Lori-Anne could be so close to her “grandma Rosée” without her giving her anything tangible, this child must feel her being, the soul of my mother. I held onto hope. One day, I would become as skilled as her at experiencing the essence of my mom, without reference to her waning intellect or reasoning.
I was patient, gentle and kind with my mom. But, what to say when she begged me to get her out of there, how to react when she ordered me to get the hell out of there, what to do when she cried, because her daughter never came to visit her anymore? Yet, I was by her side every day!
Since my mom did not have Alzheimer’s disease, I didn’t want to call the Alzheimer Society. Finally, on the verge of suffocating (I was recovering from pneumonia), I resigned myself to knocking on this door. The counsellor told me that organization supported all types of cognitive disorders. Phew! All of a sudden, I felt relieved: finally, I was in the right place to receive help! I received the information I needed to communicate with my mom in another way. I had to capture the emotion conveyed by her incoherent words and her disconcerting behaviour to connect with her in her universe. Thanks to this new perspective, I developed a language adapted to my confused mom to provide her with better care and support through this cruel disease. When a path lead nowhere, I changed my strategy. I was often innovative!
During her last two years of life, mom no longer spoke and no longer recognized me. She had become an inanimate body. By continuing to listen, I managed to decode her ways of communicating and I took action based on my intuition, often staying with her longer to comfort in her being. I watched over her and I returned to the basics: love her unconditionally with all my strength without killing myself in the process. I learned to respect myself to continue being able to give her a quality presence full of love and respect. As Sylvie Petitpas says, “[…] to give yourself, you first have to belong to yourself.” On days when I did not feel like I was in the right space, I asked my husband to take over to feed her and provide her with a loving presence.
Through her dementia, my mom permitted me to experience life at its most intimate. I experienced the extraordinary connection of hearts, without any filter or social pretense. It is a great privilege to be able to live so close to the essence of a loved one!
By living in the present moment when I was with my mom, I was able to stop having her in my head when I was not by her side. I could continue my life with a clear and calm mind as soon as I left the CHSLD. Since I was with her every day, by living in full consciousness with my bereft “new mom,” I had the time to mourn all of her losses, one by one. When she died, I felt enormous relief. Finally, my dear mom was no longer suffering. I do not feel guilty or have regrets: I did everything I could do for the woman who gave me life.
If you would like to know more about everything I experienced as a caregiver and the tools I used to soften this phase of life, for both my mom and me, please visit my website [in French]: www.ghislainebourque.ca. There you will discover Et si perdre la tête rapprochait les cœurs…, a landmark book that shines the light where many people no longer see it!