It was a true privilege to be my daughter Jessie’s primary caregiver when she was diagnosed with Sporadic Limb-onset ALS, but with full transparency, it took a major toll on me - physiologically, emotionally, mentally, spiritually, and socially.
I am so grateful for all the support Jessie and I received from family, friends and organizations during her 20 months living with ALS. The effective collaboration between Alberta Health Services, the ALS Clinic and the ALS Society of Alberta ensured that Jessie and I were highly cared for. Jessie’s Client Service Coordinator (CSC) from the Society kept tabs on Jessie through phone calls and visits.
Her CSC also kept a close eye on me, as Jessie’s primary caregiver, ensuring I received the support I needed. The Society’s Caregiver Support Groups were instrumental for my emotional wellness. I was in a community who understood the challenges for our person living with ALS, and the challenges for caregivers in particular.
When Jessie died in November 2019, I longed for a community who understood not only the profound grief I was feeling but also the uniqueness that ALS brings into our lives and into our grief. I wanted a space where I could speak freely and without judgment.
I found just the place and I didn’t have to look far. The ALS Society of Alberta offers a monthly grief support group called Staying in Touch. For the past four years I have been staying in touch via Zoom with other wonderful Albertans…a community who understand the uniqueness of our journeys as caregivers. We tell stories, we laugh, we cry, we listen, and we hold space for all…no matter where we are on our grief journeys.
I have heard from various experts that “grief fog” lasts for approximately six months and that the two years after a loss is “early grief”. That was a tender time for me and I am grateful to have a familiar and safe group like Staying in Touch to belong to.
It is a community I would never have wanted to become a member of, and yet I am so grateful to be a part of. I look forward to checking-in with my friends every month. Elizabeth Kubler Ross said, “The reality is that you will grieve forever … you will learn to live with it”. Being a part of Staying in Touch helps integrate my grief into my life. We are fortunate in Alberta as I have yet to see another province with an ALS-specific Grief Support Group. Thank you ALS Society of Alberta!