My caregiving journey started in 2016 when my 47 year old, United States Air Force Veteran husband was diagnosed with service-connected ALS. We went from a family that scheduled our weekends around our son’s baseball games, to a family scheduling doctors appointments. Instead of planning for our retirement, we planned end-of-life documents.

I was the primary caregiver to my late husband during his six-year ALS journey. Three of those years he was trached and ventilator dependent. As most caregivers, I also became his advocate. I advocated for equipment and services from our local VA. I became the subject matter expert on my veteran with ALS. I realized early on that as I advocated for Tom, I was also advocating for other ALS veterans.

As caregivers, we are often told, how strong we are or how amazing we are to stay with our person with ALS. Caregivers, especially those in the space of a terminal disease, do they best they can under extraordinary conditions. We do this out of love, which can give you power you never imagined.

It has been two years since my husband has passed and I stopped being his caregiver, but I have not stopped being an advocate. I honor my husband and all those that have died from this disease every day. This is because every day I continue to advocate. I was the caregiver to my late husband. I am now his widow, but I am also an advocate and a survivor.