I consider myself one of those people who manages to “do all the things” with grace, but caregiving has proven to be a humbling and life-altering fork in the road. My husband José and I met in 2017 and after a fairytale courtship full of extensive travel and adventures, got married in 2021. Four months later, we found out that the leg issues he’d been told were due to paraparesis two years prior were actually the early signs of ALS.
Today, he spends his days in a hospital bed in our living room just a few blocks from the iconic Waikiki shoreline and I’ve become his full-time caregiver.
Caregiving for someone living with ALS is sort of like the caregiving Olympics. You will do things you never imagined you were capable of doing. In my case it has included everything from becoming a fierce advocate and defender of my husband’s needs and wishes, to ambulance rides, managing home modifications, crowdfunding, and learning to change colostomy bags and external catheters.
My journey also inspired me to seek out other women juggling caregiving and self-employment and launch the Entrepreneuring WHILE Caregiving podcast on my 50th birthday earlier this year. Ironically, caregiving responsibilities have led me to pause the podcast but I hope to restart it later this year.