An Unlikely Face of Caregiving
Updated: Jul 10, 2018
There are over 43 million adults in the United States providing unpaid care for a loved one — unsung heroes, one and all. Yet it was the approach to Tim’s mom’s end-of-life care that captured the world's attention and imagination. Unwittingly, we became an unlikely face of family caregiving.
So, why us?
Two days after her husband of 67 years died, Norma, 90, was diagnosed with endometrial cancer. She chose to forego any invasive medical treatments. Instead, she chose adventure, dignity, and autonomy.
Norma had an option in mind that her doctors did not provide: spend her remaining time with family in their home. Our home just happened to have wheels.
We were modern-day nomads traveling around the United States, Mexico and Canada living in an Airstream travel trailer. We told Norma that we could buy a bigger motor home so that she could comfortably accompany us. It did not take her long to say, “I think I’d like to come along.”
We had no idea what Norma’s needs would be, how long our travels would last, or even where it would take us. But we knew we had to try. And like many, we also did not know if we were cut out to be caregivers. We decided to let Norma show us how she wanted her end-of-life journey to unfold.
Along with our poodle, Ringo, we commenced on what turned out to be an epic 14-month, 13,000 mile drive across 32 states and through 15 national parks. Six months into the trip, the Driving Miss Norma Facebook page created solely to keep family and friends informed went viral.
Soon after, our story appeared on television, radio and in hundreds of media outlets across the world. Eventually a half-million people hit “like” on Facebook and watched Norma live fully until her last breath.
Norma embarked on her final adventure with a sense of freedom, joy and purpose; she concluded it with tremendous peace, love and dignity.
So again, why us?
Miss Norma’s story seems to have struck a chord with many and for many reasons. Perhaps our audacious response to Norma’s health crisis gave people permission to think creatively in their own situations.
We would also like to create a supportive community that helps families make informed care decisions for themselves or their loved ones. Please check in with us at Miss Norma’s Caregivers Retreat as we connect with, and advocate for, family caregivers across the United States.
Tim Bauerschmidt and Ramie Liddle are inaugural Caregiver Fellows for the Coalition to Transform Advanced Care (C-TAC) and are co-authors of Driving Miss Norma: An Inspirational Story About What Really Matters at the End of Life, (2017) HarperOne. Learn more at MissNorma.com.