Earlier this month I completed another course
in my graduate online Pacific University Oregon “The Body Chronicles” certificate program. The course theme was “The Craft of Caregiving.”
Guest faculty included author and associate professor in the Department of Social and Critical Inquiry at the University of Connecticut Laura Mauldin “In Sickness and In Health”(2026); author and director of disability studies at the University of Oregon Brian Trapp, “Range of Motion”(2025) and celebrated poets Melissa Mckinstry, N.L. Shompole and Georgina Marie Guardado.
All of the faculty came with direct caregiver experience, either as a partner, parent, sibling, adult child and/or assisted living professional.
I was among a few in the class who had the duel experience of being a caregiver and recipient of care.
At age 27, Mauldin was in a new romantic relationship.
While working and attending graduate school, her partner’s leukemia returned and Mauldin became “The One.” “The One” is the unpaid person who has the complete responsibility of caring for the ill or disabled person. Often this person is a female relative.
Her book addresses the crisis status of caregiving through detailed caregiver case studies.
The interviews highlight the all too familiar aspects: Family leave, Assistive living, the sandwiched caregiver (caring for children and parents simultaneously) the need for respite care and support groups, and current threats to Medicaid caregiving reimbursements.
Mauldin also maintains the website Disability at Home, a place where caregivers and persons with disabilities share their home accessibility DIY solutions.
When I had my spinal stroke at age 18, my longtime boyfriend was barely in his 20s.
While he wasn’t my official “The One,” he did have to navigate between his life (work/university/friends/) and me, my home health care team and family. His parents were extremely concerned for his future and encouraged him to consider the enormous burden of a lifetime of caregiving. Within the year we were no longer a couple. I remember him saying to me “I’ve haven’t been this close to someone who’s experienced such a significant loss.”
In Trapp’s life, his twin brother Danny, was born with cerebral palsy and intellectual disabilities.
They shared a deeply fun, intimate and meaningful sibling relationship. Trapp’s novel is told from several perspectives.
After my spinal stroke, I asked a high school friend to become my roommate. She made meals, cleaned our apartment and drove me to appointments. After a year, I was ready to live independently.
I’m the eldest of five siblings. Following my roommate, one of my brothers, Mike, became my situational helper. I bought gas for his car and paid for prom while he washed my windows and helped me decorate for Christmas. Once after leaving a store he forgot to put my wheelchair in the car. As we drove a few feet, a man pounded on the window, “What are you doing to that poor girl?”
Mike responded, “Poor girl? That’s my sister. And, when we’re talking she can easily distract me.”
And finally, our three-poet faculty provided an exploration of the emotional, sensory and nuanced aspects of caregiving. The reading of their work, teaching and writing prompts provided an experiential immersion into the subject.
When I told some friends about my caregiving course, a few went quiet. Like many in our country, they’ve subscribed to the mindset of fierce independence at all costs. They’re more comfortable being caregivers than being cared for.
Few however have provided full-time home medical care. They tell me the possibility of that, terrifies them; the financial cost and the physical and mental exhaustion. Some have bought longterm care insurance, funded Accessory Dwelling Units on family property and considered tiny home communities. Others are looking at friends, neighbors and college students as future caregivers.
This course was highly emotional for my husband, Tom, and I. When we met, I’d been paralyzed for five years. We were young and my health was stable. In 2021, I was diagnosed with breast cancer and then came other serious health challenges. Tom’s older now, too.
Daily, we work to address his needs, mine and those of the relationship.
It is not easy and it’s doable.
I’ll address that specific topic in a future column.