Caregiving arrived without fanfare on her birthday–a June day in 2002–when my wife was diagnosed with brain cancer. It was in one of the small consultation rooms that I first heard the word ‘caregiver’ as my wife lay in a coma in the ICU, while I vacillated between being brave and despondent. There was no training, no employee manual or job description. Just, “You’re her caregiver.”
I was a seasoned business executive and husband of 27 years. I always knew how to manage, especially with the goal of achieving perfect outcomes. I told myself I’d do the same with caregiving.
My wife was discharged after 48 hours. We drove from Minnesota to Illinois and had to spend a night on the road because the rehab facility had no beds available. On that trip back, we realized how unprepared we were to meet her needs. Our daughter had to hold my wife to keep her from constantly opening the door while we were driving. When we stopped to eat at a restaurant, we were asked to leave since my wife was “unsettling” their customers. We grabbed a quick to-go order and ate on the beds in the hotel. It was “good enough.”
On the second day at the rehab facility, reputed to be one of the very best inpatient brain injury facilities in the United States, we were told they wouldn’t be able to provide services to someone with the emotional disturbances that my wife exhibited. She needed additional supervision and our family would have to provide it. It was summer, so our daughter took the day shifts and I took over as soon as I came home from work for the day. It was “good enough.”
Once we returned home, my wife’s anxiety was out of control, despite the extensive daily medicinal cocktail, and her concentration lasted for only minutes at a time. Finding paid help was unreliable and nearly all our friends and family ghosted on us. We made do with the help our children could provide without totally giving up their lives, and with an exhausting revolving door of subpar paid help. But, it was “good enough.”
Even though I was the organization’s top producer, I was fired from my job because the new manager didn’t want “someone with family on their mind.” Nevertheless, for over seven years we managed, “good enough.”
Caregiving was overwhelming–too many things to do, and too few hours in a day to do them. Dust bunnies, dirty laundry, and dishes were constant companions. Shirts looked fine, un-ironed. “Good enough” became my lifeline, especially when I had to deliver 32 doses of medications daily. I kept a pillow on the sofa, which became my punching bag when frustrations ran high. That worked fine until one tough night, when I hit it too hard, and then spent the night cleaning up the living room which had feathers everywhere!
Caregiving carries huge societal costs for patients, families, and the caregivers. Approximately 39.8 million caregivers provide care to adults with a disability or illness or 16.6% of Americans. Medical professionals should not ignore the realities of caregiving or leave it up to individuals to figure out how to manage. My wife fought her battle with brain cancer for over 14 years. I’m still struggling with the caregiving scars and guilt I carry in my heart.
“Good enough” shouldn’t become just good enough.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Scott Phillips, husband, father, grandfather, and former professional fundraiser, counts his most significant accomplishment in life, his years as his wife's caregiver. Scott volunteers on Mayo Clinic Connect, and is an avid collector of wines from the Napa region. A born and bred Midwesterner, Scott loves family, good friends, and spending time up North.