My Unconventional Caregiving Journey
Categories: Being a Caregiver
By Rachel Michelberg
My caregiving journey is not heroic. I didn’t rise to the challenge or overcome my ambivalence about taking care of my husband. When confronted with the reality of becoming his caregiver after his small plane crashed, I had to grapple with the fact that my life, too, was being utterly altered. David was 45 years old and had suffered a traumatic brain injury. I was 44, and I couldn’t picture spending the rest of my life as a caregiver to a man who was seizure-prone, incontinent, irrational, and susceptible to angry outbursts. My decision not to devote the rest of my life to his care horrified his family and many of our friends, all of whom assumed I would shoulder that responsibility. It was the ethical thing to do. Isn’t that what I’d promised? In sickness and in health, right?
Most of us don’t sign up to be unpaid caregivers – our change in identity and role just happens, sometimes slowly, sometimes like a thunderbolt. There is a disease (e.g., Alzheimer’s, dementia, cancer, stroke, etc.) or an accident (e.g., a car or motorcycle crash, a fall, a severe sports injury, etc.) that, in an instant, changes a life forever – changes many lives forever. In my family’s case, it was a plane crash.
Most people don’t survive plane crashes, but David did. We’d been married ten years when the small plane in which he was flying crash-landed into a vineyard on the central coast of California. David sustained severe spine, pancreatic, and head injuries. His spine healed, as did his pancreas, but the damage to the frontal lobe of his brain was so devastating that he would never regain normal functioning. In the best-case scenario, David would have the mental capacity of a seven-year-old.
Our marriage had been on shaky ground at the time of the accident. We were in counseling. I’d been struggling with a strong attraction to another man, but I was determined to make my marriage work. Then David fell out of the sky, and our rocky relationship became an impossible one. In an instant, I became his caregiver, our family’s sole decision-maker, and a single parent to our six and seven-year-old children.
In the months following the crash, David remained hospitalized, suffering seizures and undergoing multiple surgeries. I was in survival mode, melting down on a regular basis while endeavoring to preserve some sense of normalcy for our children. My health deteriorated: an old eating disorder recurred and a serious abdominal condition resulted in my own hospitalization. With the help of caring therapists, social workers, and my “village” of loving friends and family, I slowly came to accept the realization that I was not equipped to bring David home and take on the role of full-time caregiver.
For years afterward, I struggled with the guilt and shame of that decision. But it was my truth, a clear understanding of my capabilities.
Though I decided not to care for David at home, I was determined to ensure that he receive the best care available. When his physical condition stabilized, I had him moved to a residential facility that specialized in brain injury half an hour away. Every day I worried about David’s happiness and his quality of life. Was he bored? Was he lonely? Was he aware of the enormous losses he had suffered? Once his overall health stabilized, I worried that he was frustrated sexually, though I knew I could no longer satisfy that need.
My therapist encouraged me to focus on what I could do, rather than on what I couldn’t. That sage advice gave me permission to focus on possibilities for David, rather than my own deficiencies. I made the commitment to bring the kids to visit their father at least once a week. We took David to restaurants, tried horseback riding as a family, and made an event out of each Target or Best Buy shopping excursion. The residential facility provided drivers to bring David to the kids’ school events, dance and theater performances, and to our home where he could attend birthday parties or simply hang out with us. It didn’t matter what we did. With his substantial cognitive impairment, David was no longer able to be a father in any conventional sense of the word, but I could provide an environment that enabled some kind of relationship between David and his children.
I did what I could and continued to face pressure from David’s extended family to bring him home. I continued to resist that pressure. Am I proud of that decision? No. I wish I’d been the kind of person who could rise to the challenge and overcome my resistance to the all-consuming role that had been suddenly thrust upon me. I am in awe of those who can take on caregiving like that, but I just wasn’t capable. And the truth is that I didn’t want to. I wanted more for myself than just being David’s caregiver. I had a choice to make, and I made it.
My family’s situation was unique. We were fortunate that, due to a large financial settlement, we had options. So many do not. No one plans – emotionally or financially – for a trauma so severe and debilitating that familial roles are altered in an instant.
I wrote my story to give voice to those who find themselves in similarly devastating circumstances and are doubting their capacity to fulfill that role. I want to give caregivers permission to question the expectations heaped on them and to stay true to their understanding of their capabilities and desires. Because if your own health suffers and you are incapacitated, too, no one wins.
About The Author:
Rachel Michelberg grew up in the San Francisco Bay Area and still enjoys living there with her husband, Richard, and their two dogs, Nala and Beenie. She earned her Bachelor of Music degree in vocal performance from San Jose State University and has performed leading roles in musicals and opera. When Rachel isn’t working with one of her twenty voice and piano students, she loves gardening, hiking, baking sourdough bread, and making her own bone broth. “CRASH: How I Became a Reluctant Caregiver” is Rachel’s first book. Learn more at rachelmichelbergauthor.com.
This article originally appeared in Volume 16, Issue 1 of THE Challenge! published in 2022.