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Jennifer Dotson (left) interviewed Caroline Johnson on July 17 for a TV show based in Highland Park called, "Poetry Today." Among other things they discussed her new book, The Caregiver.  The 30-minute show will be released on local access TV August 1, 2018, and will also be available on this website.

The Poetry of Caregiving

It’s hard to believe I spent 12+ years of my life managing my parents’ illnesses in all their Technicolor array. I put countless miles on my car, visited every weekend and more, got docked pay often when one of them was hospitalized and I had to rush to their side, drove them to numerous doctors’ appointments, and the list continues. This does not even touch on the emotional exhaustion that goes along with caregiving. “Managing” means talking to doctors, nurses, social workers, CNA’s, physical and occupational therapists, speech pathologists and other healthcare professionals. At each bump in the road there are always decisions to make: Do we choose home health care? Should we hire a CNA or a caregiver? What about a nursing home? As their Healthcare Power of Attorney, I felt the full responsibility of being their advocate. I prayed I made the right choices.

It began when my mother could never remember her lines in a play she was acting in, and my father had a shooting pain down his right leg. Mom later would wear her pajamas the whole day. These precursors morphed into full-blown Alzheimer’s, Hydrocephalus and Rheumatoid Arthritis for my mother, and Parkinson’s for my father (though later he was rediagnosed with a more rare neurological disease, Multiple Systems Atrophy). My father had acted as caregiver to my mother until we saw the negative effects on him, so we decided to hire a caregiver. Thank God for Donna, who gave the tender loving care both of my parents so desperately needed, and who taught me what it means to care for another beyond all thoughts of myself.

I began to write poems about my caregiving experience, as a way to grapple with all of the unknowns I was facing. Some of these poems began at my parents’ house and were inspired by films I watched with them, such as The Titanic (“Sunsets”), 300 (“This Old Soldier”), and many James Bond and Charlie Chaplin movies (“James”; “A Father’s Invitation”). Others were written far away, such as “Shapeshifting” when I was on vacation with my husband, “At the Dentist” when I was getting root canal, and “Flying” while en route to Europe. These poems reveal that caregiving stays with you always, and never leaves your mind or heart.

My father was a bomber pilot in the Air Force during the Cold War, hence I wrote poems that referenced this: “Parkinson’s Flight”, “Gliding”, “Hospice,” “The Window.” I didn’t know him during that part of his life, but I can only imagine the courage it takes to fly a plane, perhaps the same courage it takes to tackle a life-threatening illness.

What became the title poem in my collection, “The Caregiver,” was inspired after reading a Philip Levine poem about a worker on an assembly line. I couldn’t help but think of my father’s caregiver, Donna, and what she did for my father every day, and what she taught me about caregiving. Other poems, such as “A Good Day”, “MSA”, “Skiing” and “Mother’s Day” attempt to show how stalwart my parents were in the face of chronic illness, while “Alzheimer’s Dream,” “Three Words” and “The Longest Good-Bye” touch on the defeat I often felt as caregiver, watching helplessly from the sidelines.

It is an intimate relationship, the caregiving relationship. From making sure your parents are clean and comfortable, to constantly talking to doctors and nurses about their care, it is definitely a responsibility. When you listen to your mother repeating the same stories over and over as you experience the strangeness of her not really knowing who she is, this teaches you patience. Feeding your father homemade oatmeal, scrambled eggs, and thickened drink becomes a spiritual act. I have found that a lot of other people also share these stories. Whenever I read my poems in front of people it sparks a reaction in them. Many times strangers come up to me after readings and tell me their caregiving stories. I also had the opportunity to read some of the poems to my father at the end of his life, and though I have no idea how much he comprehended, he seemed very appreciative. At his funeral in November of 2015, I read some poems instead of a eulogy.

I have no children, just a husband and two cats. The role of family caregiver was a natural one for me as all my siblings have kids, and some live far away from Chicago. I have worked as a newspaper reporter, barista, English teacher, office clerk, secretary, and now college advisor. I didn’t grow up saying, “I would like to be a caregiver.” But I have found caregiving to be the most important, profound job I’ve ever had. It has been a privilege and an honor to be by my parents’ side during their later years. I experienced moments, like when my mother gave me one of her prized acrylic paintings, or the many afternoons I spent pushing my father’s wheelchair around the block. There was also the inevitable watery eyes that came on most car rides back to my house.

As an advocate for my parents, I got the chance to help and understand them in a way most people don’t. Though it was my job to speak for them when they couldn’t speak for themselves, the most important (and often most difficult) thing was to remember they were going through a much more difficult rite of passage than I was. And though I still mourn the loss of them, I honestly wouldn’t change the experience for anything. Caregiving forces you to consider the age old struggle of letting go vs. hanging on. It constantly makes you wonder if you did enough. And though it is certainly not an easy task, caregiving changes you, makes you more human. We all need more of that.

Caroline Johnson, 2018