Caregiver Spotlight: Caring for a Father with Bladder Cancer

Lars Wanbergs’s story was a submission to our annual Caregiver Story Contest. He was a finalist in our contest.

My father sat on the chair I had placed in the middle of the kitchen ready for his haircut. It would be easier to sweep up the silver clippings from the linoleum floor when I was done. I put on a playlist of music from the late 60’s and early 70’s, an era when I came of age and my father was in the prime of his life – a husband and father of four, a military officer and health care professional, and a life-long learner that returned to school at forty to earn his PhD. I gently tilted his head down and began to trim his hair just as “Here Comes the Sun” by the Beatles began to play.

Six months earlier my dad worried if he would have any hair at all to cut. He was in the middle of a 12-week course of chemotherapy to slow the progression of an aggressive bladder tumor and used the strands of hair that collected in the small brush he carried with him in his pants pocket as a barometer of his hair loss. Although not a vain man, at 85 years old his full head of hair gave him a youthful appearance and he joked with his oncologist more than once about his intention to keep his locks and thereby his strength.

My dad has lived a relatively healthy and adventurous life. After the death of my mother in a horse accident when I was 12 years old my father became the sole caregiver to me and my siblings. He never remarried, instead worked tirelessly on social causes that could better the lives of rural populations in his native North Dakota. While he zipped around the country on airplanes he surpassed the average life expectancy of 76.4 years – no one seemed to notice he was growing older. His own father lived to be 99 years old. My dad seemed ageless and unlimited in his energy and optimism. Caring for an ailing parent just wasn’t in my immediate plans.

But cancer has a way of interrupting life at any time and any age. When my dad was diagnosed with bladder cancer I knew my role in his treatment and recovery as a caregiver would be more than just a personal journey. It would be an empathic discovery of our relationship for both of us.

Ten years ago, when I was 42 years old, I was diagnosed with bladder cancer. It was a bolt out of the blue that shocked my world. I went from why me to why not me to thank goodness it’s me and not my wife or any of our three children. I filled notebooks with research, learned about every possible procedure and outcome, found the best surgeon at the best cancer center in my region and had the operation that saved my life. So when I accompanied my dad to his urologist appointment to get the results of his exam, my experience as a cancer patient was reawakened and my initial question of why me was answered: my cancer story would help me guide my father as intelligently and compassionately as possible as his patient advocate and caregiver.

Watching my father battle through post-surgery recovery from removing his cancerous bladder and building a new urinary diversion using a section of his intestine, much as I experienced ten years earlier, helped us know and trust each other in a very deep way. It would take painful little steps to slowly emerge from the haze of surgery to weeks in a skilled nursing facility and finally back home with home health care nurse visits, interrupted once for re-hospitalization for a bacterial infection.

Caregiving is a family affair. For every lost day of work, early mornings or late nights of nursing home emergencies, long drives to doctor appointments or the daily tasks of preparing meals and doing laundry, caring for my dad has been a shared responsibility with my siblings. The ongoing stress has the potential to divide people, but it also can bring families closer together. The more my dad talks about the distant past the more we are forced to reflect on his care for us when he became a widower and a single parent. Through this experience I have grown closer to my brothers and sister. Now, it is our turn to take care of him.

The morning sun began to filter through the kitchen window hitting the stainless steel faucet creating a sunburst reflection on the ceiling. As I trimmed the hair around his ears we discussed his upcoming CT scan and appointment with his surgeon to hear the results. As I slowly brushed his hair with his pocket brush, his eyelids grew heavy. I dusted off his shoulders and when I set his brush on the counter I noticed that the black bristles held no evidence of loose silver strands. There was a calm in the air, as if everything was going to be all right.