A Prolonged Passing

On a son’s battle with a father in limbo.

By Jesse Mandell-McClinton

This past July, I returned to a muggy Delray Beach cemetery to watch the casket holding my late step-grandmother lower into the Florida soil beside my grandfather, who passed away in April. I’ve struggled with feelings of confusion and loss since natural causes quickly seized both their lives. Fortunately, they did not pass amid the hazy turmoil modern medicine has created for the end of many people’s lives.

Advancements in prolonging and sustaining life are a blessing for those who can recover from treatments and return to an ordinary lifestyle. However, when a body struggles to regain that pulse—as with my father and his battle with a terminal kidney disease—the ensuing emotional, medical, and even financial decisions made to extend a life have the potential to sour the delicate time people have left with their loved ones.

My dad has been sick for most of my life, and because of this, I have developed a personal numbness towards his condition. Regular calls from the emergency room, dreams about his death, even the development of intermittent seizures and midnight screams have become commonplace—just an embattled part of my life that’s evolved into normalcy. Unlike with my grandparents, long-burning questions have gradually been pushed to the back of my head to prevent my psyche from constantly grappling. Am I still able to gauge the fluctuating severity of his disease? When do we, or I, give up the fight to find alternative solutions? Is there a chance our family could no longer bear the medical cost before he’s ready to go? These questions no longer seem real to me. They are simply placeholders floating above an approaching period in my life I’ve exhaustively imagined and dismissed.

But that last question opens the muddiest part of the process: A shortage of funds forcing the hand of death is a terrible possibility, even in such a prosperous nation. According to the most recent averages from the National Association for Home Care and Hospice, a day in a general hospice can range from $650 to $850. Even though these costs are often covered in part by insurance and government programs, how, when forced to look from a checkbook to a dying relative, can these figures represent the difference between one or two more days of time with that person?

My parents and I often joke about my father enduring a life of complex medical problems to end up getting hit by a bus. Though morbid, it’s a way to defer the near-the-end conversations most families have trouble starting. Time and life flow together only for a stretch, and then the affinity snaps. Humans have been able to elongate the ties that bind the two, but in doing so have opened up a chasm in which the financial, medical, and emotional elements of our lives need to be prioritized. The only certainty in the process rests in the eventual loss of life—a reality that combines pressure to stall the inescapable, acceptance of inconceivable sacrifices, and a mind caught in the middle.