Finding the Dignity While Dying—Is It Possible?

Our breath comes in pairs—we inhale and exhale—one follows the other in a syncopated rhythm—perfect pairs, a Noah’s Ark of breaths. Except, of course, for our first and last, they have to wait a lifetime--our lifetime—to make their connection. During the time we are granted between those punctation points, we do our best to resist the inevitable end. We do all the right stuff, take vitamins, exercise, eat sensibly…as if they will provide us with suitable amor. Yet regardless of our efforts, we all have our exclusive appointment with death. This is a story of watching three people I love face that moment. Let me introduce you—my father, brother, and mother who in the space of five years all died.

My father and mother were constructed of hardy stock and physical deterioration seemed to have bypassed them both as they grew older. They were active athletes and travelers into their 80’s—in fact, my mother didn’t retire until her 90th birthday. But the body has its own timetable and my father’s stroke when he was 82 began the slide that led to his death four years later. Physically he remained strong but mentally, my quick-witted and dazzling father, began to lose his cognitive grip. So began my first exposure to the hospital/nursing home/rehabilitation center/home care shuffle. Anyone who has dealt with a loved one’s prolonged illness may recognize this depressing roster of facilities. The order of entry doesn’t matter—once the patient boards the illness express train, there is no getting off at any station. It rolls along in its unruly fashion wreaking havoc in its wake. I also learned that with each health event that pushes the patient into the health care continuum, he emerges twenty-five percent erased from when he entered.

Before my father lost his capacity to speak, he often told the tale of his old tennis buddy who, upon hearing of the recurrence of a terminal cancer diagnosis, walked to the ocean on a frigid January day and dove into its freezing waters, never to re-emerge. No rocks in his pockets, just a definite end point and the desire to avoid more treatments designed to add little quality to what remained of his life. At that time of his friend’s death, my father was recovering in a rehabilitation home after one of his hospital admissions. His gaze fell on the other souls surrounding him, immobilized in wheel chairs, beds or other contraptions—unable to move or feed themselves. In those moments, I think he admired his friend’s courage to choose differently. To walk like a man on his own two legs and jump for the last time in the chilly waters of the Atlantic Ocean.

My father whose sharp decision-making skills defined his life, recognized that he had been stripped of his ability to make any choice beyond eating Jello or pudding for dessert. It was heartbreaking to see how defeated he was by the awareness of his new limited existence. I am not offering a critique of the medical system or any judgment on euthanasia, I am only expressing the bewildering helplessness of witnessing the extended illness of those we love. And how hard it is for patients who are trapped in this cycle; particularly when they lose the ability to speak in a coherent flow. During the last week of his life, my father seemed to take the measure of his situation and just opted out of eating. Fortunately, he was under the care of hospice so he didn’t have to suffer through any discussion of feeding tubes. He had lost the capacity to speak, walk or do anything on his own but when I looked in his crystal clear blue eyes, it seemed he made this final choice. His own terms. Not quite as dramatic as an ocean exit, but it was all he had.

The death of my father was hard on us all, but it does follow the natural course of life, my brother’s death to cancer a mere two years later, was wildly unexpected. My three other siblings and I awoke to an email from my brother Bill with the subject, “Bill’s health has taken a turn.” Ever the analytical one, he didn’t deliver an emotional rendition of his condition. Just an informed version of the facts. He had been diagnosed with advanced cancer and he was hoping for treatment but was aware of his prognosis. Bill was a military man, retired Air Force, and was stoic and heroic to the end. When the doctor prepared to deliver the bad news regarding the advancement of the disease, Bill stood—ramrod straight. He explained to the doctor that in the military bad news was always delivered and received while standing. To his credit, the doctor didn’t hesitate and immediately stood. His wife, my sister-in-law followed suit. Small consolation yes, but I can’t help but smile as this gesture explains his character in a way that words cannot. In just a few weeks following that meeting, he was gone.

I went to see him the day before he died. He wanted a cheese burger from Burger King. He hadn’t been eating but I brought it to him. He must have been in tremendous physical pain but he sat at his dining room table, his fingers playing with the paper surrounding the burger. He opened it and savored the aroma but never brought it near his mouth. We sat in silence as emotion played over his face. I could see he wanted to hold in his memory this trivial encounter with a cheeseburger. The sweet simplicity touched him deeply because he knew he had few moments like that remaining. I left him that night and said I would be back the next day but I didn’t see him alive again. My brother was a wise man in life but in his dying, he showed me the grace found in the simple mundane acts we take for granted.

Losing my father, her partner of over sixty years was devastating for my mother, but losing my brother—her son—was a fatal blow which seemed to open the gates for illness to enter. Less than a year after Bill’s death, my mother fell ill shortly after her 90th birthday. For me, my mother’s sickness took the hardest toll…maybe because she’s my mother or maybe it was because I had seen this movie already and knew how it ended. I found it was necessary to put my emotions into some container—walking around in a muddle of emotional rubble was not an option for functional living. In retrospect, I’m not sure how functional I was but living doesn’t cease and my mother needed me. My mother’s illness started with pneumonia, but she survived (barely). First came the oxygen delivery, and with a steady stream of oxygen being supplied via a long green tube that my brother affectionately nicknamed “the green snake,” she was essentially homebound. Then, came the tumbles, one fall fractured her ribs and another her pelvis.

Seeing my strong, cheerful, resilient mother slip away a little more each day, helpless to change the outcome, was a daily torment for all of us. But what options do we have? The body rolls along, the processes of life continue to churn, the machine keeps calibrating—until it stops. A wise friend once told me, “The person who is dying is learning but so are those surrounding her.” True. I am left wondering what am I to make of the third member of my family to linger along and die in a sad bewildered fog? My brother’s death was one of physical pain—the cancer when it set up shop moved quickly and devored his strength. My father and my mother lived in some netherworld that robbed them of the words and actions that we take for granted.

During the last year of her life, she had full time care. I became used to seeing her settled in her hospital bed, surrounded by soft blankets, her body so thin that any contact with the metal rails caused her pain. She was like a child in so many ways—some were good—she was fully in the moment. She cried easily, smiled easily and told me over and over that she loved me. All those years of restraint and pent up British reserve had evaporated. She was no longer rigid. On one visit, she greeted me with a warm smile and said, “I’m giving you this house and everything in it!” I laughed and said, “Oh really, just me? I’m not sure my siblings will like that.” She waved the objection aside and with her beautiful smile turned to her companion and caregiver, Joy, and said, “And you…I am going to give you something too…you can have my middle name!” The three of us laughed and shared in her pleasure. With hospice and Joy’s loving care, my mother was able to pass away peacefully in her home. The term “pass away” may sound euphemistic but in my mother’s case, during the last week it really was as if she simply passed from this world to the next. While she was still able to speak, she talked about train schedules, boxes which needed packing, beautiful visitations from angels, and conversations with old friends. While some would argue it was the morphine, I saw it as the planes of life and death melding and shimmering in a harmonious dance—a ticket that only the dying can redeem. I have no doubt her strong faith carried her to God and a reunion with her beloved husband and son.

In all three deaths, I see how my loved ones tried desperately to hold on to their dignity in whatever manner was left to them. There is deep meaning in the gesture of a man touching a wrapper of a burger, or of one who declines food, or that of a woman who freely offers gifts of the heart. We retain our spark until the last.