I was 14 when both of my parents were diagnosed with cancer at the same time. Being an only child, the ensuing years of hospitals, surgeries and chemo treatments were lonely ones. When I look back I don't recall there being many choices about the way things unfolded.
But we always have choices, don't we?
As my father approached a surgery date for his prostate cancer my mother was suddenly diagnosed with stage-four colon cancer. Hers illness, being much more dire, displaced my father's surgery and our small family plowed into a roller coaster of treatment options that in 1992, didn't look that different than they do today.
I know that my parents attempted to explain to me what was happening, but all I really remember are the extended (i.e., welcome) absences from school, sudden gifts of long-coveted toys and the boon of lightened homework assignments. I also remember the sense of false optimism that pervaded our home and the bitter taste of regret once it was peeled away.
Looking back, almost two decades later, so much seems obvious. It took me years to understand what happened, part of that process resulting in a memoir entitled The Rules of Inheritance, but when I did the mistakes were glaring. My mother's inability to discuss her illness with me, the fear-based decisions that dictated the medical treatment she received and the years of confusing grief that followed in her absence.
She died when I was 18 years old, during my freshman year of college. My father died seven years later when I was 25. Between their deaths both he and I learned from the errors we'd made during my mother's tenured illness and gained a decidedly different experience as a result.
At the end of my mother's life, when her doctors informed us that there was nothing more they could do to stave off her cancer, they suggested hospice and that she go home to be with her family so that we might all face the end together. Instead, in a desperate act, my mother opted to seek treatment at an alternative medical center, one known for conducting surgeries on "last hope" patients. Despite the radical procedures she underwent, she was dead within two months, and none of us, including her, had the opportunity to come to terms with the end.
It was a process I would witness over and over and over again years later when I became a grief counselor for hospice. Through the use of home visits from nurses and doctors, along with chaplains, counselors and social workers, hospice is a service that helps dying patients remain comfortable in their final days. Most of the patients that came to our hospice had weeks, if not months, left live. These were the patients who benefited the most. Using a team approach we were able to prepare, not only the patients, but their families as well, for death.
The doctors and nurses worked on a palliative level, finding medications that brought comfort, and the chaplains, social workers and volunteers helped the entire family to plan for death, not just emotionally, but financially and practically as well. Dying isn't easy and it's something that our culture has perhaps never known how to do gracefully. Death in this country is something that is shunned and tucked away and denied until it is right upon us, too late for us to do anything but stagger under the suffocating weight of its very real presence.
Occasionally our hospice would take on a patient who had only days or even hours left to live, a swift reminder of the failure of so many of today's medical doctors to work with families in an attempt properly face the threat of a patient's demise. As the team grief counselor I listened to lamentations from those family members and they were similar to what I experienced when my mother died. I wish I had understood that the end was so near. I wish I'd had a chance to say goodbye.
When my father again grew ill, seven years after my mother's death, he knew he didn't want to die as my mother had, in a hospital, taken to the very brink of his physical existence by treatments that everyone knew would probably never work. When the radiation he was receiving ceased to show beneficial signs, my father signed off with his doctors and signed on with hospice. He returned home to his little condo in Southern California and, even though I was only 25 at the time, I returned there too and cared for him.
When he died, it was after six weeks spent peacefully in his own home, well cared for by myself and other family members, aided by a hospice team who worked to ensure that we all had the support we needed. I was holding his hand when he took his last breaths and we'd said all that we needed to say. Even in those last moments I already knew that, unlike my mother's death, none of us would have any regrets, an experience I wish more of people in this country could have.
Claire Bidwell Smith is the author of a memoir, The Rules of Inheritance [Hudson Street Press, $25.95].