The story I’d like to tell today did not take place in Maine. Since it is a story about dying, however, the lessons are universal.
I haven’t published for about a month because I went to New York to be with my parents when my mother’s health took a sudden turn for the worse. I did not know at the time that I would be there to help navigate my mother’s final days of life. Though the experience was as heartbreaking and painful as anything I ever care to live through again, I also recognize that we were given a gift. It’s tempting to forget that every one of us and every person we love is bound to die. The question is, what can be done to make that inevitable life transition something ultimately manageable, or perhaps even beautiful, in memory.
Much to my mother’s disappointment, physician assisted suicide is not yet legal in New York. Don’t get me wrong, she never once sank into despair; she was a fighter to the last. After a double cancer diagnosis a year ago, at age 79, she and my father took the optimist view, stubbornly and persistently, through months of chemo and radiation. She was able to enjoy a big family celebration of her 80th birthday, Thanksgiving and Christmas.
The reappearance of her cancer in February caused the first significant erosion in my parents’ hopefulness. Then, when a relatively minor procedure led to a week in the hospital, it became clear that a return to any semblance of a normal quality of life was no longer possible. Even then, Mom stood tough.
“Just get me out of this hospital and into my own home, and I’ll be better,” she said.
We got her home, but the improvement Mom hoped for did not materialize. She experienced pain, needed to be on home oxygen, could not eat any solid food, and needed round-the-clock medication and attention. There had been little explicit conversation, but Mom’s discharge from the hospital had depended on being registered into home hospice care. Hospice, to most of us, meant she was dying. And yet, we still hoped for some kind of reprieve.
It was Mom who finally laid the cards on the table, but it was a hospice employee, a social worker, who facilitated the conversation. Kathleen, from hospice, came to visit and see how we all were doing. All the family sat together, and Kathleen addressed her questions to Mom.
“Tell me, Mary, what your thoughts are about all this. How are you feeling?” Kathleen asked.
“Well,” Mom began, “No one is really getting to the point here.”
The point, she went on to explain, was that she was ready to die. But she had never been able to spell it out quite so bluntly until she was talking to an objective nonfamily member. So began Mom’s journey of taking control of the end of her life, and our journey of helping her to do so.
Kathleen and all of the team of hospice workers helped us enormously to navigate the uncharted, difficult terrain that we faced over the coming days. It was neither legal nor advisable to assist Mom in any kind of immediate death, but she had the choice to stop all life sustaining treatments — no more medicine, no more oxygen, no more food or water. Because this choice can lead to severe pain and discomfort, the management of pain and anxiety becomes paramount. That was the job of Mom’s family, in consultation with hospice workers.
The ensuing days required a crash course in medical management and a marathon of emotional trials. And yet, there were moments of exquisite wonder: Mom cracking a joke, having her finger squeezed by a newborn great-niece, grinning at the furry attentions of a grand-dog.
She heard the news that her granddaughter was engaged, smiled, and said, “Wonderful!”
She asked us to sing together, made plans for her church service, sat in the hospice-provided wheelchair at our dining table, eyes closed, in a twilight kind of consciousness, but clearly experiencing a kind of contented joy.
The following evening, she took her last breath, quietly. No pain, no worry, at home, with family all around.
Without that decision to take control of her death, it is true that Mom might have lived for several more weeks. But it would have been living against her wishes.
“But Mom, what about those moments of happiness, when you’re with family?”
“It’s not worth it. Enough. No more. Please,” she asked us, before we finally agreed to honor her wishes. No hysteria, no distress, only a complete calm and assuredness. “Please, it’s time. This is what I want.”
Death is a personal journey, but it is important to know that it can be possible for death to be a journey of choice, empowerment, peace, and shared, loving release.
Robin Clifford Wood welcomes feedback at firstname.lastname@example.org.