Experts on Aging, Dying as They Lived
By Alexandra Butler
At 10 years old I knew my parents did not wish to be resuscitated nor plugged into machines in the event of serious illness. They told me they were not afraid of death but rather of being kept alive at any cost. I knew they would refuse medical interventions, if they felt there was no purpose except to separate the dying from their deaths. They were wary of doctors who my parents said were trained by a medical culture that had lost touch with what should be its major focus: ending suffering.
My father, Robert N. Butler, was a physician, a psychiatrist and a Pulitzer Prize-winning author who pioneered the field of aging. My mother, Myrna Lewis, had a Ph.D. in social work; her specialty was older women. Together they co-wrote books on aging, mental health, sexuality and public policy. They would have been tickled by the coverage a few months ago of the Iowa state representative Ross Paustian, a Republican, nose-deep in their book “Sex After Sixty” in the middle of a House debate over the collective bargaining rights of teachers.
My parents applied what they learned out in the field to their personal lives. They worked hard to put as much money toward their retirement and old age as they could so that my half-sisters and I would never be financially responsible for them. They told us where we could find copies of their wills and health directives, explaining that these documents clarified their wishes and we would not have to bear the full weight of making end-of-life decisions for them.
As a teenager I hated these discussions. I probably told them to stop torturing me and to stop being so morbid. They were reassuring me about scenarios that I did not want to think about. I could not have known how grateful I would be now.
My parents were prepared, but that is not the same as being ready. Few are ever ready to face the end of life, and often how we imagine living our last days is not the way we do. I was born to older parents: My father was 53, my mother 42.
By the time I was in my early 20s, they were in their late 60s and early 70s.
I began to fear that we would have to pull my father kicking and screaming from his professional life. I knew he would work until the last possible moment because work was his passion. I dreaded the day when physically or mentally he would be stopped from doing what he loved. My mom began to speak about her fear of losing him and the fact that she would have to face her own old age without him at her side. This was around 2003, the summer my mother started walking into walls.
She was angry with herself for her sudden clumsiness. Then one day she lost $400, which she had withdrawn from the bank moments before. On her way home she was almost run over in the street. The driver was so angry he stepped from his car to yell at her.
At home in our living room, little voices drifted through the window from a nearby playground and my mother sat staring at the wall. She seemed upset but said she was just tired. The next morning she phoned me crying from her doctor’s office. She was given a diagnosis of terminal brain cancer and told she might have only three months.
My parents had assumed my father would die first and had prepared for my mother’s widowhood. Now neither of them was able to comprehend or accept her diagnosis. They used a baseball metaphor that my mom came up with. She could run from base to base, she thought, until science had caught up with her disease.
Both of my parents knew from their clinical work the agonizing loss of self that can come with illness. And yet the true insanity of that is something you can never grasp until it is upon you. My mother was unable to do a single thing that truly mattered to her other than survive. She spent the last months of her life trying not so much to live as to get back to a mind that could process its own death. And then she was gone.
My father seemed to age 10 years almost overnight. He knew it. He spoke about what he was doing every day to stay in shape and engaged with life despite his grief. He followed the advice he would have given to his patients. He made sure he exercised. He made sure that he ate. He forced himself to see friends even when he was not up to it. He spoke about the fact that older men who lose their partners have high rates of mortality in the first year. He had clung to work during my mother’s illness, unable to fully face her grief and his own. Now his focus shifted to his daughters and his family. He was changed for the better after losing her. All of his relationships deepened.
To some extent, each of my parents lived out the scenario they had imagined for the other; nevertheless, their preparation had been worth it.
Five years after my mother’s death, my dad died of leukemia. He suffered something called a blast crisis, during which the body attacks its healthy cells, causing agonizing pain. But his doctor followed the plan they had formed together and he died peacefully without extraordinary interventions. He was in comfort and surrounded by his family.
I have a friend who is haunted by the way her parents died. Her family did not know how to discuss or plan for death. They thought any planning would be morbid. They were unfamiliar with palliative care and associated it with giving up hope.
But palliative care, simply stated, is the treatment of the physical and emotional pain that come with illness. It is a system of care that supports both patient and family. And in certain cases it can extend life.
To the small extent that we have any choice in this uncertain life, it is wise to face your own death. In a world where so many of our fellow human beings live with threats of terror and destruction, if you are lucky enough to imagine you might have any measure of control over how you die, that is a privilege that should not go to waste.
Our deaths are the last message we leave for those we love. How my parents died — in comfort — was the way they cared for me after they were gone. I was not ready to lose them in my 20s, but they had prepared and so I was protected.
Their legacy to me was not a given. The illnesses that took them were outcomes that our past selves would have labeled catastrophic, worst-case scenarios. And yet for me these worst-case scenarios, though painful memories, are dwarfed by a much larger story: how my parents lived, how they died and how gracefully they did them both.
Alexandra Butler is a poet and the author of “Walking the Night Road,” a memoir about losing her parents in her 20s.