Dying Well. These words are, I suppose, a good example of an oxymoron. It’s something I think about with frequency these days—mainly because of the reports about those dying of the Coronavirus—which seems to me to be: Dying Unwell. And then there’s the recognition that more of my peers are dying these days—including those that are my counterparts in our family. In this case, I’m referring to my grandchildren’s “other” grandmothers. Two of them died of cancer, but—from my perspective—only one of them “died well”. The other? Not so much so.
Why? The first family confronted the topic of death head on. This counterpart grandmother was in the driver’s seat of her death as I suspect she was in life. The second family denied and avoided the topic of death. It appeared to me that this counterpart grandmother did not experience death on her own terms.
I am a strong believer in talking about life’s uncomfortable situations. I adopted that standard from the time that I realized how destructive it was to live a life of unspoken secrets—the life I’d lived since the approximate age of ten, when I first learned that my father had been diagnosed with a terminal illness and was only expected to live another four years.
As children, we are formed by the people, places, and events in our surroundings that are consigned to our formative environment without choice. The circumstances surrounding my father’s illness and death were not only heartbreaking—they impacted my ability to cope effectively. I was ill-equipped.
Development depends on the interaction between internal and external forces. Honesty and openness are good policy; duplicity fosters insecurity. Nothing was open or honest in how my father’s illness was handled. And then he died.
My life took a new direction late in 1958 when one morning I got up to go to school and discovered that my father was sick in bed and unable to go to work. I felt concerned because this was very unusual. His condition worsened and he was soon hospitalized with a medical crisis. The doctor told my mother that our father might die.
That evening, while my Mom drove my older brother and me home from the hospital, she told us that my father had a blood cancer and that he might have another four years to live. We were instructed not to tell anyone, including Dad. This is the way cancer was handled during those times. It became “our secret,” and was never discussed.
It was at this point—just as I was about to turn eleven years of age—that my childhood came abruptly to an end. Although I was chronologically still a child, I now felt an oppressive weight upon my shoulders. Girlhood was interrupted.
During my father’s last health crisis, he traveled to the Mayo Clinic for treatment. According to the policy of that institution, he was told of his diagnosis honestly for the first time. He contracted pneumonia and died there, never having returned home. We never got to say, “I’m sorry” or “I love you” or even “Goodbye.”
Grief is agonizing, and childhood grief is among the most excruciating forms. It deprived me of the opportunity to give love to my father and to be loved by him in return. I was alone in my grief; there was no one with whom to share the sorrow. During the time of my father’s illness, his death, and the years beyond, my mother was just not capable of attending to her own grief and to the emotional needs of her children as well.
Childhood trauma and the corresponding “loss” of childhood were the extreme hazards of my formative years; they required extraordinary coping skills that I had not yet developed. Without the benefit of an understanding and compassionate parent figure, I was vulnerable and needy. As a child left on my own to manage —how could I have remained emotionally healthy? My recovery was arduous, exhausting, and difficult to accomplish. It was grueling because there was so much, it was so intense, and it lasted so long. It was life-altering on a permanent basis.
If I were to choose what life experience defined me most, I would have to say it would be the unresolved grief due the death of my father. As a wounded child—I was forever changed.
I was at a caregiving conference many years ago, and attended a hospice workshop. A comment was made about the support systems available to children to help them through the trauma and grief of losing a parent. Upon hearing that comment, I found myself suddenly in tears, and thought, “Oh…if they would only have had something like that when I was a kid!”
It’s pointless to debate which types of grief are the worst—the hardest to bear. Grief hurts far beyond ordinary words—it is profound sadness; it takes your breath away because it aches so much. The child’s loss of a parent is one of the most difficult forms of bereavement, and childhood grief is among the most damaging. It confronts the child with the difficult task of adaptation. It requires the guidance of a capable parent figure, someone from whom to draw strength, someone to receive and relieve the child’s distress.
The death of a parent is life-altering on a permanent basis; it is a severe emotional wound and engenders a longing of incomparable amount, intensity, and longevity. The pain of my father’s death was exacerbated by the fact that it was verboten for us to talk to him about it or even to our mother for that matter—ever.
It has now been nearly sixty years, and yet the pain of it never goes entirely away. Although acute mourning subsides, we remain forever changed. I was literally formed by the conditions and context of how my father died.
Eventually, bottling up became so profoundly painful, that I did a 360 degree turn and became blatantly honest—a characteristic that set a whole new set of complications into motion. Any attempt to hold back and to be more prudent with my remarks just creates anxiety. For me, the consequences are better than the alternatives. This is why I cannot just ignore problems and move on; I have to actively deal with them before I can put them away.
Honesty. Openness. Love. Memory. Communication. I believed this was the route to strength and growth. I believe that the journey would have been less difficult if that approach had been used from the onset. I think the following NPR TED Radio program “Dying Well” bears this out.
On this program, Jason Rosenthall shares the story of his wife Amy’s death from Ovarian Cancer.
Amy wrote an essay about her life, her husband, and her impending death. She said, “My husband is a great guy, and he’s available.” Although she wanted to spend more time together with Jason and their children, she wanted to liberate them to move on in life without her. She did that by saying, “You may want to marry my husband,” with the hope that if the right woman would read it, find Jason, and another love story would begin. Amy wrapped it all up on Valentine’s Day.
On the TED Talk, Jason tells his Story of Grief:
Our love grew up until last day. I have memories that haunt me, such as when I carried Amy’s lifeless body downstairs and through the house to the gurney waiting to take her to be cremated. I will never get that out of my head.
He admits that milestones are always difficult to get through, such as his son’s college graduation, and his own birthday. “There’s always something to remind me of our life together.”
I could not stand to be alone with these feelings and images. I want to take the taboo out of it; to talk about it and not be afraid of it. Thanks to Amy, he learned how to talk about dying without fear, to make plans while there is still time, and to plan for a good death. He says its better to have these conversations while healthy, and that being able to talk death openly was liberating.