I was 16 when my maternal grandfather died. It was 5:00 a.m. on Christmas Eve when the phone rang, awakening my whole family. Through my closed bedroom door, I heard my father walk down the hall, answer the phone in a muffled voice and then call out to my mother. My stomach knotted: I knew no one called with good news at this hour.
As I shuffled into the kitchen, I saw my mother sitting at the kitchen table, a handkerchief held to her eyes. My father cast me a stony look. “Your grandfather died in his sleep last night,” he said.
Grandpa, who was 52, died because his lungs filled with fluid while he slept. I knew that he’d worked in the Pennsylvania coal mines from age 14 through his mid-20s to help support his family. I also knew from times I’d slept at my grandparents’ apartment that each morning he spent what seemed like an eternity coughing and spitting behind the closed bathroom door. That worried me, but I never thought it would kill him.
Long Day’s Journey into Night
Today, the story of death and dying is often different. After my grandfather died, my grandmother lived for another 48 years. Many of those years were reasonably healthy and happy. But at some point, Grandma---and my family along with her---entered an unfamiliar territory of protracted suffering, for which we had virtually no preparation or guidance.
Things went along smoothly for several years, until my grandmother was diagnosed with a large, fast-growing (but ultimately benign) brain tumor, which was then surgically removed. That was my first encounter with the kinds of advances in medicine that can extend life: if this type of tumor had invaded her brain even 15 years earlier, it likely would have been fatal.
The surgery saved my grandmother’s life, but it changed her. She sank into a state I can only describe as a mild melancholia, spending more and more time in the former family room, we'd converted into a bedroom for her. She’d venture out when we visited, but cautiously. In contrast to the outgoing woman I’d known as a child, she was now much more like my grandfather---standing on the outskirts of social interaction, looking in.
Then, as she passed age 85, she began to decline steadily. The mild melancholia spiraled into depression. She became more and more lethargic and uncommunicative. When I’d ask her how she was, she’d just shrug and murmur, “I don’t feel so good these days, Joseph.”
Then, one afternoon, as I sat quietly with my mother in my grandmother’s room, Grandma stirred. Her eyes opened and her head moved. Suddenly, to no one in particular and in a voice filled with pain, she asked: “Am I dead yet?”
I got up and left the room, fighting the urge to scream.
The New Grief
The grief we experience today results directly from the increasing ability of modern medicine to arrest or slow terminal illness and stave off death, even as the body and mind progressively shut down. I lost my grandfather whole, in one fell swoop; I lost my grandmother piece by piece.
The essence of the new grief is the gritty business of living with slow death. For those of us in developed countries, this experience represents a historic shift: never before, for so many, has death been such an extended process, rather than an event. Of course, people still die suddenly and unexpectedly, but with recent advances in surgery, drugs, medical devices, and other high-tech treatments, many more people die slowly. Protracted death creates special challenges for both patient and family.
The new grief is a twisting journey, which begins with the diagnosis of a terminal illness, proceeds through a period of treatment, may include a remission and a later return to illness, which possibly spurs a new round of treatment, and ends, finally, in death. This process may go on for months, or it may unfold for years. The ill or dying person is an integral part of the process---which creates protracted upheaval in the lives of the patient and loved ones alike.
A New Conversation
In spite of what’s clearly a massive social shift in the way we now enter and exit the domain of death, we still really don’t know how to talk about it. We haven’t yet begun to have the difficult, honest conversations---person to person, family member to family member, doctor to patient, therapist to client---that would help us better understand what to expect of this harsh landscape, and how to pick our way through it. It’s true that there’s been some attempt to get genuine dialogue going between medical providers, patients, and their families about end-of-life planning.
But just as important as conversations between patients, their families, and doctors about practical and medical end-of-life issues is the general conversation we all need to have about what the emotional experience of slow dying is really like, for both the ones doing it and those who must stand vigil. We need to help people, particularly caregivers and family members, break out of their isolation and talk in an open, candid way about the untoward---not to mention unwanted and deeply ambivalent---feelings that inevitably arise during the grueling slog through a loved one’s terminal illness.
As therapists, we’re uniquely well placed to engage people in this emerging conversation and bring this topic into the light of shared experience. Although we can’t protect our clients from the new, protracted process of grief (nor would we want to), we can help them seize opportunities to finish unfinished business. For clients who walk the long, twisting road toward loss, we can offer informed compassion, comprised of unconditional acceptance of the messiness of grief, some understanding of its newly crooked course, and a gentle way forward.
This blog is excerpted from “The New Grief". Read the full article here. >>
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