Abstract
I
My friends, professionals in other fields, ask with sympathetic inquiry “how do you do it? It must be so depressing,” and yet I almost always reply that this work is part of who I am, like the color of my eyes, or the breath from my lungs. It is through this work that I often receive more than I give, as it is in the very midst of these relationships that I discover something bigger than myself.
I was not new to personal loss. My beloved grandmother died at age 104 years in October 2013, and my sister, age 58, in January of 2016, related to complications of developmental delay and Lewy body dementia. These deaths were expected, and somehow felt “right,” ending long suffering for two loved ones who no longer had the strength or will to go on.
And then, just a few months later, there was my mother in her 85th year, dying before my eyes. She was bigger than life at times, a force to be reckoned with. Despite her stage IV cancer diagnosis, she continued to live with determination, and was never ready to give up. And as her frail body marched on in its progressive decline, her sharp mind pushed away thoughts of dying. “Hospice is for people who are dying” she said, only two weeks before her death.
Then there we were, celebrating Easter, and her birthday, only days before her death, sitting around the old oak table, watching her savor her favorite foods, and open gifts she'd never use. Only 90 hours before her death, and yet I did not see it coming. Oh yes, my intellectual self, the “professional me” had proclaimed a prognosis of 6–12 weeks, even hearing my wonderful mentor's voice saying “some people get a little longer, which is great, but some people have a shorter time.” But that was for other people's mothers, not mine.
So when the next 24 hours brought that “fall off the cliff,” I was not prepared. We opened her to home hospice that morning, and my father, her ever present caregiver, carried on. “It has been a bad day, he told me when I called after work. The hospice nurse called a few hours later, and I heard the words I have so often spoken to others, “you better come.”
There she was, pale, in pain, with distended abdomen, cool and clammy, and my professional self kicked in. I spoke with the nurse, and the on-call doctor in my comfortable medical dialect. I listened with borrowed stethoscope to bowel sounds, heart, and lungs. Oh so wisely I thought, I asked to be the daughter, not the palliative care expert. With the hospice team's expert guidance, I administered the morphine, and Ativan, held her hand, and rubbed her back. Her pain did not ease, and at home, without my electronic medical ordering, the nursing staff ready with subcutaneous disks and opioid drips, I felt utterly naked.
As we waited for the ambulance to bring her to the inpatient unit, the “professional me” phoned the hospice nurse to share my fear that she would not make the trip. And yet, the “daughter-me” did not see it—the tachypnea easing, the light fading from her eyes, the slip into unconsciousness, her life spiriting away. All happening before my eyes, and yet it was my heart that was blind. And as she took her last breath, the “daughter-me” cried out in sheer disbelief, “I think she is dying now.” And it was my father who said those comforting words the “professional me” so often murmured to the loved ones, to the ones left behind. The one who stayed strong like an anchor in the sea of loss.
Nothing can truly prepare us for the death of a loved one. Years of experience in guiding others on this end of life journey did not prepare me for the loss of my own mother. I took my employee-allotted three days of paid bereavement time off, and then added vacation leave as well. Eventually I had to return to my career of caring for other dying patients and their families.
This is when my grief quietly enveloped me, like a heavy gray fog, stealing the once loved passion for my work. To borrow a phrase from a coworker: “my give-a-damn was busted.” My compassion cup was empty, and I was completely lost as to how to fill it once again.
I walked through my days feeling like I was under water, counting the hours till I could go home. I longed for my days off, when I could escape the pain I saw all around me every day. I did the tasks of my daily work, wearing a mask that I thought hid my pain. I felt guilty that I was not as attentive to the needs of others, and was numb to their distress. My inner critic chastised me for being unable to “get a grip” and carry on. And then one day, a wise colleague asked how I was doing, and I feigned ignorance, proclaiming I was fine, why was he asking? He carefully nudged open that shut door, and got me talking about what was really going on.
It was time to take the advice I gave out so many times to others, and sought out the hospice bereavement counselor. In these sessions I began to unpack the grief of many losses: divorce, death of my beloved grandmother, breakup of a long-term relationship, sale of my home where I had raised my children, the serious illness in my sister in law, and the deaths of my sister and mother.
As caregivers, we sometimes feel that we must be ever strong, roll with the punches, and maintain our professional persona despite personal stress. We experience a traumatic loss, at home or work, and yet we are expected to gather the fractured pieces of ourselves, and move on to the next room as if nothing extraordinary just happened. We are not immune to the tide of emotion and suffering that surround us in our daily work, and must acknowledge and accept the need for self-care and compassion to heal those wounds.
With the passage of time, the dry hard ground of my grief has begun to soften, and the tender shoots of passion for my work have started to bloom once again. The richness of my own losses has brought new depth and meaning to my work. And the answer to the question I am asked so many times, “how do I do it?” remains the same: in these experiences, I truly receive more than I give.