Bel Air, Maryland, United States
|Photo by Gert Stockmans on Unsplash
The unsung heroes of hospice are the family members and friends who are there to console their loved ones when all others have gone to bed. They are the ones who never rest, constantly brooding over how to best mitigate their loved ones’ pain, and ensure that their final days are as meaningful as the earlier ones. As a hospice volunteer, I am continuously inspired by their resilience, selflessness, and devotion to service. Below are some of their stories.
Debbie does not know how she did it. The physicians said that her then twenty-four-year-old husband would not survive long after a tragic bicycle accident left him quadriplegic. Yet under her care, he defied those odds and lived until the age of seventy-two.
Caring for her husband provided Debbie with a sense of fulfillment she had never experienced before. Therefore, upon discovering that her neighbor and longtime friend Patricia was entering hospice care several months ago, Debbie volunteered to become the primary caregiver, stepping in when Patricia’s immediate family could not.
Patricia is a ninety-three-year-old woman whom Debbie adoringly describes as a “beautiful soul” who “never has anything bad to say about anyone.” They bonded over their love for music, particularly the piano compositions of Chopin and Debussy, and their fondness for Debbie’s chihuahua, Luna.
Despite her overall sunny disposition, Debbie’s voice is tinged with weariness, and her mood wavers with Patricia’s fluctuating cognition. Debbie endures excruciating back pain from heaving basins of water from the first-floor bathroom to the second floor to bathe Patricia, and her body aches from many sleepless nights. Through tears, she details her struggle to remain optimistic while watching her friend, once witty and loquacious, become reticent, agitated, and disoriented. Yet Debbie’s passion for service will not end with Patricia. She is currently pursuing a degree in human services and social work. “I want to become a therapist and maybe open my own behavioral health clinic one day,” she tells me. “I really think that helping others is what I’m meant to do.”
Michael’s wife, Laurie, developed multiple sclerosis in 1992. As Laurie’s cognitive abilities deteriorated, they both moved into an assisted living facility. “Forty-nine years ago, I said ‘I do’ and here I am, keeping that promise,” Michael says. He chronicled his first date with the love of his life, including his encounter with her territorial ten-pound Siamese cat. Now Michael spends his days tending to his wife while struggling with his own dizzy spells. He chuckles as he describes a typical situation: “The wife calls for me. I stand up. The room spins for thirty seconds or so. I walk over and see how she’s doing.”
Laurie slips in and out of alertness, sometimes questioning where she is and why Michael administers her medication “at midnight” when it is, in reality, midday. Michael has not yet directly disclosed to his wife that she is in hospice—a moral conundrum faced by many caregivers of the terminally ill.
Michael expresses gratitude for the aides and nurses who relieve him from his caregiver duties for part of the day, yet he understands his vital role in his wife’s care. “If I drop dead, there is no one to take care of my wife,” he states bluntly. His sons live hundreds of miles away, pursuing their own careers and raising their own families. To cope, Michael leads a supportive partners’ group for spousal caregivers in similar situations.
It is difficult for Tess to accept that her father is dying. Her mother had gone through hospice care three years ago after a long battle with melanoma. Her husband died just a few months ago. Now her father lives off blood transfusions, and his health is rapidly declining. He weighs barely one hundred pounds, a fraction of the weight he was before his diagnosis. He was a star athlete in his college days and a high school football coach as an adult, known for his infectious energy and distinctive bellow. She chokes back tears as she explains, “His body is giving out, but his mind just will not let go.”
As an only daughter, mother, grandmother, and widow, Tess shoulders an immense amount of responsibility. As she speaks with me, I hear her four-year-old grandson and two-year-old granddaughter shrieking excitedly in the background. In spite of the losses she has suffered and the grief she has yet to process, Tess finds ways to laugh. She recounts her recent chaotic adventure while shopping, scrambling to find the ingredients for her father’s favorite potato soup.
Jacob works fifteen-hour days in home improvement to offset his mother’s hospice expenses, so he hires a full-time aide during the day. He continually prays for her recovery. Once he arrives home, he assumes responsibility for the cooking, cleaning, and bathing. His mother loves his beef stew, a recipe he has perfected over the years. Caregiving is his passion. His dream is to open and operate his own assisted living facility, and he is well on his way. He already has a location set, contractors hired, and a registered nurse on board.
Over the weeks I speak with him, his mother’s symptoms improve and stabilize. On our final call, he excitedly reveals that she will be discharged from hospice and moved to palliative care, as she has surpassed her projected six-month life expectancy. “I did not expect this at all!” he exclaims. “I am so grateful that my prayers were answered.”
These are among the millions of relatives and friends who make a profound impact on those for whom they care. Often greatly under-appreciated for their service and sacrifices, they are invaluable pillars of the hospice care system. With increasing demand for hospice care,1 the need for family caregivers is growing. Supporting and empowering caregivers is imperative so that they can best take care of the ones they love.
- Lupu, Dale, Leo Quigley, Nicholas Mehfoud, and Edward S. Salsberg. “The Growing Demand for Hospice and Palliative Medicine Physicians: Will the Supply Keep Up?” Journal of Pain and Symptom Management 55, no. 4 (April 2018): 1216–23. https://doi.org/10.1016/j.jpainsymman.2018.01.011.
JULIA ANGKEOW is a rising senior and premedical student at Columbia University. With her hospice volunteering experiences in mind, Julia aspires to help normalize conversations about death and compassion-based care in the medical field, as well as shed light upon the importance of supporting families and caregivers as they begin the devastating process of saying goodbye.