My mother and I are sitting together in the living room of my childhood home outside of Boston, as she uses a suction machine to clear away excess mucus that gathers in my father’s throat to help him breathe. I prepare a hot compress, which she applies to his head, providing some temporary relief from the pain caused by a fast-growing tumor that has distorted his neck and face.
“There’s a whole new level of threat now. It’s completely changed how we care for him,” my mother says.
As of Thursday, the Massachusetts Department of Public Health had reported 108 statewide cases of the coronavirus, a figure that has steadily increased in the past week alone. All across the country, schools are closing and public events are being canceled. On Friday, President Trump declared a national emergency.
At 76, my father, already debilitated by severe illness, is among the most vulnerable to the coronavirus. For over 15 years, he’s battled multiple cancers, most traumatically acute myeloid leukemia. After receiving a successful bone marrow transplant, he developed graft-versus-host disease, a debilitating chronic illness in which the body attacks itself, mistaking donor cells for harmful foreign entities. Still, living with a chronic disease has never stolen his love for life and desire to travel, read, talk politics and indulge in science fiction movies. He is still the same soulful, brilliant man who devoted himself to being a dad.
A few months ago, before the coronavirus was labeled a full-blown pandemic by the World Health Organization, my dad’s cancer returned. Despite an extensive operation that removed part of his tongue, the excised tumor spread and became terminal. My father, desperate for more time with us, opted for chemotherapy that might extend his life by several more weeks or months, depending on how his body takes to the treatment.
With the clock already ticking for the time left we have with my father, the coronavirus has added a new layer of anxiety and fear to an already delicate and complicated situation. Despite taking all the necessary precautions of constantly scrubbing our hands, limiting all nonessential visits and disinfecting every nearby surface, my family and I are terrified of infecting him with covid-19. Now, the coronavirus is reshaping how caregivers like my mother navigate the realities of caring for chronically ill loved ones.
When his cancer returned, my father requested at-home hospice over moving into a senior care facility. As his primary caregiver, my mother administers hourly feedings through a tube in his stomach, plus oversees all major aspects of his care, such as arranging transportation to doctors’ appointments. It’s no exaggeration: Each trip outside of the home to fill a prescription or buy toilet paper fills us with anxiety. We accompany him to the hospital for weekly chemo treatments, where, despite the mask he wears, a passing sneeze or cough could herald disaster.
Even the nurses make my mother nervous. To limit the risk of exposure, she requested to stop his former rotation schedule of different visiting nurses. Despite everyone’s best efforts to keep healthy, it’s impossible to know who might be a carrier. And her concerns are not irrational. Although people are believed to be most contagious when appearing sick, the Centers for Disease Control and Prevention believes that infection might be possible before infected people show symptoms.
Even the weekly shipments of medical supplies that keep my father alive — canisters of saline wound solution and Jevity, a calorically dense liquid food for his tube feedings — are held suspect. My mom disinfects everything before it comes into the house. “I constantly wipe everything down,” she explains. “I feel terrible turning down loved ones who want to visit or deliver groceries. I can’t help but wonder what or who might be contaminated.”
Despite being understood as primarily a respiratory virus, transmitted through airborne droplets from sneezing and coughing, new reports state that covid-19 can live on surfaces anywhere from three hours to three days, depending on various environmental and material factors.
Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, recently stated that “many people in the United States will at some point in time, either this year or next, be exposed to this virus and there’s a good chance many will become sick. … Fifteen percent to 20 percent of the people who are exposed to the virus get severely sick.”
The thought of my father being infected by the coronavirus, which would cause him even more suffering and surely kill him, is terrifying. But the prospect of not spending these last weeks or months of my father’s life beside him is even more devastating. Although nonessential visitors are dissuaded, where do we draw the line if a relative or an old friend wishes to reconnect and say goodbye? Will limiting others to a phone call or a Skype video chat be seen as deeply insensitive, even unforgivable?
In coping with the overwhelming uncertainty of my father’s situation and the threat of the coronavirus itself, my mother believes that adhering to a structured routine has kept her grounded. Waking up at the same time every day and maintaining daily habits — however small, such as meditating for 10 minutes during lunch or going for a brisk walk after dinner — helps combat that crippling stress.
For me, feeling connected to and supported by others is crucial. In addition to regularly seeing a grief counselor, I utilize social media as a means of reaching out and checking in with friends and loved ones, especially when social distancing threatens to further isolate us.
The coronavirus threat is a stark reminder of how invaluable and finite our time is with one another, especially those we love. To live life is to embrace relentless uncertainty. My father’s condition forces an immediacy to every moment we have left together. In his presence, whether we’re discussing old memories or enjoying an episode of “Star Trek: Picard,” my anxiety and despair often recedes into a tender calm.
It’s hard not to stare, wishing I could hold him forever in my gaze. In this uncertain space, love is stronger than fear.