Caring for Mom in the Time of Covid

0:00 The author’s mother, Jennifer Brown, celebrated her 80th birthday at the New York Botanical Garden. By Melissa Grieco On February 23, 2020, as the […]

Published March 18, 2022 2:18 AM
8 min read

0:00

The author’s mother, Jennifer Brown, celebrated her 80th birthday at the New York Botanical Garden.

By Melissa Grieco

On February 23, 2020, as the rest of the world was transfixed by the spread of an alarming new virus in Wuhan, China, I was rushing my mother to the Emergency Room at Greenwich Hospital. Earlier that morning, she had called me complaining of nausea and, while she was talking, I thought I heard a slurring in her words.

Two days before, we had enjoyed a lovely mother-daughter lunch together at the now- defunct Koo restaurant on Purdy Avenue. I was convinced that something she ate at lunch had caused the onset of nausea, but peculiarly enough, she wasn’t displaying the classic symptoms of food poisoning.

The ER doctor ran a battery of tests and hooked my mother up to an IV spiked with anti-nausea meds. A couple of hours went by while we patiently waited for the various test results and, as I was sitting watching my mother nap, I noticed she was muttering to herself and saying some very outlandish things. When she told the ER doctor that he was her dentist, he immediately ordered a CAT scan of her brain.

Almost exactly two years later, my mother passed away from the aggressive brain tumor that was discovered that day. At the time of her diagnosis, my mother was a trim, fit, and busy 78-year-old. She neither acted nor looked anywhere close to her age. She led an active social life, was an expert gardener, and facilely finished New York Times crossword puzzles. In fact, I was convinced that she was so exceptional in every aspect of life that she would escape mortality for decades to come.

The last two years have been a surreal and horrifying time for most everyone. In my immediate family’s case, the Coronavirus added yet another layer of complexity, fear, and stress to the battle for my mother’s life that we were suddenly launched headlong into. With hindsight, however, I now realize that the pandemic provided an unparalleled opportunity to care for my mother in a way that might otherwise have been impossible.

We were lucky enough to fast-track resection surgery for my mother in early March 2020, before the virus had made significant inroads into the hospitals. After a six-week post-surgical healing period had transpired, the virus was now rampant, and the oncologist was more concerned about mom’s potential Coronavirus exposure than he was about anything else. He recommended a truncated, but intensified, three-week course of radiation and chemotherapy in order to reduce the number of daily visits to the treatment center.

My mother began chemoradiation in mid-April. By this juncture, a nationwide shutdown of work, schools, and everyday life was underway. This shutdown mirrored how I was feeling inside — my beloved mom had been diagnosed with a terminal disease and my whole world was upended. It seemed only natural to me that everything would shut down in response to this development. I believe that it would also have been harder for my parents to handle my mother’s sudden illness if life had been continuing like normal for everyone else, because up until that point, they led such active and extroverted lives.

The fallout from the pandemic meant that my pulmonologist brother-in-law was now required to do long rotations in the Yale/New Haven ICU caring for sick and dying Covid patients. Given that he had to quarantine from his family during these stints, my sister decided to leave him the run of their house, take the kids, and move in with my parents for the first few weeks that he was on ICU duty.

The timing happened to serendipitously coincide with my mother’s three-week chemoradiation course. My sister is also a doctor, so this meant that my mother had a live-in MD taking her to appointments and caring for her while she went through her intensified treatment. My niece and nephew’s school had gone fully remote, so they were able to attend class from their grandparents’ house, while providing a soothing and distracting presence.

The successful surgery and follow-up treatment were no doubt critical in keeping my mother’s tumor stable and at bay over the next 24 months. However, it is the fact that she not only survived but “thrived” for two years – and proceeded to outlive all her doctors’ expectations in the midst of a global pandemic — that I believe makes our story unique and worth sharing.

I remember the first shockwave of disbelief and fear course through me when my mother said “I suppose I’m at the end of my life now” on the heels of the tumor discovery. I’ve always been very close with my mom and I managed to suppress those terrifyingly disorienting feelings for the next six months as I went through the motions of life, using the ever-present specter of the pandemic to distract from my own fraught situation.

It was while I was food shopping for my parents at the new Wegmans in Harrison that it suddenly hit me like a Mack truck. As I was perusing the cracker aisle, marveling at the endless array of options, I realized that my mother would never get to experience this cathedral of supermarkets with me, at least not in any sort of normal fashion. My whole psyche was suddenly gripped with anticipatory grief and existential dread. I can honestly say that I walked into that vast and shiny food complex as one person and came out as another.

Although my parents had briefly explored a future move into an assisted living facility before my mom’s diagnosis, the pandemic-driven nursing home deaths meant that any consideration of that was now null and void. Besides, my parents loved living in the dream home they’d built several years earlier in downtown Greenwich. I was fortunate enough to be living in Rye while now working remotely, so was able to become a lead caregiver for my mother, along with my father and sister. I knew that I wanted beyond anything to play a critical role in caring for mom while fulfilling my parents wish to remain in their home.

My mother’s diagnosis was accompanied by an immediate loss of her driving privileges. This, along with the constraints imposed by Covid-19, meant that her world shrank suddenly and dramatically overnight. I immediately scaled back work and activities —already heavily impacted by the virus — to spend as much time as possible with her. I drove her to doctors’ appointments, accompanied her on daily walks, and took her out to Covid-safe al fresco lunches. Within a few months, my husband and I decamped to Greenwich, moving just down the road from my parents. This enabled me to be even more involved in my mother’s daily care.

On the outside, my mother looked almost entirely the same. Her surgery scar was concealed by her pandemic-length brown locks. However, a subtle and slow mental deterioration was underway. Right after the chemoradiation treatment ended, mom started experiencing difficulty finding the right words with which to fully articulate herself. She displayed problems with both short- and long-term memory. She was often confused and conflated her brain tumor diagnosis with the pandemic, as their onset occurred at exactly the same time.

I recall my mother saying to me in the summer of 2020, “Because of my tumor, I lead a very simple life these days.” I replied, “Mum, everyone is leading a simple life these days, because no one can travel or go out because of the pandemic.” She fell silent in an attempt to fully process this concept. On the one hand, I wanted her to appreciate that she wasn’t missing out on life, because everyone was sheltering in place. Her friends weren’t going out to dinner parties or garden club meetings without her because they were all stuck at home watching Netflix. On the other hand, I was sad that the shutdown meant that she wouldn’t be able to indulge in all that she liked to do in the limited time she had left.

Despite the grim medical prognosis, my mother’s monthly MRIs consistently showed that the tumor was stable, if not shrinking slightly. By February 2021, a year after the diagnosis, my parents were both fully vaccinated. They started to socialize again and resume a more typical lifestyle. My mother wanted to embrace all that life could still offer at that point, and we were certainly going to help her do just that. Plus, we all believed that her determination to keep on enjoying life was keeping the tumor at bay.

For the next ten months, we ensured that my mother enjoyed long walks of up to three or four miles a day; multiple outings and luncheons with friends; a vast amount of family time; and we organized an al fresco 80th birthday celebration at the New York Botanical Garden. She accomplished all of this with very few visible side-effects from the brain cancer, and in spite of the global pandemic.

However, by late fall 2021, a dramatic downturn was underway. My mother could no longer form full sentences or recall anyone’s name. Her right leg started dragging behind her and by early December she needed to use a walker to get around. At this stage, I was unsure how much more we could safely do to help her keep going on like normal. But my father insisted that we accept every Christmas 2021 party invitation that she received, so I had the distinct honor of chaperoning her to four different ladies’ holiday gatherings.

By the new year, my mother was wheelchair-bound, and she made the decision to end further treatment and imaging and enter hospice. The lingering effects of the intense radiation and maintenance chemotherapy were accumulating in her system and were most likely the culprit causing the downturn versus regrowth of the tumor. It was unfortunately a case where the cure became a poison and at that point was doing more damage to her body than the disease itself.

Despite the complete loss of mobility and motor skills that arrived shortly thereafter, my father remained intent on doing whatever we could to keep my mother stimulated, engaged and enjoying life. If she was no longer able to leave the house to see their friends, well then, they would come to her! He proceeded to organize a series of coffees and luncheons for whoever wanted to stop by and see them.

Around this time, I began to read to my mother because she could no longer do so herself. After all, she couldn’t miss out on her cherished Country Life magazine, shipped to her all the way from the U.K! Visits from a multitude of friends continued right up until a few days before my mother passed away.

The day before she died, the family was gathered by her bedside and she opened her eyes and flashed us with her big, beautiful smile. I’m convinced that our combined efforts to keep her living well and fully were key to this unflagging spirit and longevity far beyond her doctors’ expectations.

Most people are not fortunate enough to have such dedicated family support caring for them and giving them something to look forward to every day, especially during a pandemic. Without such a network, it’s easy to understand why many people shut down and give up on themselves in the face of a devastating illness. It’s heartbreaking to contemplate.

I feel extremely lucky that my family and I were able to join forces and rally around my mother in spite of, and sometimes because of, the global pandemic. In the last few weeks of her life, we enlisted some fantastic aides who helped out 24/7. And the folks from Regional Hospice of Danbury were a true godsend, proving critical to keeping her comfortable and at home.

I will forever cherish the two precious years that I dedicated to caring for my mother and encouraging her to live fully when both a brain tumor and Covid-19 simultaneously shut down the world around us. She amazed us all with her incredible fortitude, resilience, and joie de vivre. I will miss her every day for the rest of my life, but I hope that by sharing our story it might help others and their families when faced with similar disease, adversity, and challenges.

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