Loss and Livestreams: End-of-Life in the Age of COVID

Debra Tanner and Mark Shapiro aren’t part of the daily tally of Loudoun’s COVID-19 losses. But the pandemic dramatically changed the end-of-life for these two Loudouners and upended the way their families experienced loss.

From hospice care to the way we hold memorials, the public health crisis has affected every aspect of dying—and not just for COVID patients—in painful and poignant ways. 

“You’re not thinking she’s not coming back.”

When Arnie Tanner left his wife Debra at the emergency room April 10, he didn’t know it was the last time he’d see her alive. For Arnie, Debra’s complex medical case and the pain of her loss were amplified by the confusion and uncertainty surrounding the pandemic.

“It’s a kind of secondary death to what’s been going on. The people who are dying of COVID, it’s tragic. There are sad stories there,” Arnie said. “But there are those that are probably not being mentioned who are victims of the circumstances.”

At the beginning of this year, Debra, 61, was undergoing treatment for colon cancer and doing well, Arnie said. But she began experiencing fatigue and respiratory symptoms in mid-February. The couple sought answers via telemedicine appointments, but Debra’s symptoms persisted, causing her to miss chemotherapy appointments and a scheduled follow-up scan.

“Everything just hit at once at the wrong time,” Arnie said. “All this confusion and not being able to go in to see someone, maybe for them to say, ‘You know what, there’s something more going on here.’ It just confused the hell out of us.”

After a course of antibiotics and weeks of hoping for signs of improvement, Arnie took Debra to the emergency room at Inova Loudoun Hospital.

“She just couldn’t take it anymore,” he said.

Debra was admitted to the hospital’s Acute Care Unit, and Arnie followed the hospital’s tight rules barring visitors to prevent the spread of COVID-19. Inova’s policy allows for one visitor for dying patients, but for Tanner, that call came too late.

Over the five days of Debra’s hospitalization, Arnie was able to talk with her briefly on the phone and via text. She seemed to be doing better, he said.

“Part of the confusion was just thinking she was going to get better. It’s a stupid blind optimism that makes things so hard,” he said. “You’re not thinking she’s not coming back.”

Debra had two negative COVID tests, including two days before her hospitalization and a second test while in the hospital. She took a sudden turn for the worse and died of pneumonia on April 15. Her husband arrived at the hospital 15 minutes after her death.

For Arnie, profound grief was made worse by the frustration of navigating the uncharted territory of illness and death during a pandemic, trying to follow the rules but missing important moments and information.

“I would have pushed harder to try to find a way to go in,” he said. “I would have been more aggressive.”

In the aftermath of Debra’s death, Arnie is now trying to honor her despite limited ability to connect with family and friends.

“I miss her presence and her big heart,” Arnie said. “There’s been support, but it’s all long distance. I’m here alone. I’ve had to do everything myself and kind of stumble along in a daze part of the time. … I’m trying to honor Deb as much as I can.”

Debra, a fine art photographer who also worked as a dental hygienist and a caregiver with Visiting Angels, was a mom to two standard poodles,Francie and Max. She and Arnie were nature lovers who met while hiking at Shenandoah National Park. They were married in the beloved azalea garden at Fairfax County’s Meadowlark Gardens, andDebra’s wish was to be cremated and eventually have her ashes buried with her husband’s at the park in a biodegradable urn.

Arnie doesn’t consider himself tech savvy and isn’t planning a virtual service. Instead, he drafted a moving letter sent to family, friends and neighbors and will organize an in-person memorial when circumstances allow.

“Down the road, something,” he said.

A Sense of Closure

COVID is changing how Loudouners honor lost family members, and that’s changing how local funeral services do business, with traditional rituals getting shaken up or going by the wayside. This includes a rise in cremations as families look to buy time in hopes of an in-person memorial down the road.

“Cremation has definitely increased. A lot of people that would normally do more traditional services are electing to go ahead with cremation and delay having a memorial service,” said Kathryn McDonough Webb, managing director of Loudoun Funeral Chapel.

With an increase in cases overall and strict COVID protocols in place, Webb and her brothers who run the family business are working to deal with more deaths while keeping employees safe on staggered shifts. With 10-person limits on gatherings, holding in-person memorials is challenging, she said. The chapel is hosting staggered small-group gatherings along with livestreamed services and Zoom memorials.

“Certainly, people are feeling a greater challenge, but for the most part people are very understanding,” Webb said. “It’s not that we don’t want to offer them the services their loved ones are entitled to. We’re just trying to do the best we can to give them some closure.”

“It changed everything.”

For Casey Shapiro of Lovettsville, losing her handsome, dynamic husband to pancreatic cancer at 41 was a painful blow, and the stress and grief were compounded by the chaos of the COVID crisis.

“I don’t think a satisfying goodbye exists. But I think that knowing what his prognosis was and especially knowing the environment we’re in right now, I feel blessed almost to the point where I feel a little embarrassed about it—because I know there are lots of families that didn’t even get what I got,” she said.

From the heartbreak of not having Mark’s parents physically present to say goodbye to their son to an unexpectedly uplifting Zoom shiva, the last month has been a roller coaster for Shapiro, who admits she’s holding it together with a healthy dose of dark humor.

Mark Shapiro died May 5 from pancreatic cancer at age 41. His wife Casey organized a Zoom shiva for nearly 100 family and friends but is delaying an in-person memorial until 2021.

Mark and Casey met in Atlanta, drawn together byshared interests and creative hobbies including acting, stunt work and live-action role play.After moving to Loudoun, Mark launched his dream career as a project manager in the cybersecurity field. He also got involved in his community where he was a volunteer atLovettsville Fire and Rescue Company and a past master of Lovettsville’s Masonic lodge.

Mark was diagnosed with early-stage pancreatic cancer in 2017 and went through successful treatment and remission. But the cancer returned in August of last year, and a new chemotherapy protocol failed early this year. Mark began a clinical trial at NIH in March, and the Shapiros were hopeful: he was young and had beat cancer before. But Mark began having alarming symptoms including fatigue and shortness of breath. On April 11, Casey took Mark to a local urgent care center. With COVID protocols in full swing, she wasn’t initially allowed to go with her husband into the exam room. When medical staff called her back, a red flag immediately went up.

“Every time they make an exception in this climate, something really big is going on—and it’s probably ugly,” Casey said with characteristic frankness.

After urgent care staff recommended heading to the emergency room in Lansdowne, Mark was admitted to Inova Loudoun Hospital, and Casey was separated from her husband for the first week of his care. On April 18, she got a call from Mark’s local oncologist suggesting she make arrangements to visit him. Results from a new scan were in, and they weren’t good.

“The cancer had exploded everywhere,” Casey said. “Once Mark’s status had changed and things got super dire, that appeared to be the flipping point [on visitation].”

During her early visits, Mark was lucid and able to interact, Casey said, and at one point asked for his laptop so he could continue working at the job he loved. For Casey, one of the most heartbreaking aspects of COVID restrictions was that Mark’s parents in St. Louis couldn’t make the trip to Virginia.

“They were scared, but it broke their heartsbecause they couldn’t physically be there. They couldn’t touch him or hold him. … It changed everything. They lost the ability to tell him goodbye the way they would have.”

When Mark died May 5, Casey was by his side. Then the overwhelming task of planning a series of remembrances began. Mark was Jewish and valued his religious heritage, Casey said, but wasn’t especially religious. He had chosen cremation, which took the urgency of a traditional Jewish burial off the table, but there were still choices and arrangements to be made under challenging circumstances.

Casey, who was raised Methodist, worked to respect the elements of her husband’s faith that were important to him, adapting Jewish traditions in line with Mark’s wishes and the current COVID-influenced reality. Her current plan is for a small religious ceremony and the placement of Mark’s ashes in a new glass-front columbarium under construction in Falls Church next spring. She is also planning a larger celebration of life for next year.

Last week, Casey remembered Mark with nearly 100 friends and family at a Zoom shiva, a COVID-inspired twist on the traditional Jewish mourning observance.

“That is one of the Jewish traditions that I wanted to give Mark,” she said. Organized with help from friends and a congregation in Reston, the shiva included both a more formal component with traditional prayers and a less formal chat where friends and family shared stories.

“I wanted his family to be able to see all of the lives that he had touched. …When they logged on and they saw this chat—I’m pretty sure we had close to 100 people—they got to hear from people from all walks of life,” Casey said. “There were Masons and coworkers and high school and college friends. There were stunt people, there were cybersecurity people, there were people who knew him online and had never met him. … That was really nice to be able to give them.”

The virtual shiva was a silver lining of sorts in a very painful time, and Casey thinks the online memorial may be one element that ends up sticking in a post-COVID world.

“It really empowered people from all over the world to come weigh in. … Some people that showed up would never have been able to make it.”

For Casey, the loss of a young spouse has also encouraged her to emphasize the importance of end of life planning and advance directives for everyone, especially in the age of COVID.

“The minute you’re a legal adult, start thinking about these things and writing them down,” she said. “Do not put this conversation off.” 

“Families want to be with each other.”

For Loudoun’s hospice care providers, COVID is creating challenges in a profession that relies heavily on in-person contact.

LarissaBlechman, a grief and loss counselor and chaplain for Blue Ridge Hospice, says pandemic protocols are dramatically changing how she and her colleagues do their jobs.While the hospice’s physicians, nurses and certified nursing assistants still have in-person contact with patients,Blechman and other team members aremeeting clients virtually, and it’s just not the same.

“Talking with people and keeping them company, often talking about the meaning in their life, the decisions they want to make at the end of their life, what they want their life legacy to be—that’s a lot harder over the phone for a variety of reasons,” Blechman said. “We’re having to learn a whole different way to try to reach out to people. It’s wonderful. We can do a lot of things [virtually], but it’s also limited. We feel the separation from the families and the patients that we often grow to love and care for very much.”

COVID protocols are also creating extra stress and grief for families of loved ones with terminal illness, both in nursing home settings and in hospice care at home.

With no-visitation policies in nursing homes, Blechman’s clients are visiting loved ones at the end of their lives through a pane of glass and communicating via white board.

“They’re describing their face pressed up against a window,” she said.

For families caring for dying loved ones at home, there’s a different set of concerns.

“The families are very isolated and they can’t have their family members come in. They don’t get a break because nobody can come in and help with care. The stress level in the families is really rising,” Blechman said.

As a grief counselor, Blechman is seeing the loss of rituals and mourning in community take a toll, but she’s also witnessing moments of strength and grace.

“Families want to be with each other and they’re not able to. It doesn’t meet the needs the way it would to be together,” she said “People are frustrated. Despite all of the difficulties, the thing that we keep talking about is that people are resilient. We’re all trying to reach out to each other and connect with each other, and we’re doing it the best ways that we know how. People are amazing. Life is so fragile but it’s also so strong.”

Leave a Reply