By Mia Cathell, The Post Millennial, February 21 2021
99-year-old Gabrielle “Gaby” Lewis endured an unrelenting COVID-19 outbreak at her nursing home under lockdown in Duarte, California. Then she contracted the deadly coronavirus one week before vaccines were due to arrive at the facility.
After weathering months of loneliness, forbidden family visits, and missed holidays, Lewis passed away loved from afar. Her daughter, 62-year-old Denise Bogan of Riverside, shared with The Post Millennial the heartbreaking details of what it’s like to be isolated inside one of America’s nursing homes throughout the COVID-19 pandemic. Her story is just one of many.
Bogan had not seen her elderly mother since March 14 due to the statewide lockdown. On that day at the outset of the public health crisis, her sister had warned that the nursing home was about to shut out visitors for an indefinite period. With six adult children, Lewis was used to the company of family surrounding her almost every single day. Bogan and her siblings gathered around their mother for their last precious moments in-person that they were permitted before the nuns rushed in, accompanied by a security guard, ordering: “That’s it. Let’s go. Everybody out. You gotta go.”
“I was trying to be strong for my mom and telling her that it would be okay—that as soon as we could, we would be back,” Bogan recounted. “But that was the last day that we held her.”
The few patio visits they were allowed in August—when Lewis was wheeled out in her wheelchair—were interrupted by the West Coast wildfires. The medical staff determined that the air was not clean enough to leave Lewis outside. Then the family begged for window visits, but the smoke seeped underneath the doorway where their conversations were held. Those, too, were taken away.
Fortunately, her sister spent their last hour together setting up her Facebook Portal device, which became the family’s lifeline to their mother. They were able to video chat with Lewis daily, but the technology itself was unreliable and dependent on the WiFi signal’s strength. Sometimes Lewis didn’t understand that she was talking to her daughters. She’d ask her children, “Have you seen my daughters?” And they reminded her, “We’re right here with you, Mom.” When Bogan’s sister, Madeleine, joined the calls, her mom almost always said, “Oh, I love that name. That’s a beautiful name.” And Madeleine replied, “Yes, Mama. You gave me that beautiful name. I am named after your sister.”
Her dementia accelerated. Bogan attributed her mother’s decline to the lack of physical touch. “We all need and deserve to have somebody hug us, kiss our cheeks, and hold our hands every day,” Bogan implored, especially at that age.
“It’s the circle of life. It’s just like an infant needs that attention and that supervision, so do the elderly. And that’s what my mom lives for—for the companionship of the people that she loves. And it’s been stripped from her,” Bogan stated. “We’re human beings. We are hardwired for connection to one other. We are of each other.”
As attentive as the nursing home caretakers were, Bogan acknowledged, “that’s their job. That’s not their love. That’s the service that they’re providing, because of the job that they’re getting paid to do.” Bogan knew that their hands-on care could not take the place of family.
Over the course of her secluded stay, Lewis uttered heart-wrenching phrases that Bogan had never heard from her mother’s mouth before. “I’m miserable. I’m so miserable,” she had said. “This is no way to live,” Lewis told her daughters. “I’m lonely.” She begged for her children to come see her and take her home.
“My mom is so faithful and so kind and so generous of spirit and so loving that she’ll catch herself even with dementia,” Bogan described her mother’s fortitude and unwavering positivity. “Oh, I am not going to complain. I’m not a complainer,” Lewis rebounded from her downtrodden moments. Bogan and her siblings had to remind their mother that it was okay for her to feel sad. “This is really, really hard. It’s hard on you. It’s hard on us,” they consoled her.
“This little, tiny, frail, old woman is bigger than life and she is full of life still,” Bogan said. “She is the hugest source of unconditional love that I’ve ever seen in my life and she’s been that way her whole life. Her friends used to say she was an angel on earth, because she was so generous, so loving, so positive, so giving. And she deserves more, and so do everyone else in these nursing homes.”
Lewis was transferred three times to different rooms in the nursing home. Relocation can be upending for dementia patients, because their surroundings are what ground them to reality. Lewis was first transported closer to the nursing station when she was deemed a fall risk. A month or two later, she was displaced when her living space was evacuated to shelter coronavirus patients. The third and final move was to the “dark, cold, and nasty library…turned COVID-19 ward,” Bogan chronicled. Their virtual meetings were no longer scheduled and their calls became few and far between.
After nine cautious months of limited communication, it was one of the caretakers who brought COVID-19 into the nursing home. Lewis tested positive for the coronavirus on Dec. 22 and the family was told the news the day before Christmas Eve.
“The woman is the strongest thing you’ve ever seen in your life,” Bogan spoke of her mother in an interview conducted prior to Lewis’ death. Her symptoms were mild at the time. She developed a slight fever but did not require oxygen. Lewis even sang Christmas carols with her children over the virtual calls. “We didn’t know at that point whether she was going to survive,” Bogan said, but she and her siblings remained hopeful.
Bogan’s sister, Madeleine, drove an hour to deliver Christmas presents. She also carried her homemade fudge—their mother’s favorite recipe that she passed down to all of her daughters. The nursing home accepted the gifts but turned Madeleine away from visiting their mother during the joyous occasion.
“Can you please open my mom’s mini-blind, so I can see her through the window?” Madeleine asked the sympathetic front desk clerk who then transferred her request. The activities director, tasked with keeping the families connected, told Madeleine: “I’ll go ask. I’ll try. I’ll do my best.” Echoing the sister’s pleas, the employee presumably spoke with whoever’s in charge but to no avail.
“It’s salt in the wound. And the wound is deep and heartfelt and traumatic,” Bogan commented on the incident. She expressed how these were her mother’s last days, weeks, and months alive spent in isolation. “But all that precious time has been stolen from her and from us. And it’s just unacceptable,” Bogan declared.
Bogan invoked thousands of others with similar tales. “This story about my mom is not unique. This is going on everywhere,” she maintained. “And we hope to God that they survive COVID, especially after they’re locked down for months to keep COVID out.”
The family was informed via email of the growing coronavirus numbers at the nursing home. “I’ve kept track of it, because if I don’t write it down, my trauma makes me forget,” Bogan said. “So starting with Nov. 29, there was one infected staff member; Dec. 4, two staff members; Dec. 5, one staff member; Dec. 8, two staff members…” Bogan rattled the dates and cases off until she reached the day that her mother was reported as the latest resident who had tested positive.
“It’s not stopping,” Bogan pointed to the uptick of cases. “And it doesn’t feel like anybody’s doing anything about it. People are going to die there.”
It’s not just senior citizens in nursing homes who comprise “the forgotten population,” she continued. Bogan mentioned the disabled youth in long-term care who have been separated from their parents and their loved ones as well.
“It’s very sad that this is the way that our country is treating our elderly,” Bogan stated. She rebutted claims from critics who may question, “Well, why’d you place your mother in the nursing home in the first place?” Bogan emphasized that while she would have “given anything” to take care of her mother at home, the choice was a family decision—and they have a large family. Adult children often have to consider the fragility of their aging parents whose mental or physical state may demand professional care where trained nurses are available around the clock. In numerous other situations, elders are in nursing homes because there is nobody else in their families who can take care of them.
“There’s many, many reasons. But none of them give us the right to just forget them, leave them, and take away their civil rights under the guise of ‘We’re going to protect you to death. We’re going to protect you from COVID,'” Bogan rebutted.
Nursing homes and assisted living facilities hold less than 1 percent of the population in the United States yet are to blame for an astounding 37 percent of the nation’s total coronavirus deaths, Bogan cited AARP’s recent analysis of federal data. “That right there is just staggering. It’s just unacceptable,” she countered. “And yet very little, if anything, is being done.”
Bogan characterized the long-term care industry’s mentality: institutions presume they have sole jurisdiction over what’s best for the residents since families have forfeited care over to the medical personnel.
While infectious disease experts have focused on the virus itself and COVID-19’s spread in communal housing, the impact of prolonged separation has gone undetected. Therefore, the restrictions in place reflect this tradeoff between safety and quality of life.
Bogan scrutinized the issue on the national scale. “In the United States, especially, we do not honor and respect the elderly,” she described the generational divide.
“There’s ageism in our country, big time,” Bogan asserted. “And we seem to only value the young, the fit, the beautiful. And the older you get—it seems to me—in our society, the less value is attached to you.” Americans tend to believe that “life is for the living,” she went on, and they’re afraid to understand that “life is also for the dying. Life is for all of us from birth all the way until our deathbed.”
Americans often shy away from the talk of death, because “our medical system is set up to save everybody,” Bogan rationalized. And if doctors are unable to save their patients, it’s considered as if they’ve failed, she continued. “And that just isn’t so. Every single one of us is going to meet our maker. Regardless of who we are or how we came into this world or how we lived our life, we’re going to die,” Bogan said.
“And it’s become very, very important to me that my mom not only live well, but that she die well,” Bogan said just days before her mother’s death. “And she can’t if she’s in a nursing home under lockdown—and neither can the thousands of others.”
As humans continue to live longer over the next decade, Bogan prompted the young generation to reflect—”to look at ourselves, to look at our systems, to look at how we warehouse the elderly in nursing homes.”
She urged funding to change, so that America’s aging population are afforded “comfortable, loving” end-of-life experiences in their own homes or smaller residences where there are fewer caretakers present, not overcrowded workforces that usher in “all these germs.”
Caretakers were the culprits who brought the fatal disease into the nursing home—”not with any ill will,” Bogan interjected. “It’s just the facts. It’s the numbers. It’s the truth. And how can we sit back and allow this to just continue?”
Bogan suggested that each resident have at least one family member who can suit up in personal protective equipment (PPE), test at regular intervals, and enter the nursing facility as an essential caregiver. This practice is championed in several states. One such proposal in Indiana, Senate Bill 202, would require all nursing homes to let at least two designated caregivers visit under any public health emergency—with proper safeguards—unless federal regulations ban all visitors. If enacted into law, an Essential Family Caregiver Program would be established that permits outside contact with residents at least twice per week.
“Turns out that family members are very, very motivated to keep their loved ones safe,” Bogan said. “Certainly, we could allow one essential visitor for each one of the residents who will take all precautions to go in. Why is California so far behind with that?” she pressured.
Compassionate care scenarios—such as terminal illness, bereavement, and depression—necessitate this last touch of humanity, Bogan advocated. Family, in particular, would ensure that they self-quarantine and curb their social activities with the health of their loved ones at stake. It’s staff who dine at restaurants, drink at bars, and shop at grocery stores during their everyday routines outside of work, Bogan speculated.
The presence of family also increases the level of care in nursing homes, which is two-fold by enforcing accountability as inside watchdogs and supplying an additional set of hands as impassioned caregivers.
Bogan stated that those who don’t live in nursing homes “don’t know what it’s like within those walls.” She ventured to suggest that these same people “don’t want to know,” because they don’t want to think about their own parents aging—let alone themselves nearing death. Thus, the cycle is perpetuated.
Blaming poor government oversight, she pressed governors in all states to “suit up” and “go see for yourself.” Drive to 10 random nursing homes, “not ones that are five-star that some staff members picked out for you to go see,” Bogan fired at state leaders. “And you will see isolation, loneliness, depression. You will see neglect. In the worst of them, you’ll see cruelty and a lack of empathy.”
“You, too, one day will be old,” Bogan said she would tell governors across the country. “And your parents—if they’re still alive—may end up in one of these facilities.” Bogan stressed that “it’s not right to separate families anywhere—nowhere, not at the border, not in nursing homes.”
Bogan urged governors to take action. “Please, it’s urgent. Get the legislation in place to stop this tragedy, to stop death by isolation, to stop death by COVID in nursing homes—because they’re hotspots,” she said. “I would hope their hearts are big enough to take my advice and to change things.”
“I want [the public] to know that my mom is their mom,” Bogan emphasized. “My mom is any other human being who’s been privileged enough to live to [age] 99. Few of us will get that far, but she has. And I want the public to know that she has value—that she has an incredible life story of her younger years, her middle years, and her end years. And she has the right to live in harmony and peace with the people who are most connected to her at the end of her life and so does everyone else.”