As the number of U.S. cases of COVID-19 is climbing and the White House becomes a ‘super-spreader’ of the virus, this seems an appropriate time to share this newly updated piece that I originally wrote back in May, on Mother’s Day, one month after my own mother died of COVID. I offer it as a glimpse into the oppressive, defective, largely for-profit eldercare and healthcare systems that average Americans have access to.
On April 18, 2020, the day after my mother died, I wrote in her death announcement that “we lost her to COVID-19 and the colossally broken eldercare-healthcare-economic-political system in her beloved America.” That same week, the New York Times reported that one-third of all U.S. coronavirus deaths were in long-term care facilities for older adults. My understanding is that in some states the percentage was even higher. I think it’s important to share—and hear—some details of what one family experienced that go beyond the headlines.
Please understand this is the tip of the iceberg. Although I’m writing here largely about a single facility, in the past several years I’ve experienced others that shared similar characteristics—chiefly, the equation in which a for-profit business offering care services to families with few other options equals less care and more hardship and heartache. The eldercare system is in a dysfunctional marriage with everything also broken about healthcare and insurance, along with oppressions that operate around disability, mental health, race, class, and so on. It’s all worse during the pandemic. This is a snapshot through my subjective lens, but what my family has gone through is not unique.
My mother had Alzheimer’s dementia and for the past year lived on the memory care floor of an assisted living facility that is part of a national chain. Even in “normal” times, there were issues with staffing and care (e.g. number of staff per resident, amount of training, degree of patience and care they offered). Senior staff had a tendency to be evasive and act put off by questions or concerns from family. It became even more complicated if, like my mother, your loved one was seen as “difficult” because of their behaviors or demeanor. But Mom seemed overall safe and comfortable there, we were able to afford some hours with private aides to offer her one-on-one companionship, and things were pretty stable before the pandemic.
The last time I was with my mom was at the end of February; my uncle visited her the first week of March. Then the facility went on lock-down, canceling all in-house activities and prohibiting visitors. On March 11th I began receiving a daily letter from the Executive Director explaining the steps they were taking to confront the virus. Initially these missives were reassuring, proclaiming in large-font italics that “none of our residents or team members are ill at this time with the COVID-19, Novel Coronavirus.” He repeated this statement in each daily email.
On March 17th, exactly one month before my mother’s death, the Executive Director announced that all public dining areas in the independent assisted living were being closed; residents would receive room service for all their meals. As for Mom’s unit: “On the second floor, we will serve meals in smaller groups.” This was the first and only mention of the memory care residents. Subsequent emails omitted any reference to these most vulnerable elders.
Ten days later, on March 27th, the daily email omitted the sentence about nobody being ill that had allowed me to sleep at night. I wrote to the Executive Director for clarification. He responded tersely, “Nobody in the building is positive.” I worried that this implied some people were indeed sick but hadn’t tested positive yet. The facility was not doing testing, which allowed them to be vague about it. This was the beginning, from my perspective, of a maze of evasion, lack of transparency, and apparent neglect for the memory care residents (and staff).
One day later, the email update reported: “We have 3 residents who are positive for the COVID-19 virus. Two are in the hospital and out of the community. One resident is in the community and quarantined to their room. I cannot provide any additional information on the affected residents out of respect for their privacy.” Although I understood that this reflected HIPAA regulations, it felt frightening that nobody could tell me whether these sick residents were in assisted living or the completely self-contained memory care floors. Was my mother safe or not?
I wrote to the Executive Director again asking for assurance that community safety and health measures were taking place in the memory care floors. He never answered.
I started hearing rumors that some residents in memory care were ill and had been hospitalized. A trusted insider reported that memory care residents were never served meals in smaller groups or shifts, as promised in that earlier email. They reported that Mom’s tablemate was sick and coughing, yet still sitting just inches from my mother. When I asked the floor nurse about this, she snapped at me, “What would you have me do, Donna?” At the time, I was angry with her. But I later found out that this same nurse was working double shifts, sometimes alone, heroically carrying on when many other staffers were no longer coming in. I understood then that she was probably receiving little or no support from management to properly care for the elders in her charge.
My inside source told me that the company was not at that time offering their regular employees hazard pay or adequate PPE and that many had stopped showing up for work. There were issues with housekeeping: at one point the memory care floor, including residents’ rooms and bathrooms, received no cleaning services or trash removal for three days in a row. They normally had eight PCAs (personal care assistants) working at a time. Just before my mother was hospitalized, they were down to just three PCAs for thirty high-needs residents. No wonder they couldn’t feed them in shifts.
Missing in this situation seems to have been a decision at the corporate level to prioritize resident care and staff safety over profits and executive salaries. They needed to swiftly hire extra staff, bump up the pay for their regular employees, and of course, be clear with everyone about what was happening and provide appropriate protective gear and sanitization. This apparently did not happen.
At the end of March, my mother developed a urinary tract infection, with fever. Unable to get there for a few days because of her now overwhelmed schedule, the doctor agreed to call in a prescription for what turned out the be the correct antibiotic. But after finishing the prescription, Mom wasn’t improving. She still had a fever, was groggy and had very low appetite and energy. The weekend of April 4th I got reports that she’d fallen out of bed twice and sustained several bruises. I hoped they were telling me the truth; I’d heard PCAs sometimes got impatient with the “difficult” residents. The floor nurse initially suggested we buy Mom a new, firmer mattress that would be harder for her to wriggle off. But the next day, when I offered to have one delivered, she discouraged me, suggesting I wait and see how my mother did over the next few days. I think she suspected Mom was already sick with COVID.
I then learned that doctors would no longer be visiting the facility and that all medical issues would be handled by phone. How would this work for residents with dementia, many of whom were non-verbal or, like my mom, resolutely committed to saying they felt fine in an effort to preserve their independence? The floor nurse said she could “neither confirm nor deny” that anyone on the unit had COVID. On April 6th I tried to reach the Executive Director, whose daily updates had ceased mentioning anything at all about active COVID cases in the building. Again, no response.
I then heard from the Resident Care Supervisor. She confirmed “a few positive cases of the Corona Virus” on my mother’s floor, adding that, “The residents who are confirmed positive are sitting together for meals. We are trying to keep them as segregated from the rest of the unit as possible but due to their cognitive limitations, it has been a difficult task.” I already suspected from what the floor nurse had said and not said that residents were not being separated in any meaningful way. The Resident Care Supervisor wrote that she was unable to test any more residents based on a directive from the Divisional Director of Nursing, someone at the corporate level. I wondered how many residents had been tested to begin with and why they were told to stop.
By this time the doctor, unable to see Mom in person, had given her a presumptive diagnosis for COVID. We waited anxiously, hoping she would pull through as she had with several prior heath crises. I went to the facility to drop off some supplies and saw an ambulance waiting outside the building; I later learned it was for one of the janitors, a young man who went in and out of the memory care unit regularly. I hope he’s still alive. I wonder why he was still working while he wasn’t feeling well. Perhaps he wasn’t offered paid time off for illness? And how did he slip through the supposedly airtight daily employee screening system that monitored each and every symptom?
In the early morning of April 8th my mother spiked a very high fever and had to be hospitalized. Our last conversation took place just before she left her room in memory care; I was able to FaceTime with her. Mom was fully dressed and sitting upright, alert. She became angry and scared when I told her she was going to the hospital. I said I loved her and that she had to go there in order to get well. She shook her head and covered her eyes. I never saw her again.
That day my sister and I did, at last, receive an email (cheerfully addressed, “Hi ladies”) from the Executive Director, confirming that the ambulance had picked up our mother. He subsequently removed me from the daily email recipient’s list.
The rest of my mother’s story includes a stay at a small local hospital where she tested positive for COVID but was stable with nasal oxygen, temperature down. The doctor reported her chest X-ray showed pneumonia consistent with COVID. Mom was out of it but still speaking and eating. After five days we were told she no longer needed hospitalization and would be sent to a rehab facility, that we had to move fast before she lost the room. We requested a second chest X-ray to monitor any progression in the lungs but were told they only performed repeat X-rays on intubated patients. Was this rush to move her because they needed the hospital bed for someone else? I’ll never know.
Mom was transferred on April 13th to a rehab facility. Hours later we learned she’d arrived in a fetal position and non-verbal, a delirious condition far from her normal baseline and from which she never emerged. “Well, this is her new baseline,” the nursing supervisor told me when I finally reached her late that evening. Mom refused to eat. She was turned down for physical or occupational therapy services because she “doesn’t follow commands” but they could not treat her for delirium. I raced up to that facility with a package of family photos and familiar items to help her orient, but of course could only drop it at the door of the building. The rehab was so overwhelmed that it was impossible to reach anyone there directly; we had to call an off-site social worker who was able to read us notes in my mother’s medical record but could offer no hands-on reports. At no time were we able to speak with the doctor there.
Four days later, on April 17th, like so many COVID-19 patients, Mom crashed. We received a cryptic message in early afternoon from the social worker that there was “a setback”; it was 7:30 PM before we could reach anyone who had seen my mother, and by 9:30 PM she was dead. Within moments of delivering this news, the rehab nurse apologetically asked me to please call the funeral home right away; they needed the body picked up within the next few hours.
POST-SCRIPT: On what turned out to be my mother’s last day at the assisted living that had become her home, I received a long email from the CEO of the corporation—a pretense-laden load of PR mumbo-jumbo from a person I doubt has ever spent a moment working directly with elders, or, indeed, with workers. Here are some highlights from the letter, with my interpretive “translation” (I’ve changed the name of the facility to “Our For-Profit Company”):
“Since the spread of COVID-19 was confirmed in the United States, Our For-Profit Company teams have moved swiftly to implement numerous protocols and precautionary measures throughout our communities to safeguard the health and well-being of residents, clients and team members.” TRANSLATION: We’re cobbling together whatever precautions we can without losing too much money.
“Our For-Profit Company quickly established a cross-functional, inter-disciplinary COVID-19 task force that continuously monitors developments and facilitates ongoing dialogue between our community leaders and health care professionals across the country.” TRANSLATION: Last year, after a prior year net loss of over $74 million, we hired 82 new executive directors and 9 other senior executive level staff, and these high paid executives will confer on Zoom from their homes while our thousands of low-paid and under-appreciated frontline staff try to cope. [Note: Actual figures from an online industry publication article.]
“Our highly experienced health care professionals continue to ensure that best practices are shared across our communities through open and direct lines of communication between all levels of community leadership and frontline, health care practitioners and caregivers.” TRANSLATION: We will keep transparency to a minimum, ensuring that neither frontline staff, nor residents and their families know what’s really going on.
“Our For-Profit Company team members are dedicated professionals, and we commend them for their tireless, ongoing efforts to minimize opportunities for exposure and transmission of the virus.” TRANSLATION: We will not immediately offer our employees hazard pay, prompting many of them to call out indefinitely. We will not hire enough additional staff to keep everyone safe.
“Our For-Profit Company communities are taking proactive measures, such as ensuring the highest standards of cleanliness, enforcing social distancing, screening all team members and essential visitors before entering communities, and vigilantly monitoring the health of everyone living and working in our communities.” TRANSLATION: As a result of severe understaffing, some cleanliness and sanitizing practices will fall by the wayside. Residents with special needs such as dementia will not be physically distanced from each other, which may exponentially increase their risk of exposure and death.
“We have sufficient levels of the products required to meet the needs of residents and protect our communities, including personal protective equipment. Please know that we are making every effort to safeguard our communities, our residents and our team members while continuing to provide an exceptional experience.” TRANSLATION: We will provide PPE to our staff only when we finally have to admit there are COVID cases in our facilities. We are reluctant to offer PPE to private aides working with our residents, even though they’re in our communities every day making our workload lighter at no cost to us.
In April, I read an article in HuffPost that quoted a Yale epidemiologist who said the way the coronavirus pandemic is being mishandled in the U.S. is “close to genocide by default.” He was referring to the vast majority of deaths from COVID-19 taking place in communities of color and called it “mass death by public policy.” I agree. I’d add that many private, for-profit corporations seem to be following the lead of the government’s total lack of unified response to the crisis. Their disregard for people whose lives are considered dispensable extends to communities of elders and people with disabilities (including cognitive decline). And, of course, to the wage-earners who make those very businesses function. I know that no one ever anticipated or prepared for a pandemic like this. But, as so many of us are being forced by the current circumstances to reconsider our priorities, it’s enraging not to see that same deep reevaluation in the institutions that promise to care for those we love.
Around the time of this writing I learned that eleven of the thirty residents on Mom’s memory care floor had died of COVID, and three more were hospitalized and perhaps have since died as well. You do the math. Elder care facilities are only required by law to report the number of residents that die in-house. So, the deaths of my mother and her neighbors are not in that particular public record.
The rehab facility where my mother died did report her death—but not of COVID-19. When we finally received the death certificate, many weeks after her harrowing demise, the cause of death was listed only as, “cardiac arrest.”
©Donna Gallers
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