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‘What’s best for Willa?’ Maryland families agonize over nursing home decisions during coronavirus pandemic

Van Beall cares for his wife, Dr. Willa Brooks, who has Alzheimer's, at their home in Ellicott City. She was placed in a memory care facility but it didn't work out for her.
Van Beall cares for his wife, Dr. Willa Brooks, who has Alzheimer's, at their home in Ellicott City. She was placed in a memory care facility but it didn't work out for her. (Barbara Haddock Taylor / Baltimore Sun)

Van Beall broke down his decision into two lists written on lined paper.

The first, titled “Pros and Cons of Staying at Home," explored the possibility of caring for Beall’s beloved wife, Willa Brooks, who has Alzheimer’s disease, in their Ellicott City residence. The second weighed the pros and cons of returning the 70-year-old retired college professor to the Catonsville nursing home where she was living before the pandemic broke out.

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“Safety is most important,” Beall said. "What’s best for Willa? That’s what drives everything. You have to weigh so many factors.”

Beall heaved a sigh. “Oh my.”

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Maryland’s 226 nursing homes provide beds for about 25,000 residents, according to Maryland Long-Term Care Ombudsman Stevanne Ellis. As the pandemic has ravaged these institutions — as of Wednesday, long-term care facilities accounted for about 57% of COVID-19 deaths in Maryland — thousands of families have wrestled with variations of Beall’s question:

Should we put Dad in a nursing home? Should we take Mom out?

“The coronavirus has been hard on anyone with a family member in assisted living or in a Maryland nursing home,” said Hank Greenberg, director of AARP Maryland, a nonprofit advocacy group for older Americans.

"There’s a lot of suffering that people don’t see. They put numbers on TV about how many people are hospitalized with the virus, but they’re just numbers. There’s no way to quantify misery.”

After reading over his two lists, Beall decided to keep Brooks with him, but other Maryland families have made different decisions. For example, Karen Walwyn of Rockville thought she had no choice but to leave her mother, Dorothy Tyler, in a nursing home — until her mother’s roommate began showing symptoms associated with COVID-19.

“Family members don’t know what the right thing to do is,” Greenberg said. “I urge them to try to pick the least bad of their options. Everyone has choices now, but there aren’t a whole lot of good choices.”

Van Beall and his wife, Dr. Willa Brooks, a retired college professor who has Alzheimer's, look at a book they made at their home in Ellicott City. They went on an "ice cream tour" of several states and countries a few years ago.
Van Beall and his wife, Dr. Willa Brooks, a retired college professor who has Alzheimer's, look at a book they made at their home in Ellicott City. They went on an "ice cream tour" of several states and countries a few years ago. (Barbara Haddock Taylor / Baltimore Sun)

When Beall placed Brooks in a nursing home in February “for her safety and my safety,” it was a sad development in a 26-year love story.

“My sister had the best word to describe my marriage,” said Beall, who retired from the Department of Defense in 2017. “She said Willa and I delighted in each other.”

Even after Brooks was diagnosed with Alzheimer’s disease in 2015, the couple pursued their quest to eat ice cream in all 50 states. (Their current tally: 27 states and seven foreign countries.) They viewed the solar eclipse in Oregon in 2017 and traveled to Barbados last November.

But by February, Brooks’ disease had progressed. "She didn’t always know who I was,” Beall said. “She was running away. She was kicking out windows.”

Beall toured 20 nursing homes before selecting the Catonsville facility, which he is not identifying at the institution’s request.

“We attempted to get Willa adjusted, but unfortunately she never did," he said. “When she got there and I left, she got really confused.”

Brooks’ outbursts worsened, and within three weeks she was transferred to a psychiatric hospital.

Drugs gradually stabilized her moods. But by April 22, when Brooks was discharged, the pandemic had descended on Maryland. The decision about where she should live had become immeasurably complicated.

Beall’s greatest worry wasn’t that Brooks would catch the virus.

“That was very, very low on my list of things to consider because the nursing home was so cautious,” he said. “But when she went back into the facility, she would be quarantined. It might be three months before I could see her again."

He feared the separation might cause Brooks’ fragile mental state to deteriorate. So he began a two-week trial to see if he could care for his newly docile spouse himself.

“In the past 16 days, she’s recognized me 100% of the time," he said. “She’s made zero attempts to run away. So I decided to keep Willa at home with me.”

But he knows any decision he makes is just for today.

“Willa’s going to get worse,” he said.

“There’s no trajectory of this disease where she gets better. I can foresee scenarios where it will become impossible for her to live at home. But as long as she remains aware of who I am and I can take care of her and we can still do fun activities together, this is where she’ll stay."

Beall’s decision wasn’t based on the quality of the nursing home; he said he’s impressed with the care it’s providing during the pandemic.

But his sanguine assessment is relatively rare. Some critics object to guidelines for nursing homes that they believe are too lax — recommendations provided by the federal Centers for Medicare & Medicaid Services.

Ellen Nose is angry that in earlier phases of the pandemic, some Maryland nursing homes accepted physical therapy patients without either testing them for the coronavirus or isolating them in a separate building.

It wasn’t until April 29 that Maryland Gov. Larry Hogan ordered universal testing at nursing homes — and by then, Nose had watched COVID-19 cases in one institution skyrocket to 50.

“I kept asking why, why, why,” said Nose, 62, of Pennsylvania, who has an elderly relative living in a Maryland facility. “Why were they letting the virus walk into these nursing homes? It’s like lighting a match in a haystack.”

COVID-19 presented unprecedented challenges for nursing homes, said Joseph DeMattos, president and CEO of the Health Facilities Association of Maryland, a trade group representing about two-thirds of state nursing homes. Still, he said he “wouldn’t hesitate” to place his parents in a Maryland facility — under the right circumstances.

“I’d want to make sure," he said, “that the nursing home had multiple wings to adequately observe, isolate and care for people infected with COVID-19. The reality is that many nursing homes lack the physical layout necessary for this kind of isolation.”

Complicating matters, “nursing homes are required to admit patients in a world where universal testing is not required even in hospitals," he said. "And a high percentage of those who test positive for the coronavirus are asymptomatic.”

Maryland nursing homes have received roughly 100,000 COVID-19 tests in the five weeks since the governor’s order. Ellis, the ombudsman, said health officials are on track to reach their goal of testing every nursing home resident and staff member In Maryland by June 5.

Even when protocols designed to protect patients exist, nursing homes don’t always follow them, according to Karen Walwyn, 57, of Rockville.

For some time, she’d considered transferring her mother, Dorothy Tyler, from Collingswood Rehabilitation and Healthcare Center in Rockville to another facility. But once the pandemic invaded Maryland, she was stuck.

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“I felt trapped,” said Walwyn, a concert pianist. Tyler, 85, suffered from scleroderma, a chronic autoimmune system disease, and could no longer stand on her own.

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“Once everyone was quarantined, I did not see how I was going to get my mother out of one nursing home and into another," Walwyn said. "I was thinking I’d have to take out a giant loan and care for her myself.”

Throughout the quarantine, mother and daughter kept in touch through thrice-daily phone calls and Zoom meetings. Sometimes, Walwyn played Mozart. Other times, they told jokes. Occasionally, Walwyn read Tyler excerpts from the “Peanuts” comic strip.

“What made her laugh the most," Walwyn said, “was when Lucy humiliated Charlie Brown by yanking away the football.”

COVID-19 entered Collingswood in late March — and Walwyn quickly became concerned about patient safety.

She says she observed some staff members without masks and had questions whether infected patients were interspersed with the general population; signs on several doors near her mother’s room read “Droplets.”

Leah Wetzel, Collingswood’s administrator, wrote in an email that residents who have tested positive for COVID-19 “are in isolation, with dedicated nursing and certified nursing assistant staff.”

She added that “surgical and/or N95 masks are being worn universally by staff and residents throughout the facility.”

Tyler showed no symptoms of the virus. But Walwyn alerted a nurse on April 23 when her mother’s roommate, who was not masked, began coughing — potentially a symptom of the deadly disease.

“The beds are maybe three feet apart,” Walwyn said. “The only thing separating them was a curtain. I was frightened to death. I told my extended family, ‘I don’t care what it costs. I have to get my mom out of there.’"

The roommate died a short time later. Wetzel, citing privacy laws, said she couldn’t disclose whether that former resident had tested positive for COVID-19.

But state statistics analyzed by The Sun show that Collingswood is one of Maryland’s hardest-hit nursing homes. As of Wednesday, 103 residents and 42 staff members had tested positive for the virus in the 160-bed facility. One staff member and 33 residents have died.

Wetzel wrote that Collingswood was among the first facilities to begin mass-testing residents — and as the number of tests increases, so do positive results. In addition, she wrote, several patients fell ill from COVID-19 before they were admitted to the nursing home.

“Our hearts go out to the families of those who have passed,” Wetzel wrote, “and we deeply feel the loss within the Collingswood community.”

Walwyn put a hospital bed in her living room, and on April 25, removed her mother from Collingswood. But within days, Tyler’s temperature spiked and her breathing became labored. She was admitted to Suburban Hospital in Bethesda on April 28 and diagnosed with COVID-19.

A week later, the hospital called Walwyn to tell her Tyler had died.

“My life has just stopped,” Walwyn said.

“For the past six months, every single hour I wasn’t performing or teaching was devoted to my mother. I feel like I’ve been frozen in time."

She is haunted by one conversation in particular. It took place just before Tyler went to the hospital.

“It was about the treatment she got at the nursing home,” Walwyn said. “My mother asked me to make sure that I didn’t let it go unsaid.”

Is it safe to put a loved one in a nursing home?

Placing members in a nursing home can be stressful, especially during a pandemic. But AARP Maryland has devised six criteria to skirt the pitfalls:

TESTING: Have all nursing home staff members, residents and vendors been tested for COVID-19? How many tested positive?

PREVENTION: How is the nursing home preventing COVID-19 from entering the facility? What precautions exist for residents who share rooms? Is there an observation area for new residents and an isolation area for infected residents? How are they separated physically from the general population?

PPE: Does the nursing home have enough personal protective equipment, and has staff been trained to use it?

STAFFING: Is the nursing home fully staffed? How are new staff members screened?

CONNECTION: Has the facility established a regular schedule when residents talk with relatives? Will staff help residents place calls?

COMMUNICATION: How often does the nursing home provide regular updates on the pandemic?

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