The measure to protect patients and staff from the new coronavirus is a decision supported by public health experts. But no matter how sound the reasoning, for families with loved ones inside those hospitals, the restrictions can be excruciating. Be it injury, illness, end-of-life care or childbirth, the realities of COVID-19 mean people are missing crucial moments — sometimes first ones and sometimes the last — with those for whom they care.
Amy Moore was admitted to the hospital over three weeks ago with pneumonia — the result, not of COVID-19, but another condition: multiple sclerosis.
For the past 10 years, Amy’s illness has progressed with debilitating consequences. She’s lost motor skills and the ability to cough deeply or exhale completely. Her breathing is inconsistent, which means fluid can build up in her lungs and leave her vulnerable to pneumonia.
“Two Scoops,” a local blues musician, has been Amy’s caregiver as her ability to care for herself has declined. He helps her eat, bathe, get comfortable. He knows the things she needs, like the special cushion that helps her sit up straight.
“I’m a big part of what’s keeping her alive,” he said, a musician’s cadence in the way he speaks.
MORE ON COVID-19: Washington writers respond to the pandemic.
The two of them have known for some time her MS would progress to where it is today. They met on a blues cruise where Moore was playing — the ship departing on that first Friday the 13th — and the doctors discovered her MS not long into their relationship.
“We’ve been waiting for this for 25 years and dreading it,” he said.
In his anticipation of Amy’s inevitable decline, Two Scoops imagined he would at least be by her side when the time came. And as the days and weeks passed in Swedish Medical Center in Seattle, that’s just where he stayed, reminding staff of her pillow, singing to her. Amy’s breathing was still laboring, and doctors were discussing performing a tracheotomy into her windpipe to help her lungs. But being together gave Two Scoops some comfort, just as they had been since the ship departed two and a half decades ago.
“Everything was all right as long as we were together,” he said. “I could see her smile and nod her head.”
But COVID-19 was swirling all around them. The experiences of Italy, where hospitals were already resorting to wartime triage, could arrive in the U.S. any time. Personal protective equipment for staff was already in high demand and staff members were feeling vulnerable.
Just over a week ago, Two Scoops Moore was asked to leave his wife’s side.
“It’s like the end of the world,” he said.
At the entrance to the UW Medical Center near Montlake, rope lines funnel people walking through the doors toward screeners who ask visitors if they’re feverish, coughing or feeling ill. If the answers are no, visitors get a sticker that says “screened” and are allowed to enter.
Once in the lobby, a sign on an easel makes clear: Visitors to hospital rooms are restricted.
The policies at hospitals in the area, including Providence and UW medical centers, now look similar to one another. The restrictions will be in place until “the transmission of the novel coronavirus, COVID-19, is no longer perceived as a threat to patients, staff and community,” according to UW’s policy.
“This is not a decision that we made overnight,” Lisa Brandenburg, president of UW Medicine hospitals and clinics, said in a video message. “We take our responsibilities very seriously. We know families are a key part of the healing process. So we did not make this decision lightly. We considered it, we had debate, we had a lot of conversation. But we felt like we needed to do this to keep our patients safe.”
There are exceptions for those in obstetrics, the neonatal intensive care units, people in end-of-life care, those with behavioral and mental health conditions and a number of others. But those exceptions allow one or, at most, two visitors. And the discretion of who’s allowed in lies with staff.
On the same day Gov. Jay Inslee announced he was banning gatherings of over 250 people, Susan Manegold's daughter, Lauren, wouldn’t wake up from her nap. Before going to sleep, Lauren had come home to her husband after a workout and complained of a headache and feeling fatigued. But hours later, when her husband tried to wake her, she couldn’t be stirred.
Lauren, it turned out, was having a brain bleed, spurred by a tumor in her skull, and needed emergency surgery.
When Lauren, 41, woke from the surgery at Harborview Medical Center, she couldn’t speak and the right side of her body didn’t work. She would track people in the room with her eyes, but her family couldn’t be sure how aware she was of her surroundings.
Then came the new policy and suddenly the family hoping to surround her and encourage her road back to health was not allowed inside. While she was in the intensive care unit, an exception was made for her husband. But even her 3-year-old daughter, who so far does not fully understand what has happened to her mother, has not been visiting.
“I call and they put her on a speaker phone and they say, ‘She hears you, she hears you,’ ” said Manegold. “But you know, it's such a comfort to be there for your person. You can see it in their eyes. If you're not there, they're just by themselves with the nurses, who are doing everything they can but they're not family, they're not recognizable. She's just clutching this doll that her daughter sent.”
“I don't know yet what her cognitive powers are and whether she's aware that people would want to be there but can't — or does she just feel abandoned?” Manegold said. “I don't know. It's killing me as her mother.”
For days, Manegold, 67, was frustrated. At the same time, she was feeling slightly ill herself, a flu that she couldn't shake. Then the reality of the policy's logic hit home: After days of running a fever, Manegold tested positive for COVID-19.
"It’s clear their decision was in the best interest of their patient even if it meant a mother couldn’t be by her daughter’s side," she said.
Two Scoops Moore was allowed back in to see his wife early last week after doctors decided to move forward with the tracheotomy. He needed to learn how to keep it clear and clean and could remain by her side shortly after the operation.
But after the Wednesday operation, he was asked to leave again. Things are becoming stricter, he said.
In the meantime, he’s been reflecting on their life together, posting poems to Amy on her Facebook page. He’s made hundreds of figurines of the two of them out of recycled materials. He wrote her a song. He left an iPad behind in the hospital so he can call her and see her.
He tries not to think of the worst case scenario. “The most horrible things have happened and I’ve got the most horrible ideas,” he said. “I can’t imagine living without her. This is the toughest time of my life.”
As is becoming increasingly clear in Washington state, the blast radius of the coronavirus pandemic is engulfing more than just those with a direct connection to the disease. Jobs, markets, social connections have crumbled amid the struggle to contain the virus’ spread and lighten the load on local medical providers.
Two Scoops says he understands the measures underway in hospitals. But understanding doesn’t make it easy; his frustration and heartbreak bubbles over sometimes. Through it all, the thing to blame is invisible.
“I don’t know who to be angry at,” Two Scoops said. “If there was somebody, I would.”