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The weeks of fear and uncertainty that Pam and Paul Alexander suffered as their adult daughter battled COVID-19 etched into the roots of their hair, leaving bald patches behind when she left the hospital in early May.
Tisha Holt was transferred by ambulance from a small hospital outside Nashville, Tennessee, to Vanderbilt University Medical Center on April 14, when her breathing suddenly got worse and doctors suspected COVID-19. Within days, her diagnosis had been confirmed, her oxygen levels were dropping and her breathing had become so excruciating it felt like her “lungs were wrapped in barbed wire,” as Tisha describes it.
Vanderbilt’s doctors put the 42-year-old on a mechanical ventilator, and the next few weeks went by in a confusion for her parents, who were helplessly waiting for the next update on their eldest of their three children.
“At that moment it got really, really bad,” Pam said. “We weren’t allowed to see her, go, talk to her – nothing. I would have called. And I could have called someone, and then again I might not.” Later that first week after Tisha arrived in Vanderbilt, Pam joined a nurse. “She said,” Mrs. Alexander, your daughter will most likely die today. “My husband and I both cried and cried.”
“It was probably more than likely the worst day of my life when the nurse told us that,” Paul said. “She was our first child, and the first person I kept who was part of me.”
The number of Americans hospitalized with the virus is on the rise again, reaching 41,000 at the end of last week, many with a circle of loved ones watching over their minds, even if they can’t sit at the bedside. A decade ago, critical care physicians coined the term intensive care syndrome or PICS. It describes the muscle weakness, cognitive changes, anxiety, and other physical and mental symptoms that some ICU patients face after leaving the hospital. These complications have relapsed from medications, immobility, and other possible components of being seriously ill. They now worry that some family members of critically ill COVID patients may develop a related syndrome, PICS-Family.
Studies show that about a quarter of family members, and sometimes more, experience at least one PICS family symptom, including anxiety, depression, post-traumatic stress disorder, or “complicated bereavement” – persistent and disabling pain – when the their loved one was hospitalized, according to a 2012 review article published in the journal Critical Care Medicine. Dr Daniela Lamas, an intensive care physician at Brigham and Women’s Hospital in Boston, believes relatives and friends of coronavirus patients may be particularly vulnerable.
Hospital rules designed to prevent the spread of the virus have deprived them of the opportunity to sit with their loved ones, watching doctors provide medical care and gradually process what happens between doctors’ updates, Lamas said. In pre-pandemic times, a nurse “explained what they had heard [from the doctor] and help them come to terms with unacceptable realities, “he said.
Life becomes a daze
Alexanders could contact a doctor or nurse almost every day. But not always, Pam said, acknowledging they “had a lot to do”. Pam described trying to cope minute by minute, day by day, waiting for the next report from the hospital, wandering from room to room. “You walk around like dazed. You can’t think of anything but that.”
Paul struggled with feelings of depression, often retiring to his lab. “I would just sit there and cry, I wouldn’t work on anything, just sit there with my head in my hands.”
Meanwhile, they had become temporary parents of their grandchildren, two teenagers who did their homework and laundry and kept asking about their mom. Pam tried to protect them as much as possible. “There are a lot of things I didn’t tell them until they got really bad,” he said.
Being physically cut off from her daughter was the hardest thing, Pam and Paul said. “I don’t care if I had to wear 40 layers of clothes,” Pam said. “Just to go in, touch her and see her would have made a big difference.”
Although family members are typically excluded from visiting during the pandemic, they can struggle with guilt for disappointing a loved one in time of need, said Jim Jackson, psychologist and assistant director at the Vanderbilt ICU recovery center. .
With no visual sense of what’s going on, “people often shift to worst case scenarios; they shift to catastrophic thinking,” he said. “And why shouldn’t they, because it’s already an extremely bad situation, right? It’s a five-alarm fire and they can’t be engaged.”
Seeking healing
Doctors and nurses can relieve strain on loved ones by updating a designated family member at least once a day, said Judy Davidson, nurse scientist at the University of California-San Diego and author of the 2012 Critical Care Medicine review article. . Arrange video calls, he suggested, so the family can see their loved one and better imagine the room, doctors, and the larger hospital environment.
“If we don’t protect them and keep them strong while the person is in intensive care,” Davidson said, “they won’t be strong enough to do the necessary care once the person gets home.”
After a patient returns home, family members can avoid discussing what they’ve been through so as not to burden their still-recovering loved one, Jackson said. The ICU survivor could remain silent for similar reasons, he said.
“What tends to happen is that they both passively agree not to talk about the elephant in the room, when that’s exactly the best thing to do,” Jackson said.
Tisha – who finally left the hospital on May 3 – was blown away by her parents’ appearance the first time she saw them. “They both looked exhausted and I was shocked at the amount of hair they had lost,” she wrote in an email. The treatments and damaged lungs made it difficult for her to talk on the phone.
Since then, her parents’ bald spots have started to fill up, but they haven’t released their concern. Tisha can only breathe from the top of her lungs and needs oxygen around the clock, Pam said. She’s not strong enough to go back to work as a nurse, a job she loved. She no longer has health insurance and can’t afford even the cheapest plan on Affordable Care Act exchanges. To date, Tisha doesn’t know where she contracted the virus.
Her parents spend virtually all of their waking hours at Tisha’s home, about a 10-minute drive from their home, and check on her a few times a day, sometimes more often if she’s feeling sick, Pam said. “I think, ‘I’m coming here and she’s going to die because her heart isn’t working?’ It scares the hell out of me because it has bad days and good days. “
Tisha keeps her cell phone handy in case they text or call. “If they call and I don’t answer, it makes them panic and they tend to come here to make sure everything is okay,” he wrote.
He attended a virtual support group for ICU survivors in Vanderbilt that Jackson helps lead. It’s open to relatives, but Pam wasn’t sure she could bear to listen to the painful stories of others while still processing hers. “I don’t mind talking about it with you,” she said, “but sometimes talking about it just embarrasses you.”
Their church community provided comfort, calling when Tisha was in the hospital and leaving food on the porch. Pam and Paul credit a myriad of prayers from loved ones near and far for bringing their daughter home. “Even the doctors, to tell the truth, didn’t even know why he was still here,” Paul said.
He hasn’t stopped worrying about his eldest son. “I still can’t turn it off – it hasn’t turned off,” Paul said. “But every day is a blessing, though.”
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