For Each Critically Ill COVID Patient, a Family Is Suffering, Too
The weeks of fear and uncertainty that Pam and Paul Alexander suffered as their adult daughter struggled against COVID-19 etched itself into the very roots of their hair, leaving behind bald patches by the time she left the hospital in early May.
Tisha Holt had been transferred by ambulance from a smaller hospital outside Nashville, Tennessee, to Vanderbilt University Medical Center on April 14, when her breathing suddenly worsened and doctors suspected COVID-19. Within several days her diagnosis had been confirmed, her oxygen levels were dropping, and breathing had become so excruciating that it felt like her 鈥渓ungs were wrapped in barbed wire,鈥 as Tisha describes it.
Vanderbilt doctors put the 42-year-old on a mechanical ventilator, and the next few weeks passed in a blur for her parents, who waited helplessly for the next update about the eldest of their three children.
鈥淭hat鈥檚 when it got really, really bad,鈥 Pam said. 鈥淲e were not allowed to see her, to go, to talk to her 鈥 not anything. I would call. And I might get somebody, and then again I might not.鈥 Later that first week after Tisha arrived at Vanderbilt, Pam reached a nurse. 鈥淪he said, 鈥楳s. Alexander, in all probability your daughter will die today.鈥 Me and my husband both, we just cried and cried.鈥
It 鈥渨as probably more than likely the worst day of my life when the nurse told us that,鈥 Paul said. 鈥淪he was our first baby, and the first person that I鈥檝e held that was part of me.鈥
The number of Americans hospitalized with the virus is increasing again, reaching 41,000 late last week, many with a circle of loved ones holding vigil in their minds, even if they can鈥檛 sit at the bedside. A decade ago, critical care clinicians coined the term post-intensive care syndrome, or PICS. It describes the muscle weakness, cognitive changes, anxiety and other physical and mental symptoms that some ICU patients cope with after leaving the hospital. Those complications are fallout from the medications, immobility and other possible components of being critically ill. Now they worry that some family members of critically ill COVID patients may develop a related syndrome, PICS-Family.
Studies show that about one-fourth of family members, and sometimes more, experience at least one symptom of PICS-Family, including anxiety, depression, post-traumatic stress disorder or 鈥渃omplicated grief鈥 鈥 grief that is persistent and disabling 鈥 when their loved one has been hospitalized, according to a 2012 review article published in the journal Critical Care Medicine. Dr. Daniela Lamas, a critical care physician at Boston鈥檚 Brigham and Women鈥檚 Hospital, believes relatives and friends of coronavirus patients may be particularly vulnerable.
Hospital rules designed to prevent the spread of the virus have robbed them of the opportunity to sit with their loved ones, watching clinicians provide medical care and gradually processing what鈥檚 happening between physician updates, Lamas said. In pre-pandemic times, a nurse 鈥渨ould explain what they had heard [from the doctor] and help them come to terms with unacceptable realities,鈥 she said.
Life Becomes a Daze
The Alexanders could reach a doctor or nurse on most days. But not always, said Pam, acknowledging that 鈥渢hey had a lot to do.鈥 Pam described trying to cope minute to minute, day to day, waiting for the next report from the hospital, wandering from room to room. 鈥淵ou just walk around sort of in a daze. You can鈥檛 think about anything else but that.鈥
Paul struggled with feelings of depression, often retreating to his workshop. 鈥淚 wouldn鈥檛 do anything but sit there and cry, wouldn鈥檛 work on nothing, just sit there with my head in my hands.鈥
Meanwhile, they had become temporary parents to their grandsons, two teenagers who had homework and laundry and kept asking about their mom. Pam tried to shield them as much as possible. 鈥淭here are a lot of things I just didn鈥檛 tell them until it got really bad,鈥 she said.
Being physically cut off from their daughter was the hardest, Pam and Paul said. 鈥淚 don鈥檛 care if I had to put on 40 layers of clothes,鈥 Pam said. 鈥淛ust to have gotten to go in and touch her and see her would have made a huge difference.鈥
Even though family members are typically barred from visiting during the pandemic, they can wrestle with guilt that they let a loved one down in his or her time of need, said Jim Jackson, a psychologist and assistant director at Vanderbilt鈥檚 ICU Recovery Center.
Without any visual sense of what鈥檚 going on, 鈥減eople often move to worst-case scenarios; they move to catastrophic thinking,鈥 he said. 鈥淎nd why wouldn鈥檛 they, because it鈥檚 already a hugely serious situation, right? It鈥檚 a five-alarm fire and they鈥檙e not able to be engaged.鈥
Tisha Holt is recuperating at home after several weeks of hospitalization for COVID-19. She can breathe only from the top of her lungs and needs supplemental oxygen round-the-clock. (Abigail Bobo for KHN)
Being physically cut off from daughter Tish while she was in the hospital was the hardest, says Pam Alexander: 鈥淲e were not allowed to see her, to go, to talk to her, not anything. I would call. And I might get somebody, and then again I might not.鈥 (Abigail Bobo for KHN)
Seeking Healing
Doctors and nurses can ease the strain on loved ones by updating a designated family member at least once a day, said Judy Davidson, a nurse scientist at the University of California-San Diego and an author of the 2012 Critical Care Medicine review article. Arrange video calls, she suggested, so the family can see their loved one and better picture the room, clinicians and broader hospital environment.
鈥淚f we don鈥檛 protect them and keep them strong while the person is in the ICU,鈥 Davidson said, 鈥渢hey won鈥檛 be strong enough to do the caregiving that鈥檚 necessary once the person comes home.鈥
After a patient does return home, family members may shy away from discussing what they have been through, so as not to burden their still recovering loved one, Jackson said. The ICU survivor may remain silent for similar reasons, he said.
鈥淲hat tends to happen is they both sort of passively agree not to talk about the elephant in the room, when that鈥檚 exactly the best thing to do,鈥 Jackson said.
Tisha 鈥 who finally left the hospital May 3 鈥 was stunned by her parents鈥 appearance the first time she saw them. 鈥淭hey both looked exhausted and I was shocked at the amount of hair that they鈥檇 lost,鈥 she wrote in an email. Treatment and damaged lungs have made it difficult for her to talk by phone.
Since then, her parents鈥 bald spots have begun to fill in, but they haven鈥檛 released their worry. Tisha can breathe from only the top of her lungs and needs 24-hour oxygen, Pam said. She鈥檚 not strong enough to return to work as a nurse, a job she loved. She no longer has health insurance and can鈥檛 afford even the cheapest plan on the Affordable Care Act exchanges. To this day, Tisha doesn鈥檛 know where she contracted the virus.
Her parents spend virtually all waking hours at Tisha鈥檚 home, about a 10-minute drive from their house, and check on her a few times daily, sometimes more often if she鈥檚 feeling poorly, Pam said. 鈥淚 think, 鈥楢m I going to come over here and she鈥檚 going to be dead from her heart not working?鈥 It scares me to death because she has bad days and good days.鈥
Tisha keeps her cellphone handy in case they text or call. 鈥淚f they call and I don鈥檛 answer, it sends them into a panic and they are apt to drive over here to make sure everything is alright,鈥 she wrote.
She鈥檚 been attending a virtual ICU survivors support group at Vanderbilt that Jackson helps lead. It鈥檚 open to relatives, but Pam was unsure she could handle hearing others鈥 painful stories as she鈥檚 still processing her own. 鈥淚 don鈥檛 mind talking to you about it,鈥 she said, 鈥渂ut sometimes talking about it just sort of gets you in a funk.鈥
Their church community has provided solace, 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 with bringing their daughter home. 鈥淓ven the doctors, they really didn鈥檛 know why she was still here either, to be honest with you,鈥 Paul said.
He hasn鈥檛 stopped fretting about his eldest child. 鈥淚 still can鈥檛 turn it off 鈥 it hasn鈥檛 turned off,鈥 Paul said. 鈥淏ut every day is a blessing, though.鈥