Coronavirus Pandemic Heightens Fear And Stress For Families Of Chronically Ill People
It’s been two months since Karen Nickel last held her 2-year-old granddaughter.
Nickel, of Maryland Heights, has lupus, psoriatic arthritis and fibromyalgia — chronic and painful conditions and illnesses that weaken her immune system. Sometimes, she is unable to leave her bed. When the coronavirus began spreading in Missouri, she and her children decided they would stop visiting each other in person.
People who have chronic conditions are at high risk of becoming very sick or dying of COVID-19. Many families are worried about their loved ones and have taken extra precautions to protect them. When Nickel’s 2-year-old granddaughter comes for a visit, the toddler stays outside and they talk through her living room window.
“She cries to my son, ‘I go Nana’s, I go Nana’s.’ So they bring her by, but she wants me to hold her. It’s the cutest little thing because she puts her hand up to mine and says, ‘Hold hands,’” Nickel said. “If we survive this, if our families are intact, what happens after this?”
A study released last week by the Centers for Disease Control and Prevention found that about 90% of people hospitalized for COVID-19 had an underlying health condition. It also noted that many people who were hospitalized had hypertension, diabetes or asthma.
The most important advice for everyone to follow, especially those with chronic illnesses, is to stay at home, said Dr. Denise Hooks-Anderson, a family physician at St. Louis University Hospital.
“If possible, the person who is immunocompromised shouldn’t do the shopping. They should try to limit how often they go out,” Hooks-Anderson said. “If you have to go out, you wear face coverings and disposable gloves if you have them. Try to go to the stores at odd times of the day.”
Those who receive drug infusions or other treatments at a clinic should follow their doctors’ advice on how often to go, she said.
Hooks-Anderson has lupus, an autoimmune disease that causes the immune system to attack healthy tissues in the body and damages multiple organs. For several weeks, she has consulted patients through video and only goes into the office every other week. Her husband is worried about her.
“My husband is now a germaphobe and gets angry with me when I go to the grocery store. He’d prefer I didn’t, and he’d prefer I not work at all,” she said. “It’s a tough tug of war.”
Difficult conversations are common. When LaShana Lewis of St. Louis learned that the coronavirus could worsen breathing problems for those with respiratory conditions, she wanted to take strong measures to protect her wife, Seanna Tucker, who has asthma.
But when Lewis suggested that they shower every time they enter the apartment, Tucker said that seemed unnecessary. They agreed to wash any skin not covered by clothes and to immediately toss clothes worn outside in the washing machine, but Lewis is still nervous that they’re not doing enough.
“I’m coming in very hard like, ‘We need to do all these things!’” Lewis recalled. “I’m thinking very militaristic about it and she’s like, OK, that’s cool, but I think we’ll be OK if we do some of these other lax procedures.”
When Lewis was 10, she often went to the hospital to visit her mother, who had cancer. The pandemic has brought up many of those memories, and she felt compelled to share them with her wife.
“You don’t have to do what I say, obviously, but I remember the days of sitting next to someone in the hospital hooked up to tubes and wondering if they were going to come out of whatever they were in,” Lewis told her. “What can I do to make sure we don’t get into that situation?”
Tammy Merrett of St. Louis has been trying for weeks to persuade her son to return home from Oklahoma, where he’s been living with friends. She’s also worried that his girlfriend, who works at Target, could expose him to the virus.
“He’s 20 and very stubborn and even though he has asthma, he needs to be home where at least he’s around people who can take care of him,” Merrett said. “I said he needed to come home the next day and then he just stopped talking to me.”
Merrett also wants to protect her fiance, who has diabetes. Her son did not react well when Merrett told him that he’d have to quarantine himself in his room for two weeks if he were to come home.
“He acted like I wanted to cut one of his arms off,” she said. “He told me I’m just acting like a child, just like everybody else, and overreacting to this. Perching smoke came out of my ears. I was so angry.”
Some families that have been frequently washing hands and sanitizing objects for years to protect loved ones with chronic illnesses say they feel prepared for the pandemic. Dawn Chapman’s husband has Crohn’s disease, and her teenage son has Type 1 diabetes. At the advice of their doctors, she pulled her children out of school about a week before most schools in Missouri started closing in March.
Chapman recalled seeing her son recently become upset that their neighbors weren’t practicing social distancing to prevent spread of the coronavirus.
“For the kids, [the pandemic] is very scary. But more so for my 14-year-old,” she said. “I think he’s the one who struggles with it the most. He gets angry, like the neighbors down the street were having a gathering. And he was just furious at the window. Because of his situation, people doing selfish things like that really bother him.”
It’s hard work to keep her family safe and teach her children how to handle a crisis, Chapman said.
“I just tell him the truth, nobody’s ever been through this before. This is a global pandemic. We’re in new territory now, and we don’t know what it looks like on the other side,” she said. “But you will feel this kind of frustration, maybe not at this level, with all sorts of things throughout your life.”
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