How I Kept My Daughter with CF Safe When My Husband Had COVID-19

When my husband got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.

| 8 min read
Sharon-Cray-Headshot
Sharon Cray
Sharon-Cray-Daughter-Mask-Selfie-Featured-Rectangle

During the current pandemic, our daughter Mara, a beautiful 24-year-old with cystic fibrosis, was living at home as she was finishing her master's thesis. We were taking the same precautions as everybody else: only going out when necessary, wearing masks, physically distancing, and constantly washing our hands. As a CF family, we know this drill. We practice it -- ad nauseum -- every cold and flu season.

When my husband, Mike, started feeling unwell toward the end of October, we thought he was probably just tired and run down. But symptoms continued and off he went for a COVID-19 test. The test came back positive one day later and we began to plan how to minimize exposure for Mara. Our first instinct was to get Mara the heck out of the house! We thought, perhaps, she could live with her boyfriend for the next couple of weeks. But Matt is a pharmacist, and if he was exposed to the virus by Mara, not only could he get ill himself, but he may have been unable to work. We also felt it was unfair to expose friends and family to Mara.

After much angst, we finally decided that Mara had no choice but to remain home. This unfortunate young lady was doomed to two full weeks shut in with her parents… 

We are lucky enough to live in a four-bedroom house, so we had some space and the flexibility to spread out. Every family that finds themselves being compromised with COVID-19 needs to figure out how to deal with the situation on their own after considering the layout of their homes, available space, and comfort levels, but here are the steps my family took:

  1. We quarantined Mike in our master bedroom and bathroom. He was a prisoner in his own home and Mara and I were strict prison matrons. Mara's bedroom is upstairs, and I moved into the guest room across the hall from her. Mara and I shared the upstairs hall bathroom.
  2. We also revoked Mike's kitchen privileges and delivered his meals to him, always with our KN95 masks and gloves on. He got fantastic service, but was a lousy tipper, which still stings a bit. 
    Sharon-Cray-Daughter-Mask-Selfie-Featured-Rectangle
  3. We lugged Mara's old college refrigerator and microwave into Mike's bedroom so that he could have some level of independence. We stocked the small refrigerator with milk, seltzer, fruit, and even his favorite beers. We always made sure he had plenty of fresh water (not unlike what we do for the dogs).
  4. We supplied some staples, such as cereal, nuts, peanut butter and crackers, paper plates, and plastic cups and utensils.
  5. I put out pump bottles of hand sanitizer everywhere. I think we cleaned our hands even more than if we had access to only soap and water.
  6. There was no way I was going to give this man a bell to ring for service, so we agreed that if he needed anything, he should just call or text. 
  7. We even changed our nightly happy hour into a FaceTime call with Mara and me in the living room and Mike in the bedroom.
  8. We became experts in the art of Instacart and ordered all our groceries and other necessities online for either delivery or no-contact pickup.
  9. Mike's favorite holiday has always been Halloween. Sadly, we were unable to welcome ghosts, goblins, superheroes, or witches to our door and blocked off our driveway to ward off all trick or treaters.
  10. But, by far, the most difficult thing for Mike to endure, and for Mara and me to enforce, was to keep our dogs, Corey and Zoe, out of the sick room. Mike wanted nothing more than to cuddle with our pooches, but we recognized them as walking, drooling, licking, barking vectors for virus.
Sharon-Cray-Dogs-Dad-Isolated-Featured-Rectangle

 

Mike was tired, achy, and developed some mild respiratory symptoms, a cough and a chest heaviness. I am thankful that he was not terribly ill. Four or five days later, I started feeling rundown myself. I worried that I might have COVID-19 and wondered what to do to protect Mara. At that point, we took these additional steps:

  1. I moved from our shared bathroom into the only remaining bathroom we have, the powder room downstairs.
  2. I continued to shower in the shared bathroom but would disinfect it after each use. We also timed things so that Mara would shower before me.
  3. Mara and I also began to wear our masks whenever we were in common areas, like the living room, kitchen, and family room. We unmasked only when we were in our own bedrooms.
  4. I loaded the dishwasher, Mara unloaded. I avoided cooking for the family, so Mara cooked, we did a “free for all,” or we ordered take out.
It was so odd to have to separate myself from Mara, as I was so very used to being her caregiver when she was sick. Now both her dad and I felt like a threat to her. It was not a comfortable feeling for sure.

At day eight of this hostage situation, Mara and I were able to obtain at-home COVID-19 “spit” tests. What a weird and icky experience. You had to sign on to a Zoom call with a provider who instructed you on how to assemble the collection vessel and then watched as you filled it with saliva. I truly hope I never have to have someone watch me spit again. Thankfully, the results were returned to us within 24 hours and Mara and I were both negative. Yay! That news, at least, took some of the pressure off. It then just became a waiting game.

Days 9-14 were a blur, as one day rolled into the next. Mike felt a little better every day. His cough lingered, but it was not severe and was improving. We let him roam free after day 14, but since he was still coughing, he wore his mask when he was in common areas for a few more days and still kept himself to the master bedroom and bathroom.

Slowly -- excruciatingly slowly -- we began to rejoin the world. It would have been comforting to know when Mike was no longer shedding virus and it was safe for him to be around Mara. But no one could tell us precisely when that would be as some symptoms -- such as cough and loss of smell --  can last for months and no one knows precisely when a person is no longer contagious. So we used common sense and intuition, and we seem to have fared well.

This experience was difficult, but we were so grateful that Mike did not get seriously ill and that Mara and I remained healthy. We also were lucky that we had the space to spread out a bit and that Mara is an adult and was not only able to understand the crisis, but was also able to pitch in.

I could not help thinking about how much more difficult this would have been with little ones around the house. My hat is off to you home schooling parents!

It was also fortuitous that we could all work from home and did not miss work or school during our quarantine. Mike recovered, I stayed healthy, and Mara finished that Masters of Science in Public Relations! More importantly, we survived the strict isolation without killing each other. 2020 was a tough year, but the Cray family rallied together through it all.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Coronavirus (COVID-19) | Parents & Guardians
Sharon-Cray-Headshot

A graduate of the University of Notre Dame, Sharon left her business career after two of her children were diagnosed with cystic fibrosis. Since then, Sharon has dedicated herself to working to find a cure for CF and to furthering the goal of patient and family centered care. Sharon has served as a parent partner to several research projects including, the Patient and Family Centered I-PASS Study. She serves on several hospital committees at St. Christopher's Hospital for Children in Philadelphia, has coauthored several publications, and is an active volunteer with the Cystic Fibrosis Foundation.

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