"It’s So Hard": Caregiving During COVID
Sarah Prielipp
Keywords: hospitalization; ER; gendered carework; division of labor
Categories: Parenting and Possibility in Impossible Times; Sick/Disabled Bodyminds during Sick/Disabling Times
Content warning: hospitalization; ER
Upon returning home from a much-anticipated family vacation at the end of May 2021, I felt off— tired, unable to focus—and I had a low-grade fever. Despite having my COVID vaccination, I worried that I had somehow contracted a variant or had a mild case, so my first stop was a COVID test. Within 24 hours, the test came back negative. But I continued to feel sick, and I spent almost 24 hours in bed. The doctor ran some tests, and told me that she thought I had pneumonia. She recommended that I go to the ER for some X-rays and further tests. Stubbornly, I didn’t go, because I was sure that I’d be fine and I wanted to get my summer classes prepped for the upcoming week. Furthermore, my husband was preparing to go out of town for work.
My husband works away from home frequently, and his work often takes him to remote places in Alaska that are accessible only by boat or plane, often without reliable cell phone coverage. When he told me that he needed to head to a village for work, I told him that our four kids and I would be fine. I just needed to sleep. He told our two oldest teenaged children to make sure that I was eating and drinking and got on a plane. While many of his trips last only a week or so, he has also been stranded by weather that prevents him from flying home or by a job that ends up being more complicated than planned and has been gone for more than a month at a time. When he goes to the villages, we never really know how long he will be gone.
By early June, just a few days after we had returned home from vacation and my husband had once again left on a work trip—I’d be more exact but I don’t really have any memories of the time after going to the doctor’s office—our daughter called her dad to let him know that I was acting strangely and that I had not eaten or drank anything all day. He told them to take me to the ER. Once there, I insisted to the doctors that I was fine, but that I had been in a car accident. Scared, my kids told them that my story wasn’t true. It took 24 hours for the ER to officially admit me to the hospital, but they ran tests and found that my oxygen levels were well below an acceptable threshold. I went straight from the ER to the ICU, where the doctors began running more tests over the next few days to find out what was wrong. Sedated and intubated, they discovered that I had Legionnaires’ pneumonia, a rare disease that affects about 10,000 people in the US each year, according to the CDC.
I actually have no personal memories of any of this time—only what my family has filled in once I was home and recuperating. All I remember is waking up with a tube sticking out of my mouth and being physically bound to a hospital bed so I wouldn’t remove that breathing tube. At that point, I had been in the hospital for nearly a week. My husband arrived in the evening after his work day, filling me in on everything going on at home and reading aloud the texts and emails I had received on my phone from family, friends, colleagues, and my students. I was surprised to see him; one, I didn’t know where I was other than a hospital. Two, I didn’t know that he came to see me every day. He told me about our oldest two children’s jobs and how they were helping our younger two children get to their summer camps and activities; how he was managing the house, meals and grocery shopping; that his work was making sure he stayed in town while I was in the hospital. Unable to respond, I listened and soaked up all that I could, but then visiting hours would end, and I’d be left to wonder once again where I was and when he’d be back. I didn’t even know that I was at the hospital where we lived rather than a larger city. And I couldn’t ask because I was still intubated.
A day or so after my first memories of being in the hospital, the respiratory therapist and nurses removed the breathing tube because the doctor decided that my oxygen levels were high enough and that I was ready to begin breathing on my own, or at least with less invasive assistance. I do remember that day and the vivid nightmares I had of drowning—nightmares that I shared with my husband when he visited the next day and which the day nurse confirmed wasn’t exactly a dream. Apparently, the night nurse didn’t respond to my calls and I did nearly “drown” with the oxygen mask. Fortunately, another nurse was walking by and saw what was happening and came in. She removed the oxygen mask and put me on high-flow oxygen — tubes in my nostrils that did not cover my nose and mouth; I don’t remember actually going back to sleep that night, nor the next night when the same night nurse was assigned to my care again.
I was in the ICU for a few more days after they removed the breathing tube before I was moved to a regular room, where I stayed for a few more days before being discharged to finish my recuperation at home. Part of proving that I was ready to be discharged included meeting with a nurse care manager, who made sure I would be safe at home.
“Oh, Sarah, this must have been so hard for your husband,” she said to me. She then continued to shame me for being “so sick” and needing my husband to care for everything at home while he was still working. I stared at her without saying anything back—mostly because I didn’t actually have my physical voice, but also because I was shocked that her main concern was my husband’s difficulties rather than my actual physical care needs post-hospital stay. At this point, I had been in the hospital for nearly two weeks. I was barely able to talk. I still needed oxygen throughout the night. And I could hardly walk from the hospital bed to the bathroom because my muscles were weak. But the biggest worry was that my husband had been “inconvenienced” during my hospital stay.
And doesn’t that kind of say it all about carework and expectations around who does it? I was shamed for needing care—because women, mothers, don’t need care; they do the carework. I was told to expect a long recovery, but then also made to feel guilty for the time I would need to feel “normal.” When I asked about physical therapy at home, she insisted that she couldn’t order that because surely I didn’t feel “homebound,” did I? I didn’t want to be limited to staying at home, did I? (Actually, I sort of did want exactly that.) She made it clear that I should “bounce back” as quickly as possible, that I needed to take care of my family. Oh, yeah, and myself.
Although I was angry with the nurse care manager, I also felt guilty about my anger. My feminist self was angry that she was praising my husband’s carework, but I also felt guilty because I knew that he had done more than he was used to doing (maybe even than I “allowed” him to do), and that he had been worried and scared for our family while I was in the hospital, too. What the nurse didn’t note or even seem concerned about is that all of the things my husband did are things I always do while he works away from home. Managing our four kids’ schedules, making sure the house is semi-cleaned, planning meals and buying groceries, paying bills, handling the many small “emergencies” that crop up, from broken furnaces to sick kids to vehicle maintenance—I do this every week and most often without help, even when he is home. Furthermore, I am also tenure-track faculty at our local university. In fact, we moved to Alaska for my job, not his, which seems to surprise many people when they ask how we ended up here. I returned to all of these work and family tasks almost as soon as I returned home to recuperate, because my husband once again was available to work out of town, and my summer courses still had several weeks to go.
Her comment makes me think about popular books by Sheryl Sandberg (2013) and Brigid Schulte (2014) that I read while pursuing my doctorate as a wife and mother.[1] Both authors argue that the only way to reach equality is for both genders to share equally in career-building activities, household duties, and child care. Schulte writes, “You can’t have it all unless other things shift in other people’s behavior—unless men actually reduce their working hours and increase their time doing housework and child care, unless cultures change and we’re prepared to give social support to parents” (p. 35). As a feminist, I’ve read these books and other feminist scholars, and yet I still perpetuated these sexist, heteronormative expectations in my own home. In fact, I’ve tried to prove to myself and to others that you can have it all, even if you have to do it all, because a woman need not be limited to caregiving. In other words, I saw trying to “have it all” as a feminist act of resistance against heteronormativity, which actually exacerbates the problem, according to Sandberg’s and Schulte’s arguments. Apparently no one ever suggested this equality to my nurse care manager, either, and even though I know this argument, I have ignored it, too. My illness made it clear to me that my husband and I do not have equal responsibility in the home and for caregiving activities: I have (mostly) done it all, and he has been free to pursue his professional obligations without concern that everything would get done in his absence. I have allowed him that freedom, because that is what society and my own upbringing has taught me to do.
I would like to believe that the COVID pandemic might create the cultural shifts and social support needed for more equality, but it seems like more women are leaving their careers. Months after my own near-death illness, things haven’t really changed in my family either: my husband still works away for weeks at a time, and I still plod through life—work and caregiving and trying to maintain my health—mostly on my own. Some friends and colleagues tell me that this is the Alaskan way of life; with the state’s geography and economy, shift work is common in Alaska for many families. What has changed is that my husband and I both realize this life is unsustainable, so like many others in the “Great Resignation,” we have begun looking for an exit. My husband wants to be more present, and I want a more equitable partnership. We are both finally ready to begin making these cultural shifts within our family, because it is so hard to do it all.
[1] Sandberg, S. (2013). Lean in: Women, work, and the will to lead. Knopf.
Schulte, B. (2014). Overwhelmed: Work, love, and play when no one has the time. Farrar, Straus, and Giroux.
Bio
Sarah Prielipp, PhD, Associate Professor of Writing, University of Alaska Anchorage.