Women and caregiving in the pandemic, there’s hope on the other side

person in glove wiping surface of sink in modern bathroom Photo by Karolina Grabowska on Pexels.com

By Karen Paul

There has been a spate of articles, most recently an 18-page section in the New York Times, about the impact the pandemic has had on mothers in the U.S. Over four million jobs held by women lost since March. A 700% increase in calls to the crisis hotline for working parents at the Center for WorkLife Law.

Women are working at the kitchen table while overseeing Zoom school; they are also working in the closet, stealing a few quiet moments in the stairwell, and juggling screaming children, nursing babies, feelings of anxiety, depression, overwhelming loss and inadequacy to the task. There is a lack of child care, closed schools, no other parents available to help because of Covid. Lost wages, lost time, lost senses of self, lost everything.

And while I have worried about my friends with young children, trapped in a maelstrom not of their making with no clear end in sight, I have also been breathing tiny sighs of relief that my children are older and that their pandemic needs are different. Their mental health has been my biggest worry, and while that is a big worry, it is not a 24/7 occupation. 

But I’m also completely triggered by these stories, because the tale of a working mother during the pandemic mirrors my own experience as a caregiver just five short years ago.

It took me a long time to recognize that my husband’s illness and death from brain cancer were not the only pieces of the grief puzzle I needed to process and learn to incorporate into my life moving forward. Perhaps even larger was the trauma of my year of being his caregiver—a non-stop 54 weeks during which time I was responsible for every move he made and every need he had—while also managing my three children’s fear and sadness and school and life events. In addition, I was maintaining our house, dealing with all of the family’s emotional labor as well as the fact that I had been tossed into the role, overnight, of becoming the sole wage-earner as I continued to work at my full-time job. 

My husband was physically incapacitated from the beginning of his illness. A mangled shoulder, caused by his first seizure, not only created a huge diversion from the tumor rapidly growing in his brain but also set off a cascade of physical ailments that required a wheelchair from the moment he left the hospital—as well as two surgeries, six months of rehab and physical therapy and a stubborn patient’s fixation on healing the part of his body over which he had some control. He spent the first six months of his final year in a state of believing that if only he could conquer the shoulder everything would be ok. 

For the first month, when he was still in the hospital, I was on sentry duty for 15-hour days as I needed to be his case worker. I was interlocutor between the various doctors—none of whom talked to each other—gatekeeper to phone calls and visitors, decision maker, surgery scheduler and comforter-in-chief to everyone around me. 

Once he came home, the burden exploded. I managed all his medications, took him to doctor’s appointments, physical therapy and six weeks of daily radiation therapy (all in a wheelchair). I dealt with reams of paperwork, made many meals a day to feed his steroid-induced appetite, was on call through every night and managed each new challenge, including the onset of diabetes and blood clots that almost killed him; I attended to his anxiety, his depression and his fear. By the end, I had to work with hospice, pick out his funeral plot and be the one who would gradually increase the morphine dosage, at his request, to help nature accelerate its course.

On top of these duties and my own anticipatory grief, I had one child away at college and not communicating, two children flailing in high school and a job where I needed to be a public face for my organization with our community. 

I was on non-stop. There was no moment for self-care, few moments of reflection. Something was always askew, someone always needed me. Some of my closest friends held an intervention over tea and home baked cookies, imploring me to get some help. I went on an anti-depressant and hired a part-time home health aide. Both offered some relief but didn’t change the essential truth— it was all on me.

And when it was all over, after the funeral and after the three days and nights of shiva, and I was able to go up to my bedroom and fall down on the bed … where I hadn’t slept for a year because my husband had needed multiple pillows and it was filled with sickness and medication and impending death … I looked up at the ceiling and wondered what would come next. I couldn’t lie still. I had to keep moving.

I kept moving and moving for months after my husband’s death. I didn’t know how to stop. And I was afraid that if I did stop I would no longer be useful. I traveled. I met my new partner. I changed jobs. I kept going and going, breathless with fear and anxiety and raw with unprocessed grief. Until I crashed. Hard. Everything had to stop. I had to get off. I had to fall apart before I could start picking the pieces up all over again and figure out a new way for them to fit together. Because the old way no longer existed. 

I imagine that this is not dissimilar from what many of my young mother friends and colleagues are going through during the pandemic. The relentless need for their time, attention and energy until they won’t know how to skid to a stop even when it’s over. The unfairness of it all must hit them like a brick, just as it did me. We didn’t ask for this new life, this set of unattainable demands and responsibilities. 

There are no answers. There is no fairness. There is only the immutable truth, which is that life comes at us with no plan, and we have little control over its speed or what obstacles it places in our path. We only have our own reaction, the daily drip of tasks and responsibilities, and the assurance that nothing lasts forever. This moment too will end, just as my caregiving year ended. And whatever comes next will require yet more shapeshifting to absorb a new set of demands, even as the trauma left in its wake will stay with us for a long, long time. 

But one thing I know about making it to the other side of a terrible moment—life’s journey allows for rebirth, and an opportunity for remaking ourselves again and again. Our scars offer the roadmap forward.  

Karen Paul is a writer by night and by day runs her own non-profit development consulting business. In addition to having essays published in numerous outlets, she blogs regularly about her life as a widow and a parent, is working on a memoir about grief, is currently working towards her MFA in creative non-fiction and also holds grief writing workshops around the Washington, DC region.

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