Caregivers, COVID-19, and Rethinking "Normal"

Caregivers, COVID-19, and Rethinking "Normal"
Photo by Gordon Dymowski

Nothing could have prepared me for what my mother said that Thursday afternoon. As her caregiver, I had grown accustomed to unexpected health issues.  She had been experiencing some severe issues which included a sore arm and back pain; she and I had both agreed that she might have had a small heart attack. So Mom did what any other person would do: she contacted her primary care physician for a check-up. After all, she was heading that Friday for an echocardiogram anyway...but Mom surprised me with a statement after she got off the phone.

"My doctor wants me to go in for a COVID-19 test," she casually announced.

She changed her schedule, and on Friday morning, underwent a nasal-pharyngeal test for CVOD-19. She was told that if she was positive, she would receive a call from the Department of Health; if she was negative, she would get an email to consult her online chart.

She received the email late Saturday morning; she was negative.

Caregiving for Mom has been a challenge, working through issues around compassion fatigue and caregiver burnout as well as other life issues. Although I was relatively confident she would test negative (Mom's only outings were for specific medical tests, since she relies on telemedicine for her regular "visits"), this experience left me a bit disconcerted. My mother had a liver transplant ten years ago and takes immunosuppressing drugs; her other health issues make her particularly vulnerable to potential infections. So that Saturday, I went out for a walk to clear my head and (potentially) pick up some needed items. Soon I put on my mask and headed out...and I regretted the decision.

People in my particular neighborhood congregated in front of the local Starbucks maskless and not conforming to social distancing standards. Worse, I was given strange looks as if I were somehow "violating" some unspoken social norm. Only one couple, as I approached one of my potential errands, cared enough to wear masks, and shared a casual hello. Luckily, one of the businesses I needed to engage in had a sign that declared "NO MASK NO SERVICE."

On the way home, I stopped by a local restaurant offering to-go only service, and thankfully the staff and fellow customers were all wearing masks. But the experience started me thinking about my past experiences as a caregiver during the current COVID-19 crisis...

As the state slowly begins transitioning to Phase Three of the Restore Illinois plan, many people have engaged in questionable behavior. Memorial Day video showing people congregating in public without any regard for public safety. State legislators filing lawsuits and even suggesting removing Governor Pritzker because the state is "not moving fast enough." Conspiracy theories about how COVID-19 spread and how it is being used for perceived political advantage. All of these things remind me of how some people when they hear that I am a caregiver, make remarks that are inappropriate like "There's one caregiver in every family" or "You're a saint." (Many of them are outlined in this AARP article on caregiving). These behaviors and attitudes, like many recent behaviors around COVID-19, suggest a particular attitude towards those who are more vulnerable in this pandemic:

"Better you than me; you're more expendable than I am"

No matter how they excuse or rationalize these statements and actions, the truth remains that they sting. "Essential workers" and health care professionals, like caregivers, are neither saints nor heroes; they are doing their jobs and trying to survive a difficult time. For every statement of empathy, people who avoid responsible behavior during COVID-19 are showing a lack of compassion. With almost 100,000 dead in the United States and nearly 5,000 in Illinois, those wanting things to rush into "normal" are missing the point. For those of us trying to remain relatively "normal", that goal may not be realistic.

So a humble suggestion: we might wish to consider rethinking what "normal" means, and that "normal" springs from the premise that we are caregivers for each other. Perhaps it is overly idealistic, and there are legitimate economic concerns that are driving reopening the state earlier. However, for those who believe that their "freedom" is being compromised, consider that freedom always balances personal responsibility with the greater good. Not wearing masks through a pandemic is like arguing that wearing seat belts is a personal choice: safety measures protect the greater community as well as the individual. Adopting physical and social distancing practices may be inconvenient, but given Wisconsin's "second spike" of COVID-19, it may be the wisest strategy for our state's citizens.

Getting back to "normal" has been at the top of my mind since becoming my mother's caregiver, and I have had to accept a different sense of "normal." The week after my March birthday, I was surprised to receive a coffee mug at the last public event I attended. It was unexpected and not given as a birthday gift, but that mug now has special resonance for me as a reminder of what I consider "normal": the gentle realization that kindness, compassion, and honesty may come in small moments, but are always significant in practice.

Because in this pandemic, nobody is expendable.

What are your thoughts? Please leave your comments down below or join the conversation on our Facebook page. Please note that all comments are moderated.

As always, thanks for reading!

Leave a comment