When Caregiving Calls

Before we knew about COVID-19, I was living the life of a grad student at the University of Florida, where I am pursuing an MBA. I volunteered with the Gator track team, was active with my church, and enjoyed Gainesville nightlife with my classmates. The weekend after Spring Break, my friends and I were relaxing by the pool when I received a call that the track & field season had been officially cancelled by the NCAA. My weekly spring & summer plans to travel with the team to track meets like SEC’s and the Olympic Trials melted away faster than a popsicle in a Florida summer.

Hannah with Friends Hanging Out Poolside
Hannah Hanging Poolside with Her Friends

As our classes transitioned to being fully online, I made plans to watch Zoom meetings in hammocks strung between palm trees with friends. We heard about social distancing but weren’t worried. Our crew of 20-somethings went to the bars that weekend, feeling invincible, but knowing that it might be our last chance for quite some time. Despite the disappointment of losing the opportunity to coach, life those first few weeks was slow and happy.

At midnight on the last Sunday in March, my life changed in an instant. I was walking home from a “social-distancing” bonfire when my mom called to let me know that my grandpa was in the hospital with a possible stroke.

Last year, he was diagnosed with Parkinson’s disease. My grandma, his wife of 50 years, had been diagnosed with Alzheimer’s disease a few years before that. After COVID-19 hit, our regular professional caregivers resigned in order to protect them from the disease. My parents attempted to provide some caregiving, but they both still worked full-time.

The next morning, I packed a bag and made the 14-hour drive home to rural Ohio. My grandpa was expected to be in the hospital for a few days and my parents were already worn ragged after staying up all night with my anxious, confused grandmother. I stopped only twice to fill up and use the restroom, anxiously trying not to touch anything for fear of contracting the virus and spreading it to my vulnerable family members.

I arrived home at around 2:00 AM. My grandma was aggravated and awake, asking every few minutes where her husband was and being once again crushed by the news that he wasn’t coming home that night. My mom hugged me quickly and went home to sleep for the first time in 36 hours. I slept on the couch outside my grandma’s bedroom to reassure her and answer questions each time she woke up.

It took a few weeks to get in a rhythm, but we eventually found one. Grandpa made it home after a few days in the hospital feel refreshed and re-energized. His diagnoses? A flair-up of his Parkinson’s symptoms due to heavy, constant stress from trying to care for my grandma without help. Nevertheless, the episode made things harder for him. His tremor increased and his working memory became foggy. The family pressure for him to finish his 50+ year career as a family physician, added to the complications of running a business during the coronavirus pandemic finally pushed him over the edge; it was time to retire. Everything was changing for each of us.

Hannah's Grandmother Looking at the Computer
Hannah’s Grandmother at the Dining Table

Each morning, I sat beside grandma and worked on my school work while she napped in her armchair. I made her two eggs and toast each morning and pretended not to notice her feeding bites to her dog. I cooked lunch and supper, did dishes, snuck her clothes into the laundry, and swept the floor when she was napping. I streamed my classes live while she watched and occasionally commented – either adding something insightful about the content or making snide comments about the professor or a classmate. I became very skilled at keeping my video on “mute”.

Hannah Playing Music for Grandparents
Hannah Playing the Violin for her Grandparents

Sometimes I played my violin for them. Music was the only way to truly calm my grandma when her Alzheimer’s made her agitated and anxious. We listened to the same Judy Collins CD on repeat every day. We colored and worked on puzzles and sat on the porch watching people walk by in masks and preventing grandma from running out to greet them. She slowly began to remember that we were in a pandemic. Despite not having any functional short-term memory, I realized that she occasionally did retain new memories. It gave me some sense of hope that perhaps she would at least remember feeling loved and taken care of during these last few years of her life.

Each night, they settled into bed to watch Netflix at 8:30. Some days, I could sneak out for a run before the Northern summer sun went down. In the evenings, I would draw myself a hot bath or go to my parent’s house to debrief a hard day before working on my homework. I found myself going to sleep later and later each night, craving just a few more minutes of time to myself.

Caregiving requires a level of selflessness that I had never experienced before. I moved outside of my own mind to constantly be creating a world that my grandma would thrive within. I remember standing in front of the mirror one night and realizing that I hadn’t taken a moment to look at myself for several days. I saw the definition in my arms and shoulders and remembered my old life – the one in which I was an athlete who took the time to lift weights and run free through country roads. It hit me that this wasn’t that long ago. I was letting my sense of self slip away, but I hadn’t missed it until then.

It hit me too, however, that while I built my body to stand on a starting line and pursue my dreams, I could also use this body to care for my family. I felt deep, deep gratitude in that moment, even while I mourned the loss of freedom and independence. I had the sensation that perhaps this is what we are born to do: to give ourselves to each other. Love as a verb.

Last week, my aunt moved in to take over for me as the primary caregiver for my grandparents. I piled in the car with my girlfriends and drove to our cabin in Northern Michigan for a week by the lake, feeling weight lift off my shoulders as we flew through country roads. I know my grandparents are in loving hands, and I have the summer ahead of me to work on my internship and tend to my other relationships.

Caregiving is a process of getting to know your family in new ways and new roles. Caregiving is reciprocal; even as it wears you down, it fortifies your heart. Caregiving is taking risks and finding creative solutions and doing what needs to be done. I am tired, but I’ve never felt more whole.

Arin Yost

Arin is a Program Analyst at the Atlanta Regional Commission, where his work focuses on health disparities and equity across the Atlanta region.