When Caregiving Went From Being Hard to Being Confusing

When I realized that I was now going to be responsible for another person’s care, I knew it would be difficult. I would have to give a lot more of myself physically and emotionally. Be available to that person whenever they needed me, whether it be to help them eat or move around or comfort them. The task didn’t disappoint — it was difficult. But it was the months after the immediate crisis that surprised me the most.

My mother has finished active cancer treatment for now. She has gone through three major surgeries in the last two years that had long and taxing recoveries. She did a year of chemo and radiation that left her weak, and during that year I was on-hand 24/7 (the pandemic helped a lot in that I literally had nowhere else I could be). During those times my caregiving had a clear purpose. There were clear tasks. Making porridge for breakfast, helping her eat it, watching TV with her, getting her meds, and making sure she took them, etc.  I knew the extent of what I could do to make her more comfortable or to distract her. Even though it was painful to know there was a limit to what I could do to make her feel better, it was a limit I had to accept. By this I mean accepting that nothing I could do from home would ever cure her or take all the pain away. During surgery recoveries, it was again very physical work that took up most of my time.

During all of this, the message about the pandemic was ringing clear: it was dangerous for her (and by extension me) to venture out. The risk of getting severe COVID was high and not worth taking for anything other than hospital appointments. Then, things started to change. Surgeries and chemo were over for now. She was able to eat better, move around well for the most part and had more energy. At the same time the state of pandemic became muddled and we doubted everything. What was safe now? Was she still immunocompromised? Was COVID even still dangerous? Why are people wanting her to go back to work? Why don’t people want to wear masks anymore? Was I expected to return to my pre-pandemic college life and stop being a caregiver now? And the list of questions goes on and on.

This confusion in turn led to some serious, serious anxiety. Because nobody could answer any of these questions with any degree of certainty, they spun around in my head on a loop. I began having nightmares about our health. Nightmares not only about what had happened but also about what was going to happen. The nightmare of the recurrence is the worst one. The nightmare of the recurrence combined with us wanting to go out to eat and coming back on a ventilator is at a close second. I don’t know what my specific tasks are anymore. My mother still needs me for emotional support and still tires easily. But she has also begun to hint that it might be time for me to go out in the world again. And I am incapable of making these decisions.

The fear that has been instilled in me about both cancer and COVID keeps me awake at night. The strange superstitious idea that if I move from my caregiver position now she will suddenly go back to being very sick haunts me constantly. I’m in a space where I can’t tell what I am anymore or what is the right thing to do. Caregiving went from being a daily physical and emotional challenge to being a confusing and complex fog of emotions, doubt, and fear. Each stage comes with its own difficulties and lessons, which even though they are hard to swallow now, will serve me well later.