What does it look like to take care of yourself while also accompanying an ill family member through their later stages of life?
Let me backup just a little… to the beginning of my deliberate practice of self care in times of family struggle. Upon returning home from college my sophomore year as a 19-year-old in May of 2019, I was informed that my Dad had been diagnosed with stage 4 liver and prostate cancer. His health was starting to worsen by the time I left for school that fall, but my Dad was still my Dad, and it seemed to stay this way for a few months.
When I returned home from school this past month due to the pandemic, something felt different, and it was. The man who could go out and run 10 miles without breaking a sweat wasn’t the man sitting in front of me anymore, and that had to be okay. As I’m sure other people in similar situations can attest to, in situations like my own, the attention is no longer equally distributed across the family. All eyes are now on my Dad, as they should be. However, in focusing so much of my love and attention on one person for almost a full year now, I found my own health being put on the back burner.
Returning home brought forth many new challenges in caring for my Dad because I had to navigate my own health journey in testing positive for COVID-19 and simultaneously learn to care for my Dad from a distance.
Today, April 6, 2020, marks day 20 of isolation in my bedroom. The only reason I have to leave my bedroom is to use the restroom. Meals are dropped off outside my bedroom door, and the only face-to-face contact I’ve had with my parents has been through FaceTime. Being in my house with an illness that is so life threatening to my family has brought me many feelings of guilt. At the same time, I have realized I need to take some time to take care of myself so that I can take care of my Dad.
The concept of self care is, and always has been, a foreign concept to me. It is flustering to think that you can live every day of your life, relatively happy at that, but never consider if you are truly taking care of your mind, body, and soul. My and many other people’s lives are so hectic, following a schedule planned out so specifically, that by the time you get in bed at night it felt like you blinked and the day was already over. Then, when you incorporate outside issues, an already busy schedule becomes that much more insane.
Now, in isolation, I find myself looking inwards. This period of quarantine has been very mind-opening and reflective. I am learning that taking care of myself is in turn taking care of my Dad. While the ways of practicing self care look very different for every individual, taking small chunks of time out of my day to take an extra long shower, listen to music, read, meditate, draw, facetime, do a puzzle, or even just watch TV have been completely mind-altering. As frustration or feelings of loneliness or guilt arise, I find myself doing small acts of self care not only to pass the time, but to decrease anxiety and channel my emotions in a more productive manner. Furthermore, practicing self care not only makes me a better and stronger person, it makes me a better daughter, friend, teammate, and accompanier.
Specifically, being a better daughter to me means I am not only more patient with my Dad and the many changes he is going through, but also more patient with myself. Prioritizing my own self care has made it far easier for us to communicate and has also made doing simple tasks for my Dad less frustrating than in the past. Furthermore, it has made me far more grateful for the time I have had, and still have, with my Dad instead of being angry at the world for cutting our time short. Lastly, a large part of being a better daughter for me means not feeling guilty for being angry or frustrated. It’s terribly easy to beat yourself up for being angry at someone who can’t help what’s happening to them, but practicing self care has made me realize that sometimes it’s okay to feel this way.
In my current situation, my mind immediately goes to a reading from this semester by Paul Farmer titled “Accompaniment as Policy”. In this transcript he brilliantly states, “I’ll go with you and support you on your journey wherever it leads. I’ll keep you company and share your fate for a while. And by ‘a while,’ I don’t mean a little while. Accompaniment is much more often about sticking with a task until it’s deemed completed by the person or people being accompanied, rather than by the accompagnateur” (Farmer 2011). With this period of time in which there is nothing to do but think, I’ve realized that starting routines of self-care has made me feel far more equipped to see this difficult journey through with my Dad than ever before.
There is always light at the end of the tunnel. Even when there seems to be only darkness, if you move with purpose some light will appear.