I’m a Control Freak Caregiver

Last week, I talked about how caring for my mother, Holly, before and after her double-lung transplant helped prepare me for parenthood. As an only child, I hadn’t yet had the opportunity to care for someone in such a comprehensive way. I learned a lot about myself and how to handle the responsibility of guardianship.

While I’m honored to have gained the experience I did by helping my mom in her time of need, I wasn’t the perfect “parent” to her. I developed a bit of a helicopter-parent complex. I took my role seriously — and still do from afar — because I wanted my mom to live. I know I can’t control everything or keep things from harming her. There’s not much I can do about the invisible things that are on every surface of the earth, including the air, such as viruses and pollutants. Still, I have tried to be the boss of both idiopathic pulmonary fibrosis and chronic immunosuppression.

My helicoptering, or hovering, started as soon as I saw my mom in the intensive care unit. When I sent out my first update to my mom’s inner circle, someone asked if they could send mail. I told them, “No flowers.” I also told them, “Don’t send a letter if you’re sick. Or, at least, don’t spit to seal the envelope.” I knew that cold germs probably wouldn’t survive on a piece of paper for several days, but a cold meant death, and I wasn’t about to risk it.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

The same precaution was evident in my response to visitation requests. My mom’s childhood best friend flew in from Texas to visit her several times. The first time, she asked if she should go to the apartment to shower between the airport and the hospital. I considered saying yes but then realized that I traveled to the hospital on a municipal train every day, which was probably just as germy as a plane. Instead, I suggested that she bring a clean set of clothes to change into at the hospital, and wash her hands.

Any time my mom had visitors, in or out of the hospital, I was not afraid to offer them hand sanitizer the second they walked in the door. If I was pushy, it was to protect my mom’s life.

I only realized that I was a bit of a control freak when I returned to Washington and my parents returned to their home. I check in often via text just to make sure things are going OK. I insist that my mom keep from doing things she shouldn’t, like eating foods that aren’t transplant-approved, scooping cat litter, or gardening. Thankfully, she is good at following rules, but she isn’t as scrupulous about living safely with immunosuppression as I am.

For example, when my mom mentioned that my dad mowed the lawn, I said, “You made sure all the windows were closed first, right? And he showered right after?” She responded, “They were closed because it is hot out, and he changed his clothes, at least.” I heard the nagging mom voice in my head: Aspergillosis, Mom. You guys have to be more careful.

She also told me that she had been doing a bit of vacuuming. My parents have an old-school, closed system vacuum, with a hose that plugs into the wall and sucks everything out into a container in the garage. As far as lung-safe vacuums go, it’s probably the best kind: It doesn’t kick up a ton of dust or blow anything out of the chamber into the house. Still, I heard that voice: Cat litter, cat hair, dirt, mold, spores … poof … in the air. I told her she really shouldn’t be doing that chore. She told me she doesn’t do it often and wears a mask when she does. I imagined her doing the teenage eye roll that I so often gave her years ago.

My nagging mom voice comes from a place of real concern — the consequences of being less than careful can be monumental. However, as my friend Kathleen, recipient of a heart-and-lungs transplant, once said, “If you spend all your time being worried about breathing the air around you, you won’t enjoy your life.” My mom has regained enough of her independence to take care of herself and manage her environment. My dad is still with her to provide support. Hopefully, neither of them are getting complacent about good habits.

I won’t stop checking up. I won’t stop reminding them to be more careful, but I do have to lighten up. They are adults. I have to remind myself that I’m not the parent, and when I’m so far away, I’m not a caregiver, either. Plus, I can’t control everything. I just want my mom to live her miraculous life.

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.