Role Reversal: When Someone With CF Becomes a Caregiver

As someone with cystic fibrosis, I struggled with the fact that I might be a burden to those who helped care for me. Things changed when I married Ramón and learned the true meaning of caregiving.

| 5 min read
Drew-Dotson-Headshot
Drew Dotson
Drew smiling hugging her husband, Ramon.

Burden. The B-word. I don’t remember the first time I labeled myself a burden because of my cystic fibrosis. I decided I was a burden when I realized my care required extra effort — extra attention that my siblings didn’t get — and I didn’t like it.

When I was very young — still too small to swallow pills — my parents prepped my meals by sprinkling my pancreatic enzymes in apple sauce — or better yet, chocolate pudding or ice cream. Although dessert before dinner might sound like a kid’s dream, the extra attention made me feel like an inconvenience. Family trips or events were planned around my respiratory therapy and doctor visits, meaning spontaneity was pretty much nonexistent in our lives. I felt like I was at the center of everything, and not in a good way.

As I grew older, and particularly when I started dating, my feeling of being a burden only intensified. At least with my family, I knew they were supposed to help care for me — to do what was necessary without complaint. However, when it came to romantic relationships, the same rules did not apply. Whereas my parents couldn’t swap me out for a daughter without CF, my boyfriends could easily find a girl without complex health needs. They had the freedom to make their own decisions, and sometimes those did not include me. 

In 2011, when I met Ramón, things felt different. Early in our relationship, he assured me that he’d handle the cooking and cleaning if I stayed on top of my treatments. Even then I still struggled with guilt, concerned that Ramón would change his mind and look for an easier arrangement.

As he showed his support day in and day out, I finally started to believe that, when it comes to unconditional love, nobody’s a burden. Doubts inevitably crept in when my illness forced us to change plans or stay home.

But the B-word crossed my mind less than ever before, especially after Ramón and I got married in 2015. We had committed to each other for a lifetime.

A few years later, the B-word reared its ugly head again, and not in a way we’d expected. In 2019, Ramón was diagnosed with acute myeloid leukemia. He was initially hospitalized for a month, and with no preparation at all, I found myself in the caregiver role. I frequently left the hospital to pick up food, to do laundry and return with clean clothes, and to tackle anything else we needed, like arranging care for our three dogs. 

During this role reversal, I began to see yet another perspective — that I was honored to care for Ramón. When I was doing things for him, the B-word never crossed my mind. Ramón’s leukemia went into remission, and after five grueling rounds of chemo, we slowly reverted to our initial roles — Ramón as caregiver, me as recipient. It didn’t last long.

Ramón’s leukemia returned the next year, requiring additional chemotherapy and radiation before he could receive a bone marrow transplant. Just nine days after his transplant, Ramón suffered a cardiac arrest that resulted in a brain injury. Overnight — literally — he became incapable of doing anything for himself. He couldn’t communicate or manage basic tasks of self-care. Though we’d both assumed caregiver roles at different points in our relationship, this was different. It was extreme caregiving. 

The nursing staff taught me many skills I would need in the future, like giving Ramón medications through his G-tube and changing his tracheotomy dressing. I helped reposition him to keep him comfortable and even learned range-of-motion exercises to preserve flexibility and mobility in his joints. My favorite thing, though, was pampering him — whether brushing his teeth, keeping him clean with body wipes, or slathering lotion on his youthful skin. Despite my heart breaking seeing him like this, I felt privileged to help him in such a meaningful way.

Though I was prepared and willing to help Ramón for years to come, I didn’t get the opportunity to do so for very long — and I use the word “opportunity” here intentionally. Ramón died three months after his cardiac arrest. And though my time as his caregiver was short, it taught me a lesson that changed my life forever. 

When love is involved, nobody is a burden.

Having visited the other side of the caregiving world, I can officially eliminate the B-word from my vocabulary — and I encourage everyone with chronic illness to do so.

Might people consider you a burden? Possibly. But if they do, those are not the people you’re meant to do life with. When somebody loves you and supports you through thick and thin, they are doing it because they want to. It’s a choice they made and continue to make over and over again. 

Thinking you’re a burden is a burden in itself. Set yourself free.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Social Life and Relationships
Drew-Dotson-Headshot

Drew is an Atlanta-based author who uses her experience with cystic fibrosis, widowhood, and humor to inspire and uplift others. She posts regularly on her blog and has also written a memoir that will soon be seeking publication. She currently works as a freelance writer and uses her improv background to lead therapeutic sessions and communication workshops. She is also a passionate advocate for the Cystic Fibrosis Foundation. She lives with her three senior beagles, Noodle, Benny, and Magpie. Connect with her on Instagram and Twitter
 

Recent Community Posts
A Letter to Myself
Blog | 6 min read
People With CF Are Living Longer. What Does That Mean for Our Care?
Blog | 6 min read
How I Felt Seeing My Daughter in Her Vest for the First Time
Blog | 3 min read