Reflecting On Lessons From Managing My CF Care
There are so many hard-learned lessons when it comes to managing all the care cystic fibrosis demands. It’s a tough road, y’all--lots of mistakes and guidance required. Therefore, learning to take care of yourself can be a stressful process for both the patient and especially their parents.
In my experience, my mom was a key figure in helping me transition from parent-centered care to more self-directed care. Funny thing is my mom is also a respiratory therapist (RT). That’s right, the medical professional who manages and treats respiratory diseases. Lucky girl!
Lessons about managing my CF care
People always ask me if my mom became a respiratory therapist after finding out I had cystic fibrosis. The truth is, my mom was a respiratory therapist long before her own daughter had a serious respiratory illness. Growing up, having a mom who deeply understood the respiratory system and airway clearance was sometimes down-right annoying. (She was the treatment police--and for good reason.)
However, having an RT mom had its definite perks. When it came to managing my care, I learned a lot about how to be self-reliant and knowledgeable about CF because of her specific expertise, and I am thankful for that!
Understanding the purpose of medications
My mom excels at a lot of things when it comes to being a parent of a child with CF. However, something that always came naturally to her was explaining how and why my medications worked. As a child, I specifically remember her explaining how the order of my inhaled medications worked together to treat my lungs as a team.
Each medication had a very specific--and important--job to help keep me healthy. Understanding why I was required to take all the medications made it easier to accept compliance and advocate for myself. It was the first step of many in taking more control of my care. Information is power, and I am happy my mom took the time to help me understand how powerful it is.
Now as an adult, I find myself researching and wanting to understand how each prescribed medication would benefit me. However, now the tables have turned and I am the one explaining to my RT mom how everything works.
Self-directed care is a process
According to CF R.I.S.E. (Responsibility, Independence, Self-care, Education), the transition of care is an early and slow evolutionary process--or at least it should be.1 It’s best to begin prepping school age children to slowly--in age appropriate pieces--take ownership of the responsibilities of care through the life course. Transition doesn’t happen all at once. Imagine how overwhelming that would be? Ultimately, in adolescence, each person with CF should begin managing the bulk of their care with support from their team and family.
I don’t know if I realized it in real-time, but my mom lovingly handed me pieces of my truth and care in a manner that truly prepared me to be independent. She made sure I was emotionally ready for the hard truths that CF brings, as well as equipped with knowledge and confidence that I could handle it all.
Even at twenty-nine, a mother myself, sometimes I need to take a step back and unload some of the duties off my plate in order to best take care of myself. My mom has always been willing to temporarily take back some control over my care to best support me. The process of moving to more self-directed care is a long journey--and sometimes not always forward-moving.
Encouraging support is vital
What is going on in my body? Why am I getting sicker? What am I doing wrong? Why isn’t it enough? Did I slack on my treatments?
So many times have I entertained that monologue over the last couple decades. It is so easy to blame yourself and feel frustrated during a period of decline. If you have been there, you know exactly how devastating and confusing it is to devote so much time to your care and it still isn’t enough to remain stable. You feel hopeless and out of control.
Support is a part of managing CF care
When facing CF, you absolutely need a cheerleader or hype-man--I know I do. You need someone to remind you that CF is sometimes out of your control and that they are proud of you for taking care of yourself no matter what. Sometimes, I needed someone to acknowledge all the work I put into my health because, otherwise, it felt pointless when my lung function or weight dropped despite my efforts.
I don’t think that need for encouragement disappears when you become fully responsible for your care, either. However, your “cheerleader” might change from your parents, to your friends, to your significant others as time progresses--that’s all part of the journey!
How did you transition from family-oriented care to more self-directed care? Parents, how did you help your children take ownership? Share with us in the comments below!
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