Acknowledging my subconscious fears as a caregiver
In many ways, we become like our own parents
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“You always take the same way home,” my mom said to my father.
My dad glanced at my mother, smiled, and kept driving. “Habit,” he replied.
We were on our way home from school, and my father was taking our usual route. My mother chuckled. My father was and is a creature of habit. He very rarely veered from his usual routine, not only because it worked, but because he knew what to expect.
My mother, however, was the complete opposite. She loved driving to get lost so that she could see how to get home. Whenever we were in the car together and I was driving, it wasn’t uncommon for her to say, “Take that way and see where it goes.”
By the time I started driving by myself, I followed the same habits as my dad. I found comfort in the usual way to school, or the usual way home, or the usual way to the grocery store. Even now, I know the exact time it takes to get to certain places and sometimes feel uncomfortable when my usual route has obstacles or detours.
Because of my mother, I rarely get lost, but being comfortable in what I know definitely comes from my dad.
Recently, I discovered that comfort has bled into other parts of my life.
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), the first thing I had difficulty with was the unpredictability of the disease. There was nothing predictable about her symptoms or flares. Initially, although we visited the hospital quite frequently, there was no clear pattern.
Finally, when her doctor prescribed Haegarda (human C1 esterase inhibitor), a preventive medication, I relaxed a little — until it stopped working.
When she finally found relief in Takhzyro (lanadelumab), and I understood the science behind when to administer Berinert (human C1 esterase inhibitor), I reached a comfort level as familiar as driving the same route home every day. Her medication works for her, and it’s something that we can rely on.
Recently, Ladybug’s doctor reached out to discuss a new treatment that research has shown works well for patients with HAE with normal C1 inhibitor.
“I think this is something that we should look into,” he said during one of our most recent conversations.
I paused. Inwardly, I immediately rejected the idea. The current regimen works. I know exactly what to do and what to expect. I could dose Ladybug with my eyes closed if I needed to — I’m just that comfortable.
A couple of days ago, though, I realized that this is just another form of fear. What happens if the other medicine doesn’t work? What happens if I’m not as good at administering it? What if the rhythm changes and I forget and she ends up in the hospital? It’s not starting new medicine that’s scary; it’s not knowing what will happen.
Yet, Ladybug has proven to be a little more like her late grandmother. When I talked about the new medication with her, she shrugged in a typical teenage way.
“I can try it and see,” she replied.
While my knee-jerk reaction is to “go the same way home,” I’m not the patient, and my fear of the unknown is my own, not necessarily hers.
I’m still figuring out how to manage my own fears as her mom, while making practical decisions as her caregiver. And maybe, the more I let her take the reins, the more we can ease into the methods that make her comfortable. Because ultimately, when it comes to her own treatment, she’s the one driving.
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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