At some point in my parents’ lives, people started to look past them. Medical professionals—doctors, nurses, technicians—began to address me and not them. I can’t quite figure out exactly when or how the transition happened. But I do know that it is present in almost every interaction I have. Overnight, seemingly, I went from being their daughter, who was giving them a ride to their appointment to the caregiver and sole representative in the eyes of doctors, nurses and technicians.
Perhaps it wasn’t overnight. Perhaps it was every time I allowed it to happen; every time my parents handed me a form to fill out or let me walk in first to the nurses’ station. Perhaps it was a culmination of moments where administrators and doctors began to give me prescription slips and give me pre- and post- op care instructions. Maybe the process was slow; the permission to give up power—of their autonomy.
Did I take it from my parents? Did they give it to me? Or did medical providers make a unilateral decision?
All my life, my mother has struggled with certain systems. Whether it was due to a language gap (she’s from Puerto Rico and Spanish is her first language), or her unease in front of medical providers, she has always brought me or my father along to appointments. I remember being as young as 12 or 13, and doctors would address both of us. They mostly looked at my mother before detailing alarming news to make sure it was okay if they continued with the conversation. I remember my mother giving them a nod or an “It’s okay,” to speak freely about any conditions they needed to address.
But, in 2018, after her heart attack, my mother seemed to disappear from the room. Doctors spoke directly to me or my father, about her treatment choices, about stents, about medication, about physical therapy. And then gradually, or rapidly, I can’t quite figure it out—my father disappeared from their eyes, too.
The Gaze Intensifies
A few months ago, my father went in for a routine checkup. At the time, he had been in remission from prostate cancer for nearly a decade. He knew that these routine checkups were just that, routine. Until they weren’t. One scan came back with elevated levels, and then another, and then a third. There was no denying that his cancer was back and with it an onslaught of tests, procedures, consults and bloodwork.
Was I taking part in invisibilizing them from the room?
“Stage IV Prostate Cancer.” That was when I started to really notice it. The moment those words left the doctor's mouth, and their eyes were on me. At that moment, I saw it everywhere. Each time I took my mother for a check-up, or my father for a test. I began reflecting after my mother’s surgery when she spent weeks at a rehabilitation facility: papers were handed to me; clipboards passed over my mother’s head with forms for me to fill out.
I began thinking of my father signing in and administrators craning their necks around him to ask me about appointment times and refill needs. And then I realized my own patterns: of walking in first; of listing my number; of saying “we” instead of “he” or “she.” Was I also taking part in invisibilizing them from the room?
I wondered if my parents had noticed. More often than not, they are quick to refer to me when doctors give them choices regarding their medication, or when there are appointments that need to be scheduled, or to weigh in on treatment plans. And to be truthful, I’ve avoided the conversation. I’ve just assumed the role of caregiver came with this sort of merged identity of “we.”
There is so much trust involved with caregiving. There is, especially in my experience, an assumed best interest. There is faith my parents hold in knowing that every decision and action comes from a place of ensuring my parents’ well-being. With this, there is often so much unsaid. There was no job description, or interview. There was just one day, I was a caregiver with countless sets of eyes turned to me.
Breaking the Gaze
I’ve begun shifting my habits—attempting to do so without making it obvious to my parents. However, maybe that was my first error. I need to do a better job of having open conversations with my parents about what they want as whole human beings. Instead, I started with a subtle shift of my body language in care settings.
My parents look at them, they look at me, I look at my parents.
Walking into the room and speaking with doctors, nurses, even front desk administrators, is always a battle of eyes. My parents looking at them, them looking at me, me looking at my parents, and trying to get the providers to address the people who are receiving the care. I enter the room last and take a seat after my parents are settled. I position my body differently, asking my father or mother first what they think when doctors ask me directly.
Often, I see providers adjust their language. Perhaps it’s subconscious, but usually if I begin to address and underline that they should address my parents directly through my body language, providers typically fall in line. Then again, sometimes they don’t.
I’m unsure of what this means for our caregiving future together. I know I’ve begun to think through how I can hold the line of supporting their care and ensuring my parents’ dignity. I asked my mother the other day why she doesn’t tell me when her heart hurts. She told me she was scared to tell me something because I might blow it out of proportion.
That conversation led me to understand how sometimes she needs me to separate being a daughter from being a caregiver; sometimes she just needs to be heard and not “solved for.” I realize it’s not all treatment plans and medication management. Listening is caring, too. And so is looking directly at my mother and father when they enter a room.
Conversations are hard, but it’s time we start to have them. The trade-off of not having them becomes a continued, ever uncomfortable battle of eyes, and unresolved notions of agency.
Sadé Dozan, MPA, is the senior director of Development at Caring Across Generations, based in New York City. She is a Black-Latina, sandwich generation caregiver—balancing her own care needs, both of her parents’ care and that of her toddler-age daughter.