I have been a caregiver to a family member for more than 11 years—the kind of caregiving that requires everyday attention. While I don’t provide physical care with activities of daily living, I do organize or provide everything else: ensuring that meds are stocked and taken, arranging care aides, groceries, meals, doctor’s appointments, insurance, finances, laundry, and cleaning. If I’m not doing it, I’m the person making sure someone else is.
Since I’m not lifting and showering this person, my type of caregiving can seem invisible. I assure you, though, it shapes every day of my life. It drains the energy I need for my own relationships, career, appointments, errands, and home care. Life has changed for me. The scares, the hospitalizations—they weigh heavily. This isn’t a complaint—it’s a reality.
In the early years my own health declined, leaving me ill and disabled until I learned to include my care as a priority. While my body eventually healed, my emotional wellness remains taxed. Almost 12 years of being on high alert leaves me with a system that is ready for pretty much anything. I’m all adrenaline, all the time—which is its own challenge. I’m always checking for the lion chasing me, because it’s been there so many times before. These days, I run anxious.
I’m consistently surprised by how strongly I experience the weight of others’ judgment. My caregiving comes from a loving place, which introduces an extra layer of vulnerability. It’s taken years to realize how heavily the input of others—family members, friends, doctors, social workers—weighs upon me.
The suggestions cycle through: “You should hire a (fill in the blank). Try this treatment. These supplements. This diet.” I know they come from concern and good intention, but that is not always how they land. Sometimes it feels like people think I’m lacking in intelligence or imagination, when what I’m actually lacking is time, energy, options, and a willing patient. There are very few rocks I’ve left unturned at this point. When I once again receive the most basic advice, I suppress a knee-jerk reaction like, “Oh thank goodness you’re here! In all these years, I never thought of consulting an attorney!”
Full insight into my lived experience isn’t available to those who aren’t immersed in it. This is my life—not theory. It isn’t a sprint, it’s a marathon. The person I’m caring for is an adult, with preferences, strengths, and flaws. We can’t force anyone to live a particular way, even if we try. We all want as much self-determination as possible—including those who need care.
And when I do stand up and shout, “This is the hill I am willing to die on!”? Meh. Sometimes I win. Sometimes I lose. I’m not a monarch—I’m a caregiver.
These are the realities of my lived experience. And, in many ways, our shared experience. I, too, have limits, preferences, strengths, and flaws. I, too, crave self-determination and autonomy. I, too, am at the mercy of my partner within this caregiving relationship. I, too, need to be a priority. Caregiving relationships are unique and yet share traits with all others. Everyone needs a voice. Everyone needs to be realistic. Everyone feels put upon and shortchanged at times.
I remind myself daily—and want to offer to others—that I am equally deserving of care. Not in order to be a better caregiver. Just for myself. We are each worthy, all on our own.
Jackie Kelleher is the founder of Make It Grand. a woman-owned company offering products that celebrate and support new parents with humor and heart. She is also the author of Nurturing the Family: A Doula’s Guide for Supporting New Families
