(by Justin Peterson, PGY-3)
“Mwaramutse!” she says, beaming, with a gentle smile enveloping her age weathered face. Her outfit, like the previous few days this week, was a vivacious emerald-yellow dress, a geometric impossibility that ebbed and flowed into and out of the wrinkles and waves of hand-woven fabric. She is the mother and sole caregiver of one of the patients in Ward 4; her daughter is a young bedbound female, unfortunately robbed of an adulthood free from disability. Each morning, walking into my hospital block I was rotating through at The University Teaching Hospital of Kigali (CHUK) in Rwanda, I was often greeted with new and familiar faces, from patients and families alike. This woman, *Silvie (name changed), fell into the latter category, a constant in an ever-changing environment.
Many months ago, her daughter had fallen ill. While no conclusive diagnosis had been made, the plausible and leading diagnosis for her daughter had been meningoencephalitis, complicated by seizures. The illness had been devastating; the toll proved permanent. Whatever hopes and dreams the two of them had would be altered, their relationship roles revised, and their futures now uncertain.
Being a caregiver for the patients at CHUK often involved staying bedside for the length of the hospitalization. Unlike the States, where patients are not billed until after their hospitalization (I believe, anyways, still not entirely sure how that works), patients at CHUK must pay in real time for services such as labs, imaging, and medications. Thus, having a caregiver around is almost a necessity. However, I don’t think it’s the payment possibilities that kept the caregivers around ipso facto by the way they were often there around the clock, long after the window for routine services has closed. No, if I were a betting man, I think it would be better explained by the love and human connection I witnessed day in and day out. Maybe it’s the potential payment for a chemistry panel that keeps them bedside in the morning, but it’s the love for their family and friends that keep them long after the Rwandan sun has set.
Silvie points to her legs. I’ve watched them swell over capacity over the last few weeks. Her interstitium weeps and fills. I’m reminded of lessons in my early days of med school, diagramming a simplistic vessel with opposing arrows, labeling hydrostatic forces and oncotic pressures. I debate which color best illustrates capillary permeability. On the side, I leave room for lymphatic obstruction. I come back to the room and offer a smile that I hope extends both empathy and sympathy. She asks me if I have any medications to help. Like yesterday and the day before, I tell her I’m fresh out. I smile and pat my pockets with a head shake. She laughs and tells me not to forget tomorrow.
The weeks pass and her legs grow. One morning, I watch as she combs her daughters hair. Other days I watch her talk to her daughter in their native tongue, knowing there will be no response, but hoping there is still some registration. I encourage her. I know this patient is still and will always be her daughter. She doesn’t need to hear it from me but I tell her to talk to her as if she’s listening. Who’s to say otherwise?
Another morning the resident I work with debrides a small amount of tissue from her daughter. She has pressure ulcers of the highest stage. I find myself in a moment of sad irony that her daughter’s legs lose mass as her mother’s legs grow. Caregivers often carry a burden we spend little time thinking about; I wondered if her bedside edema was meant to grab our attention, a cross she bears because she can’t bring herself to leave her daughter. In med school you can learn as much as you want about the oncotic and hydrostatic pressures but it’s in the hospital you realize that when someone’s heart is completely full, the overflow has nowhere left to go but to their legs.