Growing up with chronically ailing parents

From a young age, my mother's slowly failing health has familiarised me up-close with the morbid tapestry of our medical facilities. There were vulnerable moments when I dreaded losing my parent and afterwards, indescribable gratitude to see her pull through, no matter how battered the process had left us all. Each visit to the doctor reaffirmed that my mother would have to depend on heavy medication and coexist with her illnesses all her life.

We learn to pick up gradual inklings of empathy and sense of responsibility from our parents in due course of life. However, for individuals who have witnessed their parents battle with illnesses from an early age, the road to assuming guardianship and emotional maturity arrives sooner than they even reach milestones of adulthood.

"My mother had suffered a heart attack and subsequent renal failure few years ago.  She spent several days in the ICU," says Zarin Nuha, a first-year student at Lalmatia Mohila College.

"After she came home, my younger brother and I were sent away to live with a relative because my mother's fragile state would have been too traumatic for us. Ammu was unable to speak for a long time. My khalamoni took on the role of her caregiver," Nuha recalls.

Muslima Jannat Eva, who is currently taking a gap year after completing HSC, talks about helping her mother perform day-to-day tasks after a surgery had left her bedridden. She says, "The most difficult part of it all was that I felt like I could never do enough to lessen my parent's suffering."

This reversal of roles often requires young adults to forego their plans to accommodate choices they are morally obligated to make. Undertaking these duties takes its toll on youths trying to strike a balance between pursuing their aspirations and supporting their parents through health scares.

Growing up, I myself have had a hard time sharing how emotionally exhausting my mother's ailment has been on me. I was held back by moral predicaments. Wouldn't it be selfish to talk about my mental hardships when my mother was grappling with agonising physiological diseases? To an extent, I avoided oversharing vulnerable details to people who were not in my shoes.

Bouts of jealousy that arose from watching my peers enjoy life with their parents in ways I couldn't would sometimes lead to exchanges of harsh words with my parents. None of us meant what we said but the impact of our words dented our relationship and left us feeling guilty in the aftermath.

When young people bottle up their emotions, they might begin compartmentalising to cope. On one hand, they are consciously making choices that gravitate towards what's best for their ill parent's prognosis. On the other hand, they build emotional walls to obstruct themselves from feeling the ripple of their circumstances too deeply.

Their woes are further compounded by our dilapidated healthcare system that leaves young people powerless when they seek out medical care for their parents.

According to a 2020 study by the Health Economics Unit under Health Ministry, Bangladesh records 68.4 percent out-of-pocket medical expenses in absence of a reliable universal health coverage. Only 3 percent of patients receive medicines from government hospitals.

Private facilities and consultations, diagnostics and medicines require patients to spend exorbitant amount of money. Doctor absenteeism, shortage of capable doctors and manpower, unmonitored medical facilities, counterfeit pharmaceuticals and lack of robust emergency services make things worse.

Azreen Maliha*, a freshman at the University of Technology Malaysia says, "I realized when my father got sick that you need to be personally acquainted with someone in the medical sector to get your loved ones timely treated. Those who do not have connections to fall back on can get caught up in the inefficient and lengthy workings of our medical services."

The lack of transparency and accountability in our healthcare and absence of codified laws against medical malpractices continue to put families through sufferings with no reprieve in the aftermath.

"My father was admitted in the ICU at a reputed private hospital after a road accident. My family was deliberately misled into thinking, by the doctors and surgeons in charge, that my father's spinal cord injury was inoperable. Had we not transferred him urgently to a better medical facility, this misdiagnosis could've cost him his life," recounts Rameesa Jameel, an undergraduate student at North South University.

"What my family discovered later is that the hospital simply lacked the surgical equipment, facilities, and expertise required to conduct the surgery in question. The doctors purposely withheld the true reason, jeopardising my father's chances of receiving adequate care coming out of a near-fatal accident. The negligence on the part of the doctors caused a setback which further aggravated my father's injuries and eventually resulted in him becoming paralysed post-surgery."

Witnessing a parent battle with diseases is a heavy cross to bear. Children need assurance to open up about their emotional struggles while parents need to be upfront about what is expected of them during medical emergencies.

As my mother says, parents don't expect their children to jeopardise their dreams and go to extreme lengths to care for them. They just want love and support in any form their children can provide. It's important to savour small moments of joy and keep patience during hard times.

*Names have been changed upon request

Nuzha forgives people for pronouncing her name wrong and wallows in books and anxiety. Suggest her fiction at nuzhaoishee1256504@gmail.com