The dreaded call came at 3:45 am. I jumped; my heart began to race and thud at the same time. I groped for my phone in the dark. “He had another stroke today and is back in the ICU,” said a voice.
“Should I come back?” I asked, voice trembling.
“Don’t panic, but yes, as soon as possible.”
A few years ago, my father suffered two strokes within a few weeks of each other, the second leaving him paralyzed neck down. He was unable to speak or communicate in any manner. During those two years after his strokes, my mother was his primary caregiver, supported by helpers, family, and friends. I traveled back and forth from Boston to Delhi every couple of months, spending three weeks at a time, a little longer over two summers when my kids went with me. While in Delhi, I played the role of secondary caregiver, helping as much as possible. When in Boston, I continued to be the research assistant and cheerleader, bridging the geographic distance by talking to my father (a monologue) and mother every day as I drove to work. In either location, my main focus was making my mother feel empowered and confident and keeping her spirits up, helping her make decisions without pushing my own ideas forcefully. When my father passed away, I was lucky to be able to say goodbye over the phone and be in India for his last rites.
According to the Ministry of External Affairs, there are more than 30 million NRIs working and building new lives outside of India, and there are roughly 4.5 million Indian diaspora in the US. A large number of the diaspora have aging parents back home. Aging parents whose lives gradually get harder as extended family drifts, social circles shrink, physical abilities decline, health deteriorates, and independent living requires significant scaffolding. This delicate balance gives way when an acute health crisis happens.
Caregiving comes with a multitude of physical, mental, and emotional challenges. Grief and anxiety that cannot be fully expressed, anguish, worry, helplessness, the pressure to stay strong and happy. I struggled with finding the right balance between worrying about my father’s situation and continuing to live my “normal” life while in Boston — work, home, kids, vacations. It was hard to travel back each time, and I dealt with it by planning my next visit to Delhi as soon as I landed in Boston. On this emotional roller-coaster, regret was a large component of my thought process — regret at everything I had not done, regret at not knowing my father better as a person versus his role as a parent, regret at some of the decisions we made when the crisis hit. And there was a constant feeling of guilt, amplified by the overwhelming regret of not being there all the time for my parents when they needed me the most.
Was this situation ideal? No, it wasn’t. Was my contribution sufficient? Probably not. Was it the best I could do, given other aspects of my life? It probably was.
My father was physically well taken care of, mentally stimulated, and emotionally nurtured. My mother led by example to create an environment where he was as happy as he could possibly be, given the situation. We stared at the constantly changing expressions on his face for clues — was he too hot, too cold, in pain, hungry, uncomfortable, tired, sleepy, somewhat happy? We searched for direction, pretending to understand what he would like us to do, doing it, then searching for an imperceptible nod of approval. When he slept, I wondered what was going through his mind and how he was calmly dealing with this monumental crisis. I tried to immerse myself in his stream of consciousness.
My father’s death, even though we had two years to “prepare,” created a giant vacuum in my life. I started writing a first-person narrative from my father’s perspective, or rather my interpretation of his unspoken thoughts, emotions, and key life experiences. As I distilled my learnings and observations, a 4R Framework of Caregiving emerged — Respect, Resilience, and Realism, on a foundation of Relationships. What began as a therapeutic experience evolved into a book, in which I am sharing my father’s story for two reasons: One, I hope it will help folks pause and reflect on the 4R framework which highlights the key tenets that one needs to keep in mind when faced with a healthcare crisis, from near or afar. And remember what Paul Kalanithi said, “Until I actually die, I am living.” Two, I am on a personal mission to draw attention to the challenges associated with aging, disability, and caregiving, from a patient’s perspective — and advocate for discussion on palliative care and caregiver support systems.
Rima Pande is a healthcare strategy consultant based in Boston, with a strong passion for human-centered healthcare, nutrition, and equitable socio-economic development. Rima has recently published a book titled His Voice, a journey through her father’s mind to share his unspoken thoughts and emotions during two years he was paralyzed and unable to speak after a stroke. She enjoys parenting three amazing kids, unstructured cooking, and “maximum” travel. For more information on the book, author, buying options, news, and events, please visit https://www.hisvoice.life/