The dreaded call came at 3:45 am.
I jumped, my heart beginning to race and thud at the same time, groping 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,” the quiet voice responded.
A few years ago, my father suffered two strokes within a few weeks of each other, the second leaving him paralyzed neck down and unable to speak or communicate in any manner. During the two years he lived after that, 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.
During this period, I learned the three tenets of caregiving — respect, resilience, realism — up close. I hope this 3R framework will empower folks when faced with a healthcare crisis, from near or afar. Caregiving is hard and being far away adds another layer of complexity compounded with amplified guilt. We need to model respect for the patient and their primary caregivers, stay resilient and be realistic – provide as much support as we can, and do our best.
While in Delhi, I played the role of secondary caregiver, helping out as much as possible. When in Boston, I stayed connected as a long-distance caregiver, continued to be the research assistant and cheerleader, bridging the geographic distance by talking to my father (a monolog) and mother every day as I drove to work. In either location, my main focus was making my mother feel empowered and confident, 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 over 30 million overseas Indians working and building new lives outside of India, of whom roughly 5 million are in the US. A large number 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 breaks 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 — regret for everything I had not done, regret at not knowing my father better as a person vs in 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, attentive, 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, how he was calmly dealing with this monumental crisis, trying 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 of my father’s, or rather my interpretation of his unspoken thoughts, emotions, and key life experiences. As I distilled my learnings and observations, a 3R Framework of Caregiving emerged — Respect, Resilience, and Realism.
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 3R 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, caregiving, 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.