caregiving interviews

Caregiving Book Series: Rima Pande, Author of His Voice

Rima Pande is based in Boston, Massachusetts. His Voice, the book by Rima, is a first-person narrative of her father’s thoughts and emotions during two years after he suffered two strokes within weeks of each other.

A healthcare strategy consultant by profession, she is a parent to three amazing people, enjoys unstructured and experimental cooking, and “maximum” travel. Straddling the two countries, one as a secondary caregiver (to her mother in Delhi) and a researcher and cheerleader (while in Boston), Rima advocates a framework that can help people in similar situations to prepare and care for their parents and family members.

In this interview, Rima takes us through her journey as a caregiver, how she straddled two worlds, how normal got redefined with a new language and these experiences led to a personal mission.

Rima, you turned around a very personal experience into a book. What motivated you to write this book?

My father had two successive strokes within a month, leaving him paralyzed neck down and unable to speak or communicate in any manner. For two years, my mother served him, supported by amazing family, friends and helpers. 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, trying to immerse myself in his stream of consciousness.

His Voice is a first-person narrative of my father’s unspoken thoughts and emotions during the two years he was bedridden, as he very thoughtfully dealt with a crisis where he has lost complete control of his life. The narrative of his current state is interspersed with memories of key life experiences that shaped him as a person, making it a memoir or life story of sorts.

Writing this book started a therapeutic experience for me, it helped me deal with a bunch of emotions that come with such life experiences – confusion, denial, hope, frustration, grief, regret. I really missed my father. His death, even though we had two years to “prepare”, created a giant vacuum in my life. I wrote the book a few months after we lost him, did not share the manuscript with anyone till 2020 when I drummed up the courage to have a few people read it, and hesitatingly decided to publish it.

During our call, you mentioned you are an only child and lived away in Boston. When you heard about your father’s first stroke, what went through your head?

The first stroke was a shock, and I flew to Delhi immediately. It was a huge relief to know that the impact was limited to his legs, and there was reasonable certainty that he would slowly regain movement. The second stroke, which happened within a few days after I had flown back to Boston, was devastating. I flew back with a sinking feeling in my heart – the mood had changed, the optimism had given way to a sense of gloom, terms like “quality of life” and “palliative care” were being whispered. I was in a state of denial, my brain refusing to accept that he may not be as lucky as he was with the first stroke. The moment he woke up and we realized how much damage the second stroke had done, my relief at his survival was tempered with a niggling sense of guilt – did we make the right decision to intervene aggressively and save his life? Had we consigned him to a tortuous existence?

Your father’s primary caregiver was your mother and she was supported by family, friends and others. How did you evolve your role and involvement during this time? Can you also tell us a little bit of the environment in Delhi and Boston?

My mother was the primary caregiver, supported by family and friends, mainly her siblings. I traveled back every two months or so for about three weeks at a time, taking a lot of time off work. I spent a longer time with them during the kids’ summer vacation since they went along with me.

My role was of a “secondary caregiver” – assisting, helping with thinking and planning, and support for the primary caregiver. I do believe that support for the primary caregiver, without judgement, is absolutely critical. We all have our own views about how things should be done, and while it is ok to share one’s thoughts, the person closest to a situation day in and day out needs to be fully empowered and made to feel comfortable that they are doing the right thing. I was also the “research assistant”, reading about his condition, medications, possible approaches to taking care of him, potential opportunities for innovative treatment, exploring clinical trials etc – not sure how much of it was useful, or just made me feel better.

The journey back to Boston each time was hard, accentuating the guilt considerably, and the only way I dealt with it was by planning my next trip pretty much as soon as I got back home. And by calling every day on my way to work to chat with my father (a one-sided conversation of course) and my mom.

A key challenge for me was finding the right balance between worrying about my father’s situation without it impacting the other people in my life, and continuing to give them full attention – household, kids, work. You can put your life on hold for short periods, but when it is uncertain how long a situation will last, you have to keep your “normal life” going. Normal does not seem so normal to you, and you expect your family will understand, support and pitch in, the reality is that life goes on – kids go to school, do homework and activities, etc. To me, going on a vacation we had promised them and planned was the hardest, but we did it. I was lucky to get a lot of their support when I needed it – my spouse would take care of everything while I was gone for weeks at a time, they came to India when my dad was first in the hospital, during vacation and then when he passed away. So, like many things in life, I maintained a delicate balance between the different aspects of my life. 

Caregiving is an emotional journey as much as it is a physically involved one. Did you lean into any groups, individuals or systems to support this journey for you? In the US and also in India.

Caregiving comes with a multitude of physical, mental and emotional challenges. The mental load comes in many forms – the constant thinking, planning, anxiety; the need to stay strong and happy, not express grief and sorrow, to keep the patient’s emotions positive and tamp down the helplessness one feels at not being able to fix things; the additional pressure of being the main advocate for the patient. Through those two years, I was very concerned about my mother who, as the primary caregiver, was carrying this burden.

I had a strong support system. My husband took care of everything when I traveled. My kids independently managed when I was gone and went with me to help during two summer vacations. My extended family and friends, many of whom I knew I could call if I needed help, were there for me. Sometimes knowing that is enough.

Personally, for me, as I mentioned, it was an emotional roller-coaster. Regret was a large component of my thought process – regret for everything I had not done, regret at not knowing my father better as a person vs just a parent, regret at some of the decisions we made when the crisis hit. And I felt very alone, unable to express myself, frustrated by the cliched responses and advice I got every time I spoke to anyone, increasingly internalizing my emotions since I felt no one really understood how I felt.

So, I did not lean on any individual or group for support – even when the suggestion crossed my mind, I shrugged it off. The thought of delving into my personal thoughts was too overwhelming for me. I do think that writing this book was personal therapy in a way, my way of connecting with my father.

You advocate for a 3R framework for caregiving  – Respect, Resilience and Realism on the foundation of Relationships. Can you break it down?

The 3R framework emerged naturally from my observations and learnings from my father’s and other experiences. In summary, there are 3 key pillars/ tenets of caregiving  – Respect, Resilience, Realism, built on a foundation of a fourth R – Relationships.

First and foremost, respect. Paul Kalanithi in his book “Till Breath Becomes Air” said “until I actually die, I am still living”  – As a person becomes more helpless, their sensitivity to everything said and done becomes more acute.

One of my key learnings was how important it is to maintain the dignity of a person who is in a helpless state. My mother set a positive, respectful, uplifting, happy tone in the house for my father. He was surrounded by people, music, conversation – what my book editor calls the “circle of love and care”. We all gathered in his room, for tea, for conversations. He was part of everything that happened, treated with deep love and respect. I believe that made him as happy as was possible given the circumstances. 

Resilience – is about working with what life throws at us without breaking down. It takes an immense reservoir of courage and compassion to stay calm when your world is falling apart. It takes a lot of resilience to be loving and unfailingly patient, without it becoming deliberate or wearying. We have to find our strength in the way it works best for us. My mother was driven by her faith in god, her belief system “whatever happens happens for a reason, god’s will” … Her faith gave her physical, emotional, mental energy.

We also need a dose of realism, understanding that effort may not always yield the results one hopes for, while not giving up. We cannot fix everything, sometimes we need to manage it to the best of our abilities, while balancing hope and optimism. As the Gita says “Karmanyev adhikar asthe, ma phaleshu kadachana”

And there is Relationships – spousal commitment, the parent-child bond, family support, the many circles of friends. In the book Blue Zones, Dan Buettner explores the eating and lifestyles of the world’s healthiest communities. In addition to diet and staying active, one of the common threads among all these communities is a strong social fabric and sense of connectedness among inhabitants.

Medical crises make one more acutely aware of the invisible bond that connects families even as everyone leads separate and often geographically scattered lives, and the links one has within one’s local communities as neighbors, and people one least expected are there for you. It also highlights the importance of nurturing and maintaining family and community relationships. My mom was able to do what she did because she had her family’s, especially her sibling’s physical and emotional support through her caregiving journey – as well as moral and emotional support from neighbors and friends.

Your mother. If it is okay, can you tell us a little bit about how she dealt with the illness and also how your relationship with her has evolved through this experience?

My mother immediately took full ownership of the situation. As we mentally adjusted to the situation and started planning my father’s transition back home, she dealt with everything required for physical care – room set up, equipment, hiring staff, planning his daily schedule, medicines, therapy etc. More importantly. as I mentioned earlier, she created a happy environment. She talked to him naturally, always involved him, asked his opinion, held his hand, comforted him physically, always calm and happy and encouraging. And everyone, including me, naturally absorbed her approach and followed suit. My father was physically well taken care of, mentally stimulated, and emotionally nurtured.

Ironically, while I was emotionally vulnerable, my mother was my strongest support system, mainly by virtue of how she handled things, leading by example, never making me feel guilty for not being there for her all the time, and giving me strength and confidence.

I developed a new-found appreciation for her self-discipline, her unwavering focus, her positivity and her faith in God. I saw her vulnerabilities closely, but also admired how she managed them, and kept going. I learnt to be more patient with her, see things from different points of view, and be more tolerant of different ways of thinking. Our common grief and sense of mutual understanding and respect brought us closer.

Where does this journey take you next?

The book, His Voice, takes the reader on a journey through a person’s mind as he silently battles complete helplessness. It is also an interesting life story.

I am sharing my father’s story for two reasons: One, nothing resonates like a story, which makes a reader imagine parallels in their own life and relationships. I hope the book 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.

I hope this book will help anyone who has gone through, is currently going through or may face crisis situations, which unfortunately many of us do and are very unprepared for. And remember what Paul Kalanithi said, “Until I actually die, I am living.” Or simply, appreciate what they have. 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.

His Voice, a book by Rima Pande

You can buy His Voice at Amazon US, Amazon India, and Crossword India. You can connect with Rima here.

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