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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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The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting. You can subscribe here.

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interviews

Book Challenge Series: Neelum Saran Gour

Interview with author Neelum Saran Gour, on her body of work over four decades.

Neelum Saran Gour is an accomplished Indian English writer of fiction that depicts North India’s small towns and their cultural histories. Born in Allahabad, Neelum is the child of a Bengali mother and a Hindiphone father and was exposed to an array of languages and cultural influences in her childhood. She has a long association with Allahabad University and retired as a Professor of English Literature two years ago.

Neelum is the author of five novels, four collections of short stories and one work of literary non-fiction. She has edited a pictorial volume on the history and culture of the city of Allahabad, where she lives and works, and has also translated one of her early novels into Hindi.

In this interview, we explore how Neelum’s childhood of a make-believe world led to a lifelong pursuit and passion for writing, and how different phases in life have and continue to shape her work.


The “inside-outside paradox of good writing”. What is it? Can you elaborate on this part?

Being an insider to the stories one tells is the very core of writing, even when one seems to be looking on as a witness, as someone who is viewing people, experiences and events from the outside. When you tell someone’s story from the inside you don’t necessarily have to be telling your own story in inverted or reshuffled form.  All it means is that you have to temporarily suspend your own self and become someone else, rather like an actor does. This involves imagination, of course, and above all empathy.

During the course of our growth as writers we all develop our individual authorial voice, something special to us, just as our individual perception and the slant of our life-view is. But equally important for the writer is the art of disappearing as a substantial presence and allowing his or her characters to find embodiment and manifest in as palpable a form as possible.

This is the inside-outside paradox of good writing – using your own vision and voice but staying as invisible as possible. It is in this sense that a writer is an insider to the stories he or she writes.

You have always been a storyteller, and enjoyed writing since the age of six. Your debut collection was launched in 1993 by Penguin India, and you have never looked back since. Could you recall the journey leading to that first book, Grey Pigeon and Other Stories? Did you feel a sense of accomplishment?

Yes, it’s been a memorable and meaningful journey. As I said, I started writing as a small child. I was an only child, with working parents, so I was left alone to read and amuse myself in my own way, though there were nice and caring aunts and uncles around and also a very loving granny. But I loved my own company as much as theirs. Reading opened up worlds distant and interesting, characters who became close friends, episodes which my mind lived with personal intensity. I lived in a make-believe world, with imaginary friends. Even my dolls and pets were characters with a complex, happening life. All this meant a rich and eventful inner life which effortlessly found expression in poems and stories. My parents were appreciative and encouraging and so were some of my teachers. That was important because I wrote in a very enabling climate. So, a sort of mini-identity as a writer had started forming around me even as a school-kid. I wrote plays for our school’s puppet theatre, playlets for school functions and stories and poems all the time. By the time I was in university I had made up my mind to devote my life to the world of letters, unlike many of my friends who went in for the civil services, banking, medicine, and positions in the corporate world. I found myself teaching literature in my university and although I wandered into the academic life by chance not choice, I loved it. I had by then given up writing poetry because fiction attracted me more and I didn’t like my own poems any more. In those days there was a vibrant magazine scene. I began sending my stories to magazines, typing them out at my portable Remington typewriter, making three carbon copies, and sending them by post. So many came back with a polite rejection but a few were accepted. There were some hurdles. I had to make time for my writing in the hurly-burly of child-rearing and home-making and preparing lectures and teaching and also working on my Ph.D. My husband lived in Kanpur and I used to travel weekly to-and-fro between my city Allahabad and Kanpur and I found the four-hour long train journey particularly meaningful. It allowed me time to think, to be by myself but it also brought me in contact with lots of interesting travelling companions. Those days – I speak of the 1980s – people struck up conversations with fellow passengers in trains and spoke without inhibition about their lives with total strangers – precisely because they were strangers. I found this almost decade long travelling experience very enriching. I did a lot of my reading, both for my Ph.D. and for my creative writing, on the weekly train journey between Allahabad and Kanpur. I love the bookstalls on railway station platforms because I have memories of standing in front of their display, poring over magazines and choosing those which carried stories.

Writing, at this stage in my life, had peculiar challenges. With toddlers bent on tearing my typed pages out of the typewriter, I discovered that typing standing up with the typewriter placed on top of my medium sized fridge wasn’t too difficult, so I did a lot of work that way. Also, reading while pacing up and down the length of my room kept the child from pouncing playfully on my books. I kept a notebook in the kitchen and while I worked my mind was busy elsewhere and I frequently jotted down ideas and promising lines or phrases.

In fact, I have always had a parallel current of ideation going on in my head alongside the immediate thought processes involved with the business in hand. So, my writing is a constant thing, keeping pace with the rest of my life, even when I am not physically writing. This parallel interior life has been my constant alternative mode of being. It has been my retreat in times of personal pain and stress. It has been my reserve of fortifying energy when life has been hard. To return to my journey, my first stories appeared in various magazines and then something remarkable happened.

Penguin India had just opened its office in Delhi and their dynamic young CEO, David Davidar, happened to pick up a magazine that happened to carry a story of mine. I received a letter care of my university address. It said that he had read my story with interest and asked if I had any more stories and whether he could consider them for publication. The rest of my writerly journey is history for me. I wrote back that of course I had a bunch of stories and I would be delighted to submit them for his perusal. That was my first book, “Grey Pigeon and Other Stories”. Did I have a sense of accomplishment? No, I had a sense of sheer magic happening in my life. This magic has happened repeatedly in my writing life.

As though my very intensity of engagement in my art has generated positive forces that have taken charge of my destiny. Penguin signed up book after book, after that very first one, and I found myself growing in confidence and stature as my books received appreciative reviews and a small circle of loyal readers began developing.

You have balanced a full-time career, family commitments (particularly as the primary caregiver for children and older members of the family) and continued with your passion for writing uninterrupted. It takes a lot of hard work, focus and discipline to accomplish them. What are some lessons along the way, particularly for women with similar commitments today?

I managed to balance a job, constant travelling, family responsibilities and writing only because I entered into each item of my work with a sort of naïve enthusiasm and a sort of bouncy optimism which many people found unsavvy and even unrealistic. I do not doubt their practical wisdom and I still don’t have any cut-and-dried formula for achieving this balance. But I believed I would pull it off and it happened. My books got written, my teaching got done. My parents were an enormous help with my kids and my husband was extremely supportive. This was in the initial period. Later, when my parents grew older and my husband developed certain health issues, it was my turn to take over the steering wheel.

I was lucky and maybe there was some divine help for me because things always turned out well sooner or later. Cliches like ‘believing in yourself’ and ‘the universe conspires to help you’ might have been reduced to platitude with over-usage so I am wary of using them but I plunged into the work in hand with full, uncynical commitment and I wasn’t disappointed. That’s been the main lesson I’ve learnt on the job.

In fact, a stage has come when I don’t have to chase anything. I do my job to the best of my ability and things happen, offers come. For books, films, theatre adaptations of my books. There’s a sense of the miraculous in it all. But this is after four decades of intense engagement.

Talking about nostalgia for the city you live in, Prayagraj (and until recently, Allahabad), you said only retired people recall its cultural history and roots, and that you write to “keep time alive”. Do you think cities still offer a canvas for more creative writing? Do you have a favourite among books set in urban India?

By now my city, Allahabad as it was called till recently, and my personal identity have converged. Because so many – though not all – of my books are framed in the location of this city and its former rich cosmopolitan personality. And when I use the word ‘former’ I usher in the nostalgia factor and the action of memory.

We in our silver decade carry such a wealth of detail about a world which is receding into the past or has already vanished except in our collective recall. This is a genuine advantage which writers in their senior years enjoy. We have a many-layered past to source our inspiration and we have a like-minded readership out there because there is nothing quite so heart-warming as shared memories of a lost world.

That accounts for the proliferation of nostalgia sites on social media. To remember together is like breathing life into empowering dimensions of our dormant inner worlds. To revive things and ideas of value is to enhance the tone of the present. I enjoy the present with all its technology-enabled augmentation of our horizons but it is the past which gives depth and perspective to the totality of my experience. And I imagine that this is true of many senior persons. Those who pick up the pen to mine the rich veins of their past recall give the panorama of their life’s solidity and permanence. A very satisfying achievement, even if it is not done for commercial gain or mainstream recognition. I have several friends who write wonderful vignettes of the life left behind, or memoirs of eventful careers on social media and readers find their own memories resonating in shared pleasure. The worlds we build through our interactive recall give comfort and joy and companionship and also precious insights into life. Cities with individual cultural personalities provide a psychological location, a context in which multiple memories can collaborate and orchestrate and that which has changed and is lost can activate again, unlocking doors to the vitality we once possessed and which we might still summon up under the creative pressure of collective memory. But a correction in the phrasing of your question: it isn’t just retired and elderly people who are involved in the cultural history of my city. Scores of young people have formed heritage societies and conservation and culture-intensive groups and online sites and it is refreshing to see how a city’s essential identity can reincarnate through their explorations. My all- time favourite book of fiction written in English, set in an urban milieu, has to be ‘A Suitable Boy’.

The Book Challenge is for aspiring first-time authors over 50 years. If you were to challenge yourself to something new, what would it be?

If I were to challenge myself to undertake something new it would be film-making. My novels move in cinematic mode, as it is, so it would be fascinating to tell stories in a medium which offers such exciting possibilities.

You can buy Neelum’s books on Amazon and Flipkart. To know more about Neelum, and her body of work, please visit her website.


Silver Angels Newsletter

The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting. You can subscribe here.

Categories
interviews

Book Challenge Series: Ambi Parameswaran

Interview with Ambi Parameswaran, on his journey as an author.

Ambi M G Parameswaran is a Brand Coach, Brand Strategist and Founder Brand-Building.com a Brand Advisory. In a career spanning 40 years Ambi has handled assignments in marketing, sales and advertising with leading brands, and served as VP, then as ED & CEO of FCB Ulka from 2003 to 2013. He received the Distinguished Alumnus Award from IITM in April 2009 and from IIMC in November 2018. He has a PhD from Mumbai University, an AMP from Harvard Business School  and CEO Coaching Certification from CFI. Apart from writing for business publications, Ambi offers branding workshops and is an Adjunct Professor of Marketing at SPJIMR and a guest faculty at IIMC, IIMA, MICA and ISB.

Ambi has ten books to his credit, and wrote his first book in his early forties while he was in the thick of his professional career. He was also one of the earliest to recognize the importance of the silver generation, in this 2016 article in HT Mint.

In this short interview, Ambi provides his view as a published author, and the journey so far.


Ambi, you have published ten books. Do you have a favourite when you look back at your authorship?

All my books are precious for me and that is what any author would say. Having said that, I think Nawabs Nudes Noodles – India Through 50 Years of Advertising has had the maximum impact and I have heard people describe it as a ‘must read’.

You have always been a writer as I understand but what made you write your first book?

I stumbled into writing in 1998 when I was teaching Advertising and Brand Management at NMIMS. I needed case studies and found that the long form Harvard cases were not easily accessible and hence I started writing short cases on brands from FCB Ulka’s portfolio. That became my first book ‘FCB Ulka Brand Building Advertising – Concepts & Cases’. It came out in 2000 and was reprinted several times.

Your writing career seems as intense as your full-time professional career. What was different in these journeys? How did you balance it?

My first book did well and that led to my second and third books. I had a full time job but I was also a guest faculty at B Schools. I had a discipline of spending at least a few hours each weekend writing. Each book takes one year of research and one year of writing.

You probably get a lot of people reaching out to you about writing a book. What are your top three suggestions to them?

I think everyone has at least one book inside him or her.

My first suggestion is to anyone wanting to write a book is to start writing. Write essays. Write articles. As you get to write you will realise what works for you. It is foolhardy to say I will write a book if you have not done the job of writing articles or essays [in the case of fiction may be short stories]. Once you have an idea for a book then you need to put a structure to it and then write. Get into a rhythm. Write every day. Or write every weekend.”

You said, “to write, you need to read a lot”, during our brief telephone chat. Is there more that one has to invest in becoming a good writer?

I think to become a good writer you need to know what is out there. So you need to read a lot. For example every book I write is inspired by the books I have read on the subject. I also read a lot of articles as a stepping stone to my writing journey. If you don’t read then don’t try to write.

Ambi, you are on Twitter, and engage with brands and individuals quite actively. I find some of those discussions very fascinating. Does it shape your thinking when you write a book now?

Twitter, used well, can be a great way to learn new things. So when I read something interesting I try and share it on Twitter asking people to comment. And sometimes that leads to an interesting discussion among informed people. When I spot something interesting I try to retweet with my own two bits. I have noticed that when I criticize a brand or an ad that gets higher traction due to the nature of the beast. But try to steer clear of toxic subjects.

All your books are non-fiction. Would you ever write fiction?

My next book is also non-fiction but I am trying a different approach. Let us see how that performs. Writing pure fiction is beyond me.

You can check out Ambi’s books on Amazon and Flipkart, and catch him on Twitter.

Ambi has opened a window into Indian advertising with his epic book – Nawabs Nudes Noodles. He’s on his way to making leadership lessons accessible to the general reader with a series of anecdote rich, shorter books on management.

Anish Chandy, Founder, Labyrinth Literary Agency

Silver Angels Newsletter

The Silver Angels newsletter brings you news, stories and trends from the silver economy in India, in a short, easy-to-read format. Businesses, brands, investors, startups, researchers and analysts following this space are likely to find it interesting. You can subscribe here.