Her Father's Voice

Rima Pande spent two years trying to figure out her father's mind and unspoken words after a stroke he suffered. She shares excerpts from a book she wrote about it and urges children to connect with their parents more often than they do.

"Two years ago, the temporary short-circuiting in my head took on a monstrous new mutation. My mind was zapped in one wanton episode, leaving my legs useless. Another event followed within a few weeks, detaching all connections between my mind and body. My mind no longer controls my body; everyone else around me does. And every thought I have had in the past two years has stayed in my head, unable to be uttered. I have tried. Very hard. For nineteen years, I lived with the uncertainty of mini seizures that created havoc in my mind. And for the past two years, I have been helplessly paralysed. Now I am tired. I am ready to move on. There is no fear, panic, or regret, just a sense of peace, finality, and withdrawal. Every actor has an exit cue. The show goes on, but actors with no role cannot sit on the stage forever. They get in the way of life."

A few years ago, my father suffered two strokes within a few weeks of each other. The second left him paralysed and unable to speak or communicate. In the two years he lived after that, he was physically well taken care of, mentally stimulated and emotionally nurtured. My mother created a positive and normal environment where he was as happy as possible, given the situation. 

We stared at the constantly changing expressions on his face for clues. I often wondered what was going through his mind and how he was calmly dealing with this monumental crisis. So I tried to immerse myself in his stream of consciousness - and started writing a "diary" on his behalf. 

His Voice is a simple, conversational, lightly written first-person narrative. It is my interpretation of my father's unspoken thoughts, emotions and key life experiences during the two years he lived after the strokes. 

"There are 4 types of people in the world - those that have been caregivers, those that are caregivers, those that will be caregivers, and those that will need caregivers" - Rosalyn Carter.

Storytelling in healthcare can be powerful, empowering and transformative for caregivers. Sharing lived experiences lifts and energises us as we face our life crises, overwhelmed with the physical, mental and emotional challenges such situations bring. It makes the journey less lonely. We feel part of a community. We feel heard. We learn from each other. Sharing the burden lightens the weight. We find strength, sometimes inspiration, and we surprise ourselves when we realise that joy is always an option. In fact, it is not just an option. It is an essential component of caregiving that can transform our experience. 

I have distilled my learnings into what I call the 3R framework of caregiving - Respect, Resilience, and Realism. My experience with my father taught me how important it is to maintain the dignity of someone as they become less able and their world shrinks around them; how comfort and quality of life are critical to well-being. It taught me how each of us has to find our own reservoir of courage - through prayer, walks, cooking, shopping or conversation. I learnt to be realistic and to balance hope and effort with the reality that things don't always get better - we have to do our best and accept what we cannot control. 

In addition to the caregiver, we must consider the challenges associated with ageing, disability and palliative care from a patient's perspective, prioritising their needs, wants and decisions to the best of our ability. We naturally want to fix every problem and tackle every situation with whatever medical means available. However, let's always pause and think through long-term implications, unintended consequences and impact on a person's comfort and quality of life. His Voice is not just my father's voice but the voice of many - I speak for him and every patient to amplify the conversation on caregiver support and palliative care systems. 

"I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life" – Maya Angelou

I was on an emotional roller coaster when my father was paralysed and unable to speak - grief and anxiety that I could not fully express, anguish, worry, helplessness, and the pressure to stay strong and happy. I struggled to balance worrying about my father's situation and living my "normal" life. Regret was a large component of my thought process - for everything I had not done, for not knowing my father better as a person. And there was a constant feeling of guilt, amplified due to me not being there all the time for my parents when they needed me the most. Even though we had two years to "prepare", my father's death created a giant vacuum in my life. I continued writing his "diary". 

I asked myself many questions when a crisis hit - but it was too late. So I am sharing my father's story to encourage you to pause and reflect on your relationships with your own family, friends and communities. Please call your parents. Don't take them for granted, don't wait, don't hesitate, don't postpone, don't judge, just call. Call them today - and listen. And be there when they need you, and sometimes even when they don't. 

All photographs courtesy Rima Pande

Did you connect with Rima's story? What have been the emotions you've experienced in your caregiving journey? Share your thoughts with us in the comments below.