Caring for our hero

I once read a quote that ‘Fathers are the most ordinary men turned into heroes’. Our father was that hero for my sister, Toral, and I — fulfilling every wish, raising us as his princesses, without a care for what the world would say or think. In fact, both our parents — Pradeep and Hemangini — raised us in a liberal and happy environment, giving us the best upbringing possible. Perhaps, they were subconsciously preparing us for our uncertain future.

I vividly remember, I was in Class XII when at a wedding my father suddenly had trouble walking. Soon after, we realised he needed a knee replacement surgery. The man who walked several miles a day suddenly slowed down. And in our hunt for an orthopaedic surgeon, in 2004, we discovered that my father might have a movement disorder. At first, he was diagnosed with Parkinson’s. During the next few years, his symptoms progressed — we eventually got the correct diagnosis in 2012.

What our father had was not typical Parkinson’s, but a type of Atypical Parkinsonism — a rare neurodegenerative disorder called progressive supranuclear palsy (PSP). It started affecting his movement, vision, speech and swallowing; eventually setting in dependency. Our hero was confined first to the house, and then to a bed in the last five years of his illness.

It was heart-breaking to see a man who would always cheer up his daughters in times of any crisis — “what are you worrying for, your father will take care of everything” — struggle to do even the basic daily chores.

My mother, sister and I collectively became his caregivers. My sister took care of the finances. And together, we started helping mom with the caregiving duties at home. We took turns among the three of us as his caregivers, trying to find a balance in life. But it all started getting harder as his disease progressed and he grew more and more dependent.

As difficult as it was to be a caregiver, for us, it was also incredibly fulfilling. People call it a sacrifice we make for our loved ones. But I personally feel the word ‘sacrifice’ is very loosely used to make a life choice look heroic, or at the least sympathetic. I did not make a sacrifice for my father. I can surely say the same for my sister too. We chose to stay with our parents, making some different, even difficult, life choices. But we refuse to belittle our love for our parents, calling it a sacrifice.

Would life have been different had our family not been struck with the tornado that PSP feels like? Of course!

But having been dealt a tough hand by life, if we had to see a silver lining, I would say PSP gave us some of the most precious memories with our dad. My sister and he had a music hour every night, when he miraculously would speak more clearly — and be himself.

Even when his speech was becoming difficult to understand, we had our quiet moments of joy, making sure we said our ‘I love yous’, throwing in a comforting hug or kiss when we could. No matter how traumatic it is to see your parent slowly become an unrecognisable version of themselves (which is exactly how it feels like what PSP does to your loved ones), I strongly believe it brought us closer as a family. I guess that is the beauty of adversity, it brings out the humane in us.

However, after we lost him in 2017, my life started to feel empty. That is when I came across CurePSP, a non-profit foundation based out of the United States. I wish I had known about them earlier; it would have made our isolated journey of caring for a patient of a rare neurodegenerative disorder in India a little easier. But perhaps, it all happens for a reason. I guess I wouldn’t have transitioned into the role of a peer supporter had my family not gone through it all alone.

CurePSP’s peer-support volunteering opportunity was a coping mechanism for me to get over my father’s death. In early 2018, I registered for CurePSP’s peer support volunteering programme, and started connecting with families caring for PSP patients in India.

Helping these families in India build a sense of community and find opportunities for awareness and education was very fulfilling. Eventually, in June 2020, with CurePSP’s support and encouragement, we started a WhatsApp support group for the affected families. We were able to help these families find the emotional support that my family could have benefitted from through the 13 years of my father’s illness.

It was comforting to see my father’s painful PSP journey not go futile, after all. Not only do we have a successful support group today, but since 2020, we have facilitated some fruitful sessions with medical experts, both in person and virtually, along with awareness programmes.

This July 16, it has been eight years since we lost him. And if anything, I want to believe PSP has made us kinder, making us value our loved ones even more. My sister, mother and I miss my father dearly; but we also continue to celebrate him, as we look out for each other — just the way he would take care of us. I believe he is watching over us quietly, and has become our guiding angel — probably still whispering from heaven: what are you worrying for, your father will take care of everything!

— The writer is a Mumbai-based screenwriter

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