Lessons: In Life, In Death

by Aneka

She grew up in an ordinary middle-class family. She was sent to school with her elder brothers, in contravention of the times, largely thanks to her forward-thinking mother. She wanted to become a schoolteacher like her mother.

Post-marriage she had to move to a metropolitan city in another state.  The shift was tough, especially having to learn a new language for basic communication, but she persisted.

The young lady achieved her dream of becoming a teacher and continued her passion as a service to teach people of all ages and all walks life even after she officially ‘retired’.

After an interlude, I was born – her first grandchild – her pride and joy – and as circumstances would have it, I mostly grew up as the youngest child of my grandparents. As a teacher, her handbag would be full of toffees from students whose birthdays it was that day – and I would dutifully expunge her handbag of these by promptly emptying them into my mouth as soon as she returned home. She was also extremely punctual, as neighbors swore, they could “set their clocks according to the time she walked out the door on her way to work”.

One lifelong dread she always held, and expressed pity when others underwent it, was lying unconscious in bed unable to take care of oneself. But life is a cruel irony; she suffered two cerebrovascular accidents (strokes), in July 2013 and February 2015 respectively. While she was quite mobile and mostly able to take care of herself after the first, the second one was more serious, leaving her bedridden and gradually losing sensation throughout her body. She was in hospital for two months, and it became increasingly evident that her hospital stay was medically futile, even harmful (she developed a bed sore).

My awareness about palliative care led to my advocating with her treating doctor for a discharge. Her partially-paralyzed face lighting up with a broad smile as I waltzed into her ward and announced “grandma, we are going home” will remain forever etched in my mind – that was also the last time I ever elicited a knowing response from her.

Techniques of palliative care also came in handy whilst caring for her at home over the next three-and-a-half months, until her eventual demise. Regrettably, it was only when the family was speaking together after her funeral that we realized her skin had been so well-kept that we could have donated it.

My travels to palliative care projects across the country helped me to realize the sheer quantum of need for service provision and awareness about palliative care across all socio-economic groups, as well as the need to expand services to life-threatening and life-limiting conditions beyond cancer. My grandmother died at 80, having lived a full life, but continues to inspire my engagement with the Palliative Care sector.

Aneka

The author is currently pursuing a PhD in Social Work at TISS, Mumbai. She is  a trustee of Golden Butterflies Children’s Palliative Care Foundation, Chennai, and previously worked with TATA Trusts for over a decade.

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