After completing film school in the US, I returned home to India to find myself taking care of my sick parents. My mother had been diagnosed with Parkinson’s some years before and my father was a heart patient having already suffered a few strokes. I was 28 years old. I had no experience of sickness or aging. But over the next six years I learned how to cope with both.
From anger and resentment at the situation that I found myself in to an acceptance of it was a long and difficult journey. And while these six years turned out to be the most harrowing and traumatic period of my life, looking back now, I can say with certainty that they were also the source of great insight. I learned about my strengths and weaknesses, I learned about suffering and the possibility to rise above it, I learned about helplessness and guilt and love. To this day I am grateful that I was with my parents at home when they took their last breaths, and glad that they were not alone.
But all these years since their deaths I have been left with a lingering sense of guilt and remorse. And it is only while working on this film that I have understood where these feelings stem from; they come from being completely unprepared for their deaths. Though all the signs of a life fading were there, I didn’t know how to recognize them. Nor did I ever think of asking my parents: what is it that you want? Is there something you wish to do before you die? In fact, the word ‘death’ was never spoken between us. There is no doubt in my mind now that my parents and I would have benefitted tremendously had someone from outside come to assist us during this period.
The process of accompanying the dying in their journey towards death, of recognizing the patterns of death and of coping with the associated emotions was a common experience for people even a generation before us. But in the last 60 to 70 years, this knowledge has been lost. We are no longer familiar with the dying process. In fact, death has become such a taboo subject in our cultures that we hesitate to even utter the word. This loss of familiarity and knowledge is directly related to the rapid advances made in medicine in the last century. Lifesaving drugs, chemotherapy, advanced diagnostic and surgical techniques have all helped to lengthen life, but they have not managed to push death away. As Kathryn Mannix in her book With the End in Mind says, “The death rate remains 100 per cent, and the pattern of the final days, and the way we actually die, are unchanged. What is different is that we have lost the vocabulary and etiquette that served us so well in past times when death was acknowledged to be inevitable.”
And thus, mortality, which was accepted as the natural order of things in generations before us, has now become essentially a medical experience. Doctors who visit patients in their home, who hold the hand of the dying and who comfort and counsel the family no longer exist. Modern physicians are trained to aggressively prolong life at any cost; little in their education prepares them to talk about dying. Death, itself, has moved away from the home to the hospital. The last days of our life are swallowed up by procedures and treatments that rob us of any meaningful existence. Surrounded by anonymous spaces, controlled routines and strangers we are separated from all that matters.
It is in this context that I find the work of these palliative care workers so inspiring and significant. The team, with their compassion, their expertise and their time, help the patients and their families to be prepared mentally and emotionally for what is coming, so that the patients can die in peace at home surrounded by their loved ones. By sharing the burden of the dying, by not looking the other way, they affirm our humanity.
Most of the time that I’ve spent working on this project I’ve done so in isolation, discussing it with only a couple of trusted partners. It was only at Docedge, a documentary pitching forum in Kolkata, that I discussed the project in a more public arena. I was surprised by the number of people – fellow filmmakers, tutors, TV commissioning editors – who came up to me to share their experiences of death. It was important for them to tell me their stories of loved ones dying; talking about death was cathartic. If nothing else, this experience makes it clear to me how much a film like this is needed – we need to start a conversation about death, a conversation that is missing in our culture.
The stories you will see in this film will make you think about the people you have lost, about the ones you could lose and about your own death. This is inevitable. The film may even make you sad, but I hope that it will also gently comfort you and make you less afraid of facing the unknown. As long as we do not avert our gaze from the dying, a good death can be a possibility for us all.