Individual grief manifests as love for the community

Individual grief manifests as love for the community

– Ms. Sailaja Tripathy, Bhubaneswar

Deepesh’s association with Amrit Dhara Palliative Care Trust (ADPCT) was made possible by Ms Namrata Rath (Managing Trustee and Secretary, ADPCT), who was a source of support during his cancer treatment at Tata Memorial Hospital, Mumbai. Deepesh was a 25-year-old gentleman who was suffering from brain cancer. A software developer, he lived with his parents and younger sister.  

When our team met him, he instantly developed a strong rapport with us and always felt warm and content while in the presence of doctors and nurses from ADPCT. His family often told us that he would always look forward to spending time with our team. My colleagues and I also in fact shared the same sentiment with Deepesh. I am reminded of an instance where Dr Sumita Mohanty (Trustee, ADPCT) had made Deepesh his favourite lunch because he insisted on eating it right out of her hands. Gradually as his disease progressed and he began nearing his end of life, he lost his speech and motor abilities and became bedridden.  During this time, Deepesh would often become agitated and aggressive around his family, but anytime he met Ms Rath, he would instantly calm down and fall asleep; Ms Rath had become a source of calm to Deepesh and his family. During his final days, he would frequently express his love for us by trying to smile and point towards the ADPCT’s yearly table calendar.

I even remember visiting his father, just a few days before Deepesh passed away. Deepesh’s father shared that he knew that his son was breathing his last and that he had done everything within his power to ensure a pain-free life for his son. However, just after saying that, his frail heart broke down in front of me. He continued to share how heartbroken he was to see the otherwise always radiant and expressive Deepesh now unable to communicate with his family. He then told us how important it was for him to ensure that Deepesh had a dignified death.

On 29^th October, 2023, we lost Deepesh.

The next few days were a blur for his family. Despite all the counselling and preparing Deepesh’s family for what was coming, Deepesh’s mother was numb. She was unable to process what was unfolding right in front of her, was unable to comprehend that the world could be this unforgiving and cruel, or that anything terrible could happen to her only son. The family was crippled by their loss, and it took them weeks to recover from their intense and debilitating grief.

Our team waited for a month before visiting Deepesh’s parents for bereavement care. Towards the end of November, Ms Rath and I visited Deepesh’s family to check-in on how they were navigating their grief. As we entered the house, we felt a change in the environment. We noticed that Deepesh’s mother was sitting on the same bed where Deepesh had breathed his last. Beside the bed was a small window which let in plenty of natural light. She was sitting rigidly, staring out the window, totally lost in thought and not so welcoming of us. She then turned towards us with a sharp cold stare and scanned to see if we were still holding her son’s memories. I instantly realised that she was contemplating if she should let us into her world of sorrow or keep her pain to herself that day. As we began talking, her one-word responses eventually developed into sentences and statements as she perceived the environment to be a safe place for her to express herself. She spoke about everything that she had done for her son with so much love and care. She continued to express how she was still trying to find closure to her biggest loss. Thereafter, we continued to keep in touch with Deepesh’s grieving family to provide them with the care and support as and when needed.

Over the past few weeks, Deepesh’s parents have started to slowly give meaning to their ‘new’ life. We noticed that the family which had been dealing with their hardships alone for years had now gotten closer and were now sharing their losses collectively. Deepesh’s father who used to run a small variety store in his neighbourhood had shut it down when he became his son’s primary caregiver. Deepesh’s father has now returned to work and has transformed his variety store into a book and stationary store, which caters primarily to selling stationary items. Deepesh’s mother with assistance from ADPCT, now volunteers for several cancer patients in her neighbourhood by educating them about palliative care. Her latest volunteering projects have been towards making the parks in her neighbourhood more attractive. During our visit, Deepesh’s mother shared that her son adored kids and that these initiatives taken by her husband and her allows them to feel a sense of connection with their child. She also acknowledged ADPCT’s encouragement and the bereavement support offered to them during such challenging times. 

We, as humans, are deeply rooted in our ability to love and be loved. All relationships eventually come to an end and when it does, our grief is directly correlated to how close we were with the person we loved. Each of us possess an incredible ability to hold both the gratitude as well as the heartache of having had that person in our life; and beneath all the emotions of loneliness, melancholy, and isolation, love is the only thing that persists. The loss of a loved one transforms our pain into new dimensions. We feel that we are profoundly bonded to them as long as our agony lasts. We fear that as the pain lessens (not having as many periods of severe grief), we begin to drift away from their memories. What we fail to realise is that our connections don’t fade away at all, but instead, our love transforms it into a more bearable and less agonising state. As we begin to get slowly used to this ‘new’ normal, one fine day it will ‘click’ that it is the same love which we have always had for them.