Too Soon

“He is my everything. I cannot imagine my life without him. I don’t want him to die…”

Her eyes welled up as she spoke those words. She turned and looked lovingly at her husband who was lying in bed gazing at her silently when he said, “I’m hungry.” Wiping a tear she broke into a smile, and so did he.

Arun*lived a simple life with his wife and daughter in the city of Mumbai. The three of them were very close. There was a lot of love and laughter in their middle-class home. He and his wife had a special bond, they were quite attached to each other. Arun spent most of his life working and saving for his family’s future. After their daughter’s marriage, both the husband and wife had planned to celebrate each other and their lives together. They had made plans to travel, go to places they always wanted to but could not, buy similar clothes, enjoy different kinds of food and culture, just the two of them. But life had other plans.

Their daughter got married and moved in with her husband and his family. Not long after, Arun got diagnosed with left thalamic carcinoma – Glioblastoma. The news broke them. The wife was shattered. Plans failed. It was too soon. Despite treatment, the disease metastasized. Arun’s functions and cognition gradually started to get impaired. He found himself bound to the bed. The laughter seemed to have vanished from their lives.

A life-limiting illness such as cancer, changes the course of life. It is debilitating. Not only for the patient, but also for the caregivers. Arun’s wife felt alone. The daughter understood this, she rented a house adjacent to where she lived, and had her father and mother move in. That was when they were introduced to PALCARE.

Our team visited the family in December 2022. Arun was bed bound. Hardly conscious. Did not respond to commands. He had no sensation on his legs. His wife was distressed. She had questions. How long would he be in this state? How much time does he have? Will he get better? One could feel the pain when she asked them these queries. The PALCARE team took all the time needed, and patiently addressed all her questions. She understood the prognosis; and she only wished he were a bit more aware, maybe could eat on his own, be a little active, talk to her.

Within the bleakness of cancer, where life is limited and death is certain, through palliative care, one often sees things of goodness. Immense pain being managed, symptoms being brought under substantial control, a space of openness and compassion being created, relationships being formed. A certain gap being filled.

Since the care plan started, Arun started talking, incoherent, not very articulate, but enough for the wife to understand. He started eating with his own hands, he slowly regained the functions to chew and swallow. His appetite increased. He would say funny things and sing old songs that he and his wife liked. She started playing the radio for him. He still couldn’t walk, he was still dying, the wife was still scared. But through all of this, was the constant support of PALCARE and its team. At every step.

The daughter was of a quieter nature, the wife was more open about her vulnerabilities. She trusted PALCARE. She formed a special bond with the team nurse, one that shall be cherished by both.

Arun’s disease progressed over the coming few months. The wife and daughter understood the prognosis. They were distressed, but they were sure they did not want to take him to any hospital. The PALCARE team worked constantly with them, guiding the family, and preparing them for what is to come. Symptoms were managed as much as they could, anticipatory medications were put into place. Arun was at the end of his life. During the last few days his heart went into failure, he stopped responding. And on the 30th of March 2022 he breathed his last. It was painful and overwhelming for the family especially Arun’s wife. He was her everything to her, and he was only 51.

During a bereavement visit, she expressed that she still feels his presence, feels she is holding his hand. And through all this, she never once stopped thanking the team and feeling grateful for PALCARE and what it brought in her life.

*Name has been changed for the purpose of confidentiality*