Globally, Father’s day is celebrated on June 20 to celebrate, recognize and honour fathers’, father figures, paternal bonds and the role of fathers’ in the society.

We chose to honour fathers’ and the paternal bond that palliative care professionals so often share with their patients while caring for them by bringing to you Mr. Lakshminarayanan’s story which beautifully illustrates these bonds that exist not only him and his father, but also between his father and his palliative care team.

Father and Palliative Care

– Mr. Lakshminarayanan, Bengaluru

It was the beginning of 2019, when one day my 91 year old father lost his voice. Rather, he was unable to talk the way he used to. Not that he is a big talker; however, whatever little he could, also reduced. We attributed this ‘temporary’ loss to be the result of his exhaustion from a journey he had recently undertaken. Eventually, we got him checked with a doctor and nothing abnormal was observed.

Mr. Lakshminarayanan along with his father

So went by six months, with us treating him with home remedies for a throat infection. He being net savvy and proficient in the use of Whatsapp, YouTube, Google search etc., slowly diagnosed himself to have throat cancer. The sound from his vocal chords became weaker…. His voice turned to whispers and eventually to wind; leaving him frustrated for being unable to communicate in a way that he was used to.

Our subsequent visit to an ENT in mid 2019, confirmed ‘his’ diagnosis. He was diagnosed with third stage cancer in the Vocal Chord.

Our next visit was to the oncologist to figure out ‘What next?’. They informed us that radiation was the only feasible treatment option and shared with us its associated benefits and side effects. Listening to this, my father decided against it and said, “Radiation will kill me earlier, so please let me go through life without these treatments”.

18 months went by with just normal life;which was typically characterized by reduced talking but with no other corresponding decrease in smiles, the occasional temper, or other day-to-day activities. The cancer had progressed significantly by December 2020 as he began to now suffer physically and choke on food regularly. This translated to the family also suffering alongside; spiritually and psychologically. Our care was now in the form of being mindful towards what not to add in his meals, as his food habits changed quite frequently. Thus began, his and our journey in palliative care.

One night, his breathing became difficult as he felt that he was being strangulated by an imaginary someone. The nights thereafter brought along with it, several nightmares. The ENT specialist now recommended Tracheostomy. Tracheostomy – A nightmare; that too if the tube is permanent until the end of one’s life. My father didn’t immediately accept this change, but slowly and eventually he reconciled to it (rather to fate) once we explained its benefits which included him being able to breathe freely, though through a tube.

My dad now needed full time assistance. My wife and I joined my brother and his wife to take care of our father. Despite being aware of the prognosis, we still hoped for the lump to drop off so that he would become ‘normal’ again. Hope is what drives any person isn’t it? Even after being fully aware that the script has been written already.

We tried Naturopathy to provide comfort; but that required changes in to be incorporated into his food habits, which was a challenge as the changes recommended were not palatable for him, causing him to actually get frustrated.

By this time he had adapted to communicating with us using sign language and writing. He would explicitly let us know what he needed and what he wanted us to do or not do. He was able to express his happiness, anger and his myriad other emotions, all on paper. Food that was once eaten so quickly took longer; solid food transformed to semi-solid food which eventually became just liquid food.

Thankfully, God was kind to him for he was able to intake food orally and without any tubes. Phewww!

As time progressed, it was the whistle from his Tracheostomy during the nights that reaffirmed to us that he would see another morning.

Knowing fully well that his end was drawing near, yet, he continued to lead a normal life within the allowances he was sanctioned under his constantly changing circumstances. He continued to do all his chores himself, which included bathing, visiting the toilet, washing his own plate and even washing his own inner garments. These actions were manifestations of his ‘never give up’ attitude and the choices he made reflected the quality of life that he envisioned for himself.

One day he choked on his tablets; his medication was now changed to powders and syrups. While the mind continued to remain strong, the body weakened! He gradually became bed bound due to fluid retention and everything that was once taken for granted, now needed external support. He adapted to these changes in circumstances by delving deeper into the comfort he received from prayers: listening, reading, watching, all modes.

My father soon needed to be hospitalized for specialized care and IV fluids for sustenance. His food intake had reduced drastically with him sometimes sustaining only on half glass of liquid food supplemented with protein drink.

During all of this time he maintained active communication with all of his grand children, his nephews and nieces, and also his great-grandchildren thorough Whatsapp. He continued to virtually participate in marriages and ‘first’ birthdays which were live streamed. Technology created opportunities for him to share key milestones and activities of his one year old great-grandson. I’m quite certain that he watched some of these videos in a loop to keep himself positive and afloat.

These last 4 months of physically living with him created for us, a ‘bonus’ window allowing him to impart for one last time, some of life’s biggest lessons. Caring for him re-iterated to us the importance of empathy, tolerance, patience, unconditional love and discharging actions filled with love and care. You see, by this time we were both father and child to each other. He also made me conscious of the fact that food, clothes and care is all that one needs towards the end of one’s journey.

One fine morning, he bid adieu to his body and left to where, we don’t know.

In addition to the constant care he received from my brother and his family, my sister and her family, and from my family and me, there were several other good souls who helped to nurture him along his journey; especially his nurses, his full-time care taker and his doctor (his adopted ‘other’ son) who continued to provide palliative care till the very end.

I do miss him… but I pray and hope that God takes care of his soul.

Adopting the palliative care perspective was initially difficult; especially when it is for someone as close as a father. Both of us, father and son, had taken each other for granted in many matters on several occasions. All of that needed to be set aside when we embraced palliative care.

I bow my head to all those who practice palliative care with such love, affection and patience. Money or access to resources is irrelevant here; it is the heart which is most important. Witnessing a fiercely independent person transform to a baby who not only needed to be cared for his basic needs of food and hygiene, but whose dignity was also now dependent on another, made me conscious of the role of a parent or in this particular case, the role of a palliative care professional. God bless all those people who actually practice palliative care!

About the Author: Mr. Lakshminarayanan exudes positivity and is a retired IT professional. During his 40 year stint in the industry, he has mentored several youngsters. Post-retirement he worked as a consultant in an organization, and was associated with Karunashraya and has closely observed the people who function as care takers.

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