#LivingWithCancer: Unbearable trauma a daughter of a cancer patient endured during Covid lockdown
Prasanna Sriya from Chennai writes:
My dad was diagnosed with cancer and I naturally became the primary caregiver. Of his two children, I was the one living close-by and being a daughter and a dentist by profession, it was only natural for me to step into that role. All seemed under control initially. Then Covid-19 turned my world upside down and nothing was the same again, neither dad, nor caregiving, not even me.
Dad was diagnosed with multiple myeloma in December 2019. The oncologist was surprised that even though he had bone marrow cancer, he did not experience acute physical pain as other patients do. But there were other pains, mental, emotional and spiritual, which needed specialist care but is never available when something like a lockdown weighs you down.
We live in Chennai, in a place called Thiruvanmiyur, by the sea, and my parents in Indira Nagar, just a 10-minute drive away.
My dad had one last wish; he wanted to go on a pilgrimage to the Holy Land of Jerusalem. Fulfilling that dream became my mission. Seeing him respond well to therapy, the oncologist said dad would be fit to travel. We planned for May and booked tickets. I got his passport renewed. But the pandemic upset our pilgrimage.
Another more tragic event made life hell for me and dad, and the rest of the family. My mother went to Kodaikanal; and as fate would have it, she got stuck there as lockdown was announced on the day she was to return.
Right at the outset, I was clear about two things: his quality of life and dignity should not, and never, be compromised. When I took charge as his caregiver, I knew fully what I was signing up for, or so I thought. Only later did I realise what else was in store than merely taking care of his treatment and physical comforts. Dad suffered fading memory but nevertheless, remembered his family till the very end.
My work as a primary caregiver involved being his personal help and his constant support system, making palatable food on time, ensuring regular medication, organising weekly nurse visits to administer injections – including the pick-up and drop, which I did myself. Other duties included routine safety and hygiene checks such as ensuring he returned safely from his walks, or had his daily bath. I would chauffer him for his monthly check-ups to the oncologist and cardiologist. I had only my 20-year-old son as an immediate support during those months.
The lockdown swept in major hurdles to our somewhat smooth routine. My mother as well as my US settled brother could not travel to meet my dad like before. I had to change his doctor and hospital thrice. We had to take a couple of emergency ambulance rides to the hospital. As weeks turned into months, I was thoroughly stressed and baffled, not sure what I was dealing with anymore.
Dad suffered emotional breakdowns. His mental trauma manifested as frequent mood swings when he became a different person, difficult, and aggressive. He would become verbally abusive and suspicious of everything. He had hallucinations, and was frequently disoriented. He refused to have food, or medicine, and became uncooperative.
Were all these changes due to the medication, dementia or the cancer? Was this my real dad, whom I did not know all those years? So many questions, with so few answers; I was going insane. I was not sure if I was thinking straight. I lost clarity, and direction.
At this point, my family gave me a free hand in any decision-making with respect to dad’s health, which I saw as another burden, of an emotional and moral kind. I desperately needed help but I had none from any front or form. My emotions went on a roller coaster ride.
Two incidents – a fall and fracture of his orbital skull bone in June, and his pulling out the feeding tube a week later – jolted me out of my panic mode. Was I subjecting him to humiliation in the name of taking care? I collected my thoughts and took decisions calmly.
I was lucky to find a palliative care centre just five minutes from my house. We knew the chief doctor there, which gave me confidence since I wouldn’t be leaving dad with total strangers.
When I was about to admit him to the hospice on June 27, he said: “I am unable to process many things, I know you are doing it for my good. I will come with you wherever you take me.’’ Such trust! It saddles you with the burden of guilt, and an added responsibility of double checking your decisions.
Dad became himself again at the hospice, witty and beaming, chatting with everyone around. I visited him most days, with my son, who was very dear to him. I was pleased to see him improving emotionally, and adjusting well to the new place.
However, things took an unexpected turn for the worse. By July 15, he refused to take his medications, or food. He stopped talking to me as he wanted to come home, while emotionally I was not ready for that. I knew he was not going to make it safely this time and I did not have the courage to face his death alone. I wanted someone by my side.
On July 24, after a two-day gap, I felt a strong urge to visit him. I had no plans of staying back. When he saw me, he was all smiles. My brother spoke to dad on a video call. So did my son. Unfortunately, my mom is not tech savvy, and could only speak to dad, not see him. While still on the call, he lost his speech and could not understand her words anymore. I sensed the end was nearing.
I had the best of my time with him from 5:30pm until 11. I read a small passage from the Bible for him. He gestured me to sit by his side, and I stroke his head and chest. He held my hands in a firm grip. I told him I was with him and that he need not put up a fight if he was tired. If he chose to let go, he could.
Around 10:30pm, I briefly fell asleep. At 11pm, a nurse woke me up. A shallow sleeper otherwise, I did not hear the hustle and bustle that was going around. I rushed into his room and witnessed life-force leaving his body. I requested the nurses to allow him to pass away in peace. The duty doctor came in and took care of the situation. Although there was never an in house duty doctor in the Hospice because of the pandemic. In the end, I was surrounded by four nurses, housekeeping staff, and the security guard, who felt like family. I was not alone.
The hospice staff organised an ambulance and and icebox. I left the hospice by 12.30am on July 25 and brought dad to my house. I performed his last rites, alone. My mother arrived later the same day after his last rites. I went back to the hospice on August 3 to get back his belongings.
Lockdown was relaxed by May-end and my mother had a chance to see him alive for one last time. But my brother advised her not to travel to see dad’s body fearing she might succumb to covid as she is a cardiac patient and hypertensive. I came to know about this only in August and felt enraged. Even though I too wanted to spare her the trauma, I wanted her to get closure. We don’t talk or ask, but we know she harbours guilt, which worries me.
I do not know how she is processing her grief, because as a family we have not grieved yet. I often relive the terrible suffering we endured together, me and dad, during those alarming months of isolation and pain, with only trauma as our constant companion.
I continue to struggle with the question: Did he pass away because of emotional pain, and did he feel abandoned by his family, by me, in the end?
(Our gratitude to Sindhu S. for her help with editing the article.)
Listen to Prasanna Sriya share her experience with palliative care: