15th April 2017
My mother wishes everybody a happy Bengali new year. She told me to put it up on her Facebook.
Talk about patient – doctor trust and relationship, mother’s attending doctor didn’t even visit her today in his rounds. Didn’t even meet the family to tell us what kind of palliative care is required, what precautions we should take, how to ensure she doesn’t suffer pain. Nothing. He wanted us to leave, we are leaving, he couldn’t be any less bothered.
Bengali new year didn’t bring any new hopes. We shifted mom to the new hospital yesterday but her condition deteriorated when we reached the hospital. In the ambulance itself her Oxygen saturation was falling. I kept asking her to stay awake as that helps in oxygen supply. She herself told me the day before that when she falls asleep she forgets to breathe. Her lungs are no longer breathing on their own natural way.
The new hospital didn’t even have a BIPAP machine when we entered the Emergency. By the time we took her out of the ambulance and went inside the Emergency she started having severe breathing trouble and they immediately put her in ICU. The question, whether to intubate her or not came up again.
In the previous hospital, every night the ICU doctors used to call us and ask whether we want to put her on ventilator or not. We didn’t know what to do. The first night they asked this question, we didn’t even know where mom’s cancer was and in what stage? We had no idea how much time she had. But the ICU doctors said she had no hopes, her condition was so bad that putting her on ventilator would only increase her pain and suffering and we would soon curse ourselves because euthanasia is not an option in India. The ICU head was a strange doctor. He went to extreme emotional dramatization and animated story telling giving his personal experience of how his uncle had prostrate cancer and he never visited a hospital and lived 3 months without pain and insisted we should do the same.
But we thought not putting her on ventilator would mean killing her without even giving her primary doctors a chance to diagnose her and treat her. So the first night they asked for the consent we said we cannot take this decision we need more time. So they said, ok but take a decision quickly. Mom survived the night without the need of ventilator. Same thing happened next night, and the next night, and the next. They always called us at odd hours and said that her respiration condition is serious she may need ventilator any time. On second night we gave our consent because even her oncologist agreed it was the right course.
However mom never needed ventilator and was shifted to the ward. From there they discharged her, asked us to take her home. A horizontal movement from the ICU to Ward to Home is not always a good news. A last stage cancer patient is sent home to die
Saturday evening when we shifted her to Dharamshila Cancer hospital, the doctors again felt she needed ventilator. I was called inside ICU to sign the papers. When I reached I saw mom still not being put on the BIPAP machine, she was panting desperately, trying to catch every breathe. I told her ma they want to put you on ventilator, it is very painful, a tube would go through your throat and you won’t be able to speak. She said, “Let them do whatever it takes. I cannot take the pain of breathing on my own anymore. I will leave.” I signed the papers but that night too she didn’t need the ventilator. By 10.30 pm her oxygen saturation stabilized on her own and she was sleeping.
We spent the night in the waiting hall, all four of us, my sister, choto kaku, baba and I. 16th morning my sister left for Dehradun. Before leaving, we had a long talk at night and it was devastating for me.
My life was already strange. Dysfunctional, neither happy nor sad, neither successful nor a total failure – a confusion. In last few days it just went from bad to worse. I am worried about myself more than mother’s health. I am scared of a long lonely battle. Scared of what it already has made me and what more harm it would cause. I feel vulnerable but every time I have tried to share my worries with closest people I am told that I chose this life, so my vulnerability doesn’t make sense and doesn’t get me any empathy. I feel so lost, I don’t know where to go from here.
One fine day you realize your whole life was a misunderstanding. You thought it was something. But it wasn’t. All those wonderful happy days in the past with your best friend turns out to be “you imposing yourself on her.” All those wonderful happy memories with your younger sister turns out to be “you bullying her.” Your happy days in the past are built upon other people’s misery. I find it hard to believe that one can go on in life after such self-realization.
I will write. That’s the only way to deal with this.
My mother told me once that my parents planned for a second child because a paediatrician told her that it was important for my healthy mental growth to have a sibling. When my sister was born I was 8 years 9 months old. I don’t remember much what was my reaction when I first saw her, or during her days of being a baby crying in a cradle mostly. I remember my relationship with her from the time she was around 3, able to walk and talk in broken words. I was almost 12 then. Entering the teenage. I remember something very bizarre. I remember i wanted to desperately talk to her like a friend, share my life with her. But I was aware that she was too young to understand a lot of things I wanted to share. So I used to store them in a folder in my mind neatly organized age wise. At what age would I share what information with her. And then as she grew up years on I made her an audience of my life, sharing every bit of my life with her. And at the same time being her elder sister, telling her right from wrong, taking care of her when mom was not well, playing with her, bringing her gifts, celebrating her birthdays, scolding her if I disapproved her actions. I was like a mother.
How the hell would I have known how this overbearing nature of mine was affecting her psychology. She grew up resenting me and rebelling against the very idea of me. She became everything I am not. My best memories are her worst. We became 180 degree opposite people. Now we have nothing to relate to as common emotions except our parents. We both don’t understand each other and are dismissive about each other’s life choices and priorities.
So far so good. This works out fine in a Western culture where once you move out of your parents home you don’t necessarily have to deal with your siblings if you don’t like them as people. But in Indian culture, where I live with my parents and she moved out with a job to a new city and then a matrimonial home, it complicates the relationship further.
To be continued…