There’s a great saying- “To care for those who once cared for us is one of the highest honours.”
And while that may be true, what also accompanies such an honour is the unseen and inexplicable emotional trauma, financial stress and always a certain sense of failure. As one of my mother’s primary caregivers, I felt each of these feelings and much more.
In the wee hours of April 6, 2019, my mother passed away at the hospital, where she had spent about three weeks, phasing in and out of a semi-comatose state. It was Gudi Padwa, the Marathi New Year – and more importantly, my mother’s most beloved festival. Then, aged 67 years, my mother had chosen a very auspicious day to make the journey to the “other side”- even she would have agreed. She had battled with liver-cirrhosis for almost nine years (and suffered from diabetes and related illnesses for almost 27 years), finally succumbing to a multiple organ failure. Having seen her struggle up-close, I felt only relief on seeing her peaceful face. The feelings of extreme grief, loss and sorrow came knocking hard at my door only a couple of weeks following her death, and continue to linger.
Ever since my childhood, I had seen my mother suffer from various illnesses (including multiple bone fractures, cataract operations and tuberculosis), and several rounds of doctors and hospitals were made on various occasions. At that time, my father was her primary caregiver, while my elder sister and I remained on the periphery- simultaneously engrossed in completing our education, forming social circles, finding our careers and being rebellious daughters to our traditional Indian mother.
In early 2009, my mother took a turn for the worst. She was diagnosed with liver cirrhosis, at a time when I had begun my legal education. At first we were shocked that my mother, a tee-totaller, could be suffering from this sickness. We only later found out that diabetes may have been a contributing factor to her liver cirrhosis. None of us truly grasped the enormity of this illness, and without proper advice from doctors and an action plan in place, we were left running around like headless chickens.
A few years later, when I was few months into my first job with a prestigious law firm in India, my father suffered from a paralytic stroke pursuant to a heart issue. It was around the same time that my mother’s downward spiral began-multiple internal bleeding complications arose and she was in constant need of blood transfusions and endoscopies.
From being on the periphery, my sister and I were thrust with the roles of primary caregivers (alongside our father). Given that my sister is differently abled, I had to take on the physical part of being my mother’s keeper. In my mid-20s, I had taken up the role of mothering my mother.
Suddenly, while my friends were getting acquainted with office politics, pursuing higher studies abroad, vacationing with their parents and navigating their social lives, here I was learning doctors’ names, researching medical terms online and rushing my mother from doctor to doctor, hospital to hospital.
Law firms can be tough; the working hours are long, the deadlines are tight, and the competition is cut-throat, clients can be ruthless and sometimes your reporting seniors even more so. It is the nature of the business. My family understood the importance of my career and tried managing without my help. The times I reported to an understanding senior, I was able to make the necessary monthly hospital visit, and also stay over at the hospital as and when my mother was admitted.
I always carried my laptop with me to the hospitals and worked from there – after all, I had to continue staying relevant and at the top of my game. Till date, there are memories of me sitting by her side at the hospital -while she struggled with the thousand pricks of needles, I clacked away at my keyboard trying to draft contracts.
Throughout my mother’s caregiving, we faced numerous challenges – finding the correct doctors and hospitals, not receiving correct medical advice and making my mother undergo unnecessary and expensive procedures, shelling out huge sums of money, travelling through Mumbai traffic in ambulances, being woken up in the middle of the night for medical emergencies, finding good professional caregivers to help support us and so forth.If I elaborate on each of the aforesaid, this article would turn into a tome.
As my mother became more ill, it became harder for me to sustain a life at a law firm.Having to take more leaves while simultaneously stressing about ongoing transactions, I could not do justice to my family or my work.I was still ambitious and wanted to pursue a career. Further, our financial resources were slowly drying up and good medical care in India is expensive.
My luck was running out with my mother’s health, but professionally I was lucky to find an in-house counsel job with a reputed investment firm, which offered me challenging legal work and more flexible work hours as compared to a law firm.I let many friends and acquaintances believe that I had switched roles for “easy hours”as it was impossible to explain the gravity of my situation, and I thought it unnecessary to burden them with my truth.With better working hours and a compassionate boss, most of my after works hours and weekends were now spent by my mother’s bedside- either at home or the hospital.
During my caregiving journey I was even lucky to meet my then boyfriend (now husband), occasionally socialise with friends and travel on holidays (while my father and sister kept a stronghold on the situation in my absence). Our families even threw us a beautiful wedding-one of her dreams come true.
Our family lives revolved around my mother’s illness; it was always the main topic of discussion in person or on the family WhatsApp groups. My days began and ended with discussions on haemoglobin levels, urine output and liver profiles. My parent’s house had literally become a dump-yard for medical equipment.
However, to the outside world (including many of our close friends and family) we appeared to be living normal lives. As my mother’s illness (physical and emotional) worsened, it started taking over all aspects of my life, and I started feeling isolated.Constant illness does not make for good conversation. It was easier for me to grumble about work, gossip about relationships, talk about travel but not about the imminent doom my mother was facing.Through my caregiving journey I lost many friends as I could not relate to their relationship and career issues. Many a times, I did not have the energy to socialise or even put up pretence. My mother was dying and saving her was all that mattered to me.
The more ill my mother fell, the more travel photographs I posted on social media presenting “normalcy”. In fact, we all tried to act so normal, that many of our friends, relatives, colleagues and acquaintances were oblivious to our struggles till the very end and many still are.
The hardest part of my caregiving journey was to see my mother’s illness physically and emotionally transform her. My mother was a strong woman, who protected her daughters ferociously, and had raised my differently abled sister to become completely independent in the 1970-80’s in an inaccessible city like Mumbai. She was the founding President of an NGO named Parents Campaign for Rehabilitation of Handicapped (PCRH), and even through her illness, went out of her way to help anyone in need. It was hard to accept that this woman who had fed and draped me, sacrificed her wants and needs for mine was now immobile without a walker, constantly poked and connected to alien machines and urine bags, had become moody and many a times depressed. It broke my heart to see my father, in his 70’s and never leaving my mother’s side watching his companion of over 40 years slowly disappear in front of his helpless eyes.
I was constantly fighting with my parents on the caregiving decisions being taken, angry that my mother was unable to take care of herself, helpless that I couldn’t save her. I was bitter that I could not lead a “normal” life, and constantly worried that my parents may drop dead on me at any given moment.I finally sought counselling, still a rarity in India, to help me deal with my anger, helplessness and a highly stressful situation.Counselling did help me let go of my anger and accept my situation,however, it was too late.By March 2019, my mother had become extremely weak, and her liver had started rapidly failing.
She was admitted to the hospital on March 19, never to return home. After a week or so of trying to revive her, the doctors were brutally honest with us,that it was too late for a liver transplant and it was time to let her go. My father, sister and I decided to sign a DNR(Do Not Resuscitate), pulled her out of the ICU, and watched her slowly fade away. It was the hardest times of our lives, to watch her helplessly shift in and out of consciousness- her doe eyes staring helplessly at me from the hospital bed still haunt me in my sleep.
Close friends and family visited, we played her favourite songs and spoke our last loving words. We never could tell if she could understand us, but we did so anyways. It broke our hearts but we carried on going to work and visiting the hospital in turns. Finally, after years of struggle, peace came for her while simultaneously leaving a huge void in our lives- a void which I am till now struggling to fill.
Rosalynn Carter,the former First Lady has famously said “There are only four kinds of people in the world – Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.”
Through my caregiving journey I have come to the realisation that caregivers need as much or even more support than the patients themselves.If a caregiver is not mentally and physically fit themselves, it becomes very difficult to take care of their loved ones. In a fast-paced city like Mumbai, where empathy is rapidly dying, it has become very important to have support groups who can understand and help you.
I am grateful that, while I did not have a formal support group, I had my husband, my father, my sister and my best friend by my side. With their support, and counselling, I am now trying to cope with grief and accept my “new normal”. I still wonder, if we had better support from the very beginning, would I still be arguing with my mother today about wanting to give her grand-kittens instead of grandchildren.
About The Author
“I am a corporate lawyer by profession, specialising in the venture capital/private equity space in India and South-east Asia. Being a passionate animal and nature lover, I strongly propagate that animals and the natural world should have rights akin to human beings, and we need to love and respect the natural world that gives us our source of life. I believe in an inclusive world, and strongly dislike any discrimination solely based on gender, caste, creed, religion, nationality, class or being differently abled. Having seen anxiety, stress and depression up-close and personal, I truly believe that mental well-being is as (or more) important as physical well-being, and counselling can work wonders. I hope that before the end of my time on this planet, I am able to create a positive difference in at least a few lives (if not many), and to not have demoralised/tarnished anyone.”