Preventing caregiver burnout is essential while caring for family members
Zavher Chowdhury, who was a caregiver for her parents, writes:
It is never easy to look after a loved one with a terminal illness such as cancer. The news that my mother had cancer shook my world. A carefree 24-year-old back then, I was confused and shocked.
In situations such as mine, when you are suddenly pushed into the urgent role of a primary caregiver for an immediate family member, there is no time to get ready for an untrained task, something that requires courage, patience, knowledge and professional support. I tried to stay strong throughout the journey that she bravely travelled, and as I did so, a big part of me changed forever.
My mummy had started noticing bloating and discomfort in her abdomen for months. She also had a very severe case of flaking skin for which she was put on steroids. We were very concerned, but her doctor told her that the bloating was because she was putting on weight. Another doctor said it was due to the steroids she was taking for her skin issue. In Mumbai, a thorough examination by a doctor-friend revealed her abdomen was full of fluid. Further investigations revealed she had Stage IV Ovarian Cancer.
I took a long leave from work to be with her, to take care of her. All that mattered to me at that point was the precious time I could spend with her.
I was fine in the beginning. Then it started, the panic attacks. I developed chronic eczema. I slowly changed from the bubbly person to a scared, anxious and depressed one. Depression most often wears a mask: while outwardly I seemed to be bright and positive, inwardly I was dying a million deaths.
I often felt I wouldn’t make it through the day. This was despite having an extremely strong support system and getting engaged to a very supportive man.
It took a while for me to acknowledge these feelings. I was able to seek help only much after she passed.
I always kept a very cheerful disposition while around my mummy so as to not upset her. I put on a brave face in her presence, even though I was falling apart within. I tried my best to keep her positive, cheering her on and keeping our home as lively as possible. Another task, supporting my father, who was shattered, took a lot more effort and strength.
The most meaningful event for my mummy and me during her five-year cancer journey was my wedding. For me, it was not like the normal wedding preparations, where parents take the bride to do trousseau shopping etc. Amit and I worked a break shift in our jobs as chefs. Between 4pm and 6:30pm on a few days in between our shift we went to a few sari shops and bought clothes for the main ceremonies and a few pairs of footwear. That was it. Amit had a suit tailored. My mummy got my dad and sister to fetch jewellery from her bank locker.
Mummy planned the wedding from her bedroom, where every evening my aunts, uncles, cousins and their children would gather. She would be lying down on an antique bed whose back could be raised and every decision was finally approved by her. My wedding was lovely. About 50 of us in all, closest friends and family gathered at our home in the beautiful town of Jamshedpur. Kind folks came with a minivan full of flowers early in the morning and made a few flower arrangements. My nieces and sisters decorated the entrance with rangoli. My dear uncle performed the ceremony. Mummy smiling from ear to ear looked gorgeous in her Parsi border sari. She wore a bright blue turban on her head, and stole the show with her grace, charm and poise!
Within a few months of our wedding, mummy started sliding, she became ill. I had just started setting up my home and had to make a hasty retreat to Jamshedpur. Hard as it was to see her going the other way, there was nothing but respect and tremendous gratitude for her strength and fighting spirit. We were able to speak about what she wanted done and how she wished we would move on without her physical presence.
I would walk to my school (Sacred Heart Convent School) chapel every evening, and sit in the silence. Prayer helped me gain new strength for another day. At times, a nun would pass by and put a loving hand over my weary shoulders, which comforted me. It was a safe haven where I could cry and pray for God to release her of her pain.
Her end will stay with me forever. Mummy slipped away after saying her final goodbyes to her friends and family, almost like a page out of Reader’s Digest. Awakening after days in a semi-comatose state, telling us she loved us and asking to call a few of her closest and nearest ones. She asked for the windows to be opened and air conditioner to be switched off. In a short while, she departed to join the angels in the manner she wanted, from her home surrounded by those she loved.
(Our gratitude to Sindhu S. for her help with editing the article.)
Listen to Zavher Chowdhury share her experiences as a caregiver:
Zavher was also part of Pallium India’s webinar on ‘The Cost of Living With Cancer’ that was aired live on February 25, 2021. Please watch: