Bhavana Issar is the Founder and CEO of Caregiver Saathi, a caregiver support group for cancer and other terminally ill patients. She tells about the dynamics of help for caregivers of cancer patients and other such ebbing diseases. She creates an ecosystem for the caregivers, who require equal emotional and psychological support to win over cancer through her work.
I have the life experience of having been a caregiver. I was 25 years old when I lost my father to a degenerative terminal illness. Over the last 30 years, I have been an active caregiver to various loved ones with terminal illnesses, dementia, and mental illness. I wanted to do something that would give me a sense of purpose and meaning in my life. I found the answer when I looked at the intersection of my life experience, education, professional expertise, and honing in on what the world needs. I realized that offering a systemic solution, like an organization that supports caregivers, was the answer.
Caregiving is often invisible. More than 80% of the caregivers are women. Women and girls provide 3.26 billion daily hours of unpaid, care-related work, in India. This is equivalent to one trillion US dollars. Caregiving is the engine of the economy. These responsibilities hold women and girls back from financial independence, education, and realizing their dreams and potential. By shining the light on caregivers and recognizing the labor and skill that goes into caregiving, we are making the world equitable for women. By going beyond gendered roles, we are enabling men to be able to explore taboo roles. By normalizing psychosocial and emotional support, we are making mental health support accessible.
Perhaps the biggest regret of my life is not engaging in a conversation with my father when he wanted to talk to me about dying. It was a difficult conversation to have. All the same, I wish I had that conversation because there have been occasions later in life when I have wondered what he would have wanted to tell me. Caregiving is considered a gendered role as if women are better caregivers. Caring and nurturing are feminine traits that both men and women can possess and express. Caregivers need caregivers and companions. One can live a full life if one can appreciate the fact that it is finite and dying is inevitable. And it's not the years of life but the life in the years that matters.
The caregiving journey is overwhelming and there are too many things involved in it. If you can have a mantra for a day which means an intention for yourself for that day, that is kind to yourself along with your well-being. What can a caregiver have for the day; that is a caregiving mantra. What are a caregiver's thoughts for the day and what is her intention for the day?
We believe that well-wishers and other family members have a big role to play and we would encourage everyone to register at our website, who can have access to resources. In India, many women and girls do caregiving work that goes unnoticed.