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.
She was a caregiver to her father
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 illness, dementia, and mental illness. I wanted to do something that would give me a sense of purpose and meaning for 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 the engine of the economy
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 roles that are taboo. By normalizing psychosocial and emotional support, we are making mental health support accessible.
Biggest regret of my life
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.
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 own well-being. What can a caregiver have for the day; that is a caregiving mantra. What is 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.
Things a cancer caregiver must keep in mind
- He must have good communication skills and at least basic knowledge about the disease. It helps in communicating with the oncologist and guiding the patient in the right direction.
- A caregiver must keep in mind the dignity and independence of his/her loved one: It is a must for a caregiver to connect with their loved ones and include their opinion in the care decisions on a regular basis, lend an ear to their wishes, unfulfilled desires and more.
- A caregiver must become a support system for the patient.One of the primary responsibilities of the caregiver is to build a physical and emotional infrastructure so that they feel supported and encouraged. Also, recognizing the emotional needs of the loved ones is very important, as each person is unique and their emotional needs are also different.
- A caregiver must be mindful of his/her own wellbeing: Unless the caregivers remain healthy, both physically and mentally, they will not be able to carry on their role adequately. Caregivers are often seen to experience compassion fatigue, impatience or frustration. Being in touch with other caregivers, getting guidance on caregiving, learning how to be a caregiver and practicing how to process one’s emotions are critical for any caregiver.
- Caregivers need to remember that it’s okay to take help. Caregiving does not need to be endured alone. Sometimes the help comes from extended family, sometimes from professionals and sometimes from others who have walked similar journeys.
- It is always a good idea for a caregiver to join support groups. Learn what it takes to be a skillful and compassionate caregiver. He/she may join group learning sessions or take individual coaching.