“Listening to other caregivers’ stories made me realize I wasn’t alone.”
This single sentence encompasses everything Adveka Foundation’s Care for the Carer workshop, held on November 26 in Mumbai, aimed for and successfully achieved.
This workshop was part of Adveka’s continuing efforts to raise awareness about the mental health issues faced by caregivers, to recognize they need support just as much as the patients in their care do, and to promote their wellbeing.
The event opened with a talk by Dr. Shubha Maudgal, the Executive Director at Cancer Patients Aid Association (CPAA), one of India’s oldest organizations working on cancer awareness, and providing complete care and assistance to cancer patients. Having been the carer of a cancer patient herself, Dr. Maudgal is keenly aware of the importance of one’s own wellbeing in order to be a competent caregiver.
She used her own experiences, both personal and professional, to illustrate how caregivers almost always neglect their health because they believe thinking about their own needs is selfish when another person is dependent upon them. But it is extremely important for caregivers to not feel guilty about taking care of themselves, she said. Carers are first and foremost individuals, and have their own lives and needs that must be seen to as well. Moreover, being a caregiver is a huge responsibility, and only by taking proper care of themselves will they be able to cope with the requirements of the patients in their charge.
She gave important insights into the mind of a cancer patient’s caregiver, such as how siblings and spouses of cancer patients have the most trouble coping, and are the most difficult to convince to seek support for themselves. Young children, especially, are so affected by the fact that their sibling is suffering from cancer, that their own emotional growth is stunted. The clinical term for this condition is alexithymia, also known as emotional blindness. If alexithymia in the sibling of a cancer patient is high, it is strongly recommended they seek professional caregiver support.
Dr. Maudgal’s talk was followed by a session by Maitreyi Nigwekar Pawar, founder and CEO of Adveka Foundation. Maitreyi, a counselling and health psychologist, took the participants through various self-care techniques that would not only benefit their physical and mental health, but also enable them to cope well with the unique challenges they face with their patients.
She emphasized that self-care doesn’t have to be elaborate or time-consuming. Caregivers need to take as little as fifteen minutes every day for themselves for an activity not related to caregiving, such as listening to music, reading a book, having coffee with friends, or going for a walk.
The most promising and positive outcome of the workshop was that during the discussion, the participants — who comprised of carers of patients suffering from dementia, cancer, Parkinson’s disease and schizophrenia, among others — began sharing their experiences and stories of their own volition, without needing any prompting or persuasion from the organizer’s part.
“Despite being in a public forum, many of the participants opened up and shared their personal stories, which is uncommon,” Ms. Pawar said. “People are usually reluctant to speak about mental health issues because of the stigma associated with it. The fact that they were comfortable enough to open up to strangers is extremely encouraging. That’s what Adveka works for: a society that openly discusses mental health issues as a natural reality of life.”
This sentiment was echoed by many of those who attended the workshop.
“I think the parts of the workshop that were the most enjoyable were the moments where members felt safe enough to share their experiences spontaneously,” said Prerna*, one of the attendees.
“Listening to others talk about their experiences felt so comforting,” another participant, Sulekha*, said. “Getting an insight into other people’s stories made me realize I wasn’t alone.” She added the workshop was the first time she witnessed her mother, who also attended the event, sharing her thoughts about being a caregiver.
Caregiver support is one of Adveka’s three major focus areas, the other two being personal counselling and engagement with stakeholders to raise awareness about mental health. Through its Saath programme, Adveka forms support groups for carers of patients with the same health issues, and conducts sessions with them on dealing with themes such as caregiver guilt, anger, frustration, emotional management and better communication. The focus is on maintaining the mental health of the caregiver, so they are better equipped to take care of their patient.
Adveka believes in the saying that you can’t pour from an empty cup. You need to take care of yourself first.
*Names have been changed to protect the identities of the participants.
Written by Samyukta Maindarkar, Editor & Content Manager, Adveka Foundation.
With inputs from Maitreyi Nigwekar-Pawar, Founder & CEO of Adveka Foundation.