By Naomi Menezes, International Representative (India)
The role of a caregiver can be physically, emotionally and financially draining, but does anyone care?
In India, family members are the natural caregivers for persons with mental or physical illnesses as there are extremely limited alternative facilities and family members are preferred for caring. Caregivers can be spouses, adult children, parents, other relatives (aunts, nieces/nephews, in-laws, grandchildren), friends, neighbours.
Caregivers play other roles as well. They may be employed full or part-time. They may be raising children, or have other family commitments. Adding caregiving to that list can easily lead to frustration and exhaustion. They navigate through doctor’s calls while at work, advocate for the care receiver, and take care of their day-to-day needs while trying to do all of those same things for themselves and their family.
No one is trained to do the broad range of tasks you are asked to do as a caregiver. In India, there is a need to develop systems of sharing, support, and supervision of caregivers who are so caught up in taking care of their care-recipient, that they do not pay attention to their own physical and mental health needs.
Based in Mumbai, a teenage Maitreyi battled through pain, fear, anxiety, and stress while coping to take care of her father who suffered from alcoholism. Through her journey, right from doctors to family members, she realized that everyone was deeply concerned about her father. And rightfully so. But there were no questions or concern raised about how she or her mom were coping with the situation – what were they going through, how were they dealing with it, how did they feel about it.
Born out of personal experience, Maitreyi founded Adveka Foundation in October 2015 – a social enterprise that identifies and seeks out these (almost) invisible caregivers who work tirelessly but are not recognized as individuals that may need help and support too. Adveka reaches out to caregivers from low socio-economic backgrounds through NGOs or healthcare centers. They also work with secondary caregivers- doctors, nurses, social workers, nutritionists working with kids who have cancer, and other professionals whose job entails taking care of someone.
Caring through sharing
Through individual counseling sessions, support groups, and workshops Adveka is campaigning the need to put the mental health of caregivers at the forefront. These sessions/support groups provide caregivers with a ‘safe-space’ – a non-judgmental environment where they can freely express their sadness, frustration, disappointment, anger that may be temporary, and arise from the stress of being primary caregivers to those suffering from illnesses. For secondary caregivers, job burnout – which is one of the most common difficulties is addressed through these sessions along with unhealthy negative emotions. Currently, Adveka works with health professionals at a pediatric oncology department in one of the hospitals in Mumbai.
While setting up the Foundation, Maitreyi was skeptical about how people would open up, share and support each other. However, a few sessions in, she was surprised by the honesty and the way the caregivers bonded with each other so quickly.
Rajshree, who joined Adveka early in its journey, recalls, “The sheer fact that they were all dealing with similar situations was an icebreaker. There was once a session where I didn’t even have to facilitate the conversation. The group shared their troubles, resolved their troubles and left with a smile on their faces. There is no greater satisfaction than watching impact happen in real time. It is these moments that make all the hard work worth it.”
Caring through self-care
During the initial days of setting up Adveka, Maitreyi faced difficulties in convincing caregivers of the importance of mental health, especially their own mental health.
Maitreyi informs us, “The task lies in creating awareness that self-care is not selfish. We strive to make caregivers understand that taking out 15 minutes a day for themselves isn’t a selfish move.”
“Once they join a support group and witness the benefits of sharing and taking time out, they go on to encourage other parents and friends who are caregivers to join in. They become the biggest advocates who are building pathways for others to seek help.” Maitreyi states.
Each session is specially designed to increase the caregivers’ resilience, healthy coping skills and reduce their feelings of perceived caregiver burden and stress. Together, they help build the emotional capacities of the caregivers which enables them to reach their optimal potential, improve their daily functioning and overall well-being.
So far, Adveka has been able to reach out to 3000 caregivers, facilitate multiple workshops reaching out to 2234 beneficiaries, and established 11 Support Groups. Through their awareness campaigns, they have reached out to 588 people.
How can you help?