Caregiving for Mental Disorders: An open letter
Rishabh Kashyap (Rishabh Das) Trustee, Manas Mitra
Have you ever fallen sick for more than a couple of days?
Maybe a week? or a fortnight?
In such times who took care of you?
Maybe your mother? father? husband? wife? or your kids?
While you as a sick person got sympathy from everyone, the amount of effort put in by the caregiver and the amount of exhaustion suffered by your caregiver often went unnoticed. Didn't it?
While the period of our sickness and the period of effort given by our caregiver are over by say a fortnight for some the night never ends, it runs through a lifetime.
Here we are talking about the segment of persons where people are suffering from mental health issues like autism, down syndrome, mental retardation, cerebral palsy, schizophrenia and other endless mental distresses. The caregivers of these persons breakdown, scream silently for they themselves forfeit their own right to seek help. Rather, they are often not recognized as an affected segment at all.
World wide latest research shows that the caregiving burden is so heavy that it breaks down the caregiver and ultimately makes him incapable of rendering proper care to his own dependent. Research further shows that the economic impact of these overburdened caregivers is huge on the society, as their capability and energy which could have been a constructive force to the society, is totally consumed in caregiving. So much so that these caregivers land themselves in extremely deep states of trauma and depression.
And this my dear friends is not a story , it is a reality of my own sister and her husband , who are parents to their autistic daughter. And I am an eyewitness to the external trauma experienced by them, while their internal despair remains incomprehensible. We have a family friend who conceived the idea of doing in depth research into the problems of caregivers and discovering solutions which are holistic in the true sense of the word.
Together we formed this organization called “The Manas Mitra” which means the Friend of the Mind. We have our motto which says “caring by sharing”. Our solutions are based on sharing the problems and sharing the solutions too, and for this we are working on bringing together the caregivers to live together on the concept of apartment based community living and farm based community living.
Our idea of farm-based community living is to seek relief by getting as close as possible to the elements of nature such as water bodies, plants, trees, farms and cows. We have also explored the wisdom of the ancient Indian Vedic text and other religions to incorporate different elements of spirituality in the daily routine of our communities.
After making a strategic plan in consultations with medical, legal, financial experts and thereafter an execution plan in consultation with architects and project managers, we are in talks with the government and the corporates seeking their help in the acquisition of land and financial resources.
Primarily as of now we are gathering the affected caregivers and other NGOs and they have given us an overwhelming response. They are excited about the idea of focusing on the caregivers as it is like watering the roots and giving water to the roots in turn nourishes the leaves , which in the analogy are mentally distressed persons.
At present we are working on developing an app and a portal which shall integrate the caregivers as well the mental health care professionals on a single platform. It shall serve as a tool for providing services on the ‘Urban Clap’ model and also become a potent medium for sharing resources, problems and solutions.
We are convinced (based on feedback received) that this caregiver-centric approach shall make a real difference to the quality of life of these families and holistically address their problems and concerns.
However, realization of this vision shall need valuable support from all quarters of the society -in cash, kind, resources and time. Everyone, including you can contribute by providing expertise-based services for development of apps, tech-interventions and solutions and so on.
Join us and make a difference!