A report by Aman Batish, Co-founder Manas Mitra & Panelist for the discussion
Schizophrenia Awareness Association (SAA) is a prominent peer support group for families of persons affected by Schizophrenia. The organization celebrates ‘Caregivers Day’ on September 10, the birthday of its founder Late Dr. Jagannath Wani. On this occasion SAA organized a panel discussion on the topic “Indian family caregivers of persons with mental illness: Stresses and Strains, Worries and Way Outs”.
The panelists included:
Anantha Agasthya (Member, SMHA, Karnataka)
Ratna Chibber (President, NGO ASHA & Co-founder Atmanirbhar, Chennai)
Aman Batish (Member, SMHA, Haryana & Co-founder NGO Manas Mitra)
Mamtha D (Member, CMHA, Bengaluru)
R.P.S. Kapur (President, NGO Prayatan, Chandigarh)
All the panelists are/have been caregivers to persons with mental illness (PMI) and have lived experience of dealing with mental illness.
The discussion was moderated by Sh. C. Ravindranath of SAA and initiated by an opening talk by Dr. (Cdr) Arnab Das. The objective of the discussion was to explore solutions and strategies for dealing with the problems faced by family carers in the process of caregiving.
A summary of the major points put forth by the panelists is as follows:
Dr. Arnab Das highlighted the need of being mindful of the impact of changing social context and environment while devising solutions for families of PMIs. He further stated that, institutionalization (creating institutionalized setups) is important for these solutions to work in a sustained manner. And, that people who have lived experience of dealing with mental illness can better relate with the problems faced by fellow caregivers, therefore peer support group based solutions are important. Most importantly, caregivers need to make extra efforts to remain a part of society/ ecosystem and not let themselves get cut off.
Madam Mamtha D talked about the cause and effect relationship between stress and strain. She also talked about how being a caregiver to a person with mental illness can make a person more compassionate and empathetic. And, further about the need for ‘assisted living’ based housing projects where family carers can live with PMIs as viable long term solutions to the problems faced by such families in context of such a project initiated by Sumana Trust at Bangalore.
Sh. RPS Kapur ji stressed on the fact that in case of mental illness the whole family is affected and not just the PMI. He further talked about the need for creating hostel-like mental health establishments for PMIs as the most practical solution to the complex problems faced by such families. He also expressed that caregivers also need help and they need to have a life of their own without getting trapped under the responsibilities of care.
Madam Ratna Chibber said that there’s a need for out-of-the-box thinking to provide solutions for the problems faced by families of PMIs. She mentioned that stigma is first in the minds of the caregivers themselves and therefore firstly it needs to go out from their minds before a change can be set in the society. She further highlighted that different caregivers have different ways out and different solutions work for different people, but most importantly ‘love, understanding and compassion’ cannot be replaced by medicines or anything else.
Ananth Agastya ji talked about the feeling of helplessness often experienced by caregivers and how to deal with it. According to him isolation (from society) is not a solution to this, but how ready we are to change ourselves is the key. He stressed about the need for therapy for caregivers. And, further highlighted that doing something to move beyond our personal problems (working for a collective/ social cause for example) is important and can help in such matters.
Aman Batish talked about adopting a structured approach to problem solving. Problems such as ‘What after us?’ and ‘How to manage when we get old?’ are common to caregivers across the domain of mental illness and such problems can be commonly resolved by adopting a caregiver centric approach/ model. He further talked about the stumbling blocks in resolving the day to day and long term problems of these families such as resource crunch and lack of trust towards paid help due to the vulnerable position of their loved ones. He said that the commonsensical solution to these issues is ‘Assisted living’ based group housings where such families can live together to share resources (such as paid care, therapy etc.), create a support mechanism for each other, supervise the care being provided to their loved ones and create an institution that can look after their loved ones after their demise. Thus all the problems and stumbling blocks can be taken care of. Moreover, this approach is not just commonsensical and cost effective but also evidence based as studies have shown the efficacy of such community based solutions. The NGO Manas Mitra is trying to start an assisted living group housing project for families of PMIs at Karnal, Haryana. Providing ‘home based assistance’ or ‘assisted home care’ with Government support can also be another solution.
Other important issues that were discussed during the questions and answers session were:
The role of Spirituality in dealing with the feeling of helplessness and as a coping strategy for caregiver stress. Aman Batish highlighted the benefits personally experienced by him in this matter and how spiritual understanding has helped him in learning to let go and not trying to over indulge and overly control situations, which can be counter productive. Dr. Arnab Das mentioned in this context that spirituality can perhaps work as a diversion and in that sense even one's profession can work equally well as a strategy. Ananth Agastya ji emphasized on the benefits of opening up (only to people who are receptive and supportive) and talking about the problems as an effective strategy based on his personal experience. Madam Mamtha D shared that (as in her case), caregivers are often not even aware that they are themselves under stress and need help unless pointed out by therapists or psychiatrists treating their loved ones. Sh. RPS Kapur ji said that, the feeling of helplessness begins the day a loved one is diagnosed with mental illness and the family realizes that the situation is lifelong, and perhaps the best way to deal with it is to ensure that there is a proper place (mental health establishment) to take care of the PMIs.
The role of Government and what can be expected from the government. In this matter, Dr. Arnab Das highlighted the importance of knowing the workings of the Government and most importantly of putting up the right kind of proposal to the right person. Aman Batish echoed the view and highlighted the need for advocacy but without being unpragmatic. The expectations from the Government should be realistic. For example, if there’s a resource crunch in the country, the resource crunch is for the government too. Even if the Government starts building capacity for resource generation, it cannot happen overnight. Therefore, it would not be prudent to expect miracles from the government. Moreover, it may not be possible for the Government to become a ‘provider’ every time; sometimes it can only be possible for the Government to become a ‘facilitator’ or an ‘enabler’. In fact, private endeavors and entrepreneurship in collaboration with Government can help create better and swifter solutions.
It was a very interesting and fruitful session, and hopefully, beneficial and insightful for all caregivers. It was a privilege for me to be a part of the panel for this discussion.
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