MENTAL ILLNESS AND CAREGIVING by Amrit Bakshy
Some time ago I posted a review of Dr. Atul Gawande’s book ‘BEING MORTAL’. This book deals with the author’s confrontation with terminally ill patients, the aging and dying. The book traces the slow development of palliative care from Nursing Homes to Hospices to Assisted living. It lays bare the reality of aging and increasing dependence. I found it disturbing. In Gawande’s own words, “Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. We have been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
I found these words of Dr. Gawande echoing in my mind when I sat down to review Amrit Bakshy’s book ‘Mental Illness and Caregiving’. May be I used the wrong word when I said ‘review’ for I am in no way qualified to do this. This is a book which within its pages (200 and odd) places before you all that you wanted to understand about mental illness and how one goes about handling with it. Written by a person who had undergone the trauma of dealing with a daughter who was affected with Schizophrenia and who along with his wife learned to cope with the situation and ensured that his daughter could lead a meaningful life in the long run, this book is an authentic guide to all caregivers and the affected. Mr. Bakshy who had taken early retirement from his job so that he and his wife could take care of their daughter is now the President of the SAA (Schizophrenia Awareness Association) in Pune. He is also the Chairperson of the Hospital Management Committee of NIMHAANS.
The book was sent to me by a friend and I am thankful to him. While going through the book one realizes how little the awareness of mental health is among the general population. The stigma attached and the utter hopelessness we find ourselves in tackling such a condition in a family member (or in ourselves) has perhaps contributed to the large unattended cases of mental illness amongst us. Bakshy says that first of all the family has to accept that a family member is having mental illness and needs treatment urgently. Once the family accepts, it becomes relatively easy to convince the family member to go and get professional help.
The book is divided into four parts –
1) Orientation – covering the basic information to the caregiver regarding the various types of mental disorders like Neurosis and Psychosis (though the author says that this broad classification is no longer valid), the impact and role of the families, the caregiver, barriers to treatment, medication and side effects.
2) Theories, Therapy and Treatment – providing guidance on the various issues that arise during the process of caregiving
3) Empowerment – compendium of important legal issues involving the rights of patients, mental health etc
4) Annexures – provides important references.
Why has it been so hard for us to accept the reality of mental illness? If we introspect we shall see that all of us are in some way or the other mentally sick in varying degrees. While it is easy for us to accept that a part of our physical body has been diseased (even a common cold or flu) and rush to a doctor for treatment, how many of us will accept that he or she suffers from OCD or some form of neurosis which is a mild form of mental disorder. Bakshy defines Neurosis and Psychosis in the book –
‘Persons with neurosis remain in contact with reality (no delusions, or hallucinations) and understand that they have a condition affecting their daily chores, but feel helpless. They have inexplicable anxiety at the subconscious level – anxiety, depression, phobias, eating disorders etc.’
‘Psychosis is manifested by a loss of contact with reality. Persons with psychotic disorders do not accept they have a problem. They live in a world of delusions and hallucinations. They lose touch with reality like Schizophrenia, Manic Depressive Disorders etc.’
Years ago when I was in Baroda, we had arranged as part of the social service activities of the Bank branch which I was heading, a visit to a hospital for the mentally ill and serve the inmates lunch. We have come a long way from calling such places as a lunatic asylum, such a derogatory way of describing it, but we did and that was the reality then. If you ask me now what we accomplished, I will truthfully answer that it was part of meeting targets under the Bank’s programs. But I remember that visit even now for it was the first time that I came to closely observe the life inside. It was unnerving and at the same time depressing. It has taken a long time for that experience to take root within me and now when I read this book of Bakshy, I realize that to really make a difference and be a catalyst for transformation it requires tremendous amount of sacrifice and courage and that’s what sets people like him apart. If you ask me now whether I have read the book, I shall say no for the value of the book lies in our understanding and acceptance of the fact that there is such a thing as mental illness and us playing a proactive role in mitigating the trauma such people undergo.
It would be necessary for me to quote Mr. Bakshy’s own narration of the transformation that happened in his life –
“Looking back I remember my becoming a proud father of a bundle of joy in 1972. Eighteen years later, in 1991, destiny made me her caregiver. In 2007 I became a volunteer for helping those with mental illness and their families and in 2010 I joined the mental health movement as a full time activist. The journey continues. I have made arrangements for Richa after my wife and I are no more. I get great satisfaction to be ‘Agony Uncle’ of the community of caregivers.
I feel I have an unending responsibility towards my daughter and the mental health community, so this journey will continue as long as I am functional.”
I wish and hope that Mr. Amrit Bakshy will be able to reach a wider audience through his book in his efforts to create an awareness of ‘Challenges, Concerns and Complications’ in dealing with mental illness and its mitigation.