For the past 27 years, I have been a caregiver to my daughter Richa who lives with schizophrenia, and over the past few years, to my wife, who recently had a recurrence of cancer.
As a child, Richa did not enjoy many things that her peers did.
For the past 27 years, I have been a caregiver to my daughter Richa who lives with schizophrenia, and over the past few years, to my wife, who recently had a recurrence of cancer. My wife, 72, four years younger than me, worked with a famous hotel chain. I worked in a bank in Mumbai. In the late 80s, we decided to send our teenage daughter to a boarding school in Dehradun.
As a child, Richa did not enjoy many things that her peers did. I never forced her to excel at any activity, but I encouraged her to learn horse-riding, Bharatnatyam, and tennis. She did not get along with her teachers, and disliked any kind of physical display of affection. We could never imagine that these could be early signs of a mental condition. Anyone with schizophrenia should never be sent away from their place of comfort. This, of course, we learnt much later.
In early 1991, while I was in my office at Mumbai’s World Trade Centre, I received a call from Richa’s boarding school that she had suffered a nervous breakdown. On reaching Dehradun, I saw that she looked disoriented and our conversation was erratic. A psychiatrist misguided us by saying that this was an isolated incident and did not warrant medication.
After school, Richa got through to a prestigious art school in Gujarat, but we brought her home soon after, as her condition had deteriorated. We feared that she might harm herself or us. When she complained of being troubled by voices, a psychiatrist diagnosed schizophrenia, a mental condition marked with hallucinations and delusions. My wife quit her job to become Richa’s full-time caregiver.
Richa refused to take the prescribed medication, so we would mix it in her food. Those were very difficult years for Richa and us. My neighbours feared that she would assault their children. Richa would often assault my wife and I. We hid all the kitchen knives. We also sealed our windows so that she would not be able to jump out of them. Addressing the stigma around mental illness is very important. I would try to explain to our neighbours and other family members that it was not Richa’s fault that she behaved in that manner. In fact, it was not anyone’s fault—not my wife’s, not mine. It’s not a sin to have a mental illness either. The fault, if one must find it, is in the lack of information available. If we had information about schizophrenia when Richa’s illness was triggered, it would not have got chronic.
In 1993, Time magazine wrote about a wonder drug which had a very high success rate in the treatment of schizophrenia. It was not available in India, so I imported it from Switzerland. It was costly— a strip cost Rs 7,000 and I had to pay import duty because it was not classified as a lifesaving drug. Her condition improved, but side effects included drowsiness and drooling. Around this time, Richa enrolled in another art school, but discontinued her drug for a few months to try out alternative treatments. This made her condition worse and she had to drop out. That’s why I always tell caregivers that they must never allow the person to stop a medicine or self-medicate, but follow their psychiatrist’s advice alone.
In 2007, I quit my job to become a full-time caregiver. We moved to Pune after I found out about a rehabilitation centre run by the Schizophrenia Awareness Association (SAA), a not for profit organization. I would take Richa to the SAA’s leafy campus to spend the day. Today, 42 patients of different mental illnesses, including schizophrenia, bipolar disorder and Post Traumatic Stress Disorder, visit the rehabilitation centre. They do a host of activities from gardening and art-based therapy to music and dance therapy. We also encourage fairly stable patients to hold sessions for others, for which they get paid. Richa teaches English and supervises the outdoor games session. The feeling that they can earn is vital to their recovery.
We were often told to get Richa married. This is terrible advice. Not only should one not marry without disclosing one’s condition, it is also a common misconception that marriage will help resolve the mental condition. Almost all the patients who come to the rehabilitation centre have no partners. One of the things we do for those who manifest strong sexual urge, is to hold sex therapy sessions for them, in consultation with their families, where our sex counsellors educate them about single/self sex. After all, mental illness does not make a person devoid of physical desire.
We now have a highly progressive Mental Health Care Act. I have closely followed and participated in deliberations related to the drafting of the Mental Health Bill at various stages and was a member of the Expert Committee constituted by the Ministry of Health and Family Welfare to draft the rules. The Act offers a host of treatment-related benefits which include free delivery of essential drugs, free legal aid and insurance. The Act’s provision for an advance directive and a nominated representative create some practical difficulties for caregivers who are family members, but it is overwhelmingly beneficial for persons with mental illness. It provides adequate representation of caregivers and those who have experienced mental illness in the central and state Mental Health Authorities and District Review Boards. It also asks the state to open half way homes and create additional seats in medical colleges for mental health professionals. It will not be an exaggeration to say that good days are ahead for the mental health sector.
All caregivers worry about what will happen after they die. I have made a private trust to take care of Richa when my wife and I are not here. The trustees will ensure that Richa gets a steady income for as long as she is alive. After all of us are gone, the trust will be dissolved. The fixed assets will be donated to this organisation or any other organisation working for persons with mental illness, while the liquid assets will go to any organisation working for cancer patients.
Bakhshy is president of SAA since 2010, and has authored a book on mental health and caregiving, which is available in English and Marathi. He is also on the Institution Body of NIMHANS and chairperson of their Hospital Management Committee.