My Daughter has Schizophrenia for the last 25 years
Amrit Bakhshy recounts his brave though agonizing journey of caring for his daughter, Richa, who developed schizophrenia as a teen in school and his tireless effort to build better lives for people with this mental disorder.
Panic and Bewilderment
A long distance call in early 1991, in my office at the World Trade Centre, Mumbai changed our lives forever. The caller was the principal of a well-known girls’ school in Dehradun, where my daughter Richa was a boarder. Richa had a sort of nervous breakdown and was in school’s infirmity ward. My wife was in London sent, on a long term deputation, by her employers. I flew to New Delhi the same evening and reached Dehradun the next morning. Richa looked a little disheveled and her talking seemed a bit erratic. Her principal and teachers said the treatment had helped her.
Groping in the dark
Richa came back after her exams. We had no idea what we were in for. Our gross ignorance, indifferent psychiatrists, their unethical conduct and prevalent stigma did to Richa 25 year back, what continues to happen even today to millions of young persons in India and elsewhere. We were wrongly advised by a professional that it was just a single episode and further medication was not required. Consequences soon followed.
Symptoms reappeared with intensity. Richa refused to see a psychiatrist, refused medication, spent sleepless nights, starved herself, became aggressive, threatened suicide, screamed and cried at unfriendly voices torturing her. Her studies had to be discontinued and my wife left her job to be at home with Richa. As millions of families are compelled to do, we also resorted to covert medication which helped in taking her to the psychiatrist and in treatment compliance.
Treatment continued for years; typical drugs, atypical drugs, even ECT (electroconvulsive therapy). Numerous permutations and combinations were tried. But the treatment did not help much in abating the symptoms. Our ignorance and other unfriendly factors had made her illness chronic.
Rituals, Prayers, visits to shrines
My wife who, due to her so called progressive background did not follow any traditions and customs and ridiculed those who indulged in rituals, started performing the rituals advised and prayed for hours. Most of the shrines in the country, known to have healing powers were visited. Many healers were visited and many called home and rituals and prayers performed. Cows, goats and hens were donated. Halfheartedly, I became a part of it but made it clear that my daughter will not be touched to bring the evil spirits out and no animal or bird will be sacrificed.
A Ray of Hope
I think it was in 1994, that the Time magazine, in one of its issues carried the lead article on ‘clozapine’a new wonder drug for schizophrenia with 94% success rate. Richa’s psychiatrist told me that the drug was not yet introduced in Indian market. Through a friend in Switzerland, I managed to get clozapine at a prohibitive cost, after completing quite a few formalities.Clozapine helped; symptoms receded. Richa joined a professional course in a prestigious college and also managed to clear the first year. There were side effects. Every morning her pillow was soaked with drooling and it was an ordeal to wake her up. She also required regular blood monitoring. The remission did not last long.
Unawareness leads to blunders
Richa and her mother, when in Dehradun for summer vacation discontinued her antipsychotic medicines as advised by a renowned homeopath. After a period of detoxification, he put Richa on homeopathic medicines. Richa’s psychiatrist was worried and strongly urged restoration of clozapine. My wife did not listen. Side effects of clozapine had disappeared, which mother and daughter gave the false sense of comfort.
On their return to Mumbai, symptoms reappeared with much more intensity. Some more time and money was wasted in Reiki treatment. Ultimately the sense prevailed and clozapine (available in India), was reintroduced. But, what 100 mg. of clozapine had achieved, 300 mg. could not achieve. A renowned psychiatrist from Bangalore opined that clozapine was not tried enough and we could go up to 700 mg. Richa’s attending psychiatrist in Bombay was not comfortable with such high dosage but agreed reluctantly. Slowly the dosage was increased to 700 mg. Richa got 2/3 seizures and her clozapine dosage was brought down to 500 mg. Her symptoms did not come down and she had to discontinue her studies.
Mecca of Indian Psychiatry disappoints
In 1996, Richa and her mother spent 9 months at NIMHANS Bangalore, the ultimate in psychiatry. As clozapine did not help and risperidone (an antipsychotic medication) was being experimented. It was tried on Richa but in between she was not on any medication for a period. It did not help and she came back to Mumbai.
We would hide kitchen knives as Richa would get aggressive. My wife was the main target as she would check her and give her back. I would always keep a cushion near me to protect myself. Our maid servant, the driver and visitors were also assaulted and abused. Neighbours protested; they feared the safety of their children. She would run out of the house; unable to chase her, I would call the driver to look for her on the streets. On one occasion, I had to even lodge a missing complaint with the police. We always feared her getting caught by bad elements, raped and killed.
Unawareness to Awareness
I tried to learn about the illness as much as I could from books and internet, joined a caregivers’ self-help group and attended workshops. I also collected information as to where my daughter had the best chance of recovery. By the end of 2006, I felt that I had reasonable savings, understood the illness and it was time to leave my job, be a full time caregiver to my daughter and move to a city which provides the best environment for her recovery.
A gamble that paid
I decided to move to Pune, lock stock, and barrel. Pune had a day rehabilitation centre run by Schizophrenia Awareness Association. Richa was unwilling to leave Mumbai. We heaved a sigh of relief when she finally sat in the car and we left for Pune.
Richa was in bad shape when we moved to Pune. She was not cooperative with medication and also was most unwilling to go to the rehabilitation centre. But I did not give up. There were days, when we would reach just one hour before the closing time. Slowly she started liking the centre.
For more than one year, I was going with her and bringing her back. My presence was required to manage emergencies which were not infrequent. Later, my wife took over and started volunteering during the day.
Much water has flown under the bridge since 2007. In 2010, I became the president of Schizophrenia Awareness Organisation where I brought my daughter as her caregiver. As a mental health activist caregiver, I now head the Hospital Committee of NIMHANS, where once my daughter came as a patient.
Richa is fairly stable; she has insight and is able to manage her symptoms. She attends the centre as a user and also as a volunteer. She gets paid small amounts for the work she does which helps in building her self-esteem. In between, she also worked as a part time in an art studio for 18 months.
Way back in 1972, I had became a proud parent of a cute little bundle of joy. Eighteen years later in 1991, the destiny made me her caregiver also. In 2007, I became a parent plus a caregiver plus a volunteer for the cause of those with mental illness and their families and in 2010, I joined the mental health movement as a full time activist. Now a parent, a caregiver, a volunteer and an activist, the journey will continue till the end. I have made supportive arrangements for Richa after us and get great satisfaction in my role as ‘’agony uncle’’ 24 hrs a day, 7 days a week.