Recovery From Schizophrenia (Our Success Stories)
And what does it mean to all of us at SCARF?
As doctors, therapists, psychologists, social workers what we want most is for the person under our care to recover, to improve and eventually, to get cured. Unfortunately the latter a complete cure is not always possible, especially in the case of disorders like diabetes, hypertension and osteoarthritis, among others. The same s equally true of some disorders of the mind, including schizophrenia, which is often described as the ‘greatest disabler of youth’ and a ‘cancer of the mind’.
But the silver lining on the cloud is often brighter than we often realize! Many, many persons who are diagnosed with schizophrenia at least one third, on average make a complete recovery and are able to lead normal lives. What are the factors that help them achieve this level of improvement? To a large extent, recovery depends on access to comprehensive care and treatment, ideally as early in the course of illness as possible. Equally important is the role of families, and the support a person with schizophrenia receives from those around him or her.
This treatment and support for persons with schizophrenia has been our focus at the SCARF since 1984. We have been and continue to offer various kinds of treatments and interventions that address the diverse needs of our patients and their families.
We are both grateful and proud that, in the almost three decades since we first took on this responsibility, we have been able to significant level of success in caring for our patients. It must also be said that there are several persons who have improved only marginally despite the highest quality of care, echoing patterns seen globally.
In this compendium, we are delighted to share with you stories and case histories that illustrate our successes. We have included stories from both our urban and rural interventions as well as centre-based and community-based work. Through each of these narratives, what we wish to emphasize is that there is no one single treatment package that fits all. Some people may improve with education alone; many others will require psychological and social methods of treatments including counseling, family education and cognitive behavior therapy in addition to medication. What is essential is to spend the time and effort to understand each individual’s specific requirements and customize the treatment process accordingly.
I must add that treating persons with schizophrenia isn’t just about the science of mental illness. Equally important–even mandatory! are a strong sense of commitment, empathy, humane understanding and a big, massive dose of pragmatism.
Dr R Thara, Vice Chairman
When we first saw Sumita fifteen years ago, In 1997, Her hands were tied behind her back and she was brought restrained by two male neighbors. Her then 80-year-old mother had brought her to SCARF, Unable to cope with Sumita’s state of agitation. Some initial probing revealed that Sumita had been ill for at least seven years.
It all began about three months after her marriage, With sleeplessness, A lack of interest or involvement in household tasks and marked suspicion, Invariably directed at her husband. Unable to manage her, Sumita’s husband sent her back to her mother’s home. Despite her disturbed state, Her family chose to not seek any medical treatment, Primarily because Sumita was pregnant at that time. She delivered a healthy child but remained ostracized by her husband, Who refused to take her back. The baby was an additional responsibility for Sumita’s aged mother who worked as a cook and all three of them were, From that point onwards, Dependant on one single income for subsistence.
For the next three years, Sumita’s mother visited several religious healers, Seeking a cue for her daughter. At some point, They found their way to the local General Hospital’s psychiatry unit, Where Sumita was diagnosed with schizophrenia and initiated on treatment. Not surprisingly, She refused to take any medication, Suspicious of their effects. With no real knowledge or understanding of schizophrenia and little support from anyone else, Her mother eventually gave up, Despondent at her daughter’s condition.
Inevitably, Sumita’s condition worsened until one day, She became very violent and beat up her child, Injuring her badly. Her mother’s employers, Who had read about SCARF in a newspaper article, Urged her to bring Sumita to us for treatment. At our outpatient center, Sumita was initially hostile, Refusing talk to the doctor and spitting out all the tablets we have her. We admitted her to our residential facility, Bhavishya Bhavan, Waving all charges in recognition of her mother’s financial difficulties. Within a week, Her agitation reduced and she calmed down enough to shift from injections to tablets.
Once Sumita was relatively less agitated, Our next step was to identify priority areas for rehabilitation. Our long included helping Sumita deal with her anxieties, Supporting her to further calm down, Improving her personal cafre habits and establishing routines, Ensuring she took her medicines regularly, And eventually, Helping her understand the need to earn a living.
Our team at Bhavishya Bhavan focused on each of these priorities, Listening patiently to her ranting. It was evident that this was Sumita’s first opportunity to voice her anger and distress at being abandoned by her husband. We encouraged her to take on simple routine tasks in the kitchen and her mother continued o visit her periodically.
Two months after she was admitted, Sumita was discharged and asked to attend the daycare center at Anna Nagar. Here, we drew up a schedule of activities including attending group therapy sessions, Behavior management training and learning relaxation techniques. In the same period, Sumita’s mother attended our sessions for families, Finally getting some support herself. We also enrolled Sumita’s daughter in our support program. For children, Ensuring she was admitted to a local school and providing financial assistance to pay her fees.
Over the course of the next year, Sumita became increasingly willing to take medication regularly, Her symptoms reduced markedly and her functioning improved in all areas. She also began to express a strong need to earn a living and proactively approached a local dental clinic for a job. Sumita now works as an assistant in the clinic, is able to take care of her child and is urging her mother to retire from her job and get some well-deserved rest. Sumita has one clear ambition to continue to work, Augment her income and support her daughter through her life.
This a true story of a brave woman who found her way back to life from the depths of despair. For us, Sumita’s story illustrates the very real and complex difficulties that single woman-both Sumta and her mother, In this case-face in simultaneously coping with Schizophrenia, Earning a living and raising a young child.
When Vivek first came to SCARF, He had been ill over 22 years and had not worked for at least the last three. Separated from his wife and children for over a decade, Vivek was living in a garage owned by a family friend, And working, At least on paper, For a quasi government establishment. It was this friend, Dhanya, Who brought Vivke to SCARF. At that point, Vivek had been wandering around aimlessly, Shabby, Unkempt, Talking to himself, And occasionally making threatening gestures at passerby.
Vivek described his life at length the ‘disturbing thoughts’, ‘those people who kept telling him what to do’, The ‘voices’, He said, Who constantly troubled him. He felt others were ‘controlling his life’ and people on the road were ‘threatening him’. He reported that there were many people, Both within the family and outside, Including strangers, Who ‘would destroy me, If I let them’. He mentioned his habit of borrowing large sums of money for no particular reason, And the subsequent cycle of debt he was trapped in. he also added that he’d never felt the need to visit a doctor nor had he felt that there was anything wrong with his behavior. It was ‘all those persons around me who are the problem, They need to told to keep away from me’.
It had been over a decade since his wife had given up on him moving back to her parental home with their two daughters. Vivek’s inability to go to work regularly and therefore, The lack of money to run a basic household, Was the last straw for his wife, Who was disabled by osteoarthritis and needed a lot of help to move around. After her departure, Vivek sold household articles whenever he needed money. He visited his family infrequently, And often only when he needed money. It took us over seven months to convince Vivek to share his wife’s address.
Vivek had a troubled employment history. He rarely completed assignments on time; he quarreled incessantly with colleagues and often roamed restlessly around the office, Unable to sit in his chiar for long. He frequently took leave from work, often without pay. At the time we first met Vivek, His employers had transferred him to a rural office, Probably hoping he would resign. However Dhanya – who was also an acquaintance of his employer-stepped in and got the transfer rescinded. She also persuaded him to visit SCARF; Vivek however remained annoyed with her for ‘interfering with his life’. Despite this Dhanya was persistent, Allowing him to live in her garage, Ensuring he took his medication and helping him with both food and clothing whenever he ran out of money, Which was often enough.
After a detailed examination that indicated a diagnosis of schizophrenia, We identified three main areas of intervention for Vivek – improving his performance at work, Inculcating some basic money management skills and ensuring he complied with his medication routine. We gave him free medicines but were never sure whether he was actually taking them, Especially after he reported being convinced they would harm him. After much persuasion, Vivek agreed to take long-acting depot injections every fortnight. But this was no easy task either and took the combined persistence of our social worker and Dhanya to ensure he came to SCARF every two weeks. At times, We sent someone to Dhanya’s home to bring him to the centre and this tug-of-war continued for three months until Vivek finally agreed to come on his own.
All this while, Vivek’s employers had no idea he’d been ill and were keen to somehow get him to quit voluntarily. We visited the office regularly, Explaining his case, And emphasizing the importance of regular treatment. Over time, as they witnessed the gradual improvement in Vivek’s performance at work, They overcame their initial resistance and today, Often remind him to visit us for follow-up sessions.
Teaching Vivek money management skills was a formidable challenge. We began six months after he first visited SCARF and persuaded him to show us his salary certificate. A large part of his salary went towards repayment of various loans. Over the course of several weekly discussions, Vivek learnt basic budgeting and accounting for his expenses. We also convinced him to send his wife a small but invaluable sum of money every month, Which is today used to support their daughters’ education. On this front, Our work is far from complete and we remain vigilant for lapses, For any sign that Vivek is returning to his previous, Somewhat reckless ways.
There is no doubt that Vivek has come a long way from the unkempt, Restless wanderer he was. For us, His story illustrates the very tangible correlation between mental illness and homelessness, Particularly when no family support is available. Most of all however, Vivek’s story reminds us of the crucial long term role played by social workers and friends, Like Dhanya, Who stepped in to help when she needn’t have. It was really her tenacity and determination that led Vivek to SCARF, And to recovery.
Bano is 28 and her story began almost a decade ago. The youngest of eight children, Bano completed secondary schooling but didn’t pursue her education after that. Her four elder sisters and three elder brothers are married and live with their own families. She lives with her aged widowed mother on the family property, And the family runs a hardware business.
Bano was only 20 when she first became ill, Shortly after her engagement was called off as the result of an inexplicable misunderstanding. She was often irritable and her family, Who did not understand her behavior, Attributed it acute disappointment. Not much later, Bano was married to a businessman based in Mumbai. But less than six months after the wedding, Bano’s new family sent her back to her parental home, Complaining that she was very ‘problematic’ and ‘unmanageable’. Her mother-in-law complained that she was constantly irritable and did not show any initiative to help with work at home.
It was at this point that her family-mother and brothers–realized that she may need professional help. Bano was taken to a psychiatrist and was diagnosed with schizophrenia. She began treatment and showed really good improvement for almost a year. At this point however, Her family, Assuming she was really cured, Insisted she stop her medication and everything spiraled out of control once again. At the same time, Bano also received divorce papers, Further worsening her state of mind. And sure enough, Her irritability, Restlessness, Sleeplessness and anger all returned. She began treatment again, Improved once again, And in an identical conclusion to the pattern of events was told to discontinue her medicines. The reason? Her family felt the ‘sleeping tablets’ caused her to lie in bed all the t ime, Not helping her mother with any household work.
One year later, Bano was first brought to SCARF by her family. She has been severely agitated and violent for two days and not surprisingly, Refused any medication. On examination, We found that she had auditory hallucinations and heard voices abusing her and threatening to kill her. She was convinced that her family was plotting against her and consequently became very ciolent. She was hospitalized in an acute care facility for a week, Before being transferred to Bhavishya Bhavan at Thirverkadu, Where she remained for six months.
We identified three priority areas to help Bano get back on her feet-initiating a sense of routine through a daily schedule of activities, Ensuring she took her medication regularly and instilling a sense of purpose through appropriate work. Bano was introduced to a structured schedule including personal care activities, Group work and vocational training. She needed considerable persuasion at the beginning but soon followed the routine without prompting. Bano also participated in group therapy sessions, Giving her an opportunity to talk about her early experiences, Particularly her failed marriage.
She also learnt about the early symptoms of relapse. Finally, Bano learnt the art of Batik painting at the centre’s workshop. She of course also continued to attend one-on-one counseling sessions.
During the period that Bano stayed at Bhavishya Bhavan, Her family remained involved in the rehabilitation process. Although her mother was the primary caregiver, Her worsening health made it difficult for her to visit the centre regularly. Bano’s younger brother and his wife became secondary caregivers; her sister-in-law was keen to learn more about schizophrenia and symptom management in particular. She also took the time to understand the medication, Its intended effects and dosage. Most importantly, The couple attended regular family education sessions at SCARF learning all about the signs and symptoms of schizophrenia, About long-term treatment, And the potential triggers for a relapse.
Six months after Bano entered the residential centre, She was discharged but continued to attend our daycare centre regularly for a further six months. Here, She worked in the handicraft unit and the canteen and attended individual counseling sessions with our social worker who stressed the importance of taking her medicines regularly as well as the need to remain active. Bano was also given a structured work schedule at home, Which was monitored by her sister-in-law.
Bano soon expressed a desire to take up a course in tailoring and dress designing, And enrolled in a nearby women’s Polytechnic College for one year. She attended the course three days a week and came to the daycare centre on the remaining days. Though she completed the course, She was reluctant to take the exams but continued to work at the tailoring unit we operate at SCARF. Her family was delighted at her improvement and she would take her medication on her own regularly although her mother and her sister-in-law remained vigilant. Soon, Her sister-in-law found her a job as a helper at an export garment factory.
Since then, Bano has adhered to her treatment, Taking medication regularly and also attending scheduled reviews. It has now been five years since her last relapse.
Bano’s determination to venture back into the world is testimony, Most of all, To her own courage and resolve. For us, Bano’s story exemplifies the difficulties faced by a young woman who is abandoned by her husband, And the invaluable role of a supportive family in the rehabilitation process.
Today, Forty-year-old Rakesh is employed in an auditing firm, After a two-decade-long battle with schizophrenia, Multiple admissions to different treatment centers and years of resisting medication.
Rakesh was born the youngest of five siblings, With three older brothers and one sister. He grew up in a joint family and had, In his own words, ‘A very conservative upbringing’, Particularly with respect to socialising and participating in any recreational activities. Following a brilliant academic performance at school, He enrolled in a course for a graduate degree in Commerce.
Simultaneously, Rakesh also began preparing for a membership examination to the Indian Institute of Chartered Accountancy.
In 1981, at the age of 19, Rakesh-most unexpectedly-failed his intermediate Chartered Accountancy exams. His family was upset and shaken by this, His first ever failure. Gradually, they observed that he was becoming increasingly irritable, often for no apparent reason.
He began to isolate himself, Rarely leaving home and constantly complaining that his failure was the result of a deliberate plot by the Indian Institute of Chartered Accountancy.
Assuming that he would become ‘normal’ eventually, The family waited patiently. Sure enough, Rakesh seemingly recovered was soon employed by an auditing firm. He worked there for two years, During which time he also passed both his intermediate and final examinations. He however continued to harbor the thought that ‘people at the Institute’ were watching him and would ensure that he did not succeed in life.
Rakesh next worked in the finance department of a leading software company. This job was in another city, away for his family for the first time. Moreover, He didn’t keep in touch properly and for almost two years, His family was unaware of any change in his behavior.
That is, Until January 1984, When he arrived home, Having resigned his job. His explanation – the people at the Institute were responsible for his resignation. Rakesh told his shocked family that he would never seek another job and refused to listen to reason from anyone, Including his puzzled father. He began to withdraw from conversations and no longer spent any time with his family. He often lay awake at nights, Pouring over his textbooks and vigorously taking notes. He However refused to let his family see these notes, Merely telling them to wait and watch for a miracle. When they persisted, He became increasingly irritable and angry, Once beating up his father ‘for colluding with the Institute to destroy his career’. That was when his parents decided to consult a psychiatrist.
Rakesh was taken to a private psychiatrist in Chennai and diagnosed with schizophrenia. Over the next three months, There was a gradual improvement in his clinical condition. He got another job, He bought a motorbike with his savings and overall, His family was thrilled with his recovery. But this turnaround was short lived and Rakesh soon began missing appointments with his doctor. His family was unaware that he was no longer taking his medicines properly, Nor did the immediately realize that something was wrong at work as well, Until he didn’t go in for almost a week at a stretch.
Rakesh’s family spoke to his employer, Only to find out that he had resigned and collected his severance pay. His manager also revealed that he had been behaving ‘abnormally’ for the last month. And on his personal computer at work, His father found several letters charging the Institute of Chartered Accountancy for ‘conspiring to destroy his career in auditing’. In his resignation n letter, Rakesh had stated that he firmly believed that his employers were involved with the Institute of Chartered Accountancy in the conspiracy.
Rakesh’s parents had only one option to coax him to return to the psychiatrist. But unsurprisingly, he refused, breaking the television at home and beating up his father once again. He was forcibly admitted to a private psychiatric hospital for treatment, where he remained for over a month. When discharged, he refused to go back home and his family rented a small apartment for him. He lived alone for six months, with his parents monitoring his medication schedule daily. He continued to refuse to seek employment but urged by a friend and former colleague, undertook freelance accounting assignments at home.
And then, Unexpectedly, Rakesh’s mother died. This had no discernible impact on him, As one of his siblings noted, ‘He seems to have lost the capacity to express his emotions. He was very close to mom, Yet he did not even react to her death!’ during this personal crisis, The family did not supervise Rakesh as closely as before. On the whole, Preoccupied with their grief, They left him alone, Even when he refused to participate in his mother’s death ceremonies.
One day, Not long after, Rakesh’s father received a call from his landlord, Who informed that Rakesh hadn’t been seen for the last four days, That newspapers were piling up outside the front door and that there was no response to the doorbell. On forcing open the door, They found that Rakesh was sitting in his room in a daze. Papers were strewn all over, As were several packets of partially eaten, Rotting food. His personal computer had been smashed.
Rakesh was once again admitted to a facility, Where he remained for one month. As he could not go back to the rented apartment and his family was unable to manage him at home, He was admitted to a residential facility and lived there for the next year. When he was discharged from the facility, he was referred to our daycare centre for further management, And that is how we first met Rakesh. At the daycare centre, He willingly participated in rehabilitation programmes and often told us about his desire to start his own auditing firm. He returned home to live with his father during this period. Six months later he informed his father that he wished to take up an assignment in Pune. Despite his family’ s hesitation , He moved to Pune, Continued taking his medication and also stayed in touch with us at SCARF.
By Now, it had been two years since Rakesh’s last relapse and his family was keen that he get married; a grand wedding followed soon after, With his full consent. But soon after, His wife disclosed serious problems in their marriage including Rakesh’s poor sexual functioning and his inability to consummate their relationship. She accused Rakesh and his family of cheating her, by not revealing his medical history before the wedding, and walked out of the house. Unable to handle this, Rakesh relapsed and had to be admitted once again. The vicious cycle continued he was discharged, Went home to live with his father once again, But remained hostile and uncommunicative. He also refused to return to the daycare Centre and took his medicines with great reluctance. And then, Inevitably, Another relapse and increased aggression, Particularly towards his father whom he blamed for the breakdown of his marriage and career. Rakesh was back in residential care, This time admitted at out Mahabalipuram cantre, Where he lived for a year and a half.
During this period, Rakesh attended regular Individuvak counseling sessions; simultaneously, Our occupational therapist focused on finding him a suitable job. His father managed to track down Rakesh’s friend who ran an auditing firm and who agreed to employ him once he was discharged. We also insisted that his family attend our family education programmes, so that they received the support they needed as well. At these sessions, We specifically focused n his unpredictable violent behavior. His family was however reluctant to take him back home and in fact, Insisted that they preferred to admit him in our custody for his lifetime. But we persisted in helping them understand how to identify and deal with possible aggressive outbursts, And Rakesh eventually returned home.
He began working with his friend and continues to visit us frequently for reviews. Rakesh’s last relapse was five years ago. He lives with his father, Even managing the household when the latter was critically ill. Rakesh has resored his equation with his siblings and is very productive at work, Even traveling outside Chennai for meetings. After the detah of his father, Rakesh now lives with his sister and her family. He continues to attend both work and review session at SCARF regularly.
To all appearances, Radhika’s had a good life. From an upper middle class family, Her father, A professor at a leading city college and her mother, A creative homemaker, Were wonderful, supportive parents. She was very bright, Stood first in school and completed a Masters degree in Science.
The first sign of distress was when she enrolled in a MPhil programme. Radhika was attracted to a classmate who unfortunately did not reciprocate her feelings. Dejected, She took the drastic decision to drop out of the course, And eventually transferred to another college in New Delhi, No doubt hoping for a fresh start.
But that wasn’t to be. Unable to cope with the cumulative stress and unforeseen changes in her life, Radhika had a breakdown. She was treated as an outpatient, With both medication and regular counseling. But as soon as Radhika showed the slightest signs of improvement, She stopped her medication.
Assuming all was well, Radhika joined a college as a lecturer, The first of many brief positions. In the next couple of years, Radhika began and abandoned six different jobs, unable to find her feet and settle in anywhere. Until finally she stopped working together.
When we first net Radhika three years ago, She had convinced herself that there was no need to work. By now, She had a strained relationship with her family and would often seclude herself in her room, Both literally and emotionally. Radhika believed that her bathroom was fitted with cameras, And insisted on waking up early in the morning, So she could bathe in the dark, With her clothes on. She was also sure that her neighbors were spying on her, And talking about her, And she often chose to barricade her room, Keeping all doors and windows shut.
Eventually our team developed a good rapport with Radhika and urged her to take her medicines regularly. Over many sessions including some on cognitive behavior therapy and insight-oriented therapy, We explained to Radhika that her thoughts were imaginary and encouraged her to write them out elaborately. We also taught her to rationalize her thoughts using different coping strategies, And she gradually developed an understanding of her own condition.
Simultaneously, We also spent time talking to her parents; her father acknowledged that his strained relationship with his wife had no doubt affected Radhika, And she harbored considerable anger towards him, At the day centre, She volunteered to teach mathematics to two students and received tremendous praise for her teaching capabilities. This no doubt boosted her confidence. We urged her to return to work, And she resumed her job as a college lecturer.
Today, Radhika continues to work at the same institution and is functioning very effectively. She occationally does require our support to deal with stress or any specific symptoms and keeps in regular touch with our team.