Families find few avenues for care and treatment of the mentally ill
New Delhi: Santosh Kumar Bhowmik, a 67-year-old retired professor, sits erect on a marble bench at a cafeteria at Dilli Haat, an outdoor food plaza and handicrafts bazaar in Delhi, sipping Sprite from a plastic cup while keeping a watchful eye on his son.
At 33, the son conducts himself with the shy deference of an adolescent. At the moment, he is facing a metal pole, muttering quietly under his breath to people no one else can see or hear.
Bhowmik’s son Surjit suffers from schizophrenia, a mental illness that typically makes it difficult for an individual to think logically, have normal emotional responses, and distinguish between real and unreal experiences.
“I do not know what will happen to him after I am no more," Bhowmik said. “I leave it up to God."
He is not alone in his anxiety.
The ministry of health and and family welfare estimates that as many as one out of four Indian families will have at least one member diagnosed with some sort of mental illness. At least 7% of the population is estimated by the ministry to suffer from “severe" mental illness.
Support network: Santosh Kumar Bhowmik (in background) with his wife and son Surjit, who suffers from schizophrenia. Ramesh Pathania/Mint
“For 18 years, I have cared for my son at home because I do not have a choice," said Bhowmik. “It is not enough to give medicine to patients suffering from schizophrenia. They require special care, which we cannot give at home, but I do not have the money to institutionalize him in a private facility. I don’t like to think about what will happen to him after I am gone."
In the 1980s, the World Health Organization released the startling findings of a two-part study on mental illness: Patients suffering from schizophrenia in developing countries such as India, Nigeria and Colombia had better long-term outcomes than those in developed countries, which included Denmark, the US and Canada.
The culmination of decades of research, the study examined long-term treatment of more than 1,000 schizophrenic patients across 16 countries, concluding the greater levels of acceptance, stronger social ties, and greater family involvement more common in developing companies appeared to be “key positive factors" linked to patient recovery.
While the study’s findings have been criticized on the grounds that it may have ignored patients locked away by families concerned about the social stigma associated with mental illness, it contained important insights into its treatment.
“Social ties are one of the intervening factors that affect patient outcomes. There was another study in the UK which looked at different ethnic groups, and Asian families with stronger social ties showed better recovery and remission rates," said Manasi Sharma, a research coordinator at Delhi-based Centre for Excellence in Mental Health. “But caution has to be exercised by looking at these studies—it can go both ways. Families have been known to shun patients, too."
With few affordable rehabilitation centers available, the families of the mentally ill find it hard to cope. But the efforts of a handful of individuals may finally improve things for some of them
Should the study be conducted in India today, it would likely yield very different results. Economic liberalization and policies successful in lifting millions of people out of poverty have also reshuffled social structures. Large joint families that used to be the norm have given way to the smaller, nuclear families typical of most Western countries.
Nirmala Srinivasan, founder of the Association for Mentally Disabled, a support group for caregivers to the mentally ill in Bangalore, said there is no doubt that the burden of caring for the mentally ill is growing.
The daughter of a woman diagnosed with schizophrenia and the primary caregiver to another close family member struggling with mental illness, Srinivasan has unique insights into how deteriorating social support networks have burdened modern day caregivers.
“I grew up in a large south Indian orthodox Brahmin family, with a lot of widowed aunts. It was a very large joint family, so I never felt the burden of my mother’s care," said Srinivasan, who fondly recalls a childhood filled with neighbours, festivals and a family that worked together to manage her mother’s illness, to make sure that her mother always felt included and was never alone.
“But now there’s an issue with inadequate family resources, particularly among middle-class families that have migrated to urban centres," she said. “My father had a tremendous in-house support network. That is completely lacking for caregivers across the country today."
The growing verticality of cities, which stacks families into isolated apartment units, also serves to isolate them, while exacerbating the stigma associated with mental illness, Srinivasan said.
“They won’t seek help if there’s a crisis unless the (patient) becomes violent. They don’t want to have to explain it to the neighbours the next day," she explained. “Sometimes I think that the mentally ill in slums may fare better during emergencies than middle-class families, because in slums you can’t hide an emergency. Whether it’s a mental crisis or labour pains, the entire community will rally and bring them to a hospital. And if it’s a village, they’ll put them in a bullock cart."
Paying for long-term care can also leave families in a financial hole, particularly those who lack insurance.
“I have no options, I cannot even get a loan," said a woman who’s a full-time caregiver for two family members—a father who suffers from dementia and a brother diagnosed with schizophrenia. “For poor people, there are loan options, but for the middle class, there is nothing. And mental illness affects all income levels, so the issues cut across income levels too."
Taking on the mantle of the caregiver eventually forced her to quit her full-time job, said the woman, who spoke on condition of anonymity. The scant wages she earns as a freelancer in the social development sector makes hiring any sort of full-time help out of the question.
Finding trained nursing attendants is difficult and costly—a full-time trained nursing attendant costs ₹ 35,000-40,000 a month plus food, and adult diapers (now necessary for her father’s care) cost her approximately ₹ 300 a day. Even keeping a full-time maid is hard as most don’t stay, unnerved by her brother’s erratic behaviour.
No place to go
Even while families are increasingly feeling the pinch, state governments are yet to step up to provide viable alternatives. This void is most keenly felt by families living in northern India. As of now, there is not a single government-run rehabilitation centre in the region where patients with incurable mental ailments can be admitted for long-term care.
But the ripple effects of government apathy in the North are also felt in the South, where the few private rehabilitation centres that exist have learned to be wary when approached by northern families.
“After very bitter experiences in the past, we are hesitant to admit patients based in northern India. The likelihood of abandonment is very high and the distances make following up with the families very difficult for us," said M. Ranganathan, a caregiver at Family Fellowship Society (FFS) in Bangalore.
Ranganathan retired from the National Institute of Mental Health and Neuro Sciences in Bangalore after four decades of work in the area of psychiatric social work. He cited three recent instances when families based in Delhi abandoned the patients at FFS.
“They did not pay the monthly charges and stopped answering our phone calls. Eventually, we had to seek police assistance to get the patients back to their homes, as we cannot take care of patients without financial assistance," he added.
Bhowmik’s is one of 25-odd families that came together to fill the void for rehabilitation centres in Delhi three years back by forming a social support group of caregivers and mentally ill patients.
Rajeshwari Iyer, one of the founders of the group Roshni, shows through personal example how strong family support can make or break recovery for a person struggling with mental illness. Her daughter Madhu was diagnosed with schizophrenia when she was 16 years old. Now 34, she is working as a receptionist at a doctor’s office and hopes to lead a normal life—perhaps even get married.
Her own recovery has inspired her to help others struggling with mental illness. “In the absence of my mother, I try to help patients and even counsel families based on my experience as a patient," said Madhu.
Her mother knows all too well what can happen when the primary caregiver passes away, and no long-term care facilities exist. Three months ago, she received a call from the Delhi Police asking that she help with someone they suspected was mentally ill.
Iyer arrived at a dilapidated home that looked abandoned. Living inside, in the dark, was an unshaven man with dreadlocks and an insect-infested beard.
“His legs were gangrenous," she recalls, shuddering. She learned from neighbours that the man suffered from psychosis and had been cared for by his parents, who passed away several months back. His brothers and sisters all lived in Delhi, but refused to come forward to claim him, saying there was no way they could care for both him and their own families.
Iyer was able to intervene and get the man accepted at a government hospital. But there are many others who are not so fortunate.
“I remember one mentally ill man whose primary caregiver died," she said. “His brothers would not take him in and put him on the streets. Three days later, he was dead."
Barring government intervention, the group members have no choice but to take matters into their own hands. “In Delhi, it frustrates me that being the national capital and despite having resources at command, not a single home for mentally ill patients exists," said Bhowmik. “My request to families in Delhi will be to start a self-help movement, mobilize resources instead of waiting for the government to pitch in."
This is the first part of a two-part series on mental illness. Next: Homes for mentally ill homeless in south India leave much to be desired.