We can’t always depend on the family to take care of mentally-ill patients. We need to put an infrastructure in place.
She is well over 70 years of age but has to slog to manage at least one meal a day. Thayamma lives in a fishing village off the East Coast Road, Chennai, and looks after her 90-plus husband and two sons but her biggest worry is her mentally ill daughter.
The girl has not been treated but Thayamma bristles angrily if she hears that. “Of course we treated her. We did pujas and the priest drove the evil spirits away, but they keep coming back,” she snaps. She is convinced that the girl is possessed by evil spirits and explanations of mental illnesses and possible treatment are met with looks of blank incomprehension.
Told that her daughter would be all right after marriage, Thayamma got the girl married off without telling the groom’s family about her problem. Inevitably when they found out, the girl was sent back to her mother. Now the girl is shunted back and forth between her maternal and marital homes, a source of stress in one and an unpaid drudge in the other.
“I will look after her as long as I am alive,” says Thayamma defiantly. But soon the confidence crumbles: “But I am already so old. What will happen to her after I’m gone?”
A cry that is echoed by Vasu’s mother. The only other thing she shares with Thayamma is age.
Vasu is a tall strapping man in his late forties. Faced with visitors, Vasu makes a palpable effort to be social. He’ll shoot off questions: mostly the stock variety of “how are you?” etc without even waiting for answers. Once he’s exhausted his conversational capacity, he’ll burst into song. “It unnerves most people, even family,” says his mother.
Vasu, who belongs to an upper middle class family, was diagnosed with schizophrenia. He lives with his mother and has a job with an organisation that works for the mentally ill but his primary caregiver is his mother.
“I see that he takes his medication regularly, keeps himself clean, doesn’t smoke too much,” she says. She gets him to help her around the house, even do a little shopping for her but there’s little else she can do. They live in a fairly isolated area and Vasu is not very welcome at family get-togethers, even at his brothers’ houses. “People don’t know how to react around him and he’s not very comfortable in social situations, so we don’t go out much.”
Her concern, like Thayamma’s, is: What will happen to Vasu after she’s gone? “Who will care for him?” she asks plaintively. “We don’t have any good homes or institutions that will care for people like him. I worry about his future every minute.”
“This is indeed a major concern for us and for families,” says Dr. Thara, Director, Schizophrenia Research Foundation, Chennai. “There are absolutely no such facilities run by the government, be it state or central. A few NGOs/private institutions do offer long-term care, but they are grossly inadequate; some too expensive and beyond the reach of many middle income families.” Sadly, there is no government policy to address this situation.
As for awareness, campaigns are a trickle compared to the floods of ads on the HIV-AIDS, heart disease, diabetes and other health issues. Also, Dr. Thara points out, these need to more focussed, comprehensive and reach the rural masses. She points to the success of the aggressive campaigns that targeted the stigma behind leprosy. “The stigma is much less and more people opt for early treatment,” she says. Her take on awareness campaigns: “A private-public partnership is probably the best.”
Two mothers, from two ends of the socio-economic stratum, with the same problem. How many more caregivers face a similar dilemma; one that the healthcare professionals are unable to address? Will Vasu’s mother and Thayamma see light at the end of the tunnel?