Caregiving for mental health: How a sister’s 30-year fight helped a brother battle schizophrenia, inspired a film

While their early years were spent in Mysuru, the children shifted schools. Recalling the time Tarun stepped into adolescence, Ila says, “It was like a silent storm had begun inside him. As this condition is closely associated with a loss of gray matter density in the brain, Tarun struggled with his studies. His body and mind developed much slower than his classmates and he lagged behind in development milestones.” Teachers misunderstood his difficulty and school after school closed their doors to him. He began to lose friends, confidence and eventually his connection with the world around him. “A boy who once loved cricket and laughter slowly slipped into isolation and confusion. His mind, still growing and trying to understand life, was overtaken by an illness, which nobody recognised at the time. His behaviour changed. Communication faded. He withdrew into silence. He became lost inside himself. Those days, there was no mental health awareness or a support system. Only frustration, fear and stigma,” says Ila.

As Tarun’s condition worsened, he got addicted to smoking and was later treated at NIMHANS (National Institute for Mental Health and neuro Sciences), Bengaluru, where for the first time his therapy was pivoted on structure, routine and care. “However, with my father passing away in the middle of his treatment, Tarun returned home. With no family support and understanding of his illness, he collapsed again — this time deeper than ever. He lost everything. A home, identity, routine, dignity… even his human rights. He became invisible to the world,” says Ila.

Where others saw a problem, Ila saw her brother

She decided to fight when others gave up. From 1996 onward, Ila and her family took responsibility for Tarun’s entire life: medical care, emotional care, ensuring dignity, compliance of daily routine and rehabilitation as well as protection from stigma and love without condition. By then, the family had shifted to Pune and Ila would encourage Tarun to paint. The familiar surroundings gave a sense of stability to Tarun that worked.

Once she took one of his paintings and went to Sassoon Hospital where she met psychiatrist Dr Neha Pandey. Moved by Ila’s commitment to her brother, the doctor offered her a job. Ila became part of the group therapy team, helping her brother as well as other patients live a life of dignity.

The science of caregiving for schizophrenia

A decade later, Ila and her family have added meaning to Tarun’s life by filling his days with rituals like reading, writing, exercising, walking, watching television and teaching him to use the mobile phone. Thanks to technology, he could snap out of his imagined world and connect to reality. Tarun met his childhood friends through the internet as his best friend came to meet him in Pune.

According to Ila, a caregiver’s job is a patient one. “The first step is to create a safe space for mutual communication by attempting to understand even the patient’s non-verbal cues,” she says. A caregiver often validates the patient’s feelings and experiences, opening a bridge of communication. If it’s a family member, then it is easier to understand a loved one’s reality without judgment and eases their sense of isolation.

At the first step, a caregiver should not challenge delusions simply because it is pointless to reason with psychosis. The idea is to listen to the patient and gently redirect them to reality. Encourage them in doing things for themselves, which steers them closer to their immediate reality. Ila involved her brother in various activities and hobbies that would keep him grounded to reality and gently encouraged interaction with friends, family, and social outings to combat isolation.

She learnt about schizophrenia to understand symptoms and behaviours so that she could deal with her brother’s anxieties better. In fact, becoming a caregiver-therapist helped her experience different manifestations of the disease and understand them better. Amid all this, Ila ensured that she stayed fit and alert. She watched her own sleep, diet, exercise and relaxation techniques to prevent burnout.

What care-giving does: Low dose psychiatric medication, no relapse

At BJ Government Medical College and Sassoon General Hospital in Pune, Ila coordinated with associate professor Dr Nishikant Thorat to supervise Tarun. He gradually reduced Tarun’s psychiatric medication and he did not have any bouts of relapse. “Ila has studied his silence, learnt his non-verbal language and built a world around his comfort and safety. She taught the family how to love him, not fear his illness. Alongside her stood her husband, son Tavish, and daughter-in-law, who gave up comfort, time and personal life to become Tarun’s protectors and support system. They gave him more than care, they gave him belonging,” Dr Thorat said.

Tarun’s struggle continues with age bringing in illnesses like kidney failure, cardiac issues, diabetes and other orthopaedic issues. Dialysis has become a part of his life. “Patients suffering from long standing psychiatric illnesses like schizophrenia pose a challenge. Psychotropic medications can sometimes have a negative impact on the kidneys. That’s why he requires regular dialysis thrice a week to manage his kidney issues. We are able to reduce his psychotropic medications to a bare minimum dose so as not to have any negative impact on his treatment for kidney failure. In fact, since the last three years, he is behaviourally stable, interactive and taking his dialysis sessions regularly,” says Dr Thorat.

Tarun now lives a life of dignity. His mind may not match his age but his heart recognises love and finds joy in friendship, paintbrush, music and people who approach him with kindness.