At 55, Sivaprasad* doesn’t work. Not that he doesn’t want to. After his parents passed, he is the sole caregiver of his brother with schizophrenia. His 52-year-old brother’s medications cost some Rs 9,000 a month, so he takes on online freelance projects whenever possible to fund the treatment. Sivaprasad remains unmarried.“Caring for a person with schizophrenia is a demanding responsibility. You have to be on your toes 24 hours a day. There is little “me time”,” he says. Physically, the patient may be 50, but in terms of mental and emotional needs, they could be like a five- or ten-year-old child, he says. “They can throw tantrums and need constant attention. Even something as ordinary as attending a wedding becomes a task.”But then, not every person with schizophrenia ends up in this situation. James, who is 50-plus, lives alone after his elderly parents passed. His sibling lives abroad but today he manages life on his own. The key, says Dr R Padmavati of Schizophrenia Research Foundation (SCARF), Chennai, was the training his parents gave while they were alive — handling money, maintaining a daily routine and managing basic responsibilities.While caregiver burden is huge for any psychotic illness, every family has a different experience, say medical professionals.Sometimes, siblings are willing to take responsibility. Sometimes they live separately and visit regularly. Some siblings are not prepared to take responsibility, says Dr R Thara of SCARF, a mental health centre and nonprofit organisation.Most Indian families try to get the patient married, hoping it will better their condition but without considering whether the marriage is likely to be functional or successful.But if the person is married, the spouse generally takes responsibility, particularly when the patient is a man, says Dr Thara. But when the patient is a woman, she is often sent back to her parental home and told to “recover” before returning. “Having said that, we also know of many husbands who care for their wives. Overall, there are more wives caring for husbands with schizophrenia than vice versa.”The solution, then, might seem like a residential facility or a full-time carer but it isn’t easy when the ilness is serious.Caregivers’ training is often focused on neurological and physical conditions such as brain injury, while mental health caregiving receives less attention. Paid caregiving for people with psychiatric illnesses is still not widely accepted or available.Not only is there a serious shortage of trained caregivers, they cannot be trusted easily with a patient with mental illness, says Sivaprasad. “It’s not just about administering medicines and providing food, the patient’s safety and wellbeing are important.”Also, trained caregivers are expensive. “It comes to `1,500 to ` 2,000 a day, which a middle-class family cannot afford, while the family member who gives up employment to provide care may have to sacrifice their income,” says Sivaprasad. The issue of patient safety comes into play at residential care too, he adds.Every week, about five patients co me in asking for long-term care at SCARF’s residential facility, says Dr Padmavati. But not everyone needs residential care. It’s decided on a need-based scenario, when there is no one to take care of the patient or if they are unmanageable at home, she says.Such facilities are now opening across the country, but they can also be expensive.Even if a family can afford it, it is not necessarily the best solution because it can cut the person off society, says Dr Thara.Surprisingly, in rural communities, the scenario is much better, says those in the field, as neighbours and community members may help monitor and care for a person rather than allowing them to become completely isolated. “With appropriate treatment and support, people might regain their independence and productivity. One person was able to take up tailoring after a community member stepped in and taught her,” says Dr Padmavati. Urban areas, particularly crowded middle-class neighbourhoods, can be more difficult.Schizophrenia represents a broad spectrum of behaviour, and there are manyshades of grey.“Medication is only one part of treatment. Recovery involves helping the person engage in a daily routine, participate in family life, socialise and, where possible, work towards personal goals,” says Dr Padmavati. Sometimes the patient wants to work or become more independent, while the family wants them to remain at home.The problem, says Dr Thara, is that they may have certain symptoms that make it difficult for them to hold on to a job and contribute to family income.From the part of the govt, there should be public institutions, shelter homes and daycare centres where people with schizophrenia can spend at least part of the day, she says.The govt could also support in the form of a regular pension and assistance with medicines, says Sivaprasad. “Families need some form of handholding from the govt rather than being left to negotiate these complicated systems on their own.”Above all, what caregivers need most is consideration and understanding, he says. “We may say that society has become more aware, but is it really open to accepting people with mental illness and their families? Everyone experiences mental fatigue or emotional breakdown at some point, but most people recover. People with severe mental illness may not recover in the same way, and their families live with the consequences for years, sometimes for a lifetime. And not everyone has the means, patience or heart to care for them.”(Name changed)
