In January last year, a 37-year-old homemaker from Chennai received a chilling call from her husband, who worked in a finance company. He told her to pick up their seven-year-old daughter from school and escort his ageing parents to safety. He claimed that someone from a company he worked for earlier was coming to attack them. His pleas were earnest and frantic.
Many such episodes followed. He alleged that his friends had broken into their house during their vacation; that their daughter was trying to send him strange signals because she wanted a red cake for her birthday; and that a phone number on a billboard was a code of some sort and had to be taken down.
It was a terrifying time for the homemaker. She eventually left her husband when he accused her of plotting against him. “That was the final straw for me, because the accusations would flow continuously, to the point where I thought I was beginning to lose my mind," she says. Meanwhile, a psychiatrist diagnosed her husband’s condition as a mental health disorder—paranoid schizophrenia. “This is the most common form of schizophrenia. Sufferers exhibit behaviour that is deeply suspicious of others. Their decision-making ability suffers," says Ajay Dogra, psychiatrist at Kailash Hospital in Noida, adjoining Delhi. Schizophrenia has no cure, he says, but can be controlled and contained with lifelong medication.
“Schizophrenia can be very challenging to deal with, not just for the patient, but for caregivers as well," says Rajesh Sagar, psychiatrist, All India Institute of Medical Sciences, New Delhi. “And yet the mental well-being of the caregiver is an often-neglected area." A March 2015 study published in the Journal Of Clinical Diagnostic Research established that caregivers (mostly female) of schizophrenic patients were likely to face increasing levels of burden and stress. The study emphasized the need to provide psychological assistance to them too.
Dr Sagar recommends that caregivers, especially spouses, be screened regularly for depression and be taught techniques to cope with the emotional burden of all such diseases. He describes this as mental first-aid. “Mental first-aid helps caregivers accept the chronic nature of the disease and understand how they should respond to it," he says.
Shyam Bhat, a psychiatrist, founder of the online psychotherapy service Seraniti.com, and author of the best-selling book How To Heal Your Broken Heart, says that while schizophrenia tends to affect more men than women, both suffer equally when a spouse is diagnosed. “It is an extremely distressing condition to manage," he says. “I’ve noticed that many caregivers tend to harbour feelings of guilt and loss while battling immense financial and social stress. They should understand that their lives shouldn’t be taken over by the diagnosis and that they need to take care of their own health and needs too."
Dr Bhat recommends reaching out to friends and family for emotional support and ensuring that the caregiver’s basic needs—such as a healthy diet and adequate rest—are met.
Another area where the caregiving spouses can do with help is getting schizophrenics to accept medication. “It requires constant, sustained effort," says Dr Sagar. The Mental Healthcare Act, 2017 clearly states that one cannot forcibly get a person with mental illness admitted unless they consent to hospitalization and medication. Caregivers and doctors point out that people suffering from acute schizophrenia are hardly in a position to make such a rational decision.
According to Suparna Umashankar, an advocate and partner at Legal Torque, a law firm in Bengaluru, “If in a clinical examination a person is proven to be mentally unstable, he or she is treated like a minor under law and the guardian has the right to take decisions, including medication and treatment. However, if the patient isn’t cooperative or conducive to being examined, you’ll have to establish to the police the patient’s mental disability, after which they will help with sedating the patient and will approach doctors for further medical evaluation."
It helps, says Umashankar, to record facts such as the nature of the illness, how long the patient has been taking medication, and provide previous prescriptions or doctor reports, if any, when approaching the police, who will then ensure that the patient is seen by a specialist.
“Going forward, we need more state-funding to manage the burden of the disease," says Dr Bhat. “Otherwise, our complete lack of support groups and psychological counselling for the caregiver will eventually take a toll."