20/07/2019 1:09 AM IST | Updated 20/07/2019 10:32 AM IST

The Unbearable Loneliness Of Mental Health Caregivers And How A 77-Year-Old Survived It

It is a patient’s family who is invariably asked to pick the pieces of her mental illness. With little awareness to soothe new fears, members of immediate support systems often find they are helpless

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It’s rarely good news when the school calls. When the principal of Welham Girls’ School rang Amrit Kumar Bakhshy that day in 1991, he was alone in Bombay. His 18-year-old daughter (referred to as ‘D’ in this piece) was on the verge of a “nervous breakdown”. 

Bakhshy found D in the school infirmary. The anti-psychotic medicines she had been administered had worked, “but then there were the side-effects.” D’s hands were rigid. She could hardly move. For her exams that were around the corner, the school allowed someone else to write in her stead. “When we came back to Bombay, D was good, almost normal, but we knew she’d have to see a psychiatrist.”

The doctor they met dismissed D’s school hallucinations as the result of a one-time psychotic break. He told Bakhshy he would not prescribe drugs because they all had terrible side-effects. In retrospect, Bakshi said that was the worst advice he’d received.

A few months later, when D went to study at Baroda University, Bakhshy met a psychiatrist in the city and hoped he’d also double up as a local guardian of sorts. “I left a lot of money with him. I asked him to meet her from time to time, give her medicines when she needed them, but it turned out that he was just too busy with his research,” he said. By the time D’s symptoms began surfacing again, she had fallen in ‘bad company’, her father said. “She was smoking. She was being sent to restaurants to buy liquor. I then heard she’d started leaving Rs100 notes in temples.’

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Alarmed, Bakhshy asked D’s friends to send her back to Bombay immediately. They put her on a train. “Her behaviour in the compartment was erratic. My daughter later told me some man had even asked if he could kiss her,” he said. D missed her stop. When she did finally appear at the World Trade Centre, Bakhshy’s office in Bombay, D had no money. “Also, she was dressed very strangely,” recalls Bakhshy. 

D refused to eat and sleep and she refused to see a psychiatrist. “Once we saw she had started raiding the fridge at night, we started lacing the food with sedatives that a psychiatrist on the phone had suggested we give her,” Bakhshy said. 

It was around this time that Bakhshy grew familiar with the term ‘schizophrenia’: “We were entirely ignorant about the illness. We didn’t know it would last a lifetime. We didn’t know what was happening. Our ignorance had consequences we’re still suffering.”

WAITING FOR A MIRACLE 

Family life, reputedly fraught and complex, often finds it hard to cope with the demands of a mental illness. While a support system may include friends, colleagues and mental health practitioners, it is finally a patient’s parents, partners and siblings who are left to do the emotional, financial and physical heavy-lifting required for the semblance of recovery. Compassion is mistaken for control. A caregiver’s anxiety does little to alleviate the suffering of the ill. Empathy, much like patience, comes with its limits as well. It is hard to always do right. 

Bakhshy, for instance, confesses that D’s troubles left him feeling alone. “There was no one to guide us,” he said. Blindsided by diagnoses whose import is seldom fully explained, support systems are forced to speak in tongues they have never known. With testimonies and prescriptions, the internet becomes a handbook, but in the 1990s, there weren’t any Wiki entries for Bakhshy to rely on.  

In its issue that hit stands on July 6, 1992, Time magazine ran a story with the headline—Schizophrenia: A New Drug Brings Patients Back to Life. The report said that schizophrenic patients, who were “tormented by demons”, were “being awakened” by a costly new drug, clozapine. Bakhshy got his hands on this issue two years after it was published. “I was hopeful when I read about this miracle drug. It wasn’t available in India, so despite it being expensive, I began importing it from Switzerland,” he said.

Though D started showing signs of recovery, she found it hard to wake up in the mornings. “We’d literally have to drag her to JJ School of Art for her classes,” says Bakhshy. When her hallucinations returned, D’s psychiatrist upped her dose of clozapine from 100mg to 300mg, but she did not get better. When Bakhshy contacted a doctor at National Institute of Mental Health and Neurosciences (NIMHANS) in Bangalore, he was told he could administer 800mg of clozapine, but after only 700mg, D suffered seizures. “We settled on 500mg, but she was the same, so we then took her to NIMHANS.”

For nine months, D lived in a NIMHANS cottage with her mother. She escaped one day and was found on the streets. As punishment, the authorities kept her in a closed ward for the night. “That’s the only time my daughter has been confined,” said. Bakhshy. Even in 1995, NIMHANS had the reputation of being the best institute for mental health in India, “but when they released her, D had not improved”.

Having quit her job as a hotel manager, Bakhshy’s wife now spent all her waking hours caring for their daughter. Convinced that her daughter’s suffering would end, she would repeatedly ask psychiatrists for a timeline. “By when will she get alright?” The answer never satisfied her since doctors kept saying D would have continue her medication.

“My wife, who would never believe in any rituals, became very spiritual. Suddenly, she was a regular temple-goer,” he said.

When D was born, Bakhshy’s mother had insisted that he get her daughter tonsured, but his wife was staunchly against the mundan ceremony. Seeing D, though, she grew convinced that her daughter’s adult suffering was a result of her refusal to partake in the mundan ceremony. 

She asked D to get her head shaved, but when she resisted, Mrs Bakhshy shaved her own. “She started visiting temples all over India,” says Bakhshy. “I would reluctantly accompany her, and though goats and hens were being sacrificed, I would tell the priests and tantriks that they weren’t allowed to touch, beat or shout at my daughter,” D’s father said.

Attributing her daughter’s erratic behaviour to her personality rather than her illness, Mrs Bakhshy often lost her temper with D. “They would get into heated arguments and they could both get aggressive,” said Bakhshy. Once, she charged at her father with a knife. The family started hiding all the sharp objects, put grills on the windows and started keeping doors locked so that D wouldn’t run away. “We were scared. I used to keep a cushion with me, so that if it happens (D attacks), I can protect myself with that,” he said.

D, however, still managed to escape. As Bakhshy grew older, there’d be times he would have to call his driver to find D.

Once, D went missing for nearly an entire day. Later, they had found her sleeping in a park near the house. The family had already called the police so Bakhshy asked the officer ‘to put the fear of arrest in her’. On another occasion, D wounded Bakhshy while trying to escape. When the psychiatrist saw his blood-stained shirt, he asked, “Did she do this?”. 

D’s schizophrenia was not quiet. Bakhshy’s neighbours were unhappy with D’s screaming and feared she’d hurt their children. “I finally had to tell them that we’d move away,” he said.

Seeing D grow violent, hearing her abuse the neighbours, Mr and Mrs Bakhshy did, for a brief moment, consider institutionalisation. They had, for instance, once tried to send D to a day-care rehabilitation centre, but after she had altogether refused to wash utensils, the authorities had asked she no longer be brought there. Bakhshy had also done his research. He had not come across a single institution he could trust. “My wife and I decided we’d never send her to an institution,” he says. “We said if something untoward had to happen, we’d let it, but during our lifetime, we would not send her away. 

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LIFE AFTER DEATH

Though they found themselves in atypical circumstances, Bakhshy says he and his wife were just two ordinary parents: “Our lives revolved around D. She was our only child. We were giving her the best education. We sent her to Cathedral in Bombay, then to Welham. Like any parents, we had ambition. We wanted her to have a good career and be well settled. All those dreams shattered when we realised schizophrenia was not something D would just come out of. She wouldn’t have a normal life.”

Even if normalcy was impossible, Bakhshy wanted to invent for D at least an approximation of it. In 2007, when he came across a book published by the Pune-based Schizophrenia Awareness Association (SAA), he felt hopeful. Committed to creating public awareness, SAA also promised to rehabilitate, socially and economically, people afflicted with mental disorders such as schizophrenia. “I visited them in Pune, and I instantly decided to move lock, stock and barrel,” Bakhshy said.

Bakhshy realised that after having served as managing director of an export house for over a decade, he had saved enough money to now become a full-time caregiver. “In Bombay, there would be times when I’d be busy in meetings and my wife would suddenly call me and say that D was again creating problems. She would demand I come home immediately. My office was 40 kilometres from home. In Pune, I’d be much closer.” Adamant she wouldn’t move, D had to be tranquilised for the ride to Pune. 

At SAA’s day care-cum-rehabilitation centre, the organisation’s staff tried to keep D busy. Though Bakhshy would take books with him, he thought his time would be better spent volunteering for SAA. Seeing his obvious diligence and compassion, he was made president of the organisation in 2010. “For the last nine years I have been fielding calls from caregivers from all across the country. I get calls from NRIs too. I listen to what they have to say, and then I give the advice I think I should. Sharing does help a lot. My colleagues provide help too, but I don’t enjoy any entertainment,” Bakhshy said.

In the past few years, D has begun teaching English to SAA’s Marathi patients. All those who work for the organisation are paid a fee, but D, 47, takes her earnings straight to her father. Bakhshy said that when he asks her to spend it on something she likes, D tells him he provides her all that she needs. “It’s a touching gesture. She is a nice and loving girl,” Bakhshy said.

D’s hallucinations are both auditory and visual. Although she can tell who is real and who isn’t, Bakhshy said D still responds to the voices she hears and the apparitions she sees: “They irritate her. They ask her to pursue journalism, to do better. Sometimes she is convinced that they are trying to harm her sexually. I see her shouting back at them, and I feel miserable to see her suffer, to know that I cannot help her.”

With a PhD in English Literature, Bakhshy once used the example of pavement dwellers to help D get on with her life. “Amidst incredible noise, they manage to eat and sleep on the footpath. They have sex there, and even give birth there. Similarly, I tell her to ignore the voices in her head and get on with life,” he said. 

Bakhshy describes D’s schizophrenia as “bad”, “severe” and “chronic”. He adds that her Obsessive-Compulsive Disorder only worsens matters. “She eats very quickly and is always the first to finish. Once she’s done, she’ll stand over us, asking us to hurry, lining up the dishes in a manner that they are out of reach. Since talk therapy is said to be effective for OCD, we’re sending her for counselling now,” Bakhshy said. 

Bakhshy remembers every detail of D’s prescription. “I know a lot about medicines now and I find that psychiatrists often go by what I say, but I also know that beyond this, medication cannot help her. We have tried giving her every medicine available, but have not seen a holistic recovery. We only continue giving her the pills because without them, she would never be able to leave the house,” says Bakhshy. 

When his wife was diagnosed with ovarian cancer a few years ago, Bakhshy does remember a stray moment of self-pity when he asked himself, “why me?”. But as he began to look around him, he saw other caregivers whose turmoil seemed much greater.

With mortality weighing heavily on his mind, he moved his family to the SAA campus. He says, “I thought my wife wouldn’t survive, but after a couple of surgeries, she started getting better. There was talk of starting a commune, of putting a system in place whereby an orphaned patient would be looked after by other parents. Some people agreed, but it seemed no one wanted to part with money.”

Finally, Bakhshy and his wife formed a trust in their daughter’s name. “We decided that after us, decisions about our daughter’s life would be taken by the trustees,” said Bakhshy. Aware that he cannot expect others to sacrifice for D the way he and his wife had, Bakhshy even told the appointed trustees they were free to institutionalise D if they couldn’t look after her. “Whenever I have caregivers ask me, ‘What after us?’, I tell them, ‘I’ve formed a trust. You do the same.’ It is practical.”

Last month, Bakhshy was working alone in the office on Sunday when he suddenly suffered a stroke. “Fortunately, now that we are staying on campus, I was able to call my wife and a colleague. I was in hospital for four nights. My colleagues took great care of me, and that gave me hope they’d care for my daughter too,” he said. Bakhshy said that since “the warning”, he has made a list of the places where he keeps his documents and his cash. “I’ve started writing what people should do when my time comes. I’m now putting final touches. This is the best I can do. Beyond this, nothing is going to be in my hands,” he said.

A CRISIS OF EMPATHY

With their lives upturned and their affection replaced by alertness, caregivers come to suffer a pain that is barely perceptible. Yet, when A, a 34-year-old writer, checked in with a therapist in January, she was told, “You have caregiver’s fatigue.” Diagnosed with OCD in 2012, and then with bipolarity in 2014, A’s younger brother found himself struggling to escape the cycles of mania and depression that constituted his disorder. A’s family had known mental illness—her grandmother and father had both committed suicide—but when her brother was diagnosed, A said, “I embraced it, perhaps more than anyone else in my family. At least we were talking about mental health in the open for the first time.” 

In the years that A didn’t know about her brother’s condition, she says she behaved like any sibling would. “We’d quarrel. We had ego issues. Our relationship was made up of micro aggressions. After the diagnosis, however, I became softer. I think we both softened our rough edges and became more honest with each other.” 

A says she sometimes finds it hard to reconcile her brother’s otherwise calm disposition with the aggression of his manic self. “My brother lives with my mum in Assam, and I live in Mumbai. It’s my mother who is more traumatised. He has tried to attack her in his mania, and it’s only because she is a doctor, did she know how to tranquilise him. You cannot discount our anxiety,” she said.

With her anxiety sometimes mistaken for tough disciplining, A tries hard to ensure that her compassion takes precedence. In 2016, she says, she was greatly helped by a peer support group she joined on WhatsApp—Bipolar India. “There are more than 200 people there. Some are feeling suicidal. Others are clearly manic and are saying hurtful things, but for me, it’s wonderful because it gives me so much information.” By way of example, A talks about a webinar on mental health and nutrition that she heard about on the group. “The nutritionist was also bipolar, and I could learn so much from her.”

Vijay Nallawala, who had formed this WhatsApp group after launching the portal bipolarindia.com, says that for him, peer support can only be effective if it is also extended to caregivers. At offline peer meets he organises in Mumbai, Delhi, Kolkata and Bengaluru, Nallawala finds family members are as much a part of the audience as those who are mentally ill. “We do have a caregiver manual we give out, but I’ll add that peer support can also be a bit more effective than family. There’s more empathy.”

After a psychotic episode, Nallawala, 56, was diagnosed bipolar in 2003. Initially, his sister was his support system. “She is very perceptive and sensitive. She immediately reports to the psychiatrist when she sees a red flag, but I do believe that it’s very hard for an outsider to know what our illness is about,” he said. 

When Nallawala has been in bed all day because of his depression, he has been called “lazy” by members of his family. “Sure, laziness is an issue of personality, but in my case, it’s directly related to a mental illness.” Making the case that “relevance” should matter as much as “survival,” Nallwala adds, “The greater the self-awareness, the easier does it become to put yourself in another’s shoes. The patient and her family both face hell, so they each should be mindful of the other’s expectations.” 

A young Mumbai-based journalist had been struggling to cope with her new marriage and mental illness—she had been diagnosed first with depression, then bipolarity—when in December last year, a psychiatrist said she couldn’t be left on her own. “My husband couldn’t stay with me all day, so my parents, who live in a much smaller town, were asked to come here and care for my everyday needs.” 

The journalist has sometimes found it hard to even get out of bed in the mornings and brush her teeth. In the past months, she has come to rely on her parents for the smallest domestic chores. “There are days when I can’t even get myself water. I had left home in 2007, and I have been fairly independent since. When I tell my therapist that I can’t tolerate this new dependence, she asks me to compare my affliction to malaria or a broken leg. She asks me, ‘Wouldn’t your parents have come to help anyway?’” 

Guilty that her parents are now chipping in for her treatment, the journalist hates being reminded that her parents will only leave when she returns to work. “They say, ‘We are retired, and for months, we have just been sitting here, looking at you.’ There are instances when my husband says that when he was with me in hospital for two weeks, he missed out on crucial opportunities. I feel like a liability,” she said.

Some months ago, the 29-year-old reporter had a “silly” fight with her husband over pillow covers. “I just couldn’t take it anymore and before I knew it, I was again cutting myself.” She hid her cuts for two days, but then felt she must confide. “I told him I was scared of what I could do to myself, of how I had no control and how I could so easily return to square one. All he could say was, ‘You’d promised you’d let me know when you felt you wanted to hurt yourself.’ He didn’t get it.” 

The journalist says she doesn’t expect her support system to learn a new language or discover a novel sensitivity: “I just want them to understand that my brain doesn’t always know how to act. It doesn’t send the right signals. What I do isn’t for attention. I want to be understood. I want a member of my family to say, ‘I get it.’”   

Shreevatsa Nevatia is the author of How to Travel Light, a bipolar memoir.

This article is part of Second Thoughts, a series on mental health in India. Write to us here: secondthoughts@huffpost.in

If you or someone you know needs help, mail icall@tiss.edu or dial 022-25521111 (Monday-Saturday, 8am to 10pm) to reach iCall, a psychosocial helpline set up by the Tata Institute of Social Sciences (TISS).