In helping people with mental illnesses, Manav Foundation makes sure their caregivers are not left behind. "A big shock". "I don't want this responsibility". These are the raw words of Sumira Roy when describing what it was like becoming the primary caregiver of her sister, Shivalika, who has schizophrenia.
Until 2016, Shivalika had lived with their mother, in between hospital stays for treatment, and Sumira had only lived with her sister when she came down to Mumbai from Jaipur for visits.
But when their mother passed away, Sumira, the only sibling, assumed the role of caregiver.
"My mother never actually expressed to us the day-to-day, [and] how difficult it is to handle [someone with schizophrenia at home," says Sumira, a filmmaker. "It's a completely different ballgame. And it is not something anybody can understand…[they] have their own reality."
When she went out with Shivalika, the crowds would make Shivalika anxious, unable to even board an escalator. At home, Shivalika sometimes became suspicious of Sumira and would have outbursts.
Without fully understanding her sister's condition and how to manage its symptoms, Sumira struggled. She also felt guilty for the stress it created for her husband and daughter. "Because you're the one who's brought this person into the family unit. And you're the one who then is supposed to find solutions and get the peace going. That has been stressful," she says.
Realising after a few months that things could not continue, Sumira sought solutions that would help her sister cope with everyday life, which would also provide some reprieve for hers as the caregiver.
MANAV FOUNDATION
It was while researching her options on the Internet that Sumira chanced upon Manav Foundation, a Mumbai-based non-profit offering treatment and rehabilitative services for people with mental illnesses, such as counselling and various types of therapy like art and animal therapy.
It also offers counselling and monthly support group sessions called Sahyog, for caregivers of people with mental illness.
The foundation was started by Meena Mutha in 2005. A caregiver to her daughter who developed a mental illness in her teens, Meena struggled to find the right care for her. "[The doctor] asked me to take her to a rehabilitation centre...there was hardly anything available," says Meena. "Whatever was available, it's not up to the mark where I could shift my daughter there."
Mental illness in India is a taboo subject, and "it is not easy for a person to take or give services [for mental health]", says Meena. "And that's how a lot of people suffer in silence."
Meena's goal was to offer rehabilitative services that went beyond institutionalising people with mental illness — whom Manav call clients, rather than patients — in hospitals, and focus on their ability to grow and be part of society.
"The concept is, he must go back to society the moment he starts feeling better," she says. "They should be ready to go back to society because it is not advisable to stay in that [hospital] environment for their whole life.
To ensure people from low-income households could afford care, Manav, which is funded by donations, charges clients on a sliding scale based on their means. Some do not pay at all.
Since it was started, it has provided care to some 1,300 people with mental illnesses and their caregivers.
FAMILY AS PART OF CARE
After starting treatment at Manav, Shivalika's condition improved. At Manav's advice, Sumira helped her establish a routine, where she would go to Manav's rehabilitation centre regularly for counselling and activities.
"Some of the burden of you as a caretaker is taken care of by Manav. So that's the first thing, the support system. The second thing is, in terms of her behaviour, [Shivalika] is at least being made aware that she has behaviour she needs to work on," says Sumira.
Sumira found her a part-time job as a telemarketer, and Shivalika eventually became comfortable enough to commute to Manav's rehabilitation centre on her own. "There is no doubt that she definitely felt a difference in going to Manav. It gave her a sense of belonging."
Manav also makes a point of including caregivers in the process through family counselling sessions. "Because the family needs to know how to deal with the client. Only doctors or only therapists, cannot give the 100 per cent result," says Meena. "You need to be taught step-by-step by the therapist, how to deal with it at home."
Initially, Sumira resisted joining the family sessions, which had triggering moments when she and Shivalika disagreed.
She also declined to attend Manav's support group for caregivers. "Day in and day out, you're looking after them and every day you're interacting and handling family sessions. It was too much for me to go on a Saturday and again talk about them!" says Sumira. "I was tired."
But Manav was firm that Sumira take part in the family sessions as part of her sister's treatment, and Sumira acknowledges how it has helped to understand her sister better.
"There were a lot of things I didn't know. And I was explained why it happens or why they behave in this way. I can actually understand somewhat, how their mind works," says Sumira.
And if Sumira is unable to manage, Manav is a call away. "You know that you can always message or mail them and talk to them. That is a huge thing because otherwise, what do you do?"
THE LONG ROAD AHEAD
Four years on, the journey remains a challenging one for Sumira, made worse by the COVID-19 pandemic sweeping the world.
As India went into several phases of lockdown, Manav had to cease its group activities and close its rehabilitation centre, which affected some of their clients' ability to access treatment, especially those who do not have a stable internet connection for video calls.
Sumira and Shivalika had to stay home most of the day, which created tension and stress for the family. "Some symptoms of [Shivalika's] were heightened," says Sumira. "Manav said most of the clients are regressing."
As a caregiver, Sumira ensures that Shivalika keeps to her routine, such as waking her up in the morning and readying her for her morning call with Manav's psychiatric social workers, or for group therapy over a video call.
Advised by Manav, she also tries to get Shivalika to do some household chores. In the evening, she ensures Shivalika takes her medication and tries to get her to go to bed at night.
While Manav is currently unable to hold Sahyog sessions for its caregivers, it continues to offer counselling when requested. "The family is always overburdened. There is so much that they have to do for the client, which they become exhausted. They become tired. They become frustrated," says Meena. "They need some kind of outlet where they can openly talk."
Sumira shares that while chatting with a friend — also a caregiver — they realised that they had fallen into "default caregiver mode".
"[It's] like, something happens, you give attention to it...and you give it more energy than it actually requires. Then there is overprotection, like making sure she has this, she has that. If she has a problem, you try and sort it," says Sumira. "We realised...[it was] not really doing good for my sister. We decided to detach ourselves...because you just go crazy."
Caring for someone with mental illness has no timeframe, she notes. "As long as I live, for as long as she lives, it's something you have to do. Understanding and accepting that is the first thing."
She hopes that with the help of Manav, Shivalika learns to lead an independent life and that she can re-establish a routine that works for both of them. "Manav also told me in the beginning, very clearly, 'You cannot be a substitute for your mother. Don't go down that road...it's dangerous for you and for her.'"
Her advice to caregivers? "Start taking care of yourself mentally, physically, mind-body-spirit. You have to be stronger because otherwise, it will affect the client as well. And start looking wherever you can for support systems. Like I did and I got Manav."
She adds: "I just want to tell other caregivers like me who are going through the same thing, don't forget yourself, in all this. That's really important."
This story first appeared in Our Better World's mental health series.