“One time, I downed several bottles of Eltroxin [a thyroid medicine], hoping I’d die. I really just wanted to escape it all.”

Lopamudra Roy doesn’t have a mental illness. Her late husband did, and so does her son. Both of them have Bipolar Disorder. For the last 27 years, Lopamudra has been the sole caregiver for both of them. She doesn’t recall the specific instance that triggered her self-harm episode, but she remembers the feelings all too well. It was a mixture of acute frustration, helplessness, and chronic stress that somehow reached a crescendo at that time. 

Lopamudra is not alone. About 80% of caregivers worldwide experience what psychologists call caregiver burnout – stress-induced breakdown while taking care of chronically ill patients. The picture is even more dire when it comes to caregiving for chronic mental illnesses like Schizophrenia and Mood Disorders. 

In India, the burden falls mostly on family members, as there is little institutional support for caregivers. More than 90% of caregivers for mentally ill patients in India are family members of the patients, and most of them are women. In a country where mental illnesses are still associated with social taboos and stigma, caregivers of mentally ill patients are doubly vulnerable to caregiver burnout. The stigma, general lack of awareness, and scant infrastructure prevent many from seeking out support or assistance with caregiving work. Even if one is open to help, there’s not much to help them with. 

The caregiver’s burden

Lopamudra had an arranged marriage and only found out that her new husband had a ‘drinking problem’ months later. But her husband’s problems went deeper than just drinking. She first realized something was truly amiss with her husband when he started behaving strangely at her sister’s wedding. “He was so restless, doing and saying things no normal person would do or say, especially during such an important function.” 

Lopamudra took her husband to a psychiatrist under the pretext of treating their six-year-old son, who had also started exhibiting signs of learning disabilities and restlessness by then. The doctor diagnosed the father first and wrote his medicines in the son’s prescription. Mixing medicines with food lasted for a while. Eventually, the dosage had to be changed and could be hidden in food no more. The medication stopped. A few years later, Lopamudra’s husband had to be institutionalized. 

Throughout this all, Lopamudra suffered several bouts of anxiety attacks and severe chronic stress. She had huge fights with her husband and struggled to control her son’s hyperactivity. “I had thought of walking out many times. Sometimes, I had emotional outbursts; sometimes, I would ignore everything. But I couldn’t imagine leaving the fight,” says Lopamudra, describing the tumultuous years before her husband passed from Lung Cancer. 

Bidisha Basu’s (name changed on request) experience mirrors Lopamudra’s life in multiple ways. Caught between caregiving for her octogenarian mother and clinically depressed husband, Bidisha is often irritable, anxious, and overwhelmed. “It feels like no matter how much I do, it is never enough. Everybody expects me to be this strong person but nobody understands that even I have limits,” said Bidisha. 

It was she who first sought treatment for her anxiety and then directed her husband to the same psychiatrist. Her husband also has alcohol addiction issues that Bidisha finds extremely difficult to handle, mainly because he has developed the addiction fairly recently, and it feels like an extra burden – one more thing to deal with. “Sometimes I behave rudely with him and then feel guilty,” shared Bidisha. “It’s like a never-ending cycle. I get exhausted from my duties. I snap at them in a moment of stress, then try to make up by working too hard.” 

Bidisha and Lopamudra’s experiences are not outliers. Caregiving for mentally ill patients is generally far more stressful because of the unique behavioral challenges they pose. 

Lack of structural support

Mental health caregiving differs from other caregiving activities in crucial ways, and the people taking up this responsibility need to be prepared differently. Psychotherapist Sujata Roy Chowdhury stipulates, “Caregivers must have some training in caring for someone with a mental illness. Without such training, they would be a lot more prone to stress and burnout. They also need different coping strategies from someone caregiving for a normal patient. Otherwise, they will not cope well, which can affect the patient too.” 

Indeed, studies have shown that when caregivers suffer from anxiety or depression – both signs of caregiver burnout – they are less motivated to perform routine caregiving activities like administering medicines, cooking and cleaning for the patients, and providing physical and emotional assistance to them. 

Yet, Lopamudra and Bidisha were not provided any kind of training or education when their family members were diagnosed with mental illnesses. Neither did they receive any advice on coping with caregiver burden and stress. 

The only time Lopamudra was given anything akin to advice was when her husband was institutionalized. During discharge, nurses told her to avoid looking her husband in the eye, as mentally ill patients supposedly have a ‘look’ in their eyes that can feel threatening to caregivers and add to their stress. Lopamudra said that the tip helped her cope with her situation better.  

Bidisha, on the other hand, describes the uneasy experience of going to a doctor with her husband: “The doctor would speak to him, direct him to do things, but the entire time he would be looking at me. [It was] as though he was putting the onus on me. I felt like I was responsible for everything.” True to the pattern, filling up prescriptions and ensuring her husband takes them has become solely her responsibility. If she forgets or is not present during the time of medication, the medicine won’t be taken. “This feels like too much pressure at times,” says Bidisha. 

This lack of support is structural. In the last National Mental Health Survey conducted in 2015-2016, India had 0.75 psychiatrists per 1 lakh population. The World Health Organization says this ratio should be at least 3 psychiatrists per 1 lakh people. “This skewed patient-to-doctor ratio means there are not enough doctors to attend to patients themselves,” said Sujata. “How would they find time to educate and train the caregivers too?” Certain clinics and hospitals do have arrangements for caregiver training and education, but there is no rule stipulating that. So, these remain exceptions rather than the norm.  

The picture is even bleaker once we venture out of the cities and peek into smaller towns and villages. The Mental Healthcare Act of 2017 has made provisions for mental health treatments to be available at the district level with the District Mental Health Program (DMHP), under which primary and sub-health centers in all districts should have attending mental healthcare professionals like psychiatrists and psychologists. But with the paucity of trained professionals in the field, state governments often have to depend on ASHA (Accredited Social Health Activists) workers to impart rudimentary mental healthcare like door-to-door counseling. 

Mental health activist Ratnaboli Ray spoke of camps where people are given diagnoses and medication. Even there, training or preparing caregivers is rarely a priority. “Even getting a diagnosis is a challenge [in rural areas]. Those who run the camps may not even bother to explain the diagnosis to the patient party because they don’t have the skill to do so in a way that won’t scare the people,” points out Ratnaboli. In this system, the ASHA workers become a de-facto support figure for many caregivers. But ASHA workers are already severely overburdened. Piling mental healthcare on top of their responsibilities only makes their job harder and doesn’t benefit the patients or their caregivers in the long run.  

Self and community care

How, then, do mental health caregivers stay afloat? What sort of support do they need, and who can provide it? 

Both Sujata and Ratnaboli emphasized the role of community-based support. In Sujata’s words, “caregivers can often feel trapped and isolated [in their caregiving role], and that can lead to depression.” Ratnaboli pulled up the practice of chaining mentally ill children while going to work as an example. “If a parent has to leave for work and cannot ensure their child is watched, then they are forced to tie the child up. Instead of judging those people, we have to understand the root causes,” she says. And the cause is, most often, not having community support. Localized community spaces or support groups for caregivers to share their concerns and learn can go a long way in alleviating the pressure. 

To provide such support on a mass scale requires social and governmental involvement. Meanwhile, here are a few tips to manage caregiver stress and burnout on your own.

Personal health and fitness: It is extremely common for caregivers to sacrifice self-care while caring for others, so getting the basics right is the first step. Sujata says getting enough sleep and having a healthy and balanced diet is crucial for stress management. Therapist Ankita Magdani also suggested weaving in some outdoor time in the routine; for example, waking up an hour before the duties start and going for a walk or run. 

Hobbies and entertainment: It is crucial for caregivers to have or cultivate a way to unwind. It could be joining a book club, watching movies, or even crocheting. Pick something unrelated to the caregiving work that gives you joy, and consistently make time for it. 

Support groups and therapy: Cities now have illness-specific and even generalized mental health support groups. Group or solo therapy is also an option. The idea is to cultivate a space that is solely about receiving mental support for yourself instead of giving.

Conscious breathing practices: Conscious or focused breathing techniques can be found in many cultures. In India, Yogic and Tantric practices have many variations. Breathwork is a fantastic grounding technique when one is feeling overwhelmed. Done regularly, it also helps regulate and calm one’s mind and body. Find a detailed guide here.

Self-educate: Familiarize yourself with the disease you are dealing with in every way. This could include books and podcasts on the subject. One good strategy is to ask practical and topical questions to the doctor and mental health professionals at the clinic – much can be learned that way, even if training is not provided.

Take a weekly off: Caregiving is a job, and like any other job it requires a day off. In this context, it could be asking a friend or family member to watch your patient for the day. It’s easier said than done but get over the embarrassment of bothering people and asking for help when needed. Care work is not supposed to be done alone. Take your day off without guilt. 

Problem-focused mindset: A study with caregivers of mental illnesses found that those who took a problem-focused approach to coping instead of avoiding or reacting emotionally performed better in general health markers. Treat the many challenges of caregiving as disparate problems to solve as they come and not as a continuous issue. 

A distant hope 

Caregiving is a stressful and often thankless job, and our respondents have dealt with it differently. For years, Lopamudra reacted emotionally to many of her husband’s and son’s unusual behaviors. She would get angry, act out in retaliation, and often beat up her son. “I regret it so much now. But at that time, I was at my wit’s end,” she said. 

It was only in 2019 that she joined a meditation group and began coping better with her stress. Her son has also encouraged her to join a support group for caregivers run by a city organization. She will probably give it a go.

Bidisha, on the other hand, still hasn’t found a satisfactory way to cope. Her stress often manifests as emotional outbursts and a general feeling of hopelessness. She did try therapy once but says it did not help. She felt judged by the therapist and, after a few sessions, stopped going altogether. She hasn’t tried again. 

A more structural approach to caregiver education and training would have helped both. Instead, they were left to trial and error through the extremely delicate but strenuous job of caregiving for the mentally ill. Ratnaboli hopes for greater collaboration between the government and civil society organizations to help caregivers in the future. 

Till that happens, it remains a lonely battle for mental health caregivers.