Caring for caregivers: How caregivers can navigate mental health tolls while supporting loved ones

Sanjay Manohar’s world shifted when his wife was diagnosed with schizophrenia in 2000.

Since then, the 57-year-old has taken on the role of her primary caregiver, navigating the challenges that come with the role for over two decades.

Between managing a job, looking after his son, and taking care of his wife through her mood swings, unpredictable behaviour and resistance to go to a doctor, Manohar's initial years were challenging.

He recalls an instance when his wife suddenly decided to visit a temple and left without informing anyone. She was missing for the entire day, without a mobile phone or money, leaving him panicked. Eventually, she returned home safely.

The caregiving journey has not left him unscathed. Manohar himself struggles with anxiety, which he says peaked during these years.

“Yes, it has taken a toll on my mental health. I have always been anxious by nature, and my wife's condition made it worse until I learned to cope. I also have related digestive issues stemming from anxiety. But I’ve learned to manage it through adjusting my expectations, treatment, and counselling," he adds.

Caregivers face behavioural disturbances and even a patient's abusive or violent behaviour in certain cases. They tend to cut down their social activities and have their whole world centred around the ailing person. To make matters worse, the financial burden of supporting a family member with mental health challenges can also be overwhelming.

Experts believe that this can severely impact the physical and mental health of caregivers.

The caregiving toll

Roshni Sondhi Abbi, Lead Clinical Psychologist at Fortis National Mental Health Program, describes burnout in caregivers as a state of physical, emotional, and mental exhaustion. Signs can include fatigue, sleep disturbances, anxiety, low moods, hopelessness, and social withdrawal.

Without adequate support, caregivers may face long-term effects such as losing their sense of identity, feelings of isolation, and increased susceptibility to illness, adding to that, Dr Neerja Agarwal, Psychologist and Co-founder of mental health platform Emoneeds, explains.

While the situation is even more challenging for the primary caregiver, secondary caregivers also feel the brunt of the situation, as in the case of Kashish Sharma, who became a caregiver for her first cousin who was diagnosed with a major mood disorder.

While there was uncertainty about whether her sister had bipolar disorder or clinical depression, Sharma's relationship with her first cousin grew tense after her sister ended her marriage in Australia and moved back to India to stay with them.

“After returning from Australia, her first words were abstract and totally out of context. She would stare at me with a gaze filled with anger and disgust,” she says, recalling a particular instance. “One day in front of everyone, she lashed out at me, saying that it was because of me that her marriage ended. She started to suspect that I wanted to be with her husband.”

Having an understanding of mental illness, Sharma understood her cousin’s condition, but was nonetheless overwhelmed. On the advice of her psychotherapist, Sharma took some emotional space from her sister till the time her treatment started showing visible effects.

Leanne Pais, psychotherapist and founder of The Unopened Box, a mental health startup believes that mental health issues can be challenging as they are often not diagnosed clearly, especially in non-severe cases.

She also points out that covert narcissism, emotional manipulation, and gender roles can create mental health challenges, making caregiving harder.

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Offering support

Pais explains that caregivers of individuals with mental health conditions often suffer from compassion and decision fatigue, as they continuously make decisions for their loved ones over focusing on their own needs, which can eventually diminish their capacity for self-care .

She adds that setting boundaries can be especially challenging for caregivers, as guilt or fear, driven by deep-rooted belief systems, often prevents them from doing so.

Pais further highlights that India’s culture of secrecy around mental health diagnosis adds to the burden on caregivers, making the role even more taxing.

To support caregivers, Pais organises support sessions within her organisation for clients and groups. These sessions help caregivers become more aware of their belief systems, reconnect with themselves, and learn how to meet both their own needs and those of the person they’re caring for by establishing healthy boundaries.

She also adds that the focus of these sessions is also to take the caregiver from protector to connection.

“One of the things we focus on is moving from a mindset of protecting them to connecting with them, to explore what levels of empowerment we can offer. When we give them empowerment, we also empower ourselves, recognising that they can have more than one supportive person in their life,” she adds.

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Experts decode strategies

Dr Agarwal also believes that it is essential to be mindful of one's own well-being before assuming the role of a caregiver.

“Prioritising physical health through exercise, proper nutrition, and sufficient sleep is key to maintaining energy and resilience. Setting clear boundaries with the patient and family members helps prevent overextension while seeking professional support from therapists or support groups provides emotional relief,” she suggests.

Additionally, she also believes that incorporating mindfulness techniques or relaxation practices into daily life can reduce stress, allowing caregivers to remain emotionally capable of fulfilling their role.

These techniques were what helped Niya (name changed), when she became the primary caregiver for her mother after she was diagnosed with 3rd stage breast cancer in July 2022.

She shares that her mother’s depression always made her tread lightly around her emotions, but with cancer and chemotherapy, it intensified, turning her symptoms into something far more unpredictable and severe.

She recalls her mother having crying episodes every morning, causing her to be late for work and important meetings.

“The worst part was being held responsible for mom’s suffering which is something she told everyone who asked about her condition. She would point to me and say ‘I would be fine dying but this girl won’t let me go’, which placed a huge amount of guilt on me,” she says.

Today both Niya and Manohar are trying to cope in the best possible manner.

While Manohar emphasises the importance of having a support network that can take the place of the caregiver when you can't, he is also taking therapy and antidepressants. Manohar also tries to take care of his health through cycling, trekking, running, and yoga. Niya, too, has turned to therapy.

One of the most important things for a caregiver, according to Dr Mona Gujral, Chief Psychologist, Coto, a women-only social community platform, is to treat oneself with kindness, because one needs to acknowledge all the hard work they are putting in.

In the same vein, Abbi also emphasises setting realistic expectations, both from the patient and from oneself.

“Caregiving doesn’t have to be a one-person responsibility. Shared responsibilities with delegation are essential to ensure the caregiver’s well-being and beneficial for the patient to have a larger support system in place,” she says continuing, “Pragmatic support could be offered in terms of time, finances, logistics, etc. Emotional support in the form of empathy, listening without judgment, and not always jumping the gun to offer unsolicited advice—instead, being there for the primary caregiver as well as for the patient, in whatever capacity possible.”

She also emphasises the importance of psychoeducation for both the patient and their family members, providing them with information about the illness, its prognosis, and effective management strategies.

“Various psychotherapeutic approaches are helpful, including supportive counselling. Cognitive behaviour therapy and mindfulness-based approaches are evidence-based interventions that can help caregivers manage their stress, thoughts, emotions and behavioural patterns more effectively,” she adds.

(*Some names have been changed to protect identity.)

(If you or someone close to you is facing mental health issues, you can contact the national 24x7 toll-free Mental Health Rehabilitation Helpline KIRAN at 1800-599-0019).

(The copy was updated.)