Informal caregiving in India is in dire need of a reality check

In India, legal, social, cultural and economic values emphasise the role of family in informal caregiving. While such support can definitely aid a patient’s betterment, a lack of affordable institutional care and limited state support makes it distressing

“A friend of my mom’s told me a few years ago, ‘you have 32 teeth in your mouth, but when one tooth is paining, your tongue constantly feels around the gums and keeps checking in on it. It’s like you don't have the other teeth at the time.” This is how Dimitrius Rodrigues, a 27-year-old marketing and administration manager based in Bengaluru describes his experience of informal caregiving to a family member. Rodrigues has been part of a caregiving family ever since he was born. His two-year-older brother suffered from kidney ailments since infancy, subjecting him to frequent medical check-ups and constant monitoring. When his brother  was 14, his second kidney failed and he underwent a transplant from their mother. He passed away in 2022 at a young age of 28.

Informal caregiving, worldwide, is a challenging feat. Taking the responsibility of someone’s well-being for the long term isn’t easy for any individual, even though it comes to many of us as a natural instinct. However, in India, legal, social, cultural and economic values emphasise and uphold the role of family in informal caregiving. While support and care of loved ones can definitely aid a patient’s betterment, a lack of affordable institutional care and limited state support makes it all the more distressing and laborious. 

Long-term caregiving for patients with chronic illnesses also leaves a significant emotional and financial impact on young caregivers, often affecting their personal and professional decisions. Stephen Gomes (name changed upon request), a 29-year-old from Goa who runs a branding consultancy in Mumbai said he wanted to be a surgeon and also pursue his love for photography, both expensive and time-consuming disciplines, but had to change courses and fast-forward his career to earning at a young age of 17 because he had to take care of his parents. In November 2020, Gomes’ father, a hyper-diabetic patient, passed away. Four months later, his mother suffered from a brain aneurysm, compelling him to take complete responsibility for her care. Switching between Goa and Mumbai, procuring the finances of providing at-home care for his mother, and managing a team while also taking care of the house is a mouthful in itself, but these are all balls Gomes had to keep up in the air. “I was extremely angry at the whole situation. I would sometimes get angry at my mother and tell her straight up that ‘you're ruining my life’,” admits Gomes. But even though he harboured resentment to “the life I was given rather than chosen”, Gomes had little option but to accept his caregiving responsibilities.

The relationship between the caregiver and care recipient plays a key role in determining if caregiving becomes burdensome. If conflicts arise, it indirectly affects the caregiver's burden. When Seniz Rego’s grandfather became paralysed post a stroke, her mother explained to her and her younger brother that they have to take care of their “papa” like a baby. “She never made us feel like he had changed or something was wrong with him. So everything we did for him was treating him like a baby. Like how you would hold a baby with care or feed them or baby-talk with them, ” says Rego, now a 25-year-old dance teacher based in Goa, who was all of 10 when she started helping her family take care of her grandfather. “Doctors had told us that he would survive for only three more months. It’s been 15 years now and I don’t think we have cut any corners when it comes to him. The initial five years of his paralysis were difficult—it was a lot of getting used to, hospital visits, and doctors. It's not like he was just sick. He wasn't capable of doing so many things, and so we had to be his hands, legs, tongue.” 

Rego shared that even though the routine of taking care of her grandfather fell into “auto mode” as everyone in the family had their responsibilities cut out, being a caregiver during her formative years impacted her emotionally and mentally, forcing her to grow up earlier than her age. “Caregiving gives you a reality check that most people get as adults. But I had this as a child,” she shares.

Accelerated by the pandemic 

Constantly being on alert mode is also something 27-year-old Sathi Ghosh from Durgapur, West Bengal, has experienced while taking care of her paternal grandmother. “No matter where I am or what I am doing, I’m always alert to any sounds of her calling for help. Even if I am outside, I am always rushing to come back home because someone has to be there for her.” Ghosh’s grandmother, an ailing 85-year-old with vertigo and cardiac issues, started falling ill a year after her husband passed away, back in 2016. While she needed extra care with doctor visits and hospitalisations, it was in 2021 a COVID-19 infection only worsened her condition, forcing an urgent hospitalisation in the ICU to monitor her breathing problems.

If informal caregiving was already hard, COVID-19 made it a crisis, especially for caregivers to elderly patients with chronic diseases and comorbidities. With healthcare access constricted at a time when older people were at a high risk, many caregivers had to tend to the patients at home with limited medical knowledge in order to avoid infection in formal medical facilities while being at risk of infection themselves, much like Ghosh and her family. “We all caught the virus during the second wave, right after my grandmother returned home. We didn't have any help at the time and had to manage everything by ourselves. I was running a high fever and had also developed breathing problems. Taking care of an elderly patient while being sick ourselves definitely took a physical, emotional, and financial toll.”

India's US$2.9-trillion economy faced a significant slowdown during the pandemic-induced lockdowns, impacting various sectors. Official data reveals a 7.3 per cent contraction in the April-June quarter in 2021, the worst decline since 1996. Surveys by the Centre For Monitoring Indian Economy show a notable increase in unemployment rates, ranging from 7.9 per cent to 12 per cent in the same quarter of 2021. So it hardly comes as news that caregiving became particularly financially straining for most individuals.

A compounding toll on caregivers

While many managed to continue to work remotely, some didn’t have that privilege. Ghosh says that her parents, who were financially responsible for the household at the time, had to stop working entirely because offices and factories were shut. “Our medical expenses went up sharply. The financial burden felt too heavy to bear then,” she says. For Rego, even though the pandemic brought respite in terms of caregiving responsibilities within her family, “financially, it got a lot difficult because my father's business is a hotel, so that wasn't running because no one was travelling. Earlier, my grandmother would receive a monthly pension, which helped a lot with my grandfather’s medical expenses. But after she passed away due to COVID, that had reduced significantly. We had a caretaker for my grandfather at the time, but we had to let him go,” Rego shares.  

Along with financial stress, anxiety and social isolation, caregiving has also been found to have a long-term effect on caregivers’ physical or emotional health. The constant demands of caregiving translate into elevated stress levels, often pushing caregivers to the brink of burnout. “If I ever want to even put my phone on silent mode to get some rest, I can’t do so because my grandmother often calls me from her room when she needs me to pick her up from bed,” says Ghosh, expressing that she struggles to pritorise herself and her self-care. “I can’t live my life the way I’d perhaps have liked to. But I’ve gotten used to it and accepted it,” she adds.

Looking back on his caregiving journey, Rodrigues notes that it took him a long time to come to terms with his reality. As the youngest in the family, he often dealt with feelings of unfairness due to the special treatment meted out to his brother. With acceptance came realisation of his responsibilities towards his family. “Caregiving pushed me to want to do better in school, finish my education early, and get a stable job. In that process, I've made career mistakes because I played higher stake gains. But I wanted to make sure that I can eventually provide for my family.”

For Gomes, the financial and physical toll on his body added to the emotional challenges he faced while caring for his mother as he was fighting prediabetes then. “Even though I earn sufficiently, I never have any savings because I'm either paying off loans I took for my mother’s medical expenses or paying for her care presently, which is quite a big burn. I can never enjoy my own money, and it doesn't allow me to appreciate life emotionally in a lot of other ways. I've told myself that I just need to be alone because I'm emotionally unavailable. But perhaps the biggest challenge has been to be able to switch off. I'm constantly in fight or flight mode, which has made me morbidly obese.”

An inevitable guilt

Sometimes, a profound sense of guilt and self-blame can accompany the inability to meet perceived expectations of perfection in caregiving or even in wanting to prioritise oneself. Two years ago, Rego decided to move out of her house to start her dance school which would mean forfeiting her caregiving responsibilities. “I felt guilty and selfish. I know that my parents are dealing with their own difficulties and I'm just out here chilling, having fun, dancing. And to be honest, this guilt didn't just start when I had to move out. It started much earlier when I would stay out of the house because I needed a break. In a house with so many people, it's difficult to find your personal space. But in the bargain, I couldn't do my bit for my grandfather  because I knew every time I would come home, he would be very happy. I had my own share of things that I was also dealing with during my teenage years. It's difficult to put your personal problems aside, to remember that you have someone to take care of, and put on a big smile and be happy around them.”

The need for support

Recognition, acknowledgement and mental health support of caregivers is non-negotiable, especially in the aftermath of the pandemic. In fact, research argues for caregiving to be a public health issue as it is the backbone of long-term care. Even then, contributions of informal caregivers go largely unnoticed. According to Ghosh, community-level empathy and recognition of the challenges of caregiving as well as help from immediate neighbours and their workplace can go a long way for working people who are caregivers. Gomes points out that a verified repository of medical care information in a place like Goa would make caregiving for his mother much easier and safer. 

Even though long-term caregivers may find it difficult to relinquish their responsibilities, momentary respite from round-the-clock caregiving is crucial. While Ghosh says that doing yoga at home is all she can afford as a way of taking a break, for Rodrigues, going out cycling after a day of work and caregiving helps, besides meeting his friends. Gomes recently turned to therapy, partly thanks to the pandemic, which put the spotlight on mental health. “I realised I couldn't do simple tasks like reply to emails or messages, and that's when I finally took the plunge. Therapy got me to share so much without feeling angsty or breaking down. I’ve also learnt to make my peace with things. Maybe in my next life I'll become a great doctor, I don't know. But for now, it is what it is.”

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