Despite a growing demand for at-home care as India’s ageing population steadily rises above 130 million, professional caregivers remain a largely invisible workforce. Neerja Deodhar spoke to six caregivers about the challenges of a job that often blurs the line between the personal and the professional.

Illustrated by Ananya Broker Parekh.

When my grandfather died in 2015, it felt like he was leaving us for a third time; the first was when he sailed off to Germany for work, the second was when he was taken to the hospital after suffering a stroke. He’d spent his last years confined to a bed, unable to walk or eat without help — a life that had seemingly reduced in both possibility and size. The only dignity that could be offered to him was love and non-judgmental support.

This came in the form of countless caregivers — mainly women, who were trained in tending to the elderly and sick. I will never forget how, in the hours after he died, his last caregiver helped us hold space for our grief while coming to terms with her own.

Professional caregivers often find themselves navigating the complexity of such attachment: of traveling far from their own families to look after strangers. Of devoting hours to ensuring this stranger is at ease. Some may develop strained relationships with their employers, who view them with distrust or suspicion. But most of the caregivers who spoke to me said that they found in their employers a second family.

What is visibilised — and what is not — in a society can tell us a great deal about its culture. The infirm, the old and those who do not ‘contribute’ in conventional ways are sometimes disregarded or no longer viewed as individuals. And so, those entrusted with their care become invisibilised by extension — and their labor is often taken for granted. This is despite a growing demand for at-home care as India’s ageing population steadily rises above 130 million.

And yet, most caregivers tend to bring up the subject of their conscience and the responsibility that accompanies their work. There’s also the realisation that they are a constant in the patient’s life, and the person they are closest to.

We spoke to six caregivers about how they navigate a job that often blurs the line between the personal and the professional.

Vikas - TWENTY-FOUR - Bhopal

Vikas’ interest in caregiving was born from what he saw in pop culture — about how elders and seniors were ill-treated or forgotten by their own families. What he finds odd is that some families are hesitant about tending to ageing relatives. This is a gap in family care that Vikas hoped to fill through his work. Six years after he began working as a caregiver, he says he has found both happiness and satisfaction.

Most of his clients need moment-to-moment assistance. His work involves paying close attention to detail, and he must consider things such as the size of food morsels or the amount of water he feeds to patients.

The most challenging aspect of his work is mistrust; some employers have suspected that he wasn’t doing a good job. On the other hand, there are families who welcome him into their households and confer all responsibilities related to the patient. They put more faith in his diligence and ability to take care of the patient than in themselves.

Vikas recounts an incident involving a household where he worked for 5-6 months, where the patient died unexpectedly. Vikas was anguished not only by this patient’s death but also because the family refused to touch the body. But he remains in touch with this family — they have developed an ongoing relationship.

Rajashree - sixties - Virar

Rajashree rattles off her routine with a practised, fast-paced precision: it features over two dozen tasks and includes do’s and don’ts.

She says that the individual she’s currently caring for was once an extremely independent woman who ably took care of herself for decades. For such a person to now rely on someone else must be frustrating, she remarks. According to Rajashree, the way to respond to this struggle is to make sure the individual feels seen and that their frustration is not ignored.

Rajashree says that the ability to understand what a person needs comes instinctively to her; sometimes, even before they articulate it. She describes it as though it is built into her muscle memory — before she was a professional caregiver, she supported her husband after his surgery, financially and emotionally. Even though he’s not very happy about her decision to be a caregiver, she feels empowered by her profession.

Only a few months ago, she found herself in a tense situation; the individual in her care had to be rushed to the hospital late at night, and she was the only person at home. Though her nerves may be frayed at such moments, anger and resentment (at the client) are out of the question, she asserts.

Grief and sadness are harder to contend with; in the past, she has been reduced to tears because of the many physical ailments that a previous client suffered from. You have to be able to set aside your own feelings to be able to do this work, she admits.

Assanar PV - FIFTY-FIVE- Thrissur

Assanar has spent 20 long years being a caregiver — he was prompted to take on this work because of the death of his father, who had no one to tend to him during his last years. He is driven by the thought that old people deserve support. And when a client’s health improves under his care, he feels validated.

Assanar says the main challenge of this work is the physical labour it sometimes involves, such as lifting a patient or helping them walk. These difficulties are further complicated by excess weight or memory problems.

Emotional attachment to his clients takes a tangible form; if the person in Assanar’s care is unwilling to eat, he finds that he loses his own appetite. The death of a client impacts him even more deeply, because he views his clients as parent figures. He finds consolation in the thought that we all have to go, someday.

Shanta - FIFTIES - Mumbai

Shanta believes that it’s imperative to be objective when the patient is being difficult. As is knowing that many of them are infant-like, which is why they deserve the sort of tenderness one extends to a child.

Shanta, who has been a caregiver for four years, was a vegetable seller in the past. She took on this work to pay off a loan, as caregiving pays better than her previous profession.

She thinks she’s well-equipped to do this work because she’s used to hard, painstaking labour. When asked about the difficulties she faces, she says she can’t point to any. Since she doesn’t view her clients as being strangers, she doesn’t compromise on their care.

Nivekha -TWENTY- Chennai

Nivekha never really had a Plan B for her career. After a skill-based course on nursing and taking care of elderly family members as a young girl, she was certain that she wanted to be a caregiver. Her ambition was supported by her family, who took pride in her compassion.

But three months after she began work, Nivekha has had to pause to tend to her own health.

During those three months, she undertook complex tasks like feeding a patient through a stomach tube every two hours. And though she was not intimidated by the work, she has found it challenging to say ‘no’. Especially to a client who wished they could eat food instead of ingesting it in a way that did not feel real.

Nivekha is keenly aware of her own courage and looks forward to starting work again.

Sapana - TWENTY-FIVE - Yavatmal

Three years after she first began caregiving, Sapana is certain that she doesn’t enjoy this work. But she’s quick to clarify that she hasn’t been forced to take it up either. Her approach is pragmatic; she decided to become a caregiver to shore up her finances since she hasn’t had to go to college, due to the COVID-19 pandemic. She’s pursuing her Master’s degree and sometimes studies during free hours at work. She also works at hospitals when she finds the time.

Like many others, Sapana also finds the physical aspects of this work challenging — such as lifting the patient, or helping them into a wheelchair.

Her voice softened when we spoke about the emotional attachment her work leads to. She says her ability to be good at her job is tied into how she seamlessly becomes part of the employer’s household.

Neerja Deodhar is a Mumbai-based writer and editor with five years of experience in Indian newsrooms. Her areas of interest include art, culture and gender. She tweets at @neerjadeodhar.

Labour of Love