Pandemic & Burden Of Caregiving: How Women Fought All Odds To Continue Taking Care Of The Sick

On May 4 this year, Mumbai resident Brinelle D’Souza’s family of five – comprising herself, her father,?daughter, son?and housekeeper?tested positive for COVID-19. Although none of them showed any symptoms in the initial days, D’Souza was on the edge for she didn’t know when things might take a turn for wrose, more so because her daughter’s oxygen saturation was falling.?

“As my family’s principal caregiver, I was doing a number of things, including consultations with doctors, organising diagnostic tests, annotating reports and medical advice, procuring medicines and groceries, besides helping with cooking, cleaning and other household chores as my housekeeper was also infected,” said D’Souza, Chairperson of the Centre for Health and Mental Health, Tata Institute of Social Sciences, Mumbai, and Co-convenor of public health advocacy group Jan Swasthya Abhiyan.?

“But the most stressing part was not knowing what turn things would take – What if any of us fell severely sick? Would we find oxygen or hospital beds? Would we be able to afford treatment that cost lakhs??We had good medical advice but?COVID is unpredictable and medical knowledge still evolving. I felt suddenly responsible for four other lives, and couldn’t keep away from thinking, what if I make the wrong decision?” she recalled.

D’Souza’s fears and doubts intensified further when her father’s oxygen levels started falling rapidly a few days later, and she had to decide where to admit him. “Private hospitals were?often into irrational care, including excessive use of?drugs like remdesivir, tocilazumab and steroids?so we wanted to avoid them…I had a friend?who was a senior physician at Shatabdi Hospital, a government?COVID facility that was close by. He assured me that my father would be managed well.

Her father,?Noel D'Souza (79)?was admitted in Shatabdi Hospital on?May 10.?Although stable for the first?two days, his condition deteriorated?on the night of the May 12. He was put?on a ventilator?and passed away in a couple of hours.??

D’Souza herself?started showing symptoms?within a day of being diagnosed with COVID infection. Her?oxygen saturation dropped, and she had severe diarrhea and weakness. But she did not seek hospital admission because there was no one else to follow up on her father’s treatment and take care of family members.?

“The day my father died, I was sitting on the floor outside the ICU with my daughter, both of us very sick. We were not allowed to enter the ICU. The doctors said that my father had developed early stages of COVID pneumonia and we would be vulnerable to it given our reduced immunity levels. So, I could not even see my father one last time,” she said, drawing attention to the unresolved grief and fears of death and dying brought on by the pandemic. “I got admitted later that day. My oxygen level had fallen to 70. While leaving for the hospital,?I made it a point to tell my children that I loved them immensely and always had their best interests in mind as I wasn't sure that I would come back,” she added.

She was discharged from the hospital on?May 23, and?had a very slow recovery. In addition, she suffered from?survivor’s guilt. “Even now, I keep thinking, should I have admitted him in a private hospital? Would he have survived, then? The lack of physical support, of relatives visiting and collectively grieving, has only worsened these fears and anxieties,” she said.

Pandemics, Caregiving And Women

D’Souza’s case is emblematic of how the pandemic has complicated the task of caregivers in significant ways. It has added to their work burden, drained their financial reserves, heightened their fears and doubts, compromised their access to support – especially physical support from relatives and health care providers, and forced them to confront thoughts of death and dying rather closely.

An overwhelming majority of those encountering such circumstances are women, largely because they are consigned to care-giving roles in most religious discourses and social institutions, including the family, where they spend most of their time. Their tasks as caregivers typically include a host of chores like cooking, cleaning, ensuring the household has enough stock of groceries and kitchen requirements, and monitoring and looking after children and sick family members. Whereas even in the healthcare industry globally, women comprise 70 percent of the paid care-giving workforce in roles like nursing.?

Given these circumstances, UN Women issued a policy brief in the early stage of the pandemic warning of its impact on gender equity. “Evidence from previous epidemics illustrates that women and girls take on the bulk of unpaid or poorly paid care work in families and communities when formal health systems are unable to cope with the rising tide of infections,” it stated, and warned, “Rising demand for care in the context of the COVID-19 crisis and response will likely deepen already existing inequalities in the gender division of labour, placing a disproportionate burden on women and girls.”

Extra Pressure, Urgent Steps

Emphasising on the “extra pressure on carers” owing to the pandemic and related lockdowns and restrictions, UN Women recommended member states to take a number of urgent measures.?

These included recognising care workers, both paid and unpaid, as essential workers so they were exempted from restrictions; expanding their social protection, including through cash transfers and reduced work hours; providing them with a minimum level of childcare services; and prioritizing access to food and basic services.

Healthcare workers and activists associated with public health advocacy groups like Jan Swastha Abhiyan said none of these recommendations were acted upon in India, compounding the challenges confronting caregivers amidst the pandemic, and leaving them without any institutional support.

Challenges, Fears And Lack Of State Support

Testimonies of caregivers from West Bengal and Maharashtra exposed the lack of state support, and provided insights into the challenges and pressures they encountered during the pandemic.?

Like most others, Kolkata resident Chandana De spoke of the immense fear and anxiety she underwent in April this year when her largely bedridden 90-year-old mother suffered a head injury from a fall in the bathroom. “It happened late at night, around 2-3 AM. I applied ice and dressed her injury after the bleeding stopped. The next day, I tried my best to get a doctor to see her, but most were unwilling to visit home, and the one who agreed did not come owing to some misunderstanding. Suddenly, towards the evening, she started becoming breathless,” recalled De, who lives alone with her mother on the outskirts of south Kolkata.

Neighbours stepped in promptly to help her, and measured her mother’s saturation, blood pressure and sugar level, which was found to be low; she also developed speech impairment. Concerned if the head injury was severe, De and others took her to Peerless Hospital, where doctors examined her and said she had an internal hemorrhage, and required immediate hospitalization with ventilation support.?

“But they were unable to show us any reports stating there was a hemorrhage. Besides, even a 3-4 day stay in the ICU would at least Rs 3-4 lakh, which I did not have. So we took her back home. And then for five days, all I did was talk to my mother, I was sacred she would die, and did not sleep a wink, but neighbours visited often, and provided us food and strength,” said De, whose mother recovered significantly in ensuing weeks.?

Despite being the sole caregiver for her ailing mother, De was not recognised as an essential worker. She received no exemption or social protection from the state to contend with her mother’s illness, neither provision of food and basic services, like doctor visits at home.

The circumstances facing Sikha Bhattacharjee, a retired government employee whose husband was hospitalized five times due to COVID and post COVID complications between May and July this year, were similarly distressing. Based in Asansol in West Bengal, she struggled to find doctors who would physically examine her husband Tapan Bhattacharjee through his sickness as most doctors saw patients via video calls or behind a screen. She also faced immense difficulty in accessing oxygen and ambulance services and hospitals providing quality, affordable treatment and care each time her husband’s sickness worsened.?

“Most numbers of government approved service providers for ambulance and oxygen were either switched off or out of network area. And many who answered refused after getting to know the patient was positive,” she said. Equally critical of COVID volunteer groups, including those associated with NGOs, civil society groups and political parties, she noted, “Most groups make huge claims about helping COVID affected people on social media, but their work is largely limited to delivering food, grocery and medicines to homes of patients. They don’t even enter the homes of COVID positive patients, leaving delivearables at the doorstep! And when it comes to support in emergencies, with oxygen cylinders and ambulance, all they do is forward the numbers of service providers who either don’t answer phones, or promise to call back, or ask for a huge amount of documentation, like details of the patient, copies of identity cards, and photographs showing oxygen saturation – all while someone is dealing with an emergency!”?

Like in case of D’Souza and De, neighbours and family members helped Bhattacharjee tide over emergencies. Even then, she struggled to comprehend how her husband was doing when hospitalised, especially since chances of visiting him or interacting with doctors was absent or severely curtailed. These uncertainties, and the additional work burden, severely affected her physical and mental well-being.

“Even now, on days when my husband does not keep well, we are gripped by fear and anxiety – Will he survive? Will he have to be hospitalized again? Will doctors and nurses take good care of him, and inform us about his progress…My blood pressure has dipped a lot lately while palpitations have increased – and often, I feel like l’ll go mad,” she said.?

Impact On Mental Health

Mental health professionals said the toll of the pandemic on caregivers was immense, and included anxiety and depression most commonly, but also Post Traumatic Stress Disorder and survivor’s guilt, especially if they lost patients or relatives.

Mumbai-based psychiatrist and mindfulness teacher Rajendra Barve drew attention to the compassion burnout among professional healthcare workers, including doctors and nurses, as a result of uncertainties surrounding the pandemic. “Even in critical illnesses like cancer, there is a well-established protocol and the diagnosis and path of treatment are very clear. But in case of COVID, there is hardly any protocol or prognosis, and even doctors are not very sure about what might happen to patients in future.? Plus, there are long duty hours, increased demand for care from patients, high risk of infection and the labour of working with PPE kits, which is very cumbersome and tiring. I’ve seen a lot of cases of burnout among resident doctors and nurses in recent months, but the biggest casualty for caregivers is compassion burnout – where they are too tired and appear indifferent, less warm? and understanding towards patients and their queries,” said Barve.

Brinelle D’Souza, Chairperson of the Centre for Health and Mental Health, Tata Institute of Social Sciences, Mumbai whose father passed away recently, drew attention to the lack of spaces for collective grieving for caregivers and families contending with death.?

“Because of the pandemic, you can’t go for funerals. There is no one to condole or wish you, stand by your side and comfort you physically as in regular times. There’s no scope for grief and grieving,” she said, and stressed that the distress facing poor women was more severe, especially in cases where they lost their husband.?

“The loss of the breadwinner creates deep financial distress, and I know several women who were often forced to make desperate decisions like selling their jewelry or taking micro-credit on high interest to pay for the treatment of family members, or put food on the table, pay house rent,” she said, drawing on her work as a public health activist.?

“What we need urgently are safe spaces both online and offline where people can talk and grieve collectively. We also need strong social security measures and comprehensive relief packages from the state, especially for the poor and marginalized. These will help reduce to some extent the distress that many households and caregivers are experiencing. We also need community mental health programs. For this, we must train community members as mental health volunteers, whom people can reach out to in times of distress,” said D’Souza, who was involved with Jan Swastha Abhiyan’s efforts to train community mental health volunteers in Mumbai during the second wave of the pandemic.

The writer is a freelance contributor based in Kolkata.?