How covid-19 birthed the millennial caregiver
From navigating hospital visits to ensuring medical supplies, how covid-19 turned the millennial generation into responsible caregivers
There is a storm coming. There’s something bad out there. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it," David Kessler, co-author of On Grief And Grieving: Finding The Meaning Of Grief Through The Five Stages Of Loss and founder of Grief.com, said in an interview to Harvard Business Review (HBR) about the imagined futures that constitute anticipatory grief.
“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centres on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday."
These words have resonated with people across the world. Accurately deconstructing the pit in the stomach, alternating waves of distress and panic, since the covid-19 pandemic really hit India, Kessler gave coherent voice to the scramble of feelings people seemed to be experiencing. The interview hit those who have parents over the age of 60, and those who have parents over the age of 60 with co-morbidities, particularly hard.
The interview was all over social media, shared rapidly on 23 March, when it was first published, and in the weeks that followed as the lockdown came into force two days later.
The 60-plus group is most at risk in a covid-19 world. The virus, in its microscopic enormity, has revealed the fragility of a mother or father who had not been seen as “elderly", the vulnerability of individuals whose mortality had seemed distant enough so far.
Angshuman Chaudhary, 27, has lived away from his Guwahati home for nearly 11 years. The researcher at the Institute of Peace and Conflict studies (IPCS) in Delhi was to visit his parents before the lockdown was imposed. His mother suffers from asthma, father from arthritis, and both parents are mildly diabetic. While they live close to friends in an apartment complex, the lockdown has isolated them almost entirely—for now it’s the two of them and their three cats.
“It has all started bothering me now, especially after this, the covid-19 outbreak and the lockdown, where mobility is further restricted. They need more help now in terms of doing everyday things," says Chaudhary. When his mother had to be hospitalized recently owing to a severe stomach infection, Chaudhary’s father had to do all the shuttling, cooking and getting food to the hospital. “A hospital is a place where you are prone to infections right now," he says. “Usually I don’t feel homesick or anything but these days there is a latent anxiety. There is this sense that as soon as the lockdown is over, all I would really like is to go home."
In Visakhapatnam, Lingam Vaidehi, 37, moved back home from Delhi shortly after her mother had to spend three weeks in the ICU owing to a pulmonary embolism—“a clot exploded in her lung". She has now been cooped up with her parents for over five weeks, ensuring her mother, who is 60, is taking her medicines, has her BiPap and oxygen concentrator handy, and ensuring no one goes in or out of the house other than her sister, who lives a few minutes away.
Millennials in India have rarely been seen as caregivers but with the covid-19 pandemic widening the ambit of who is now vulnerable, they suddenly find themselves anxious, even about financially and otherwise independent parents. Whether it is Chaudhary’s unlikely homesickness or Vaidehi and her family organizing medicines four months in advance and putting off routine procedures, this generation now finds itself in an unfamiliar role.
“Initially, every day they had to draw her blood, to check the international normalized ratio (INR), based on which she would take a dose of the medicine prescribed," says Vaidehi. But though the frequency of these tests has come down, the family has decided to suspend them altogether and ensure her vitamin K intake is negligible—this means no potatoes, tomatoes, green vegetables. During lockdown, this kind of diet is neither easy to maintain nor procure, but they have weighed the risks. “Now she can take signs from her body—if her palms turn blue or she gets dizziness, the balance is off. But a lab technician coming in or her going out to get blood drawn is something that makes us very uncomfortable right now," says Vaidehi.
She adds: “I don’t think we will see a very dire state. We are hoping she will get to keep up through this."
Not even a statistic
According to the World Population Ageing Report 2017 released by the population division of the UN’s department of economic and social affairs, India had approximately 120 million people over the age of 60. But there is no assessment of caregiving for India, unlike the US, where theAARP, a non-profit interest group dedicated to empowering “people to choose how they live as they age", showed that millennials make up 25%—one in four—of the 40 million “unpaid caregivers". In India, the focus so far has been on the “sandwich generation"—and largely women—which constituted those between the ages of 30-50, who have to take care of their children and their elderly parents and in-laws.
“The problem is that we don’t have data in India from the perspective of caregivers, especially millennials, so everything then becomes anecdotal," says Lekha Subaiya, demographer and assistant professor at the Population Research Centre, Institute for Social and Economic Change, Bengaluru. “There’s a lot of research on ageing in Western countries because ageing is a much more pressing issue for them. For us, that hasn’t happened yet so everything that has been written, or the research here, is largely about how many old people there are and what percentage has chronic morbidities," she adds. According to the UN, however, the share of older persons—those aged 60 or above—in India’s population is projected to increase to nearly 20% by 2050.
For millennials, especially those in their 20s who have just started out on their careers, the pandemic has brought into stark focus the need to balance the logistics of parent care with the needs of their children, if any, finances and Zoom calls..
Pune-based Mayuri Purkayastha, a young fellow at the non-profit Teach For India, believes you need to become financially independent faster so your parents don’t have to support you during their retirement. “When people are taking a gap year or travelling, you are in a rush to do something or the other to ensure you are not a financial burden on them," says the 23-year-old. “It’s never explicitly stated by parents but you feel the hesitation yourself in taking support."
And that is exactly what she did. Purkayastha finished her studies and started work—today, she is financially independent. “My parents are very strong, practical people and they want me to grow up and be the same. My mother has seen the worst in life so she doesn’t believe in mollycoddling anyone."
In 2018, Purkayastha’s mother was diagnosed with B-cell lymphoma, a form of cancer. Her parents live in Kolkata but during the lockdown she has been working to procure medicines for her mother online or coordinating with pharmacists in that city on the phone. Her mother’s monthly medication costs ₹20,000—Purkayastha shares the expenses of the online orders.
Challenges such as these are significantly higher in a region like Kashmir. No stranger to state-imposed restrictions, Kashmir is presently dealing with a situation where only users with postpaid mobile phones have access to data, and that too at 2G speeds. This at a time when people around the world are working from home, using meeting apps, downloading informative videos or accessing information seamlessly.
Kashmiri journalist Shuja Ul Haq, 37, took his mother to Delhi in December, when she was diagnosed with leukaemia. After the initial rounds of chemotherapy, they returned to Kashmir in early March, just as the pandemic hit this part of the world. “Today, one wants to get help, medical advice online but the speed of the internet is slow here so you can’t really do that. It definitely creates an impediment—if you have to send documents to doctors, it’s hard, it’s slow. Sometimes it takes hours for pictures to load. But you have to keep at it, what else can one do?" he says.
Haq, whose parents stay with him, says he has managed to find a hospital where his mother can be treated. But every time they visit, they carry their own bedding and ensure she is covered head to toe, an attempt to protect her from the virus.
Some of the issues, of course, are universal. Healthcare is expensive, particularly for cancer.
Haq’s father is an advocate but doesn’t practise as much as he used to. There was insurance but it wasn’t enough for a disease like this. To begin with, the extended family helped and the family managed the rest from their savings. But with global markets and economies down, Haq is worried. “Now the economy is also very slow. You don’t know whether your jobs are secure. If at all they are secure, you don’t know if there will be salary cuts," he says. “The fact is that a disease and illness like this needs money constantly—you still have to get medicines, which is very expensive. You still have to go to the doctors. It’s definitely a cause of concern. We are taking it one day at a time."
Feeling of helplessness
The addition of covid-19 worries is taking a toll on the mental health of millennials. Mental health expert and columnist Pooja Priyamvada says many of the queries on social media and helplines of late have come from millennials living abroad, expressing anxiety about the health and safety of parents in India.
She lists the consequences. “There is often caregivers’ fatigue, which usually manifests in a lot of anxiety— because you are constantly anxious about the other person. Then there are times when you are unable to provide that care for whatever reason—like right now due to restricted mobility. A lot of times, due to this depression kicks in as well," says Priyamvada. She goes back to what Kessler believes is at the heart of what the world is experiencing through covid-19. “You feel inadequate. There is anticipatory grief, you feel like their safety, security, medical safety might be compromised. There is a certain helplessness about it."
Purkayastha, for instance, has been suffering from clinical depression since her mother’s diagnosis. “Being at a distance takes its own mental toll as well. There is a continuous uncertainty that’s lingering. You never know," says Purkayastha “But being away can also be a blessing at times, as horrible as that may sound. People tend to take illnesses differently so I suppose a lot has improved since my parents moved to Kolkata, where they are surrounded by friends. But earlier, in our house, all conversation was only about disease and prolonged thoughts of death."
According to a WHO report, “Even in India, a country where strong family ties have often been assumed to continue, only 20% of households include people living in joint or extended families."
Just ahead of the lockdown, as the number of covid-19 cases in the country began to swell, Shivank Jhanjhi, a 27-year-old law graduate, moved from Delhi to Gwalior to be with his parents. His brother lives in Gurugram, so he knew he would have to be in Gwalior to organize medicines—they are not easily available there, he says. Jhanjhi has been trying to organize medicines with the help of friends with dispensaries and pharmacies in the city.
In June 2018, when Jhanjhi was away on a fellowship in Karnataka, his mother was diagnosed with, and operated on for, breast cancer—his relationship with his parents has changed since.
“When the chemo was going on, that’s something which somewhat made a difference to me emotionally. Their (your parents’) behaviour completely changes, you see them as children. So over the last two years since she was diagnosed, the equation changed. Earlier, it was them caring about me more and I wasn’t really being responsible. But now it’s different," he says. “When I was in Delhi applying for a clerkship and all this covid-19 news started pouring in, all I could think about was how vulnerable my mother is and also the news they are consuming, the habits they stick to. I had to get back home and be there."
This concern seems to be a common phenomenon among millennials, particularly those living away from their parents.
Purkayastha has gone from speaking to her parents once a day to calling at least three times a day. Every time something causes anxiety, they are on the phone—whether it’s the rising number of cases or her building being declared a red zone. The communication has increased manifold, she is more patient and understanding.
Chaudhary is working towards a long-term shift in their living situations. “This is something I have started thinking about now even though it’s a very uncomfortable thing for me to think about. It involves taking some major life decisions, like getting a permanent home in Delhi where my parents can come and live with me for at least a few months in the year. They are getting old and I am the only child. That’s a big concern. I would prefer now if they move here at least for a few months of the year, I would like to see them more often. Psychologically, it would make a huge difference."
When the pandemic really hit home in mid-March, a common concern among millennials in urban set-ups, it appeared, was to keep their boomer parents indoors and ensure they followed social distancing protocols. The state-imposed lockdown, however, has made the vulnerabilities far more conspicuous, all-encompassing—a gnawing worry.
From going out of their way to ensuring they don’t infect their parents (frequent baths, changing clothes as soon as they get back home, making sure their parents eat right) to combating fake news, navigating hospital visits, worrying from a distance and trying their best to cope, the pandemic has changed the way they are viewing the elderly.
The balance, as Kessler points out in his interview to HBR, lies in shaping, not ignoring, anticipatory grief. “The goal is to find balance in the things you’re thinking. If you feel the worst image taking shape, make yourself think of the best image. We all get a little sick and the world continues. Not everyone I love dies. Maybe no one does because we’re all taking the right steps."