NEW DELHI: Caregiving is never easy.
And when it’s a pandemic and caregivers themselves are either unwell or at risk of contracting the infection, the stress and strain is not just compounded but also complicated in many different ways.
As the devastating second wave of the Covid pandemic dips in several parts of the country, those tasked with looking after the ill, often spouses, children or parents, are still grappling with the physical, emotional and mental strain.
In many cases, Covid patients were forced to turn caregivers for the more critical members of their family as the health infrastructure crumbled with no hospital beds, medicines or even life-saving oxygen.
Notwithstanding their rising temperatures, and mind numbing head and body aches, for weeks on end they cooked and cleaned, fed their ‘patient’ and took them to the washroom.
And most of all stayed alert in case things went south.
“The biggest challenge of being a COVID-19 positive caregiver was staying sane in the chaos,” said 34-year-old Bhushan Shinde whose father Madhukar tested positive less than a week after him.
The isolation due to the infectious nature of the disease and the fact that no friend or extended family could help only added to the burden.
While both started with mild symptoms like low grade fever, cough and body ache, his 65-year-old father’s condition deteriorated soon after, said the Mumbai-based Bhushan.
“Initially his CT score was in the mild category, but when it increased, we decided to get him hospitalised,” he said.
The most stressful period was when he had to scramble for remdesivir injections, not just for his father’s treatment but also for his 83-year-old uncle and his cousin who too fell sick around the same time.
Running around frantically at a time when his body needed complete rest did not help, he said.
“With the whole rush for remdesivir, I had to keep aside my physical and mental condition and it took a toll on my body.”
It’s been over two months since Covid panic took over the Shinde household, but the struggle is far from over.
Bhushan and Madhukar are still dealing with the challenges of post Covid symptoms.
When the going gets tough, COVID-19 specialist Suchin Bajaj recommends caregivers remember to take a break.
“There are many cases of caregivers becoming patients, and patients becoming caregivers because they do not have a choice, and during the second wave, it was very common to see entire households getting infected.
“The risks when you are taking care of a Covid patient and you are a Covid patient yourself is that you may exacerbate your disease. The complications may be much more. To minimize this risk, it is important to rest as much as possible,” said Bajaj, founder director of Ujala Cygnus Group Hospitals in Delhi.
Many COVID-19 caregivers, because they are young, also have no experience at this job.
With the suddenness of the pandemic, they did not have the time to prepare either.
According to a study conducted in September-October 2020 by pharma giant Merck, 39 per cent Indian millennials surveyed took up caregiving roles during the pandemic for the first time.
The trauma of dealing with the illness lasts much longer than the illness itself, said psychiatrist Jyoti Kapoor.
“This has taken a toll on the psychological health of most caregivers with longer lasting symptoms similar to PTSD. There has been an increase in instances of acute stress reaction, panic attacks, psychosomatic manifestations and psychosis in Covid patients.”
“One of my clients, a 26-year-old woman, continues to get palpitations even a month after she lost her father to COVID-19 on hearing the beeping sounds of the monitoring devices in hospitals,” said the psychiatrist.
She added that the first steps towards dealing with such problems would be to acknowledge one’s vulnerability, and seek professional help.
Mansi Arora* and her husband often talked about caregiving when their parents eventually got old.
But COVID-19 hit like a “bomb”, said the 28-year-old with her father-in-law and mother-in-law getting infected within days of each other.
“From just having fever, in less than five days they went into a state where we weren’t sure if they would make it,” she said.
And then Mansi* and her husband also tested positive.
The couple had a harrowing 20 days during which her father-in-law was first admitted in a Covid care centre in Delhi, and then moved to a hospital.
While the Covid care centre had all the provisions, medicines, oxygen, food — it seemed to function as a self service facility even for patients who were dependent on oxygen.
“We hadn’t slept in days, eating was a challenge with the loss of taste and smell, and our anxiety levels were shooting through the roof. But our health was not a priority at the time.”
“My husband admitted himself at the centre too while I was travelling back and forth from our home getting supplies. During the two days my father-in-law was there, there was barely any medical assistance. We even dragged an oxygen cylinder weighing 100 kg by ourselves,” she said.
What followed was a frantic search for a hospital bed and oxygen cylinders, and after several calls and help from a few friends, he was hospitalised.
Kolkata-based Ravi Sharma*, who also tested positive along with his parents, said it was very difficult to see them struggle to walk even a few metres.
“I am sure I could have helped them more, and made the process a little easier, if I wasn’t unwell myself,” the 25-year-old said.
The pandemic also brought to the fore the challenge of isolating in most Indian homes that are small, the trauma of the disease and its aftermath straining the family fabric.
Kolkata-based Shruti Purkait, 25, was the first to test positive in her family.
She handled most of the work for her 57-year-old father and grandparents (above 80), so it was almost inevitable they would catch the virus.
And they did.
“Thankfully, none of us had to be hospitalised,” she said.
There was enormous panic though.
Her father, overcome with fear, turned to astrology and the stress within the household would often lead to squabbles, eventually hampering recovery.
“Things became really stressful when my father started panicking about my grandparents and started directing his anger at us. He became superstitious and began relying on astrological factors rather than believing in medical science and logic,” Purkait said.
According to Union Health Ministry data on Thursday, 3,91,981 people have lost their lives to Covid.
Too many caregivers have lost their loved ones to this disease despite their best efforts, and doctors warn against blaming oneself, whatever the outcome.
“Do not overdo things and remember that you are not Superman or Superwoman, and most of all remember that you are not to blame for it,” Bajaj said.
(*names changed to protect identity)