There’s a need to ‘recognise, celebrate and salute’ the untiring job of caregiving, which has become doubly challenging in the pandemic
This picture has been used for representational purpose
What would happen if your life turned around completely in a day? The unexpected and heart-breaking loss of a loved one, the impulsive conception of a baby, the fortuitous reunion with an adopted twin, the unanticipated life-imprisonment for a crime not committed, the prodigious inheritance of an undeserved fortune or the startling loss of all your material possessions, an acid attack or an awakening, the loss of sight or deeper insight. Would we be ready, if any of these were to happen to us?
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A few years ago, my cousin delivered a gorgeous cherubic baby boy. Ours is a family of over a hundred people, so there is no such thing as a contained celebration; the hospital security found it hard to regulate visitors. And then, we were given unnerving news. On Day 4, just as they were to return home, the baby was observed as having some unusually brief jerky movements in his limbs. He began blinking his eyes unconventionally. His mother knew instantly that something was amiss, and an astute neurologist recognised these to be seizures, or, as we understand them, epileptic fits. An EEG confirmed the diagnosis and an MRI done at one week of life showed an abnormality over the right half of his brain.
“We have to start him on anticonvulsants, and if the seizures cannot be controlled, we might even have to operate to disconnect the abnormal focus from firing,” the neurologist proclaimed. We brought him home on a plethora of medication. “We can’t operate until the child weighs at least 5 kg and is about three months old,” I cautioned. “It’s too risky, as this surgery involves some blood loss, and if we can’t replace it, we might lose him,” I concluded, seeing him twitch in front of our eyes. It happened 40-50 times a day, each time damaging a little more of his precious brain.
She gave up a flourishing career to focus on him. She overdosed him on her breast milk, so that he would put on the weight required to withstand surgery. She fed him his medication like clockwork. While the phones of other parents are filled with giggling kids, hers was brimming with variations of seizure activity to send to the neurologist, so as to adjust his medication. We huddled as a family, consulted with doctors across the globe, discussed his case at various epilepsy meetings, and finally, flew down to a centre of excellence in South India for the operation.
“It was overwhelming to see this baby of mine come out of the operating room with a huge scar across his head, and drains and pipes sticking out from every orifice of his body, but the greatest blessing has been that he’s been seizure-free since surgery,” she said with a smile that never left her through her stoicism.
They brought him home a month later, but the real work of paddling her canoe upstream had just begun. It was time to get him upto speed with the cognitive development that the seizure activity had taken away.
Every single day for the last three years, it has been a routine. She sleeps past midnight and wakes up at 6 am, cooks his food herself, then wakes him up, brushes his teeth, gives him a shower with a loofah to provide adequate tactile sensory input, gives him towel compressions, and then does a series of vestibular exercises to zone him in. After some breakfast, they go to the terrace to get some sun and indulge in physical play, which, after a few years of diligent work, now includes football, learning how to cycle, running, and crossing obstacles.
Before the pandemic, she used to take him to the physiotherapist and occupational therapist five days a week, to the speech therapist once a week, and do a follow up of all the therapies at home post the sessions. However, thanks to the lockdown, it’s all shut and she’s turned into all the therapists herself, learning the dos and don’ts from each of them, and then teaching them to her son. There are daily vision, oro-motor, sensory exercises to be done. And, in all of this, she still has to ensure he gets his medication on time.
Evenings are usually dedicated to sibling play with actions, song, and dance. “I cook, clean, and take care of all my other stuff whenever he’s napping,” she says, without sounding exasperated. “And I couldn’t do any of this without the support of my husband and everyone else at home,” she smiled, giving him a huge whack on his back, while talking to me. “I’m filled with joy to see our son do the things we always wondered how he’d ever do, and he completes our family in the most unique way.”
While the centre of every illness is the patient, we often tend to neglect the immediate caregiver. We ignore their struggles, assume their resilience, and never pause to ask them how they are doing. We have no idea what they think about in their quiet moments, what their fears and insecurities are. It’s unfair to believe that they don’t need to be fortified, no matter how tough they appear. We need to ensure that their cup is always full; only then can it overflow. There is a caregiver in almost every other home of every street in every corner of the world, who is looking after a child or an adult with the resoluteness of helping them get better. We need to recognise, celebrate, and salute them.
A couple of weeks ago, she phoned me. “Madzu,” as she fondly calls me, I’ve been having fever and a sore throat for two days, what do I do?” “Get tested for COVID-19,” I reflexively retorted. “But who’ll take care of my son? I can’t afford to fall sick for a single day.”
“This is your chance to get a vacation. Take some time off, get some rest; you really need it. There are four others in the house and they’ll manage at least half of what you do; it’ll be okay. Go, put your feet up!” The test result came back positive and she gleefully retreated into her room for a two-week break after being on duty for three straight years. We talked about the music she would listen to, the movies she’d watch, the yoga and meditation she’d indulge in, how she could light some incensed candles and order gourmet food.
On Day 2 of quarantine, she called again. “Madzu, everyone else in the house, including my son, also has fever, and everyone’s tested positive. Vacation over!” she hung up playfully. She was back to tending to her husband, schooling her daughter, caring for her son, and feeding her parents, all without any remorse and with the same fervour and zest I’ve always seen in her. She lives upto Maya Angelou’s famous words: “You may encounter many defeats, but you must not be defeated.”
The writer is practicing neurosurgeon at Wockhardt Hospitals and Honorary Assistant Professor of Neurosurgery at Grant Medical College and Sir JJ Group of Hospitals.
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