The Load of Care

It’s 12.30 am. I’m awake and alert on the attendant’s bed in the hospital. My mother-in-law has had surgery, minor but painful given her age. She takes a frustrated and painful turn to make herself comfortable and hesitantly, because she feels terrible to interrupt my half nap once again, asks me to call the nurse. I move to her side, with an involuntary sigh. It has a mix of too many things I would usually be uncomfortable about — the twilight zone of sleep, irritability, exhaustion and guilt that I’m feeling all these. But I let that sigh out. It’s much needed. Something tells me she feels the same too. We are both caught in a situation we do not wish to be — in a thousand different ways.

I became a caregiver about six years ago to my father-in-law who had heart surgery. Almost overnight, our world became different. Though none of us — he, his spouse, my husband or I, realised it at that time. The surgery saved his life but left him a frail man in a body that was now deficient in many ways and showing it up. It meant regular hospital visits, doctor numbers on our fingertips, and ER rush at the slightest hint of chest pain.

In a manner of speaking the entire family chipped in. My husband managed most hospital visits. His sister, a doctor overseas, guided us through the medication when it became a maze of coordination between many specialists. My mother-in-law, increasingly frail herself with a lifelong history of depending on her spouse for everything from making phone calls to buying groceries, helped by letting us take the lead when it came to decision-making. Including wrapping up a home she had lived in for over 40 years without complaint, to come and stay with us.

But all that help needed a neat excel sheet style wrap up that brought everything together. And before I knew or wanted it, I was the chosen one. The primary caregiver to two vulnerable, dependent elders whose once independent world too had taken a 360-degree turn.

Did I want to be the chosen one? No one asked, including me. Would I have said no? Probably not. I came from that well established Indian Home School of Dutiful Conditioning. Where you didn’t question if you were the right one for the job. You assumed you were and turned up for it.

At first, I didn’t quite fathom the extent of looking after two ailing elders in a multi-generational home. They were loving, kind and nice people. How tough could it be! Yes, I chafed at the life adjustments that happened, from food to clothing choices. We couldn’t cook meat or fish at home because of their strict food habits. I could live with that but what I missed most was baking with eggs. I started calling my closest circle of friends to exchange notes and mutual exasperation over ‘old people’ habits set in stone that all our parents and in-laws had. But then wasn’t that something we all did as we reached a certain age and life hit us? I told myself food was a small price to pay. We ordered in and ate out enough, didn’t we? It was a tightrope I didn’t know I was hanging on to.

I’m sometimes an impatient woman. But with caregiving, I discovered compassion and even patience by the bucketload. I discovered shutting out the world with headphones when I needed to withdraw from the world of instructions and focus on work. I’d like to think I became kinder. But I also found a side that I didn’t know existed.

I was rude. Irritable and exhausted. Very often I wished I didn’t have to do what I was doing, cook what I was cooking because dietary demands called for them. And very often I let it show.

Who exactly is a caregiver? Is it a term you assign to yourself only when you feed, bathe and take care of someone with a debilitating, progressive disease?

Does it apply when you have the responsibility of someone’s care always at the back of your mind, impacting your decisions, its weight shifting the way you live your life and decide your plans? Does cooking food to suit older, fussier palates; making neat packets of white-yellow-pink pills according to mealtimes, supervising help, working the phones to organise and manage groceries, medicines, attendants in eight-hour shifts, count? Does the missed work opportunities you don’t have the time to take on make the cut?

One night, I speak to a friend. “I hate myself for feeling the way I feel. But this is who I am now.” Don’t judge yourself, she says in a sleepy drawl. There was an uncomplicated, the world is ‘black and white’ time when I would have. I revel in shades of grey now. And escape self-judgment.

Unpaid labour, which includes housework and care work is still women’s. And caregiving was a sum of all those parts. It wasn’t only changing the dressing or supervising medication. There are people you could hire for that. It was also the several minutes spent on the phone reaching out to a doctor to discuss the side effects of a medication, maintaining checkup schedules and blood sugar readings. Things you couldn’t always hire for.

It was also stocking the fridge with enough tomatoes because the elders at home couldn’t do without those and making sure the larder always had Marie Biscuits and porridge stocked. It was the many minute details that don’t carry much time and effort but add up to avoluminous to-do list. One that never gets over because it’s always getting added to.

Globally the burden of caregiving mostly falls on women. An ILO study on the global care crisis from 2018 told me that women from Asia and the Pacific spent 4.1 times more on unpaid care work than men did. It said that it would take 210 years to close the gender gap in unpaid care work. This was a pre-pandemic study. The pandemic would’ve worsened the situation. But the burden of caregiving is also more than those numbers. It is in the guilt when you admit to the exhaustion that comes with it given that the back of your mind is always a stacked up checklist.

I don’t resent the caregiving I do or the people I do it for. There has never been any reason to. What I resent is how like many women around the world, it has all funnelled down to me, by custom and conditioning — from the expectations to the daily management.

There are support groups for caregivers dealing with progressive disorders like Parkinson’s and Dementia. But where are the support groups for people like me who are caregivers too, though it’s not as visible or stressful enough?

So I’ve become my own support group. Caregiving has been my biggest life lesson. I’ve told myself it’s ok to not feel ok about it all the time. It’s alright to stop being a source of constant compassion. I’ve started drawing boundaries. Making my sometimes not so soothing voice heard. These so-called bold, demarked parts are still quite fluid because spells of dizziness, high blood pressure, chest pains, stomach ailments or the emotional support that a vulnerable older adult sometimes needs don’t go by a schedule. More than anything they’re fluid because years of an ingrained sense of duty in our very Indian upbringing ensure we are bad at saying no. Good people don’t say no or show their exasperation when things get hard is what we learn, when what we really need to learn is to understand our limits and address them honestly.

Caregiving has unveiled that part for me. It has, very very gradually, taught me to be honest about giving that ‘good person’ a break when the load is hard to bear. And tell me that it’s ok to manage only till the point of my capacity. I still slip and fall through the cracks that are hard to claw out of but more often than not, I’m honest about the chinks in my armour and unafraid to show them- to myself and to an extent (if I’ve managed to outsmart the voices in my head enough), even to the family around me.