Living on the Edge: The Fallout of Caregiving
They say life is a gift. Few people are more sharply aware of that than a caregiver.
Waking up every morning , sometimes anxious, sometimes dazed—bracing yourself—for you don’t know what the next hour will bring. Planning ahead—what’s that? you now think. Your life and to a large extent your thoughts are now governed by emergencies, by a constant sense of uncertainty. Not willingly, not because you’re disorganised, but because you now know only too well how much is out of your control. Other people plan vacations. Caregivers try to snatch an hour or two for themselves…and are thankful for those moments of respite.
It’s not just about being available 24/7, it’s the element of doubt, unpredictability; the kaleidoscope of changing emotions. Trying to keep up with all of that is what’s most exhausting. The crushing sense of fatigue underlying all that you do slams into you from time to time like a rocket splintering you from within.
Caregiver burnout—no fancy catchphrase this. It’s very real, and needs to be seen as the major cause of concern that it is. As a caregiver, you are constantly on the move, if not physically, then mentally. Yet, when someone asks, What do you do? You’re often at a loss to reply. You know you’ve done a lot, yet it’s hard to put into words. Too scattered, too diffused. However tough, it doesn’t have the concrete framework of a regular workday. And yet, so much to do—no break in sight.
SELF VALUE WITHOUT SOCIAL VALIDATION
This often results in a very long sabbatical from social media. You certainly don’t want to post reels or tweet about your often eventful yet supremely unexciting day to day existence. So, almost before you know it , you start descending into oblivion. That’s when you ask yourself this question, Does this lack of visibility mean that my work, my writing or indeed my existence is of less value? .
My instant answer is, Of course not! I’m still me, doing something worthwhile. It’s just that others cannot see.This doesn’t detract from the value of what I do. And yet, how are others to know? That’s the conundrum.
To try to solve this is one of the reasons I’ve chosen to write about it. So that along with me, all those caregivers doing great work get a voice too. Because caregiving has a ripple effect across relationships too. Some forge a closer bond, some quietly disintegrate. But communication is key here. It was time to speak up. And I have done so through this series.
UNDERSTANDING THE FALLOUT
But as the saying goes, ‘It’s an ill wind that blows no good.’ Encouragingly, it applies here too. Yes, the fallout is not all negative, not at all. Caregiving makes you more empathetic, more introspective. When you are not posting on social media, you are instead sending those messages and memos to yourself—which is not a bad thing at all, you realise. In fact, it’s something we all need to do, from time to time. A rich inner life is essential for a healthy mind. The more comfortable you are in your own skin, the easier it is to help others.
Caregiving also helps you understand the importance of genuine human connections in your life. Face to face interactions become the highlight of your days, instead of Insta reels. You learn afresh the value of a genuine smile, the little acts of kindness—all the seemingly tiny things which you realise are not so small after all.
They are what make you more human, acquaint you with the person you really are. You also learn to put yourself in another’s place, beginning with the one you are caring for. And you realise almost with a start of surprise that just as we all have different trigger points, ill people can have theirs too. Maybe more than the rest of us, but it’s not necessary that they are completely ‘off track’. Their feelings are just as valid. As real to them as ours are to us. And we need to respect that.
Growing up suddenly in a hard school helps you understand this, and also helps you to learn your own strengths and weaknesses faster. And along with your heightened senses, comes something softer. A greater sense of empathy. You may not notice the style or colour of people’s clothing, but you quickly notice the look of sorrow in their eyes. And you want to reach out and help, in whatever way you can, however small.
In my case, it also made it easier for me to explore my creative side, using writing and poetry as a form of therapy and as a means to connect with others, since I realised that my pain in some form mirrors that of others too.
These are the fallouts people often don’t think about until they find themselves in a similar situation. And obviously, all this doesn’t unfold in a clear, orderly way. These are not ‘normal circumstances’, so there’s no blueprint to follow.
REMINDER: WHAT YOU DO MATTERS
But that’s precisely why we need to talk about these things more. Talking itself is the first step to move beyond the stigma and normalise illness, whether of the mind or body. Neither to sensationalise, nor to live in denial.
For all the caregivers out there, whenever you grow weary or disheartened, remind yourself—what you do actually matters. Because of you, another person is safe. More importantly, he/ she knows they’re safe. With all the responsibilities taken care of, there’s a structure to life, a sense of normalcy that often only a concerned family member can provide. And that’s a very powerful force to sustain yourself with. Your actions—however small—can give another life the motivation to carry on, to take tiny steps which help them keep going… another day, another year.
Building a healthy sense of self-esteem is vital for a caregiver. Otherwise, it’s all too.easy for others to label you a cipher and dismiss you. When there’s no economic value attached to what you do, in these materialistic times, that’s unfortunately how many will see you. Or more often not see you, rather. Your role of caregiver can act like a cloak of invisibility, letting you disappear into yourself because what you do is something that’s hard to explain, or something you prefer not to talk about.
So be careful, I know that it’s all too easy to spiral into oblivion. Only you can take charge of your own life, and remind yourself—what you do, matters. That it’s visible only to you doesn’t change the truth.
SELF CARE
At the same time, whenever possible, do something for yourself. Retain your own individuality, and use the gifts you have as well as what you’ve gained from your recent experiences. Don’t box yourself into a neat little cell labelled ‘caregiver’, and leave it at that.
Instead use the deeper experiences and insights which come with caregiving to put yourself on the path to a more fulfilling life. And I can’t emphasise this enough—sometimes, just the choice to stay is the hardest and bravest thing you can do.
No praise, no awards; just the knowledge that you didn’t ‘fix’ anything, but your presence and actions made things a little easier, a little happier for another. Hold onto that thought when ‘tiptoeing around triggers’ becomes a way of life for you. But not your whole life…never that. You’ll find your way out. You’re strong enough for that. There are no villains in this story. Just life, following its own trajectory.
And about life—no, it’s not what you thought it should be, it’s not how you wanted it to be, but for better or worse it is what it is…So there it is then, both the good and the bad. Embrace both and you will find yourself on the road to a better life with a deeper, more mature perspective. And that’s the point at which healing begins.
About the writer: Sujata Mathur is a caregiver and former journalist.
Addendum: Chipping away at the carapace of indifference – one piece at a time. That’s what I’ve tried to do with this series.. For it’s only when I share my own, can I ask others to come forward with their experiences. With respect, with grace giving caregivers everywhere the realisation that we are all in this together- to build a community- a support system which is the lifeline every caregiver needs.
Sujata mathur
