machado: caregiving can be traumatic. but why do we feel so bad saying it out loud?
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it's ok to admit the job of giving care is hard. getty
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as the father of a friend of mine aged into his nineties, slowly shifting from vibrant and cheeky with well-fitting slacks and expensive shoes to pushing a walker in comfy flannel, grumpily yelling at people to speak up, she took some time to get prepared.
before he needed it, she installed a safety bar and rubber no-slip pads in his bathtub, added his name to a list for an occasional personal support worker, and discussed his end-of-life wishes. and when he was diagnosed with cancer — and opted not to get treatment — she embraced his decision with grace, feeling confident that, whatever happened, she was ready.
after all, she lived right across the street from him made it easy to pop in often and if he needed her urgently, she could be at his side in minutes. her kids were teenagers and helped in their grandfather’s care, dropping groceries off, reading the newspaper to him, and even making fruity smoothies when he could no longer chew.
she began to describe her caregiving role as “traumatizing”
everyone in our friend group lauded her efforts to help her dad — though it wasn’t hard to spot the dents that began to appear in her super-caregiver armour as he became more sick. over several months, trouble sleeping and depression took a toll on her, she admitted to not thinking of everything, like the grief, and she began to refer to the whole experience as “trauma,” and “traumatizing” — always apologizing afterwards, guiltily tripping over her words as she reassured everyone how much she loved her dad.
years later, i would experience something similar with my own dad, as he developed dementia. always being on call for my mom, meeting her at the hospital in the wee hours after he had had a seizure and hit his head, bathing him and putting a diaper on (“i hope he doesn’t know what’s happening,” i would say to my mom. “he would really hate this”) was hard enough. add in watching someone you love disappear, knowing there was only one way the story would end, no matter what you did, and yup, defining the whole thing as trauma wouldn’t be wrong. in fact, i would argue that there are no words that aptly describe the enormous, sometimes suffocating, weight of knowing that the well-being — heck, the life — of another person, especially a loved one, literally depends on you.
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and sure, caregiving isn’t always so wracked with emotion and pressure and stress. there are many less dramatic scenarios in which we could find ourselves as a caregiver to another life — figuring out that hard-to-grow cactus or caring for an animal, for example. even with parenting, for run-of-the-mill parents with run-of-the-mill kids, the responsibility of giving care generally hums along most of the time as the years pass, in a how-much-screen-time-is-too-much, they-should-eat-more-veggies, that-guy-better-treat-her-well kind of way.
how are we going to build a system that doesn’t minimize caregivers? getty
it’s the non-garden variety caregiver roles that pose the most challenge, require the most support (in a system that’s ill-equipped) and most easily veer into trauma territory.
my dad died a few years ago, not without leaving my mom and i — especially my mom, who bravely and skilfully took on the brunt of caregiving — tired, sad, and full of what-ifs and maybe-i-should-haves. after pausing to mourn, take a breath, sleep and process the last couple of decades, my mom has been hard at work building her life up again, re-engaging in the social network my dad’s care forced her to abandon for so many years, and figuring out her post-caregiving self.
distress, nausea and anxiety can be symptoms of trauma
no one would have used the term “trauma” to describe the impact of caring for my dad years ago. after all, like most caregivers, we didn’t have much of a choice and we were doing what we had to, the best we could, with the resources we had available. but looking back, from the early days of my dad’s illness when we didn’t want to believe that our beloved person could possibly be devastatingly ill, to the moment i realized he didn’t know who i was, to the tears that rolled down his cheeks when we played his favourite song, these were all things that stole pieces of our hearts.
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they also caused distress, made us feel helpless, and sad. many nights, i couldn’t sleep, and many days, i felt nauseous and anxious — all symptoms of trauma. but no one called it that then. yet how validating it would have been if someone had used that word — not only to acknowledge the hurt that caregiving can bring, but also to make it feel ok to voice the fact that the job of providing care is hard, and can come at a huge personal cost. most importantly, that saying it out loud doesn’t mean a lack of love, or commitment or passion or caring — it just is what it is.
how are we going to build a system that doesn’t minimize caregivers?
well, last week, it happened. in a story for our popular caregiver series, “how i care,” maja begovic interviewed two committed dads desperately caring for their adult son who has autism and severe mental health issues. they describe completely upending their lives to support him and “keep him alive,” a feat they call “constant trauma,” which has included moving, quitting careers and putting their own relationship a very distant second most of the time. besides being an incredibly inspiring piece, the words of these amazing dads are also an important reminder of how critical it is to speak truthfully about the challenges of being a caregiver — not only for ourselves, but also for the many, many others who are doing the job of caring while feeling trapped, alone, and stuck.
maybe then, we’ll finally get closer to a system that no longer minimizes caregivers. instead, caregiving would be recognized as vital and in its entirety — the good, the bad and the ugly, with the proper mental health, social and financial supports in place. and perhaps if we’re lucky, trauma would not be among the words that caregivers used to describe their experiences. imagine.
lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.
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