Caregiving guilt is real and it’s fueled by caregiver shaming.
After Ann Brenoff published, “No, Caregiving Is NOT Rewarding. It Simply Sucks,” on the Huffington Post, in which she said of some caregiving-related tasks, “But while I can handle all of that, what I can’t handle is some brochure telling me that I am embarking on a rewarding journey,” she apparently got a strong reaction. She quickly followed up with, “When Caregivers Are Honest, It Makes People VERY Uncomfortable.” Both posts are worthwhile reads.
In her follow on post, she named a common reaction that caregivers experience when they talk about what they do – caregiver shaming. Wrote Brenoff, “…when caregivers talk frankly about their feelings, it makes you uncomfortable and then stupid things come out of your mouth. Want an example? When I say caregiving sucks, you tell me “no, you don’t really mean that.” But yes, yes I really do. I’ve come to see this practice as caregiver-shaming and would like it if you’d please stop.”
Amen! Please stop the shaming.
But before we delve into this practice of caregiver shaming, let’s talk about whether or not caregiving actually sucks. It does.
That said, I also know it can be incredibly rewarding. Researchers out of Johns Hopkins University and Boston University have identified something called the caregiver’s gain. This gain comes in the form of greater physical strength, better cognitive functioning, and feelings of personal satisfaction. The researchers who have studied this gain believe it stems from the fact that caregivers benefit from having a purpose and from developing deep, personal connections through caregiving. Still, they readily acknowledge that two things can be true about caregiving at the same time: it can be a burden, but, it also has its benefits. And my own personal experience is in line with the research. Some of my caregiving experiences have been horrific (stress, despair, rage), but I am incredibly grateful for those experiences because they identified the depth of my strength and compassion. Caregiving nearly broke me at times, but ultimately it has changed me, for the better.
In order to access the caregiver gain, I believe, we must first accept our roles and realities as caregivers. Research backs me up on this too suggesting people who take an active, problem-solving approach to caregiving are less likely to feel stressed and are more likely to realize the positive benefits of caregiving, than those who worry or feel helpless. And that’s where caregiver shaming comes in: shamers interfere with a caregiver’s ability to fully accept their role. Because acceptance requires us to face the good and the bad.
So when a caregiver says, “I don’t think I can take much more of this,” or “Why me,” or simply, “This sucks,” or even, “Why won’t they just die already,” they are acknowledging and voicing very real feelings. These are not their only feelings – perhaps not even their dominant feelings – but they are valid feelings. So when someone else responds with, “But it’s a gift to care for someone,” or “ You don’t really mean that,” they cause a caregiver to feel shame.
Now I don’t believe most people are intentional shamers. When a friend’s mother told me during a caregiving crisis with my own mother, “There is a place in heaven for you,” I don’t think she meant to shame me. But my first thought was, “Sure, after a life in hell.” And when a visiting nurse told me, “Every day is a gift,” I don’t think she meant to shame me, but I asked her where the gift receipt was because I wanted to make a return.
I think it’s more likely their words are innocent and uttered because they don’t know what else to say. Nevertheless, they can invoke shame in a caregiver who hears them as proof that their very real feelings are wrong, or at least didn’t fit into societal norms.
Caregivers, you see, especially female caregivers, are bombarded with messages and imagery of “the perfect caregiver” (Click here to see some of the ridiculous ways caregiving is portrayed) like in the brochure Brenoff wrote about in her post. That’s why we need the people in our lives to let us accept all of our feelings about caregiving – especially the really ugly ones. It may seem counterintuitive, but when caregivers have the space and permission to be honest, it actually helps them access the caregiver’s gain.
There’s a time and a place to tell someone to snap out of it, to stop wallowing, to look on the bright side and many caregivers do need to hear that at certain points in their caregiving journeys. But when a caregiver is sharing her deepest, darkest truths about caregiving isn’t that time.
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