Caregivers Must Be Honest To Alleviate Caregiver Guilt

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.

caregiver guilt

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.

You might also like:

The Dos and Don’ts of Managing Caregiver Guilt

Caregiver Guilt: 15 Reasons for It and 1 Way to Overcome It

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14 comments on “Caregivers Must Be Honest To Alleviate Caregiver Guilt”

  1. Susan Bonifant Reply

    I really appreciate this. I do consider caregiving an act of love, even if it’s the only option, because it is a show of putting a loved one’s needs before your own. But that’s the good side of love, there is a bad and ugly too, and your words help immensely because they normalize all sides of the emotional burden. So, thank you, because self-acceptance on all levels is essential.

    • admin Reply

      Thanks Susan. All the sides are normal and we need free range to express them all.

  2. Paula Kiger Reply

    So much yes to this! The home health people who come here often say some version of “he’s so much better off than my other patients.” And I get it — they are correct, objectively. I do understand that. BUT …. this is MY 24/7. It is ME wiping bodily waste products off of the walls, catching him when he falls (usually), being called a “dictator” when he doesn’t get his way. I am grateful that he’s not “that bad” but it’s pretty non-empathic to imply that things could be worse! 🙂

    • admin Reply

      As we’ve discussed on Facebook, people mean well and if you haven’t been through it, you just can’t know.

  3. Beth Havey Reply

    Caregiving is hard, no doubt about it. It swamps normal life. It changes relationships. I was able to have
    my mother in a facility that took excellent care of her. It was a must, she had dementia and could not be
    responsible for her actions. It was hard to say no, the day, out of her fading memory, she asked to come live with me. But she
    might burn down the house. In the end, love saved everything, love and dedication. No matter who is doing
    the caring, it’s all you think about.

  4. Kat Magendie Reply

    I’ve never had to long-term caregive anyone – so the short time I did, I had even more respect than I already had. It was exhausting mentally and physically – it was the most difficult thing I ever did – and, at least in my case, all to the end of watching them just slip away and there is nothing more you can do. So – here’s a *hug* in case you ever need one – and I am not a huggy kind of person, especially if I don’t know you, but well, everyone needs one in reserve.

    • admin Reply

      Thank you Kat! That means so much to me and I am sure the other caregivers in the Working Daughter community. And right back atcha a hug to you from another non-hugger.

  5. Claudia Reply

    Great article. I think people need to go into caregiving with a full picture of both good and bad aspects. THERE IS SO MUCH that I worry about when it comes to caring for my mother as she gets older. The more I research the subject the more I find that I need to plan and think about. I think planning and being prepared is the most important thing during this trying time. My one main resource and recommendation to fellow caregivers is the book “9 Realities Of Caring For An Elderly Parent” by Stefania Shaffer. The book is a personalized look at what the author had to go through when moving in with her mother during her final years and all the problems she faced and the best way to remedy them. She covers organizing doctor visits and keeping on top of medication; financial planning; nutrition; physical therapy; and even family dynamics during such a trying time.. This book covers everything in a really moving and inspiring way. I can’t recommend it enough — http://stefaniashaffer.com/
    Good luck to all of you

    • admin Reply

      I agree Claudia: planning makes a BIG difference. Many people do not because they don’t want to think about this phase of life. Thanks for the book recommendation!

  6. Pam Cherry Reply

    Wow! Just what I needed, and hope to be in Kansas City, if the powers that be permit it. I cared for my mom with Alzheimer’s for four years until siblings just became too much to handle. Mom was the easy part. During that four years I completed a Master’s in Public Administration which I thought that once I was done caregiving would help me find work. Nope, at least in my home state where they have no trouble attracting younger workers. Accepted a position 450 miles away from home to be able to return to my profession. Now, trying to get back after seven months here. Maybe in Kansas City I will find something.

  7. Pingback: How to Care for Aging Parents Without Sacrificing Your Career – MONEY – ResumeLord

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