Caregiving is not a contest

Caregiving is an emotional endeavor by its very nature. When people discuss their own caregiving experiences, or write about them, raw emotions are often shared.

We want someone else to understand what we are going through, as caregiving can be such a lonely and isolating experience.

And while the experience on caregiving support forums is overwhelmingly positive, I occasionally witness caregivers treating each other in not such a caring way.

We cannot continue to do this.

There is so little public support for caregivers that we must rely on each other for emotional support and advice. Personal attacks serve no purpose. We must not become each other’s enemy.

This is not say that in certain situations, especially if someone’s health or life is at stake, that someone shouldn’t intervene. If someone is providing medical care that is potentially putting their loved one at risk, or if a caregiver seems suicidal, steps should be taken to offer immediate assistance. Offering constructive ways to improve a caregiving situation is exactly what online caregiving communities are all about.

Just as in any other walk of life, there are those caregivers who bully and thrive on insulting others. There are caregivers who are know-it-alls, or who had an amazing caregiving experience and think that others who have experienced less ideal situations are solely to blame.

Even doctors and nurses make mistakes. For those of us who are thrown into an instant caregiving situation, there is often a steep learning curve. While for some, caregiving duties come naturally, for others, it is a struggle. The strength of your love doesn’t necessarily mean you will be a fabulous caregiver.

Caregiving is one of the most personal acts two people can share, and each scenario is unique, depending upon the two people’s relationship with one another, the disease they are dealing with, their financial status, and a whole host of other factors.

It is a human instinct to try to relate ourselves to another person’s situation; when we read someone’s caregiving journey, we try to jump in their shoes. We need to remember that even if we think the shoes are of the same or similar size, they won’t fit quite right. That’s because each of our narratives are unique to our own experiences.

Caregiving isn’t a contest, but some people treat it as such, boasting about how well they handled caregiving duties, or about how they gladly quit their jobs to take care of a loved one, or how they would never put their loved one in a nursing home.

Is there really any need to weigh down caregivers with more guilt than they are likely already feeling?

Perhaps by cutting down others, by being so adamant about “their way” being the only right way, these critical caregivers are trying to work through their own demons. Perhaps there is resentment for those who don’t sacrifice their family, work, and life to be a caregiver. Perhaps these caregivers are simply burnt out after giving so much of themselves, and have little patience for other caregiver’s seemingly petty issues.

But the last thing a caregiver needs is more conflict!

Caregivers of elderly family members are not alone when it comes to personal attacks; I’ve seen it happen in a variety of health-related forums, especially hot-button topics like autism, vaccines and food allergies. (“My kid’s food allergy is worse than yours!”)

By all means, we should give our honest opinion when commenting on something that is important to us. I offer a raw, candid take on my experiences as a caregiver even though I know some will find it controversial or disagree. A lively debate can be truly educational, and the freedom to express opinions is a cornerstone of democracy. But take a moment before hitting submit on a comment, and think about the person that wrote it. Consider how that person will feel if he or she reads that comment.

Maybe this person is facing a barrage of criticism from family members and is seeking a sympathetic ear. Maybe they just wanted to vent their frustrations, and thought they were in a safe space to do so. Maybe their issue is petty and they have some growing up to do when it comes to being a caregiver.

Let’s not be nagging parents. Try to encourage, instead of lecture. Say the words you’ve written down in your comment aloud. Would you say them to the person’s face?

On the flipside, anyone who engages in online communities of any sort needs to develop a thick skin. Having a thick skin can also be useful when it comes to caregiving, and some may say even a necessary trait. Don’t let a negative comment drag you down. Maybe that person is having a bad day and is emotionally lashing out, but don’t feel obligated to take on their negativity.

Be kind, and try to surround yourself with kind people.

Photo credit: Roy Mattappallil/Freeimages

Written by Joy Johnston
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.

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  1. This article was spot on!!! Thank you for writing it! It was what so many of us think, but never say it out loud!
    From, Sherry -past caregiver to my momma- who I lost to Alzheimer’s and present caregiver to my hubby who is pre liver transplant- Locust Grove, Ga.

  2. Great article! Thank you.


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