Social Media for Caregivers: How to Share Your Personal Stories Compassionately

Fun Memory Exercises for Older AdultsA nurse during the week and a family caregiver on the weekends, Jennifer was struggling with the work overload. She felt relief by blowing off some steam on Facebook, and it became a daily habit, sometimes even while she was spending time caring for her aging aunt. But when her aunt asked how the neighbor knew to call and offer help with the broken dishwasher, Jennifer began to realize just how small the world becomes under the umbrella of social media. Luckily, she hadn’t yet shared anything too personal, and it helped to remind her of the tricky balance caregivers need to find between responsible self-care and compassionate care of loved ones.

Social media can help us feel seen, supported, and connected. But these welcoming benefits can also cause us to forget the potential risks of exposing our lives for all to see—and potentially the lives of people around us. As caregivers, we are entrusted with another’s vulnerabilities, and that responsibility is no less important than preserving life and dignity. So, in this age, where everyone could be a reporter and a publisher with a click, it’s good to occasionally review social media etiquette, especially for caregivers who have disabled or aging loved ones in their care.

Weighing the Benefits and Risks of Sharing Caregivers’ Stories on Social Media

Forums like Facebook and Twitter offer great opportunities to unwind and decompress—especially when your days are psychologically and emotionally taxing. These virtual communities can also offer ways for you to untangle problems that feel all knotted up inside you and to gather feedback and ideas from others—people whose perspective and support you might not have access to if not for these public forums. But it’s important also to remember the tradeoffs when sharing some of the more intimate and vulnerable elements of your life with the world wide web, especially when those elements are also wrapped up in another’s life as a care partner.

While it may not feel entirely personal when you’re revealing your frustration about how an aging adult in your care is resisting helpful resources or your joy about successfully creating ways for them to navigate to the bathroom independently, are you remembering that it’s extremely personal for the other player in that story? Even if you’re trying to be covert and impersonal, it’s easy to slip and publish a name or other revealing details. There may be people in your virtual circle of friends who know the identity of the person in your care, in one way or another, and you may be revealing more to them than you intend when relaying experiences of a heated or sensitive or embarrassing nature.

A Caregiver’s Dos and Dont’s of Compassionate Social Media Use

By bringing more awareness to your online interactions, you can get the personal benefit out of social media use without compromising those you care for. One positive way to navigate your Internet presence is to choose two different avenues for sharing parts of your life: one for your experiences with caregiving, in an environment that is safe for you to share honestly, and one for your independent life experiences.

DoDon’t
  • Don’t share your caregiving experiences just to blow off steam or to draw attention to yourself at the expense of your loved one’s privacy and dignity. Your responsibility to their well-being still holds strong even when you’re “off the clock.”
  • Don’t use your real name in forums whenever possible. Use a pseudonym, so you can share candidly while still maintaining anonymity and privacy for you and your aging loved one.
  • Don’t dwell and compare your experiences of daily challenges with your online friends’ photos and stories of lighter times, as it can add to your feelings of isolation and overwhelm.

How to Navigate Social Media with a Caregiver’s Sensitivity and Wisdom

No matter how careful you are with your social media conduct, you can’t control the way that other people operate and disseminate information. Too often, people make information public that is not really theirs to share. They might post about a tragic event—a hospitalization or a death—they heard about through more private communication. Without permission from the individuals involved, by making that information public, they are putting the family’s pain on display and possibly escalating that pain and overwhelm.

As caregivers, we can set an example of considerate, compassionate, honorable, and responsible social media etiquette. Just as we act as advocates for our aging loved ones in the medical landscape and elsewhere, we can advocate for loving and respectful actions in online communities where it often seems that anything goes. It’s surprising that there aren’t more active conversations about how to use social media responsibly, considering how quickly it’s growing as a daily resource for so many. Don’t be shy about using online platforms to speak up about the nuances and dangers of social media for the modern caregiver and the older adults they care for.

It’s not necessary to stop using social media. In fact, it can be an incredibly supportive resource for aging adults and caregivers alike. But it is critical that we blaze the trail for compassionate communication in this area, just like in any other. As a quickly growing community, we caregivers are helping to shape the future of caregiving itself—not to mention the lives of so many loved ones each and every day. So, let’s embrace that responsibility and help to steer social media use in a more conscious direction, so we can lean on the immeasurable benefits without sacrificing the open and loving qualities of our in-person relationships.

At Institute on Aging, we are committed to amplifying these conversations that mean so much to the quality of care for aging adults, as well as the integral support for their caregivers. If you have any questions about online resources—or any other caregiving topics—reach out to us. We look forward to connecting with you and hearing your story.

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Institute on Aging

Committed to offering thoughtful discussions and resources to older adults, their families, and their caregivers.

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