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Social Media Dangers for the Modern Caregiver

Online networks can offer support but can be a source of added stress, too

By Sherri Snelling | November 20, 2013
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Sherri Snelling, executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.

Social media is a quick and easy way to share news and thoughts with your inner circle. But for some people, the technology fulfills an insatiable need to be the online star of their own reality show, sharing every emotion at every moment, with the rest of their social circle the unwitting supporting cast.

The disturbing lack of manners online can have a major emotional impact on the nation's 65 million caregivers. I learned this firsthand recently when I lost my father, who had been in hospice care at home with stage 4 prostate cancer. Just minutes after he took his last breath, a relative who had come to support the family ambushed us by posting word of my dad's demise on Facebook.
 
(MORE: The Tipping Points That Turn Us Into Caregivers)

At the same time, I happened to receive a phone call from a close friend with whom I shared my sad news. But I did not have the foresight to tell her to keep it private until I could compose myself to communicate with others. So she immediately posted the news online without my permission.
 
These two shots of friendly fire quickly led to social media assault. While still processing my loss, my smartphone started chiming with text messages, emails and Facebook alerts. All were well-meaning and sympathetic, but I could only feel anger at their intrusion, because at that moment, before I had even started grieving, my private pain had become public.

I'm not alone. When a former colleague lost her husband, for example, she intended only to tell a handful of people at work right away. But then she discovered that her assistant had already tweeted the news to the world. One close co-worker was offended, thinking my friend had not taken the time to tell her the news personally, adding insult to her injury.
 
Another friend felt betrayed when someone in her inner circle publicly posted good wishes for her breast reconstruction surgery after a double mastectomy. But while Angelina Jolie may have been comfortable telling the world about her own procedure, my friend had no intention of doing so. She learned too late that today you don't have to be a movie star to have your most private issues become front-page news.
 
(MORE: Why Caregivers Need to Plan for the Worst)
 
It's become clear to me that we ought to establish some ground rules for our networks. As I canvassed members and leaders of some major online caregiving support groups, as well as experts on social media etiquette, they agreed on three fundamental guidelines for caregivers and their friends:

1. Remember you're not just speaking for yourself. When it comes to online social networking, each of us lands somewhere between constant oversharing (think the Kardashians) and being a complete sphinx (think J.D. Salinger). The key for caregivers is to consider where the person they care for falls on this continuum, and to respect their comfort level as well.

"Remember that your own comfort level with sharing your personal story through digital media and your loved one's may be different," says George Washington University law professor Naomi Cahn. "Tell your story, but be careful about how much you tell about your loved one."

2. Before you share, consider the reason. Gossip is a natural human instinct. Some studies show that it may even boost our endorphins, warding off stress and increasing our immunity, according to the British-based Social Issues Research Centre. But, of course, not all gossip is beneficial, especially when closely held details are revealed or someone shares secrets just to feel superior.
 
We know that conditions like Alzheimer's disease, autism, mental illness and even lung cancer often come with serious social stigmas that can lead to isolation for caregivers who think they are protecting themselves or their loved ones. Before you post revealing information on a social network about a friend, relative or fellow caregiver's situation, ask yourself two questions, advises psychologist Nigel Nicholson of the London School of Business, a leading researcher on gossip. First, does passing on this news make you feel that you're better than the person you're talking about? And, second, are you using the information to better your own social standing in some way?

If the answer to either question is yes, you're not displaying the empathy of a supportive, helpful friend or family member.
 
(MORE: How One Alzheimer's Caregiver Copes)

"Some caregivers, such as those caring for someone with Alzheimer's, suffer social stigma and aren't comfortable feeling vulnerable," says Lori Le Bay, a dementia care advocate and founder of Alzheimer's Speaks. "Being a good friend means not exploiting that vulnerability to gain social media points for yourself."

3. Solve isolation, don't create it. There is much debate over whether social media brings us closer together or just further isolates us. Caregivers know that it can do both.

The ability to reach out virtually is vital to a caregiver's need for support and sympathy and to find resources for managing daily challenges. According to a recent report from the Pew Research Center's Internet & American Life Project, 52 percent of caregivers with internet access say that online resources have been helpful in coping with stress. Reading about other caregivers' experiences in particular helps assure people they are not alone.

Caregiver Kelly Stahlman, one of many who have created a private community on Lotsa Helping Hands to share updates with friends and family of her choosing, finds that even virtual expressions of support can impact her day. "I would have really felt 'out of sight, out of mind' but for posts, messages and even just plain 'Likes' that helped me know folks cared," she says.
 
But for caregivers who feel overwhelmed by their responsibilities, seeing posts online about the good times friends and family are experiencing can remind them of what that they are missing and add to their frustration and even depression. "When I was feeling isolated I got tired of seeing friends' pictures of happy times with their kids on vacation," caregiver Kyle Arnn told me. Such feelings can take a real-world toll: A National Alliance for Caregiving study found that 91 percent of caregivers whose health declined because of their caregiving role also reported depression.
 
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"No caregiver should ever feel alone, but the key to social networks and online caregiving communities is to invite people who lift you up," says Brooks Kenny, chief marketing officer for Lotsa Helping Hands, which hosts 70,000 private caregiver communities. "These online networks are sacred gathering places where you can receive inspiration and support. Just be sure to invite people who bring you calm, peace and support."
 
Words can be powerful, especially online, but actions and empathy will always speak louder. Those who really want to support caregivers won't do it just by posting on social media but by lending a hand and always keeping in mind this old adage: "Great minds discuss ideas; average minds discuss events; small minds discuss people."
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