Using social media in times of need

Frank Vardeman was about to undergo knee surgery in January when, as he recalled, his legs suddenly “turned to wet noodles” that could no longer support him. Tests revealed that the culprit was a large growth entangled in his spinal cord, compressing the nerves that control lower parts of his body.

It took two neurosurgeries at a Chicago hospital to remove the mass and 44 days of rehab before Vardeman, 62, could return to his home in Chesterton, Indiana.

Though the growth on his spine turned out not to be cancerous, he is now paralysed from the thighs down - a difficult adjustment for anyone, but especially for a former high school football champion who danced at his daughter’s wedding in December and still took long walks with his 90-pound dog on the shores of Lake Michigan.

Watching his one-year-old granddaughter pull herself up to a standing position, he observed that neither he nor she could get their feet where they wanted them to go.

Starting about a week after Vardeman’s first neurosurgery, his wife, Heidi, a pastor at a local church, began posting updates about his medical condition on the social networking site CaringBridge. The response to these posts has helped her avoid the need to keep repeating the same story and “has been an affirmation of how many circles of friends we have and how many people really care,” she said.

The Vardemans are among the many baby boomers who are turning to social networks for caregiving support. Previously, some had only limited experience with social media. Now, instead of spending time answering emails and phone calls from well-wishers, the more tech literate among them can boot up their computers or use mobile devices to answer all their supporters at once.

The options, at no charge, range from anonymous venting on Caring.com, a another support site for caregivers, to creating a private online community on bloglike platforms.
Of the 100,000 “communities” established on one such site, Lotsa Helping Hands, about two-thirds were formed by women, said Hal Chapel, an entrepreneur in Maynard, Massachusetts, who co-founded the company in 2005 with Barry Katz, a friend, after Katz’s wife died of ovarian cancer.

As with all social media, the question arises, “How much to reveal, and to whom?” as Patrick McGinnis, 53, quickly discovered. After his son, James, 18, suffered severe head injuries playing football on his high school team in Overland Park, Kansas, McGinnis posted an update on his own Facebook page, accompanied by photos taken the previous summer. One of them later turned up in a local newspaper article on his son’s injury - he suspects because a Facebook friend shared it with a broader audience.

No harm done, but “it was a warning that I have to be very careful about what I post,” McGinnis said.

He promptly signed up for an invitation-only community on Lotsa Helping Hands and asked participants not to repost the material; so far they have complied.

Such social sites do not necessarily make great businesses. Laurie Orlov, the founder of Aging in Place Technology Watch, which monitors industry trends, said they “are a cool idea, but they are fragile as companies because they can be easily wiped out” by larger players like Facebook. Lotsa Helping Hands, which licenses its software to nonprofits that support awareness and resource development for particular diseases, has always operated at a loss, Chapel said.

CaringBridge, a nonprofit, covers its $7 million in annual costs with donations from grateful caregivers and patients, said Sona Mehring, who founded the company in 1997. Caring.com, which is 8 years old, became a financial success by taking advertising; Andy Cohen, its co-founder, sold the site last year to Bankrate for $54 million.

Nicole Maholtz, 48, considered using CaringBridge after her mother, Jane Schuck, was found to have virulent soft tissue cancer in 2013, but decided it was too much extra work at an already stressful time. Instead, Facebook became her primary communication tool.

For nearly two years, Maholtz, who lives in Irmo, South Carolina, posted Facebook updates from her cellphone, iPad or laptop as she traveled with her mother to multiple surgeries, chemotherapy and radiation treatments.

By tagging her mother and brother, each of whom had their own Facebook pages, and relying on her 19 cousins to share the information through theirs, Maholtz, who rarely posted on Facebook before her mother’s illness, figures she was able to reach several thousand people. Many commented on her posts.

“It was very effective, with very little effort,” she said. “I found it extremely comforting to know that so many people out there were pulling and praying for my family.”

When Schuck died, on Dec. 26, her daughter shared that news the same way, posting an obituary, details about a memorial service, and a link to a guest book on Legacy.com, a site for posting condolences.

Based on the outpouring of sympathy online, Maholtz assumed everyone knew what had happened. She was surprised to learn, several weeks later, that a couple of her mother’s business colleagues, who were not on Facebook, were upset that they had not been told.