When Wendy Naumann’s father and three siblings received her mother’s diagnosis — a terminal brain tumor — they were overwhelmed. Just communicating within the family to keep everybody updated on her mother’s condition was exhausting, as they were spread out across the country.
Add to that the job of coordinating the e-mails, texts and calls from her parents’ friends and church members who wanted to help but didn’t have a clue as to what was needed – it all seemed more trouble than it was worth. “It was a roller coaster,” recalled Ms. Naumann, 47, a school psychologist in Columbus, Ohio.
Then she went online and found LotsaHelpingHands. Within an hour, she filled in the blanks and published a simple (and free) Web site all about her mother’s condition -– what she needed, and what everyone in the family and community could sign up to do on a shared calendar.
“Within two weeks we had a community of 50 to 60 people,” all given permission to access the site, Ms. Naumann said. “We can let people know when it’s a good time to visit, and when it’s not, or tell them, ‘Keep in mind that Mom is sad today, so if you come, be low-key and calm,’” she said.
Two new sites, similarly aimed at helping caregivers coordinate care, have been introduced this year. But just because they’ve built them, does that mean caregivers will come? The answer seems to be yes.
Caregivers, it turns out, are in the forefront of those willing to use Internet tools. The prime caregiving candidates, adults ages 50 to 64, bumped up their use of social networking sites by 454 percent from 2008 to 2012, according to data from the Pew Internet Project, which tracks trends online.
Caregivers are more likely than non-caregivers to turn to friends online for health information. “We call it peer-to-peer health care — they triage with their peers and friends online, rather than going to medical sites,” said Susannah Fox, an associate director of Pew Internet Project.
But Facebook and Twitter are not equipped to help caregivers manage the day-to-day details.
Enter Saturing and CareZone, caregiver sites that began operating this year. Saturing has a free basic version, and premium access costs $14.99 a month; CareZone, started by Jonathan Schwartz, the former chief executive of Sun Microsystems, is free now, but users will soon have to pay a fee.
Mr. Schwartz told me that when his brother adopted a boy who turned out to be on the autism spectrum, he discovered what every reader of this blog knows all too well. Health issues — no matter the age of the caregiver or the family member — can spawn a dizzying swirl of appointments, prescriptions and paperwork.
For Susan Gleckler, 64, a retired teacher in San Francisco, that swirl brought family stress. Ms. Gleckler’s 83-year-old stepmother has Parkinson’s disease. “We were having a lot of communication problems, especially during the holidays, when the regular caregiver for my stepmother needed time off,” Ms. Gleckler said.
“My brother didn’t know what was going on, so he didn’t step up to the plate, and my sister is far away in New Orleans,” Ms. Gleckler said. “It all fell on me — the insurance, the finances, the Medicare, the scheduling, the whole mess.”
That has changed. Two months ago, Ms. Gleckler uploaded her stepmother’s medical records to a private site within CareZone. She continues to post updates, so her siblings know what’s going on.
“I am going to be leaving soon for three months, and it’s really comforting to have everything in one place so my brother and sister can take over,” Ms. Gleckler said.
So far, the newer sites seem more focused on the tools that help caregivers track medical information to share with the family, while LotsaHelpingHands is more about tapping into the larger community.
And people do come through. Ms. Naumann recently posted on the site that her mother needed a narrow-wheeled transfer chair because the wheelchair was too wide for the bathroom doorway. “Within 24 hours, two people offered one,” she said.
And there was another unexpected bonus: emotional support for the whole family, not just her mother.
“My mom’s friends have reached out to create relationships with all of us family members,” Ms. Naumann said. “I could see us staying connected even after my mom dies, and the Web site would be one way to do that.”
Have you had an experience setting up and using an online caregiving community? Tell us about it.