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In honor of #WorldMentalHealthDay, we recognize CaringBridge users like Lovette Russell, pictured here, who has always tried to make mental health a priority, even in the midst of physical health challenges. What has worked for Lovette is to "look good, even when you don't feel good." What is one thing that has helped you maintain mental health during a challenging time?
[Lovette's story is part of our How We Heal Series.]
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Our healthcare partners understand the value that CaringBridge brings to their patients and family caregivers; mobilizing social support to help improve health outcomes benefits all involved in a health journey.
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Sours: https://www.facebook.com/CaringBridge

Sites like CarePages and CaringBridge have been developed to meet important needs for hospitalized patients and their families and friends.

But Facebook, as a powerful general-purpose social networking site, may prove to be an even more useful alternative to these dedicated patient communication sites.

I will start by describing the very real needs CarePages and similar sites meet, and then discuss how Facebook can meet those needs.

The Needs

When people go to the hospital, they typically leave many family members and friends who are starved for information.

A generation ago, one or two of those interested persons typically would receive a collect or credit-card call from a pay phone, and would be responsible to call the rest of the family and friends. Or an exhausted spouse would return to the hotel and spend all night calling with updates.

A decade ago, with the ubiquity of cell phones, the updates became easier and more frequent. The patient and spouse typically had family and friend phone numbers programmed into their cell phones, and could call right away. And of course their friends could and did call, which meant that those hospitalized would spend much of the day relaying the same information repeatedly.

This led to the development of sites like CarePages.com, where users could set up free Web sites and post news and condition updates. That way they could let everyone know what&#;s happening without having to repeat themselves and could post pictures. And their interested friends and family members could send greetings and express their solidarity and care.

These are really useful services, and Mayo Clinic provides CarePages access for its patients. But many patients, especially those already using Facebook, may want to consider how a Facebook group could meet those needs.

The Facebook Alternative

A Facebook group has essentially the same functionality as a CarePages or CaringBridge site, and so when my daughter, Rachel, went to the hospital Thursday to have labor induced for our first grandchild (and when the process started to stretch over days instead of hours), I decided to use Facebook to share updates.

My wife Lisa and I had spent much of day two (Friday) with Rachel and her husband Kyle at the hospital, and I could see that having an online status update would be helpful. I also had taken some Flip video during Hour 36 of the adventure that I thought would be good to share, particularly with Rachel&#;s four siblings miles away, and with Kyle&#;s brothers in Indiana and on the other side of the world.

I started by just posting the video to my personal profile, but limiting access to a family and a couple of close friends. Then I remembered the Groups function, and thought that would be a better and more versatile choice.

I created a Closed group, Awaiting the Birth of Evelyn Grace, so only those I invited or approved could have access. I checked with Rachel about this, and she said we should just start by inviting immediate family until we talked about it more. I could have chosen to make the group a Secret one for even more privacy.

Creating the group took about two minutes. And because everyone in the Aase and Borg clans has a Facebook account, inviting them to join was easy.

Just for fun, I also created a CarePages site for Rachel, and made it private as well. That was a good experience, too; the site is designed well from a usability standpoint. And there is a way to invite friends by importing e-mail addresses from a variety of sources, so you don&#;t have to remember all of their e-mails.

Similarities and Differences

Both a Facebook group and a CarePage have privacy settings that enable you to limit access. Both let you post photos with captions. Both have a place for visitors to share best wishes and prayers. Both enable you to send condition updates to your concerned friends. Both services are supported by advertising.

CarePages, because it is specifically designed for patient use, has some pre-built forms and fields, such as Visiting and Contact Information, that give it a definite health care feel. Instead of a Wall as in Facebook, it has a Guestbook. CarePages also receives financial support from hospital sponsorships, and solicits donations from site visitors (as does CaringBridge). Finally, CarePages has some associated disease-based discussion forums and support groups you might find helpful.

Facebook allows you (and group members, if you like) to upload videos in addition to photos. This makes it possible, as I did in Rachel&#;s case, to share videos only with selected individuals. YouTube lets you limit access to videos by making them &#;Private&#; but the users need to have YouTube accounts and you only can designate up to 25 friends to have access. On Facebook, group members see who the other members of the group are and can interact directly with each other. You also can have multiple administrators for a group, so I could create the group but then add Rachel and Kyle as administrators later, when they&#;re less preoccupied. Then they could take over the group and move me to ordinary member status, so it would become &#;their&#; group.

Bottom Line

If you&#;re already in Facebook, and if most of your family and friends are there, the choice seems pretty obvious to me. Creating the group takes just a couple of minutes, and the friends you invited can join in seconds, without having to create an account on yet another Web site. A Facebook group lets you create and add members to a site much more quickly than one of the dedicated patient update sites.

Even if you have several friends or family members not in Facebook, it could still be a good choice because Facebook has the same facility for inviting people through your e-mail address book as CarePages does.

The ability to add video updates is a major advantage of Facebook, too.

If you and most of your loved ones haven&#;t gotten into social networking yet, a CarePages site may be preferable. It&#;s more tailored for the health care environment and the specific need at hand. Starting from scratch and getting people to join Facebook and then your group may complicate things a bit.

But with Facebook having become both the biggest and fastest-growing social networking site in the world, the Facebook option may work really well for many patients

Evelyn&#;s Epilogue:

At this morning, 68 hours after the start of induction, Rachel gave birth to Evelyn. With the happy ending, Rachel and Kyle don&#;t mind the whole world knowing, so here&#;s one of the videos from the Facebook group, that I also posted to YouTube:

[youtube=http://www.youtube.com/watch?v=gcPviulWm-c]

Within a few minutes this evening I also was able to invite a broader group of family friends as well as many co-workers. So you should be seeing Evelyn&#;s group growing well beyond the 8 members it had yesterday

Assignment Options

Choose one of the following:

  1. Get sick or have some other kind of medical condition that requires hospitalization. Or have a family member or friend become hospitalized. Then form a group in Facebook to communicate with family and friends.
  2. As an alternative, you can request to join the Awaiting the Birth of Evelyn Grace group and see what we&#;ve done there.

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Author: Lee Aase

Husband of one, father of six, grandfather of Chancellor Emeritus, SMUG. By day I'm the Director of the Mayo Clinic Social Media Network. Whatever I say here is my personal opinion, and doesn't reflect the positions of my employer. View all posts by Lee Aase

Sours: http://social-media-university-global.org//08/facebookfacebook-for-medical-support-groups/
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Communicate with Family and Friends through a Free Personalized Patient Website

The University of Chicago Medicine has teamed up with CaringBridge.org to offer patients a free and simple way to communicate with family and friends during hospitalization, treatment and recovery. Patients can create a secure, personalized CaringBridge website that includes the following:

  • A patient care journal to update family and friends
  • A guestbook where visitors can post messages
  • A photo gallery with slide show functionality
  • Mobile access: View and update a CaringBridge site using an Android phone, iPhone or another Web-enabled smartphone. Friends and family members can also sign up to receive text message journal notifications to their phone.
  • Facebook Connect: Log in with your Facebook account, add a link to your Facebook page from your CaringBridge site or post journal notifications to Facebook. You decide if you want to link the two accounts.
  • Free online support

Learn More About CaringBridge

We've teamed up with CaringBridge.org to offer patients a free and simple way to create a personalized website to communicate with family and friends during your hospitalization, treatment and recovery.

Disclaimer: At no time does the University of Chicago Medicine provide any patient information for the purposes of this service.

Sours: https://www.uchicagomedicine.org/patients-visitors/visitor-information/communicating-with-patients/caring-bridge
CARA AGAR STORY FACEBOOK BANYAK YANG MELIHAT

CaringBridge

i am, thankfully, not a patient at this point in time. however, i do have a friend who is and is using the site. WHO KNEW FROM THIS SITE? she sent me the link and it. bounced. my. socks. off!! at first i thought "how cool is THIS?" look at what she (my friend) made; then"wait a secthis isn't a personal deallook at what is available to her at the hospital. how come i never saw this before?"; then"ummhang on, here, this isn't a hospital site, it's something different."; then"HOLY WOW!!" after i read my friend's story and several journal entries, i found the parts where i could write to her and then where i could send a donation to help this site continue. i wrote and wrote and wrote to her and then"uh oh. i haven't been working in a while. money is kinda tight." and then "I'LL KISS FEET ON BROADWAY IF I HAVE TO, BUT I HAVE TO GIVE SOMETHING TO HELP THIS CONTINUE!!" and i did. not a lot. nothing huge. just a little. just the kind of amount that says that i can't have two bags of snicker's minis and three magazines this week; or the kind of amount that says i'll have to get my darned hair cut after 8 weeks instead of my usual 6 weeks. you see, 28 years ago i watched my father die with my 6 month old only child in my arms. thankfully, it went quickly, and for the most part he wasn't aware of much. however, I was. i was hyper-aware of EVERYTHING. every breath he took; every squelch of a nurse's shoe in the hallway; every ring of the telephone which made me jump up like a cat kicked in the caboose because my nerves were so raw; all of the constant repetitions of the same litany i had to recite to every person that paraded through his room or called; over and over and over and overhad something like CaringBridge been available at that time (we didn't even have computers back thenwow, i'm a fossil) i think it would have taken me to a different place. i believe that my hair would have stayed hair instead of the live nerve endings it had become. i would have had an outlet; i would have been able to reach out; i could have let everyone know when it was a good time or a bad time to come or, when they needed to ALL come right away. i could have read words of encouragement to my father as he lay in his bed in the hospital instead of snippets from books or newspapers that had nothing at all to say to him. over the past 28 years since my father has been gone, we've gotten computers and cell phones and microwaves (WHOA) and so many friends of mine and family members, as well, have had me sitting at their bedsides asking them questions that, i'm sure, had been answered ten thousand times previously and so many of these same people hadn't heard from me at all because i didn't want to call or visit because i was afraid to disturb them and their family members during such a stressful time. lots of times i was too late to call or visit. lots of times i never got to say "i love you, you know that, right?" i would have had that opportunity if we would have known about CaringBridge. lots of people roll through life blessedly unaware of these kinds of situations; unaware of how blessed they are. then, there are the people like me; people that have watched so many of their friends and co-workers and family members heroically wrestle with impossible diagnoses only to succumb in the end while we watch them, sit with them, see ourselves reflected back to us in their eyes; helpless and lost and unprepared even though we've been prepared; people like me who could have made a great and happy present of CaringBridge to our loved ones; people like me who could have written daily; who could have been better informed by reading daily posts and who could have made sure the words "i love you. you know that, right?" would have been read. before it was too late. THIS SITE IS ONE OF THE SINGULAR MOST IMPORTANT PATIENT/FAMILY RELATED TOOLS I HAVE RUN ACROSS SINCE RONALD MCDONALD HOUSE. it is a blessing and one that shouldn't be in danger of being lost. now, i get onto facebook daily and urge, encourage, plead, cajole, bully, sweet talk and say anything and everything i can think of to get people off of their dead behinds and PAY ATTENTION!! if they can pay REAL money to play VIRTUAL games on a venue such as facebook, then they have the spare greenbacks to toss a few around to CaringBridge, in my opinion. and something as easy as MICROvolunteering? c'mon!! if you're sitting there staring at a pc screen with your eyes glazed over and drool running down the corners of your mouth while you are plowing your FARMVILLE field, you can just as easily make a post on your page for people to just "take a look at this CaringBridge thing, yo!" how simple is THAT? very. how many people can that reach? infinite numbers. how important is it? one of the most important things in the world. thank you. God bless you all for your huge hearts and your wonderful imaginations which are making dire situations more palatable and pleasant and less stressful.

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Sours: https://greatnonprofits.org/org/caringbridge

Caringbridge facebook

On the Topic, ‘I Would Never Write About My Health on Facebook’

CaringBridge author Hanna Cooper gets a kiss from her husband, Tom Moberg.

Social media keeps Hanna Cooper connected—on her terms. As a leadership and executive coach based in St. Paul, MN, Hanna uses LinkedIn and Twitter professionally. As a wife, mom, friend and neighbor, Facebook serves a social purpose. But it is through Hanna’s unexpected diagnosis of stage 3 pancreatic cancer that I came to know her.

I am CEO of CaringBridge, the global nonprofit social network for families immersed in health journeys. Hanna has used CaringBridge since 2016 to share medical updates, organize offers of help, and reflect on what life looks like with cancer in the mix. During a recent visit to our offices, Hanna talked with our team about her approach to social media regarding her health.

Strength Comes From Feeling Connected

Like so many patients and caregivers plunged into illness or injury, or facing chronic conditions, Hanna said strength comes from feeling connected, and belonging. Everyone who loves her little family wants to know how to help and to best provide support. Hanna said she often uses social media to share with her networks what is helpful, on any given day, even including what types of good wishes and prayer are welcome.

But just as she wouldn’t post pictures of her kids on LinkedIn, or provide client coaching through Twitter, what Hanna shares with family and friends on CaringBridge isn’t found elsewhere on the internet. Especially on Facebook. For the record, Hanna said she felt that way long before the Cambridge Analytica scandal—Facebook was never the place to share her health story.

A Place to be Held Close and Protected

This is something we have heard for years, and now we hear it much more often: “I would never write about my health on Facebook.” After diagnosis, illness, injury … any health crisis, families need a safe and convenient place to communicate. At the worst times in their lives, patients and their loved ones should be held close and protected. Not data-mined.

The stated mission of Facebook—and by the way, I am a very active Facebook user—is “to give people the power to build community and bring the world closer together.” But its for-profit business model puts sales growth first, ahead of serving that basic human need to feel connected. Investor pressure for results has not surprisingly translated into data-collection and advertising. Both at the expense of privacy. And decency.

Selling Patients Data is not OK

Maybe it’s OK for car ads to appear in the news feeds of anyone who has ever booked an oil change online. Or for expectant moms posting ultrasound pictures to be fed advertisements for baby furniture. But collecting personal information and advertising to patients in the midst of a health crisis is simply not OK.

Imagine Hanna, or any patient or caregiver trying to cope with the unimaginable, logging in to see offers based on the late-night WebMD research everyone does when they are too worried to sleep. Or landing on a mailing list to buy something related to their worst nightmare. That’s the very definition of adding insult to injury.

No Time to Make a Statement

While quitting social networks to make a statement fits in the continuum of responses to Facebook’s lack of regard for privacy, families who have a lot to communicate with a lot of people typically don’t have much time to invest in protest. Especially if the information-sharing alternative is non-stop phone calls and responding to individual emails and texts for every health update.

Another option exists in CaringBridge, where decisions made by our software-engineer founder 21 years ago—when Mark Zuckerberg was 13—created an online space of help, hope and healing. When Sona Mehring of Eagan, MN, launched one website in June 1997 to support two friends whose daughter had been born prematurely, she said she pictured surrounding the new family with love, hope and compassion. Hundreds of thousands of websites and billions of visits later, love, hope and compassion remain the only things surrounding CaringBridge users.

As technology has advanced, opportunities to gather information and market to patients, caregivers and their loved ones have been plentiful. But as a nonprofit supported by those who know how much it matters to feel connected, families like Hanna’s will forever find in CaringBridge a safe place to turn. It has always been that way. And always will.

New to CaringBridge and Wondering What We Do?

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health crisis through the use of free, personal websites. Know someone who could benefit from starting a CaringBridge site to keep loved ones informed and get the love, and support they need?

Learn more

About the Author

Patricia McMorrow has been the CaringBridge content strategist since 2016, and author of the How We Heal and Caregivers Up Close series.

Sours: https://www.caringbridge.org/resources/sharing-health-online/
Monetisasi Facebook dengan Reupload? Enak Banget Sih!? (Cara Report Facebook)

Phil Brandt is not the kind to burden his friends and family members with his problems. So when he was diagnosed with cancer in , he figured he and wife, Rollie, would deal with the situation largely in private.

Think again, said his daughter, Heidi Panelli. &#;You&#;re getting a CaringBridge site,&#; Brandt recalls being told.

A what? A master carpenter by training, Brandt was not all that handy with computers and had scant use for the Internet. He had to be educated about Minnesota-based CaringBridge.

The social network, created in , allows sick people or their loved ones to set up free journal- or blog-like sites to keep friends and family in the loop, and to receive words of support when the gestures are needed the most.

Brandt got those on his CaringBridge site&#;s guestbook and then some.

&#;When you first go in the hospital, you feel kind of alone,&#; he recalled. &#;But when I started getting those messages, oh, my goodness, it was like people were coming out of the woodwork. It really lifts your spirits because it lets you know people care about you.&#;

CaringBridge, founded before &#;social network&#; was used in any online context, has grown into an Internet institution because it&#;s so effective at knitting together the ill and the folks they know into intimate and uplifting circles of support.

CaringBridge users&#; sites also have a practical purpose: They minimize the time and effort such people have to spend keeping others up to date, since quick site updates via desktop computers or mobile devices can take the place of repeated, time-devouring phone calls, e-mails and texts.

&#;It was so nice to notify everybody in a heartbeat,&#; Brandt said.

Eagan-based CaringBridge saw its visibility spike not long ago with the news that the estate of a Minnesota couple, Roger and Hazel Perkins, had made the largest-ever donation to the nonprofit organization.

&#;This was gifted as an endowment, so it is not a big influx of cash, but it does establish a legacy of giving for others who want to participate,&#; according to CaringBridge founder Sona Mehring. It is &#;something to build on,&#; she stressed.

Mehring, a onetime Web-site developer, created CaringBridge out of personal need. One of her friends gave birth prematurely to a baby in precarious condition and she asked Mehring to &#;call everyone,&#; she recalled.

&#;Instead of making the calls, I turned to my background,&#; Mehring said. &#;The first CaringBridge site,&#; a rough, manually coded affair with a basic digital-guestbook feature, &#;was born that night.&#;

The work of CaringBridge continued.

&#;I already had a consulting business, so it was a natural extension to offer this service,&#; Mehring said. &#;Instead of creating websites for plumbers, I could apply my passion for technology to get people connected with each other on a deep emotional level. It was the perfect, compassionate use of technology.&#;

When her mom was diagnosed with breast cancer in and moved into her east-metro home, Mehring naturally set up a CaringBridge site.

&#;Mom loved it,&#; Mehring recalled. &#;She was not very tech-savvy, and was amazed when people wrote in. I still get goosebumps seeing the impact of the site on my mom&#;s face.&#;

The woman&#;s cancer went into remission, but it rematerialized in , and her site &#;became an end-of-life story,&#; Mehring said.

This is no less powerful, she believes. Such sites are not deleted if their subjects pass on. They become treasured memorials for relatives and friends.

Natalie Bushaw, the Eagan mother of 8-year-old twins who were beset with health issues in the womb and all of their lives, has turned to CaringBridge again and again for emotional and spiritual support.

One boy, Logan, recovered &#;badly&#; from open-heart surgery in , spiraling into kidney failure and a collapsed lung that left the boy &#;gasping for air,&#; Bushaw recalled. His heart needed to be shocked back into a normal rhythm with electrical paddles.

&#;I&#;ve never been so scared,&#; said Bushaw, who remembers frantic typing on a hospital terminal as she begged for support on CaringBridge.

&#;Oh, the posts that came back from people,&#; she said. &#;They were like an army of people helping to keep us strong in those dark, dark days.&#;

Many CaringBridge users are repeat customers, setting up multiple sites as health problems arise in their families.

Bill Heyman of Eden Prairie created one site when his wife, Jodi, fought breast cancer resulting in a double mastectomy, and set up another for himself a year ago to keep friends and family up to date on his recurring battle with skin cancer. He had surgery on Saturday.

Heyman, a mobile-device app developer who is far more tech-adept than a typical CaringBridge user, said he would have had little trouble setting up his own health-update blogs for himself and for his wife. He&#;s glad CaringBridge has saved him the trouble, though.

&#;And the price is right,&#; he added.

Heidi Panelli, the daughter of Phil and Rollie Brandt, also has seen CaringBridge used again and again in the family. Her brother and her 3-year-old daughter each had sites when they underwent open-heart surgeries at different times.

After setting up a CaringBridge site for her dad in , Panelli turned it over to her computer-hip mom, who plied her bedridden partner with printouts from the guestbook.

&#;That was the highlight of his day,&#; Rollie Brandt recalled, before her husband&#;s cancer went into remission.

He is in treatment again, and this time is better prepared, now that he has learned to use a laptop and can get to CaringBridge all by his lonesome. His computer &#;is right in bed with me,&#; he said.

Julio Ojeda-Zapata writes about consumer technology. Read him: twincities.com/techtestdrive and yourtechweblog.com. Reach him: [email protected] or Follow him: ojezap.com/social.

CARINGBRIDGE

Mission: Making it easier for the sick to keep friends and family in the loop and get their support.

Design: CaringBridge is an easy-to-use, blogging-style service that lets the ill or their loves ones create and update journals related to their health situations, post photos and field comments. The site has several privacy levels. It is free and ad-free, subsisting primarily on charitable donations, the bulk of which come from site users.

Mobile: Like other social-networking services, CaringBridge has moved onto portable devices in a big way with apps for the iPhone, iPad and Android devices, along with a mobile-optimized site.

Traffic: CaringBridge users have created more than , sites since the service&#;s inception in and drawn billion visits. Each day, about half a million people interact via the service.

Scope: CaringBridge site creators, site visitors or donors hail from all 50 states as well as from other countries or territories.

Social-media effect: Only 12 percent of CaringBridge visitors used social media before arriving on the site. Yet, according to the service, &#;CaringBridge has actually become many individuals&#; introduction to deeper online and social-media engagement, and served as a catalyst for many to become more socially active online.&#;

Staff: Based in Eagan, CaringBridge has 65 workers, volunteers and a member board.

Site:CaringBridge.org

Sours: https://www.twincities.com//03/24/minnesotas-caringbridge-let-the-sick-and-their-families-blog-long-before-facebook/

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Turning to Social Media in Times of Need

Retirement Special Section

Heidi and Frank Vardeman in Michigan City, Ind., in March. They used a social media site, CaringBridge, to update friends and family after learning that Frank had a tumor on his spine.

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 Mr. Vardeman, 62, could return to his home in Chesterton, Ind.

Though the growth on his spine turned out not to be cancerous, he is now paralyzed 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 mutt on the shores of Lake Michigan. Watching his 1-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 Mr. 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,” said Ms. Vardeman.

After the latest setback — major surgery April 21 followed by an infection — Mr. Vardeman could not go on a much-anticipated wheelchair-assisted trip to London, to attend a friend’s consecration as a bishop in the Church of England. He insisted his wife travel there with a friend, who had also planned to attend, while he remained hospitalized in Atlanta. In her latest post, written from Europe, she tells friends and family, “We are now coping with a new reality, that Frank has completely lost use of his legs.”

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, Mass., who co-founded the company in 2005 with Barry Katz, a friend, after Mr. Katz’s wife died of ovarian cancer.

For a patient with breast cancer or colon cancer, the average size of a group is 90, he said. Those caring for the very old and Alzheimer’s patients have a harder time rallying support, since networks tend to shrink as people age and caring for people with dementia can be particularly upsetting and challenging. Angela Radicia, 66, a retired social worker in Council Bluffs, Iowa, uses the Lotsa Helping Hands calendar, via smartphone app, to coordinate home care for her 91-year-old mother, who still lives alone.

But she has eight siblings, half of whom live nearby, who can rotate through the four daily shifts she has created. At a cost to their mother of $1,000 a month, they supplement these efforts with a home health aide one morning a week and another who covers weekday dinners. Ms. Radicia posts updates to cousins and other members of the extended family but, to minimize time-consuming debates, restricts their ability to comment.

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, Kan., Mr. 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,” Mr. 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, Mr. 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 eight 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, Ms. Maholtz, who lives in Irmo, S.C., 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, Ms. 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 Ms. 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, Ms. 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.

Sours: https://www.nytimes.com/2015/05/14/business/retirementspecial/turning-to-social-media-in-times-of-need.html


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