Website makes it easy for patients, families, friends to stay in touch
Amy Grose explains the advantages of CaringBridge to
patient Theresa Howard.
A common lament of the modern age is that computers isolate users behind display screens instead of letting them talk face to face. Yet even as they divide, so do they join. One shining example is an interactive website that brings people together when they may need it most: when someone is ill.
Dana-Farber/Brigham and Women's Cancer Center recently became a sponsor of CaringBridge, a nonprofit, free online service that links friends and family when a loved one is receiving medical care. Through this service, families and patients may send messages, write journal entries, and display photographs through a personal website, www.caringbridge.org. Visitors can remain up-to-date on their loved ones' conditions and write their own messages of support and encouragement.
Learn more about CaringBridge, view a loved one's Web page, or create your own.
Michele Myers, 42, and her husband Tim used CaringBridge when she was receiving care for chronic myelogenous leukemia (CML) at Dana-Farber, including a stem cell transplant. Myers raved about it to her social worker, Amy Grose, LICSW, and DF/BWCC later became a sponsor. Patients have always been able to use this free service, but as a sponsor DF/BWCC receives recognition on the site.
"I heard about CaringBridge through an online support group for CML patients," says Myers, who lives in Canastota, N.Y. "Tim and I set up our page just before my transplant. I updated it when I could, and he took over during my long hospitalization."
With children aged 11 and 14 at the time, Myers was concerned about getting the medical details right. "Medical information can be distorted when it travels by word of mouth, especially in a small, rural community like ours," she says. "When you post it yourself on a website, everyone sees the correct information."
The service allowed people to stay in touch while sparing her family abundant phone calls and visits, says Myers, who received 10,000 site visits during her transplant. "It worked well in our community, where everyone wanted to be involved. It was good to know so many people were cheering for me."
Grose, who has recommended the service to other patients and families, points out that even those who are not computer-savvy find it easy to use. "CaringBridge can be a family affair, with children sharing their thoughts about their mom or dad," she says. "Another advantage is that the website provides a written history for patients to use if they want to look back on their experience."
There are many additional benefits for friends and family. CaringBridge allows them to hear potentially upsetting news at a time and manner of their choosing. Also, visitors can build on one another's messages, as well as coordinate help, such as providing meals and transportation. Grose recalls a circle of college roommates who were reunited by CaringBridge while one had cancer.
Marlene Nusbaum, a member of the Dana-Farber/Brigham and Women's Adult Patient and Family Advisory Council, says a close friend with brain cancer and his family are now using the service, which they describe as a godsend. "As a prominent physician and artist, my friend has a wide circle of friends and family worldwide, in addition to children on the West Coast," says Nusbaum. "He and his family have taken turns updating the site, even posting photographs and poems."
Nusbaum wishes she had known about CaringBridge while going through breast cancer treatment two years ago. "One of the most difficult aspects of learning I had cancer was the need to make friends and family aware of my illness," she says. "At a time of great distress, my husband and daughter were forced to make many phone calls a day for months."
Most important, CaringBridge provides an easy way for people to tell someone who is ill how much they care, says Grose, whose stem cell patients are hospitalized for four-to-six weeks. "How often do we have a chance to do that? These messages of love give them support in their cancer journey."
