(ARA) – Who would ever imagine a healthy college senior might suffer a stroke? But that’s exactly what happened to Nancy Worthen’s daughter, Maggie, at the end of her senior year at Smith College in Massachusetts.
When Maggie fell into a coma after experiencing a brain stem stroke, one of the many stressful challenges Worthen faced was keeping family and friends from around the world updated on her daughter’s condition. “You just have so many people who want information and are trying to reach you,” she says. “We wanted to make it simple for people to find out what was happening.”
Worthen turned to a resource that’s becoming increasingly popular among families and caregivers of patients who’ve experienced a serious health event like Maggie’s stroke – free, personalized Web pages where they can post information about their loved one’s progress.
“Caregivers face many stresses when dealing with a loved one’s injury or illness, including the need to provide consistent updates to an extended network of family and friends who want to know how the patient is doing,” says Sona Mehring, founder of CaringBridge.org, a nonprofit organization that helps caregivers create Web sites for health updates. “Putting information online can be a big stress reliever for caregivers because it allows them to communicate important, and sometimes difficult, information quickly and effectively to a large number of people, without having to repeat the same news over and over again.”
Having a Web site “allowed us to tell the story we could never have told to people personally,” says Michael Dunn, whose identical twin daughters were diagnosed with neuroblastoma when they were just two months old. “It would have been a much more difficult and lonely time without it.”
“It’s important for caregivers to take care of themselves, as well,” Mehring says. In addition to using the Internet to stay connected with family and friends, she suggests, caregivers should:
* Talk about it – Don’t avoid telling friends and family; it’s not good for your mental well-being to keep such stressful news to yourself.
* Ask questions – You’ll hear a lot of medical terminology and treatment options. Don’t be afraid to ask questions, seek second opinions and even gather information online from credible Web sites. The more you understand the situation, the more you will feel able to cope with it.
* Try therapeutic journaling – “Many people who use CaringBridge say it is beneficial to write their thoughts and feelings down,” Mehring says. “Journaling can bring relief and allow people to focus their thoughts on other important matters. Sometimes it’s easier to write down what you’re feeling rather than speak it out loud.”
* Accept help – People truly care and truly want to help; let them. Post on your personalized Web page what you need and let family and friends in your online community decide how and when they can help. One person might offer to help with transportation to appointments. Another may be able to help with babysitting or cooking meals. “View help as a useful expression of that person’s caring, not as a favor,” Mehring suggests.
* Relax – This is a stressful situation. Patients and caregivers need to take time for themselves. Meditate, do yoga, go for a walk, take time off from work, turn off your phone for a few hours or get a massage.
Courtesy of ARAcontent
