Social Networking Sites

The caregiving environment today, like the rest of our lives, is more complex and demanding than in the past. It’s not just about giving casseroles anymore, not that casseroles don’t have their place in the caregiving toolkit. Fortunately, there are new tools available to help manage the complexity.
A major challenge for every caregiving team is communication between all involved. What should be said? When should it be said? Who should say it? Communicating about issues surrounding illness and caregiving can sometimes be like the game of Telephone Tag, where information gets passed from person to person, with the result being that the message gets garbled and mistranslated along the way. Except in this case, people are sharing technical information about diagnoses and treatment and private information about feelings, choices and values. Misunderstandings, misstatements and fatigue can complicate well-meaning intentions. What’s the solution?

Here are two websites that can offer some help.

One is Lotsa Helping Hands (www.lotsahelpinghands.com), a non-profit site created by Barry Katz, using his experience as a caregiver for four years, to help caregivers coordinate their information and schedules using a unique website. The site provides “an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It’s also a place to keep these ‘circles of community’ informed with status updates, photo galleries, message boards, and more.”

The caregiving team chooses a coordinator who registers the group and creates an up-and-ready website. Only the coordinator can change the website. Caregivers can check the site for announcements, calendar information, resources and activities requiring volunteers. Medical information can be posted securely. Everybody can find out what is going on from a single source. The person receiving care can control how much or how little of his or her private information gets distributed. The service is free and there is a training video on line.

Another example of this kind of website can be found at www.caringbridge.org. To access the service, select “caringbridge org” from their main menu and then select “carepages:patient sites.” The site helps a patient create a free, personalized blog that helps him or her communicate with whomever he/she chooses. It provides the user with the means to communicate with friends, family and caregivers, post updates, share photos, connect with other patients and their families, and to search for and locate other people who have the same condition to get and offer advice and support.