Managing Illness Updates through a New Social Media Tool

by cindybrugge

When my grandmother was diagnosed with cancer earlier this year, it took a major toll on my extended family. The matriarch of our family tree, she is my only living grandparent. With four grandparents down and only one to go, I did not handle her illness well.

My parents, grandparents and aunt at my dedication

My surrogate parent, she hid Easter eggs, bought me my first bra, organized tea parties, sewed dress up clothes and kindled my competitive nature by being a fierce Spades opponent. As close as I have been to her, I am not alone in this sentiment. My 12 cousins have slight variations of the same story. She was our playmate through childhood, our advocate through adolescence and remains our mentor as we have matured into adults.

Easter Celebration 1993 with my grandmother and two of my cousins

So, it isn’t hard to understand our heartbreak when she became terminally ill with stage three leukemia. I specifically remember the first time all 13 of her grandchildren came to the hospital on one afternoon. After everyone spoke with her individually, we all came in the room and sang “Amazing Grace.” (Side note: My singing was mostly mumbled words mixed with tears, snot and sobbing noises.) That afternoon made our communal love apparent very quickly and in the passing weeks, I began to see that the admiration for my grandmother extended past my family into the community.

On a daily basis, people crawled out of the woodwork to reach out to her. If she had allowed it, she would have had a constant stream of visitors from dawn to dusk every day. However, the chemo took the spark out of the spunky old broad. She spent most of her days in a great deal of exhaustion and pain and wasn’t able to take in the chaos and outside germs that visitors brought in. Although her friends couldn’t come to her room, she still needed constant supervision from family. So we had an ongoing schedule of shifts for the family to keep an eye on her health. It quickly became very confusing and difficult to maintain the various schedules of the numerous caregivers.

Therefore, when I recently found CaringBridge, I was amazed at the service it provides and incredibly disappointed that I hadn’t discovered it sooner. CaringBridge is a social media site that allows an ill patient create a page to update followers on their health status. Each page has a journal and a photo book to keep followers up to date and a guestbook for people to share kind notes with the ill individual. Each site can be created for public or private use, which can be especially helpful with the sensitivity of illness.

All of these qualities of the website intrigued me, but I was most excited about their supplemental application, SupportPlanner. This website allows the family to manage the various details involved with trying to support an individual in the hospital. The planner helps maintain caregiving schedules and provided meals. It can also allow for pet and childcare, as well as household chores. Juggling the responsibilities of someone who becomes incapacitated in a moment can be very challenging. This app makes this balancing act much simpler. Announcements are posted to one place, making it easier to complete every task while accepting help from the numerous involved parties.

Luckily, my grandmother overcame the cancer through chemo treatment. In remission, she is no longer bedridden in the hospital. However, her illness is likely to return in the coming years. If we are unfortunate enough to undergo this experience again, I will be utilizing this unique feature for my family.