In large, communicating medical status to family, friends and loved ones is a tough laborious process. I don’t know if you can imagine repeating over and over again that your sister has had serious complication during surgery or recovery. It’s hard enough to accept it oneself, let alone, communicate the bad news over and over again. I’m sorry to all the friends who fall into this bucket, but I just don’t reply to people’s emails regarding her status anymore. It’s just a bit worse than signing those stupid yearbooks at the end of each year of high school.
Which brings me to Care Pages. Care pages are basically blogs which allow friends and family to post patient status updates. They provide for the right level of disclosure in mass - we can post any status update we want. They especially eliminate those kind hearted yet pesky one liner emails: “I hope your sister is doing well, let me know”. While I appreciate those comments, I’ve been replying with the location of my sisters care page and asking them to consult it for updates (www.carepages.com – if you want the name of the care page please leave your email in a comment on this post or email me directly).
Further, there is a message board section on the website allowing caring friends and relatives to leave encouraging comments for my sister and my family alike. I'd encourage everyone to leave a message. I know many of these comments have put a big smile on my sisters face (as well as on mine)! But just a quick note, if you don’t use computers and can’t figure out how to post a message on a care page, don’t explain that you are not good with computers in the first sentence of your message. My 21 year old sister has the mental capacity of a 14 year old, is blind in both eyes, and still she can figure out how to put a comment on her care page.
Additionally, families may setup charitable organizations such that in the event of the worst, donations may be channeled through the website. Visitors may even purchase presents on the site to be sent to my sister (Note: no flowers as my sister can’t see / nor smell and it pisses her off people think to send flowers to someone like her – sometimes it’s just insulting).
There is a Guest Book and unknown to the care page visitors we can actually track, and block people from being able to visit the care page. I thought it was funny that a few of me and my brother’s ex girlfriends had somehow found out about the site (note, not the ex’s that I purposely invited). And I think it’s even funnier that one of my Uncle’s has signed in over 30 times to check her status (in 4 days) – sorry not funny ironic – you really appreciate who cares and who doesn’t. The next time I see my best friend I’m going to ask him how he liked the care page and when he says he liked it I’m busting him for having not visited (as only real friends can do).
Anyway, that’s about all. For some stupid reason, I decided to try to continue working while she was in the hospital. I originally had the week booked off to spend time with the family - simply because I didn’t know if I could deal with the stress of the office, life, and the hospital. UNFORTUNATELY MY CONSULTING FIRM, strong armed me into working this week – something I should have never agreed to do. But now that I’m here, I have Firefox open with ReloadEvery constantly refreshing my sisters care page. Almost makes me feel like I’m in the hospital.
If you are sick, or someone in your family is sick, setup a care page. It will help you AND your family answer all those kind hearted yet pesky and annoying questions.
Over and Out