I've had several friends use it when their husbands were hospitalized. It gave them the opportunity to communicate the daily news easily without taking a lot of their time. I really appreciated the daily updates.
Have you used it Lori? My sister suggested that I use it for our family and friends to keep them up to date on my husband. I'm ok sending notes to folks but I'm not sure I want to create a web site about it.
You don't need to create a whole website. You can just do a blog on www.blogspot.com. Bill did one specifically to update friends and relatives on Carol's condition. Take a look - http://howiscaroldoing.blogspot.com/
There is a young woman in town who is fighting cancer. Either her or her husband writes on caringbridge.org every day to keep folks updated. Seems like a good idea to me.
I thought a blog would work as well Joan. But I have heard from my sister that she really liked this caringbridge.org so I thought I would look into it. I had not seen Bill's blog but I've seen others. I'm just struggeling with making it so public on the internet but it does seem like a good idea so that people can pull the information if they want to. Not sure what I will do yet.
I struggled with the privacy issue before I started this website. It may seem hard to believe now, but I value my privacy, and it was a very difficult decision for me to go public with my innermost thoughts. I was astounded at the positive response.
If it is friends and relatives you want to reach, sometimes a public blog or a place like caringbridge.org, really allows them to understand what is happening with you and your loved one. It's a tough decision.
I too have enjoyed this site and it has been a God send to me! I see the risk that you took Joan to do this but I also see how many lives you have made easier for doing it. You have made a difference in many lives! thank you.
I've been typically sending e-mails to our family and friends over the past year to give them updates on my husband. It has been one thing to put information about me on the web and to send e-mails because I pick and choose. It feels like something different opening a blog. I'm still not sure what I will do. My husband would be furious if he found something like that but I guess it isn't such a big deal since he isn't really computer literate and doesn't spend time on the internet.
I just logged onto carepages.com. Doesn't seem to have a privacy issue, since I didn't see any updates on the condition, I was allowed to post a message. My God daughter, daughter of the friend I am moving in with, is now traveling around Europe. A friend of hers developed Leukemia in 2008, Make a Wish Foundation sent her to Boston a few weeks ago for a bone marrow transplant. She was expected to fully recover, but she developed a staff infection & has been on & off life support since last week, with a 10% chance of survival. She is a triplet only 20 years old. My God daughter will probably cut her trip short, this was one of her best friends and she is devastated.
Maybe I didn't know how to navigate the site? Has anyone used this site? I don't want to say anything inappropriate if she has died. The family asked me to post, so I am assuming she is still alive.
I started a site on caringbridge.org to help keep family and friends informed. Thought about the privacy issue but I've decided it's more important that individuals understand about FTD/Az than my own perceived privacy issues, real or not. I think I have a story to tell and I'm going to do the best I can telling it. Now if my DW knew I'm sure she wouldn't be very happy with me. Oh well..
Feel free to visit her website at www.caringbridge.org/visit/lynettaalferio
I have posted on CaringBridge when a friend was dx with multiple myeloma..it was a great site for keeping friends and family up to date on how the patient is doing, send greeting and gives them the chance to post comments when they feel up to it or someone can post for them. pictures can be posted too..it is a great source of encouragement for the family.
An old acquaintance of mine from Massachusetts is in the last days of a 15 year cancer battle. Her daughter made a Facebook Page separate from her own specifically so everyone could be kept up to date on her mother's situation. I guess many people familiar with the workings of Facebook are using it for purposes like CaringBridge.
One of our dearest members, NancyB*, used Caring Bridge when her grand daughter had a heart transplant last year. It was a wonderful way for us to track Krissy's progess. Blogspot is also a good avenue
aalferio, Checked out your blog on Caringbridge. Lynn is so young and vibrant. My heart breaks for you and your family as well as for Lynn. My DH is 78 and has led a full life. It is obvious how much you are both missing. <<<hugs>>>
At 1st I was angry that my DW was stricken with ALZ at such a young age. However, as time went by and I learned more and more about ALZ I realized that this disease is a tragedy at any age. I do believe in the next 30 years or so, someone somewhere will develop either a cure or a method to truly slow down this disease. I believe this because the financial cost to our society, through Medicaid, etc, as us baby boomers get older will drive for a cure. Unfortunately, it will be too late for our LO.