Conscious Departures

Roamin’ Forums July 29, 2012

In my last post I made a point about the internet’s value in getting support for caregiving. I find it extraordinary that we can so easily connect with people all over the world who are going through, or have already gone through, similar experiences to us. Additionally, it also gives us access to professionals offering their thoughts and advice freely. For a non-professional caregiver support like this is invaluable, especially now when we are increasingly taking care of loved ones at home.

I had suggested looking at some “forums” as a good resource for support and information, but I realized afterwards that some readers may be unfamiliar with forums, so I thought a little primer may be helpful.

A forum is different from a blog in that it is where people come to discuss one or more topics. It’s a conversation rather than, like a blog, one person’s expression. The top of a conversation starts with a question or comment from anyone and then people respond in what’s called a “thread”. As an example  let’s take a look at one of the forums I suggested: the Family Caregiver Forum. Here’s a screen grab of the home page:

This is a typical layout for a forum. As you can see this forum has only 4 main categories noted in the left hand column, beginning with Caregiver Depression and ending with Getting Doctors to Take Notice. The next column tells us how many topics are being discussed in that category (i.e. 503 in Caregiver Depression). The last column tells us the last time someone weighed into the discussion. I took the screen grab on July 24, so the first 3 categories have postings from that day. You’ll also notice some buttons on top that will allow you to login, search the posts, etc.

So let’s say you are interested in reading the latest discussion in “Advice to Other Caregivers”, the second topic down,  you would simply click on that link and you would end up here:

There’s a lot of recent conversations going on. At the top of the list we are shown there are 7+ pages of conversations, so we are only looking at the most recent 14. Subsequent pages continue to go further back in time. The second column is telling us the number of responses. The topic “Another Question” looks pretty active with 22 responses as of July 23^rd.  So, let’s click on that topic and see what’s happening:

Since the view of the forum is modifiable, I chose a layout that shows the thread (conversation) on top while the actual content of the thread is below. The very beginning of this conversation – “Another question “- started back on Sept 28, 2011. Someone named “busybee1”, exclaimed frustration because she found it so hard to be a caregiver for her husband and be working at the same time. Busybee1 wanted to know how other people were coping. Great topic for a conversation. This conversation has gone on for a good 10  months, right up through July 23^rd , 2012!

Usually you can read the posts in the forum without being a registered member, but you’ll most likely have to register if you want to participate. I’ve never seen registration cost anything. When considering joining a forum there are some things you want to look for:

• Current activity: some forums die out but their ghost remains. If the last post was 2 years ago it means the forum is dead. Now that doesn’t mean there aren’t some great conversations in the archives, but don’t expect anyone to answer your questions.
• Lots of contributors: It’s helpful to have a lot of voices participating so you can get a wide array of perspectives and experiences. It’s not like everything said in a forum is gospel, but when something clicks for me it’s really helpful. The more voices and experience the more likely I’ll get some good ideas. Again, that doesn’t preclude lower trafficked forums where you might find fewer voices but very bright ones.
• A good mix of professionals and non-professionals: to hear from non-professionals is really helpful, simply because that’s what many of us are. In this way we get to hear someone’s real time experience and learning who’s just like us. On the other hand, the professionals can be more detached and provide an educated view of the same topic.
• Look at who is sponsoring the forum: often it can be a hospice or a site dedicated to specific needs. Some sponsors may cause there to be a bias in the conversations. A good site will be carefully moderated so it’s not full of spam or obnoxious participants but will allow many opinions as well.

Finally, I noted two forums in my last post: The Family Caregiver Forum:  and  The Elder Care Forum . Here are a few more very good forums you may find helpful:

The Aging Care Forum: this is part of the Aging Care website. This forum is pretty active and has quite an extensive list of topics grouped into bigger categories such as “Caregiver Support”,  “Daily Care”, “Health Conditions”, “Money and Legal”,  and a few more.

Hospice of the Valley Grief Healing Forum : This is one of my favorites, probably because I found a great deal of support from this forum after K passed away. I don’t remember ever participating by asking a question or responding, but I read quite a bit and that in itself was very satisfying. If you are not grieving but even think you may be starting to, they have a topic called Anticipatory Grief and Mourning.  Even with the large amount of main topics -16 – you’ll find very current postings and a lot of participation.

ALZ Connected Caregiver Forum : this forum, hosted by ALZ.org, focuses primarily on those who are caregiving for someone with Alzheimer’s. I have not used it but it looks like it has a strong community of partcipants with many current conversations and 9 main topics. One conversation has over 600 responses; wouldn’t you know it’s a conversation about jokes. Wow, do caregivers need a good laugh! I like this little take off on Murphy ’s Law posted there: “The 50-50-90 rule: Anytime you have a 50-50 chance of getting something right, there’s a 90% probability you’ll get it wrong.”  

The Cancer Forums : This is a very well run forum all about cancer. Although there are only one or two topics specifically for caregivers you can ask questions in any of the topics that pertain to your loved one’s specific cancer type. The range of topics are amazing covering areas such as  brain tumors, breast cancer, cervical cancer, childhood cancer and so on. Every single one of those topics has a conversation no older than a day or two and the bulk of them had postings today.  Right now, as I am looking at the forum on a Saturday night, there are 546 users online. That’s pretty impressive.