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Thursday, Oct 02, 2014
Caregiving

If getting out is difficult, find support online

Tribune correspondent
Published:

When I chose to undertake the loving task of being my father’s primary caregiver back some 15 years ago, I was a true novice. I had no idea what I was in for, but I was certain I could do it, and do it alone! However, I now admit I was wrong about the “do it alone” part.

The wisdom and encouragement of support groups soon became a vital part of my quest. Soon I became a dedicated proponent of joining in with these other caregivers, at least monthly, in order to gain strength, courage, ideas, etc. I firmly believe that attending these gatherings is a vital exercise from which to gather the essential knowledge that is necessary to make it through the arduous journey of caregiving.

However, one of the first predicaments you will face will be finding someone trustworthy to cover for you at home. Even if it is only for an hour or two, you must be certain that your temporary replacement is able to meet the demands that lie ahead.

In today’s high-tech world, we have the option of joining an online support group. If possible, engage in both methods, for there is nothing like a face-to-face encounter between caregivers. There’s a brotherhood (or sisterhood) type of bond that develops, leading to a very powerful and meaningful experience.

I have discovered a multitude of dementia support groups to choose from online. Be choosy, though, as, sadly, there are some that truly don’t understand the definition of “support.” I have even belonged to groups that have gone so far as to kick members out for venting too much! Can you imagine? Some have given their members a so-called “time out” for debating issues, at times suspending their membership for a certain amount of days.

If you join a group and you’re not satisfied about what you’re seeing and learning, walk away. As I mentioned earlier, there are many different ones to choose from.

I recommend a support group that contains both caregiver and patients, creating a blend from which to gather and share varied information. There are very few places where you can find an education quite like this.

“Forget Me Not” is the name of a group I have been involved with, and I am happy to say I have had nothing but a positive experience with them. Everyone is treated like family. In my estimation, true family is when no one is ever left behind or forgotten. This group can be found on Facebook. Simply enter the name in the search bar and click “join group” and an administrator will accept your membership. They also have a page for Spanish-speaking members.

It is a closed group where anything that is said there stays there. Make sure that is standard with whatever group you join. Remember, you are on the Internet. Open groups may attract vultures searching for their next prey.

Be safe, learn, vent and remember that knowledge is a power that all caregivers desperately need.


Gary Joseph LeBlanc was the primary caregiver of his father for a decade after he was diagnosed with Alzheimer’s disease. He can be reached at us41books@bellsouth.net. His books, “Managing Alzheimer’s and Dementia Behaviors,” “While I Still Can” and “Staying Afloat in a Sea of Forgetfulness” can be found at www.commonsensecaregiving.com.

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