There was a curious synchronicity in my intended subject for this post and the first one of my original FB posts that I moved onto here. (…hat-is-happening/ )
In both I was writing about the experience of going to an in-real-life support group (the same one in-fact) and how this was an exhilarating experience, much more so than an on-line group.
And it had nothing to do with the actual content of the meeting but much more to do with being in the presence of people who, without saying anything, knew and appreciated my background and I theirs. It was like a smaller version of the comraderie that filled the room at the May 5th education meeting in Baltimore sponsored by the AFTD.
However different our lives when it came down to the minutia of day to day management and getting through it, our lives resonated to the same rhythm. There was something very dissimilar that distinguishes this IRL (In Real Life) group from the online groups and that is the gender split of the caregivers.
The majority of caregivers in this group are male and, from my experience with them over the past year, rarely share much about personal feelings beyond the occasional mention of transient depression or anxiety.
Of course this meeting is only once a month and the very fact of leaving one’s home to travel to a group seems as if it would push away some of the anxiety and raw feelings that are expressed so frequently in-the-moment on line. This group has been pretty stable the last year with most people attending most times and it is my impression that all of the caregivers that attend have accepted their situation and are just trucking along, doing what they can.
There is always a little personal hit for me at this group. The meeting is always attended by the persons with the disease and most of them break off to go with the SPL (Speech and Language Pathology) grad students to work while most of the caregivers stay behind for the presentation. I see people who were at the same level as my wife last year and who have changed only marginally and can still function well in a friendly group while my wife has gone downhill dramatically in that same time.
Yes, nothing to do about that, just get through the day.


Thanks for reading. I would appreciate any comments or if you mention this blog to any of your friends or relatives who might benefit from reading one man’s perspective.

4 thoughts on “Synchronicity”

  1. I am the wife of a man who has FTD and have been attending a support group for over a year. It meets once a month and seems somewhat beneficial, although I have no other venue to compare it with. We rarely get a husband to attend..I think there have been 3 since I started..and they come infrequently.

    I think that it takes a certain kind of man who is comfortable sharing his feelings in a group setting. I wish that more would attend, but not really sure how to encourage broader participation by this segment of caregivers.

    1. Vanetta, you are probably right. Men are socialized to hold things in and tough it out. If there is another man to set the example, they will start sharing.

    1. Sorry, I slipped into using buzzwords.
      IRL = In Real Life
      SLP = Speech and Language Pathology

      Thanks for the comment

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