To Serve or Not To Serve, that is the question.

You know the expression "Damned if I do, damned if I don't" I am sure.  That is exactly what I am feeling today.

Almost exactly a year ago, I was invited to be a member on the Pennsylvania Governor's Task Force on Alzheimer's Disease and Related Dementias. (How is that for a handful of a title?) Of course I was extremely honored. More than that, though, I was thrilled that FTD would be represented on the task force.

I did my best to represent FTD and other dementias against the majority interest of Alzheimer's Disease. It was extremely frustrating, at times, to get them to remember that dementia does not equal Alzheimer's. I am positive that every time I would raise my hand, there were a lot of silent "Here she goes again!"  I did not mind that and I did get through to at least the leaders of the task force. 

I attended all the meetings that were leading up to the State's annual forum on dementia. The forum was cancelled the day before it was scheduled due to a huge snow storm. It was never rescheduled. Then the governor was reelected and he changed his Secretary of Aging, the department responsible for the task force. I figured that was the end of the task force and our efforts. Fortunately, I assumed incorrectly.

Today, I received an email from the two leaders of the task force saying that we are to meet again on May 9. This really hit me hard. I knew I could not make the May 9 meeting, but also questioned if I could continue on the task force at all. May 9 is during the week following the AFTD Educational Conference. I know that I will probably still not be recovered well enough to be at my best by the 9th. The biggest obstacle to me attending is that after leaving my husband at home after just being gone for four days. With his Alzheimer's Disease, his anxiety level and confusion continue to worsen. Although the person I have staying with him during the conference is the one person he likes to have around, it is still me he wants and relies on. So the May 9th meeting almost certainly out of the question.

Added to that is the frustration of not being heard at the meetings. As often as I reminded them that Alzheimer's is not the only dementia and we must remember the "other" dementias, it was as if I never said anything. I will say that one of the chairs of the task force did understand FTD and the importance of including it. He also stressed the importance of including the "other" dementias. The Secretary of Aging, at that time, also expressed appreciation of my efforts and I was able to have a lengthy conversation with her about FTD. 

Right this minute, as I am writing these points, I came to my decision. I am going to reluctantly resign. I will stress to the chairmen of the task force how strongly I feel they need to replace me with another advocate for FTD. If not that, then an advocate for one of the other dementias. As you can imagine, dealing with my FTD and my husband's Alzheimer's is overwhelming at best. I believe that right now, I must put the two of us first in my priorities.

I am proud of my efforts over the past year. I am still, truthfully, left  with extreme guilt over this decision. I feel like I am letting all of you and the AFTD down. Hopefully, I did make an impact on at least some of the other members of the task force and they will remember there is more to dementia than Alzheimer's Disease.

Now that I have made my decision, I hope that every one reading this has confidence that I will continue advocating for FTD and those of us affected by it. I will just have to find other ways that I can do it without having to travel out of town in order to be here for my husband. I will certainly continue this blog...