Why Can No One Hear Me?

I do not often post a blog twice in one week, but if I do not address this topic again, I may self-implode!

WHY CAN NO ONE HEAR ME???  I acknowledge that I now have to speak much slower, especially when I struggle for words and begin stuttering.  In addition, my voice is not as loud as it used to be but I would think that most people would view this as a good thing.
 
I experienced a prime example of this yesterday. One of the things I can no longer comfortably do is grocery shopping. I have written about this before. My husband has kindly taken on this task, even though it is quite foreign to him. This week, however, I decided to be brave and go along because I needed some things that I just couldn't explain to him. This was a Monday, and since Mondays and Tuesdays tend to be uncrowded at our store, off we went. We also went mid-afternoon when it is also less crowded.  Good plan, right?

All went well until we were looking for an item that was on sale, a new "healthier" cookie.  We looked everywhere we could think they might be... several times.  I wanted to just forget it, but husband asked an employee for assistance.  She searched all the same places and could not find them either... DUH!  She then called the manager in on it. So there we stand, all four of us in the middle of the aisle discussing this issue to death.  I kept trying to suggest somewhere else they might be.  I waited until nobody was talking, then started to say what I wanted. My mamma taught me right, after all.  I would get four or five words out and then someone else would start talking, totally ignoring the fact that I was speaking. This happened somewhere between four and six times, then I did my exasperated thing... shrugged my shoulders, threw my hands up in the air and walked away.

I don't know if one of the employees said something or my husband just found it necessary to explain. As I walked away, what I heard him say was, "She has dementia and is frustrated because she wants to say something." I wanted to scream, "No, I just want someone to listen."  So then, after he embarrassed me with his words, they stood there impatiently and listened, then totally dismissed what I had said. So now, there is a hole in the cookie aisle, because I dug one and crawled into it.  Oh, wait, maybe that was just what I wanted to do, in my mind.

I could go on and explain another example that happened today between just my husband and me. To make it short, he asked about something, I said it was just a spare.  He spoke another sentence or two, then said "So is this only a spare?"  Arrrgh! Right here, I will explain that my husband is the best caregiver and husband anyone could ever wish for and after 42 years of marriage, we are in it to stay.  We still love and laugh and we are pros at bickering and then laughing about it.  He is a good man, but even the good ones can frustrate us sometimes!

Several other FTD friends I communicate with online have suggested My husband and I both carry little business cards that are available through the Association for Frontotemporal Degeneration - www.theaftd.org//  Only problem is, to me anyway, is that they are just as in-your-face as what my husband said in the store. My project for tomorrow:  I have decided to make an attempt at making up some cards myself that don't make it sound like it is my fault that I have FTD.  I am probably more sensitive than I need to be, okay, no doubt about that, but as they say, "It is what it is!". That's the way I am, I can't change it, so we need to come up with ways to deal with it.

To all you caregivers out there, please do not dismiss what your loved one is trying to say.  Allow them to speak and truly listen to them.  Say something positive, even something simple as "Thanks for saying that." Even if you get gibberish, the feeling of belonging and having a purpose that he/she gets from it surely will be worth dealing with a little frustration on your part. Bottom line, PLEASE LISTEN!