I am learning, slowly, but I am finally learning. Having FTD is nothing to be ashamed of. It is not something I brought on myself or came down with in a dirty way. After all, it is FTD, not STD.
I am finally learning that it is okay to tell people that I have it. Of course most have absolutely no idea what it is, so what I say is "Please bear with me, I have a rare form of dementia and I need your patience and tolerance." This is usually enough, and I am reassured that it is quite alright and I am doing fine. Once in a while, I will see that dreaded look of pity, but most often, it just causes the person to slow down, to listen more closely when I am stuttering, and patiently explaining something for the third time. The interesting thing that I have noted is that young people are much less likely to understand. I am guessing it is because they are young and still feeling immortal. I refuse to believe that it is that they don't care.
Many people have referred me to the site http://www.theaftd.org/life-with-ftd/resources/awareness-cards Here, you have access to several varieties of business card size awareness cards that you can give to someone when you are trying to deal with them. The ones for the caregivers to give to people when I am acting strangely and embarrassing them are probably a good thing. However, the ones that say "I have FTD..." would make me feel weird handing them out. If I get to the point that I cannot talk very well at all, then I will use something like these cards. While I still have a voice, I think it is better for me to just tell them.
A few weeks ago, I was in a restaurant with my husband and our daughter. This was a restaurant we have dined in a few times because it is near our daughter's home. Driving in, we noticed that something was being built in an adjoining lot. After the hostess seated us, I asked her what was being built and she told me it was to be a hotel and what brand it was. We had a wonderful dinner, great service, great food and a great visit with our daughter. When we were leaving, the hostess wished us a good night. Then, I asked the hostess what was being built next door. When I saw the expression on her face, I thought "Uh-oh, now what did I do." I finally said "I am guessing I already asked you this." She acknowledged that was true. So I just asked "And what did you tell me?" She answered again about the hotel and the weird looks continued. So I apologized and explained like I said above, "I have a rare form of dementia and sometimes can't remember." I don't think I will ever forget her answer again. It is to be a Drury Inn, that is now locked into my memory.
It used to be that I would have been horror stricken I had done something like that, but I have gotten over it and just tell them about my FTD. Of course, those times when I say something and get a flabbergasted look back and cannot remember for the life of me what I said that might have been offensive, I don't say anything at all. I guess that is where the cards for the caregiver to hand them would work well. These instances kind of "freak me out." I usually end up just looking back at them with a puzzled look, because either I don't think what I said should have been offensive or I just cannot figure out what I said at all. Occasions like this literally wear me out. I get angry at myself because I did it again, plus I feel guilty and the strain of trying to figure out just what I did is exhausting.
Sometimes, I think I should get a T-shirt that says "No, I'm not stupid... I have FTD." Then I wouldn't have to say a word, just point to my shirt.
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