I Have Dementia, But I'm Not Stupid!

This has been a very mixed week.  A lot of things went really well, but others not so much.  I had a couple incidences of people totally dismissing the idea that I have FTD.  As I have posted before, it is difficult for some people to recognize that someone with FTD has dementia.  Just because I can have an intelligent conversation one day, please do not decide that there is nothing wrong with me or imply that I am lazy and should still be working.  Believe me, there are other days when I stumble all over a conversation because I can't think of the right words.  Plus there are many other problems that are not so evident when you see or speak to an FTD sufferer on a limited basis.  We are also good at covering it up so that we don't feel embarrassed.  FTD truly is a disability and I would give most anything to have my abilities back again.  I guess you can probably tell by reading this that someone hurt me deeply this week.  Fortunately, enough positive things happened this week, things that I was proud of myself for being able to succeed in doing, to make up for the bad stuff.

Another frustration that kept cropping up this week is when people block me out when I am talking.  I am guessing it is because they don't think I have anything worth listening to.  Yes, we can tell when you aren't really listening!  Also, if we don't agree on something, please don't assume I am the one who is wrong just because I have FTD.  Please, caregivers, we may take longer to tell you something but that doesn't mean we are stupid!  It makes me so angry when I have just said something within the past couple minutes, then someone asks me a question which makes it clear they were not listening to me because the answer was clearly in what I just said.  Or, when it's one of those days when the words aren't coming and I am speaking slowly, please don't jump in and finish what you think I'm about to say.  Please, just listen to me.

On the other hand, we who suffer from FTD can also make more of an effort to make sure we are being heard.  I am trying to do things such as asking a question to make sure I have been understood or being sure that the person I am speaking to maintains eye contact.  Other times, I just quit talking or walk away.  Probably not the best way to handle the situation, but it's better than trying to remain in the conversation and becoming angry.

My therapist is working with me to get me to, after I calm down, explain to the person what they did and how it made me feel or why I reacted the way I did.  Of course I wouldn't do that with social acquaintances, just with my close circle who act as my caregivers.  I am so very fortunate to have found a therapist who specializes in dementia patients.  I have been seeing her every two weeks for about two months now, and it has really made a difference.  I am sure there are many other therapists out there who specialize in this area as well, but I am so very happy that I am lucky enough to have one in our little town.