Embarrassment

Obviously, FTD is a horrible illness and extremely difficult with which to deal, whether you have the disease or are the care partner for someone who has it. It truly can become a living hell.

Accepting the disease is very difficult for some, which can make it much harder for the caregiver. Honestly, though, sometimes I envy those who don't recognize that they have FTD or what they are doing because of it. I am sure that those in this circumstance, especially the caregiver, have a multitude of problems that the rest of us with the disease do not. I still wish I was like them sometimes.

Quite often, I think and hear others with FTD say that those with Alzheimer's have it better than we do because they do not know what is happening. This stage of not knowing does not usually affect those with FTD until the very end stages. There are, of course, exceptions. No two cases of FTD are the same. With the number of diseases included under the FTD umbrella and the number of possible symptoms for each disease, there are a multitude of combinations. Doesn't it seem pathetic to be jealous of someone with Alzheimer's?

Most days, I am extremely thankful that I am aware that I have the disease so that I can compensate for it as well as I can and live a good life in spite of FTD. There are so many ways that I do this. I know I cannot handle crowds, so I avoid crowded places. I know that family gatherings or other events can quickly lead to sensory overload, so I make sure I stay close to an exit in case I need to step out. Or, I ask the host if there is a quiet place I can retreat to if it becomes too much.

There are only so many circumstances that I can prepare for like this. I can never predict, for certain, how and when I will react to my surroundings. Once sensory overload hits me, I often am unable to cope at all. To me, sensory overload is when there are too many stimuli surrounding me. It can be too many people, too many sounds or loud sounds, too many colors, too much activity, too many things to choose from, too many people touching me or anything that affects any of the human senses.

When I get to the point of sensory overload, it is nearly impossible to cope. I can no longer focus on anything. It does not occur to me that I am okay, and that I just need to leave or step away. My world becomes a blur or a big black hole. I can literally not focus my vision, ignore sounds, people or anything else. I also cannot hear anyone trying to help me. I am unable to do anything except panic. I need someone to step in and act for me, even if I cannot respond.

After instances like this, I become hugely embarrassed. Logically, I know that I should not be because it is the disease that causes me to do it. Also logically, though, is the knowledge that most of the people who witness this have no clue, either to the fact that I have FTD or how the disease affects me. I can not help but be reluctant to see these people again. I become withdrawn when I am around them for fear of what they are thinking of me. It doesn't help that FTD often adds in a bit of paranoia. In many cases, though, it works out just fine, because they avoid me as much as they can.

It is not only people I know that can cause me to be embarrassed. One of the times that is always in my mind is when  my sister and I had gone to the little theater we are lucky to have in our town. We had to park a couple blocks away. After the performance, we headed toward the car. The first block is uphill plus the sidewalk is in need of repair. I had not yet begun to use a cane and I was having difficulty walking. I was stumbling and meandering from side to side. Behind me, I heard "Come on, let's get around this drunk!" I was tremendously embarrassed even though I did not know these people. If they thought that about me, how many others were as well? I have not been back to the theater since then. The only good part was that I finally admitted I had to start using a cane. If for no other reason, so other people would recognize that perhaps there was a good reason for my difficulty walking.

I have written many times about people not believing there is anything wrong with me. This is true for just about every person I know who has FTD. Because we still have out memory, they don't believe we have dementia. To them, dementia equals loss of memory which equals Alzheimer's. When this happens, it can be infuriating. It can also be embarrassing. After all, if they don't believe I have a disease, what do they think is causing all my symptoms? Do they think I am drunk? Do they think I am faking? Do they think I am inventing this disease to get out of doing things? Why in the world would anyone think that someone would fake having dementia?  I know I should dismiss them and their ignorance, but that is really difficult to do. Instead, I am left with a huge amount of embarrassment.

I have been embarrassed enough times, that I am often reluctant to go out anywhere. I have always striven to be proud of myself. In fact, my maiden name is the German word for pride. I was raised to believe that I was no better than anyone I ever encountered, but that I was no worse either. How many instances of seeing people turning their heads, looking at me questioningly or with looks of disgust on their faces, can I deal with before it causes reluctance to venture out into the world? How many looks, of disbelief or disgust, can I handle until I refuse to talk about having FTD, knowing they won't believe me anyway.

I cannot tell you how many times, after explaining to someone that I have FTD, I have just stood there wanting to cry from frustration and/or embarrassment after they have not believed?  If FTD allowed me to cry, I would be definitely standing there crying. I may have used this example before, but it is always in the back of my mind. One day, in our church parking lot, during a festival, a member asked me why I was using my cane. I explained that I had FTD, a form of dementia, and that it caused me to have difficulty walking. He huffed and said, "Oh, I thought maybe your cancer was back." then, as he was turning his back to me, he said "You know if you think you have dementia, you don't!" and it was not said kindly. This was one of the pillars of our church and we were surrounded by many others. We left immediately after this. Some have suggested to me that I can still come to church, that I can sit off to the side where there are seats right by a door. I could try that, but if I did something inappropriate, which is quite probable, or had to leave because the walls were closing in, I know I could not handle the embarrassment again.

There is an answer to all this. FTD needs to have as much research and publicity as Alzheimer's does. It should also receive its fair share of available research dollars. People need to know about FTD and its symptoms. Doctors need to know. The press needs to know and to publish information about it.

I do my best to help. I spread the word at local health-related events. I speak about it to anyone who will listen. Out of all these events, only one person has caused me to feel embarrassed by the way she dismissed me and my information. Her comment inferred that it wasn't really an illness and that she already knew everything she needed to. I'm not sure why she was standing in front of my booth. Perhaps she just wanted a free piece of candy I was offering people?

To all the others reading this who have FTD and to their care partners, please try to not be embarrassed when ignorant people act ignorantly. I will be working on it myself.