FTD Is A Thief

FTD is a horrible disease, there is no doubt about it. How do you decide what is the worst aspect of FTD. Today, the worst thing about FTD, to me anyway, is that it is a thief. It eventually steals everything, including our lives.

This is Halloween week. Here where I live, Trick or Treating for the children. Yes, I know it isn't Halloween yet. I was flabbergasted when we moved here and learned that it was always on the Thursday before Halloween, even if Halloween is on a Thursday. The children still enjoy it, I am sure, but what do they do on October 31st, I wonder?

Halloween, years ago, was a holiday that I looked forward to for months. I decorated my house, inside and out. I baked cookies and made caramel apples. I sewed my daughter's  costumes. We made her into a Sleeping Beauty, a Rainbow Brite Doll, a Karate Kid and so many more. Sometimes, I could con her dad into taking her from house to house so that I could stay home to greet all the other kids. I loved seeing and talking with every one of them. In some of the places we have lived, we would have over 100 visitors. I was in Halloween Heaven!

Then FTD entered my life and ruined it for me. It has worsened every year to the point that last night, I didn't even want to open the door. Someone would knock and I cringed. I did succeed in opening the door and handing out candy, but I could not care less about how they were dressed, how cute or how scary they were. I was unable to communicate with the kids at all, just handed them a handful of candy. I had not even put up decorations nor carved pumpkins to put on the porch. 

One young family came to the door... mom, dad and a little girl dressed up like a lion. I will say she looked adorable, especially her lion's mane. No scary lion was she! We had not met these parents before because they recently moved into a house at the other end of the street. They introduced themselves as Zach and whatever his wife's name was. I only remember the Zach part because I knew that was the name of my niece's cousin who I knew had moved into the neighborhood recently. So I asked him if that was his last name. They kept talking, talking and talking about themselves, their house, their family and even told us about the trip they made to Florida to visit my niece, his cousin. I was expected to remember all the people they talked about and follow their stories. Obviously, I could not even remember the wife's name!

I was stressed to my absolute limit. I wanted to close the door, lock it, turn off the lights and cry. It was too much, the little girl was squirming and trying to talk to her parents at the same time they were talking to me. The parents were telling me way more information than I could comprehend. We probably only chatted for ten or fifteen minutes, but it was too much after the first minute. Just answering the door and handing out candy to all the kids was too much for me. I wanted to slam the door in their faces. I wanted to scream at everyone to just go away. 

The pathetic part of this is that we only had three trick-or-treaters the entire time. Yes, only three yet it proved too much for me. I spent the entire time getting more and more stressed. I managed to have it totally quiet in the house but that only helped a little because I was on edge, fearing another knock. Kids are only allowed two hours of trick or treating here which doesn't seem that long, but after the first hour, I was done in. I put a basket of candy out on the porch and locked the door. My fists were clenched, my jaw was aching from clenching, to the point that I still had a headache the next day and I was rocking back and forth trying to comfort myself. No candy was taken from the bowl, so I don't think there were anymore visitors which helps me feel a little bit better that I had not shut anyone out.

Three kids and three sets of parents. Who would have thought that FTD would turn me into such a state that I could not enjoy just that little bit of the holiday I used to love. Once I had calmed down, I was angry! I hope and pray that I never reach the same point with Christmas. I am afraid that would totally destroy me. 

All I could think was how much I hated FTD and what it does to us, how it can steal all the pleasures from our lives. I am sure that everyone with FTD would be able to create a long list of what pleasures that the disease has robbed them of, how many events they have had to miss and things they can no longer do or enjoy. 

So many with FTD had so many things stolen, such as the hobbies they used to enjoy, going for walks and so many other things that we used to take for granted. I get angry when I try to watch a movie and have to walk away half way through because I can not focus on anything for more that 45 minutes or so. If it were not for DVR's, I would not be able to watch TV shows either.  If I watch a 60 minute television program and skip all the commercials, it ends up being right at my limit. Some days, though, I cannot even concentrate for that long. I certainly cannot watch more than one a day.

I know I have complained before about the resentment I have toward FTD because I cannot read like I used to. I am actually fortunate that I can read at all, but I can only read novels with no complex plots, too many characters or too much of anything. The good part is that I save a lot of money on e-books because after three months or so, I can reread them without remembering the plots. The books I read are probably at a junior high level. That really hurts.

I hate that FTD has stolen my artistic abilities. I have probably complained about this before as well. I used to be an artist, an award winning artist in fact. I used to make money by decorating cakes, even did a few wedding cakes. I did one about six months ago and it wasn't even at the level I could do before I learned how to decorate cakes. 

I really hate that FTD has stolen my ability to interact with others. I cannot carry on conversations with people I don't know or more than one or two people at a time. I get too stressed and actually have had panic attacks. If you have seen me at the AFTD conference, you have seen me how I used to be. You couldn't shut me up whether you were a close friend or a stranger. At the conference, I know I will not be judged if I say the wrong thing or sound like an idiot or take to long to get my words out. It is such a non-threatening and welcoming environment that I talk to everyone practically non-stop. My daughter is amazed at the difference in me between the conferences and my every day life.

I hate that FTD has stolen my ability to look normal, to not stumble and stagger when walking, making people think I have been drinking. One time, I was entering a bar/restaurant when I fell right there in the doorway. Several people came running to help, asking if I was okay, could they do anything. Embarrassed, I finally got myself up and tried again to walk into the building. I fell again and ended up sprawled all over the floor. That time, no one came to help, they looked at me like I was a drunk. When I finally got up, I realized there was just a tiny step, probably less than one inch. With my loss of peripheral vision, I could not see that little rise and that is that was what was tripping me.

I cannot go without mentioning the absolute anger and frustration most FTDers have when we are told, or realize on our own, that we can no longer drive. We lose our freedom and  independence. We lose the privilege of just picking up and going out to eat, shopping, visiting, etc. 

I hate FTD because it has stolen some of the appreciation others had for me. It is so very frustrating that this is almost an invisible disease. People look at us and think we are still the same person we were before. Then don't see any physical symptoms. Perhaps if FTD game us a big flashing sign on the top of our heads proclaiming the disease, they might recognize that we are fighting a disease. Probably not though, they would just look and think we were trying to get attention.

Bottom line, I hate FTD, with a passion. Hate it, hate it, hate it. It has stolen so many things in life that I used to take for granted and never dreamed that I would end up having those abilities stolen from me. 

Finally, back to the holiday issue. To caregivers and those who love someone with FTD, please talk to them and ask what you can do to help the holidays be more tolerable for them. If my husband were capable, I would have asked him to answer the door. There are probably things you can do to help your loved one cope with events and holidays. It is also a good idea to watch them for signs of stress and discomfort before it becomes too much to handle. Like we often say, please try to step into their world and look at things the way they do. See how FTD limits them and their enjoyment and what you can do to help. Everyone deserves some enjoyment in their life, even those of us with FTD.