I forced myself to take a "day off" today. No working, except to fix an easy dinner. I have been overdoing it, trying to make everyone's Christmas perfect. Now that I have slowed down and am actually taking deep breaths, a lot of things have occurred to me.
I work way too hard at trying to make everyone's Christmas perfect. Decorate the house perfectly. Make everyone's favorite cookies. Shop for the perfect gifts for everyone. Clean the house until it sparkles. (Okay, I may fail on that one, but at least I try!) Wrap the gifts perfectly. Write the perfect notes in everyone's Christmas card, even if it's not very legible anymore. Plan the best meals for the entire week.
Today I started wondering, "Who works at making MY Christmas perfect?" Uh, let me see... The only one who comes close would be my daughter. She is the one who tells me that I can wait to do cookies until she gets here and can help. I don't do that, because I only get her for a week and would rather do other things. She is the one who tells me to stop worrying about cleaning, that it's just her and if anyone else who visits seems worried about it, I should hand them a dust cloth. I kind of listened on that one. I cleaned the kitchen floor yesterday after finishing the last cookies and will do a quick dusting tomorrow. She is also the one who will notice when I start getting too stressed and will work at calming me down.
Today, I stopped to realize how wonderful my best friend is. She came over yesterday to learn how to make baklava and brought her granddaughter. We had a good time, but then a swear word came flying out of my mouth. I immediately apologized to her granddaughter and started to try to explain that I have a brain disease. She stopped me and said that it is okay, that her grandmother had explained this to her before they came over and told her of some things that could happen. Leave it to kids, I had no clue that she knew because she was treating me just like she would anyone else. It is a shame that most of the adults in my life cannot learn this lesson from her.
The past few days, I have been thinking about the importance of research being done for FTD. Someone actually pointed out that, as one with FTD, it is my responsibility to participate in any way I can. It is most likely too late for me, but it just might help future generations. Since my FTD is familial, it is even more important. There is very little research being done for FTD, because the research dollars tend to go to Alzheimer's disease, not other causes of dementia. I have been invited to participate in an FTD research project. Unfortunately, it would be necessary for us to travel four hours to the closest location of the research project. It is a city where we lived nearly 20 years ago, so we still know our way around well enough to manage. We also still have friends and family there whom I would love to visit. I say "unfortunately" because my primary caregiver is needed for this research project as well. That would be my husband who is unwilling to travel. Now, wouldn't that be the perfect gift for me... to simply tell me that he will take me and participate?
I was also reminded, today, that I am tired of having to make all the important decisions or at least being responsible to keep pestering until the important decisions can be made. This makes me feel like a nag and even worse when I get no response. That means I must try again later, and again and again.
FTD makes me tired. Some days I feel what my grandma used to call "bone weary," totally exhausted to the point that even moving is too much effort. Thinking on those days is absolutely out of the question. This makes it extremely difficult for me to take care of the tasks I always took care of before. Making phone calls is nearly impossible for me most days. Despite this, I am seem to be expected to "take care of this" for all sorts of things. I used to do all these things. My husband worked 15-18 hours a day until he retired, so I took on dealing with these things. What I can't seem to get across is that just because I used to do it, does not mean I still can.
We received a letter that our dehumidifier has been recalled. In order to get the replacement, we need to take a picture of the model numbers and other numbers that are on two different stickers located on the back. We must then cut the electrical cord, write our name on the back of the unit and take a picture of that. Then, I must figure out how to upload the pictures and submit with the online form required. Of course, the first words were "You can take care of that with your camera and send it in, can't you?"
How many times is it necessary for me to explain FTD to people, to explain what the 'loss of executive functioning' entails. To me, this task becomes a multitude of tasks and immediately overwhelms me. I will have to make a list of all the steps, do one at a time and check it off the list as I go. Doing a task like this will be all I can do that day as my brain will be worn out. I realize how difficult this concept is for those with a "normal" brain to understand, I do. But, once it has been explained to the same person every few days for several years now, I would hope it would sink in. It has been explained by expert medical personnel, not just me.
I also realized that I must learn to say "NO!" I should be able to say "No, I cannot do this, it is too much for me." Only problem with that is that it would then not get done. We would continue to use the dehumidifier with the fire risk and I would be constantly worrying about whether it is catching on fire today. So, yes, I will do it, but not until next week. It doesn't run in the winter, so there isn't any risk of waiting until after Christmas.
Bottom line of all these rambling thoughts today? Maybe taking a day off is not the best thing for me to do. Either that, or I need to do it more often so I don't have to stress over so many things in one day. Oh, great, now I have to worry about which of these to do!
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