If I am carrying on a conversation with someone and disagree with what they are saying. I will interrupt and tell them they are wrong, stupid or a downright idiot. In today's age of a huge divide in our country over political issues, this can cause a scene and hurt feelings very quickly. It doesn't even have to be something as serious as politics, it can be anything at all, the weather, the time of day anything even if it is trivial and stupid.
For example, people are often telling me how much they like Fall. When someone is saying that, even before they are done, I may be yelling at them about how horrible Fall is and how can they possibly like it. I really do feel that way. I detest Winter and when Fall begins, I know Winter is not far behind. Oh, and I used to love Fall. The problem lies with my lack of impulse control. If I think it, I say it. I don't have the ability to control my words, to speak softly or even to just walk away. People who have known me for a long time often tell me that I have always done that, but it isn't the same thing.
It used to be that I was very free about expressing my opinions and quick to begin debating issues. I certainly admit to that, but this is different. FTD is interrupting you and screaming at you that what you are saying is stupid and then lashing out again when you act angry or hurt. I truly try to fight this. If I hear someone talking about politics, I try to remember to walk away or ask them to change the subject. I can not explain how difficult this is to do.
Conversations are one aspect of this, but there is so much more. Sounds can cause the same kind of reaction. I am not talking about a large amount of noise like we encountered in a restaurant last week where we had to ask for our meals to be packed up to go before I started screaming at everyone to shut up. It can be any noise, especially if there is more than one noise going on at the same time. One of the worst things for me is that my husband has a habit of ripping junk mail into a few pieces before tossing it in the trash. He also rips packaging apart so that it takes up less room in the bag. The noise of this totally overwhelms all of my senses. My brain causes me to literally feel these noises as pain. I must stop whatever I am doing as I am unable to focus on anything. My entire being is trying to cope with the pain that should not be.
It's difficult to explain this. It is as if every nerve that is capable of feeling pain is triggered all at once. I know it is just noise, but my brain interprets it differently since I have FTD. This is accentuated if I have music playing or there is any other source of noise at the same time. The sense of pain is even more acute. When I am causing the noises, my brain seems to understand more clearly that it is just noise from what I am doing.
Whether it be screaming at someone because I disagree with them or at simple noises, I should be able to get over it. Something that took less than a minute to occur should be easy to set aside. This doesn't happen with FTD. The stress of a simple event like this stays and builds in my body and brain. It becomes a chain effect as every frustration through the entire day just builds and builds. At least once during that day, I will explode and run off to my room and hide from everyone and everything. I become unable to do anything constructive, comply with any request or even to think clearly.
So often, caregivers will complain about the person with FTD not cooperating, being disagreeable and nasty. The first thing I usually suggest is to get rid of any noise that you can. Turn off the radio or television and anything else that is making noise. If this isn't possible, take them to the spot where they are comfortable. For me, that is the room that is my bedroom, office and place to chill.
Most people don't stop to think about all the noise pollution around us. We are so used to appliances, that we no longer hear the refrigerator running, the heat or air conditioning, the washer or dryer, or noises filtering in through open windows. To some of us with FTD, these noises can be totally overwhelming and put our entire mind and every nerve on edge. This is enough to make us downright miserable and nearly impossible to try to deal with.
It's not just noise, it can be the temperature or if the air vent is too close and blowing on them. The first thing I do when I get into the car is to close the air vents in front of me. The air blowing on me overwhelms all of my senses. It all boils down to this disease of FTD.
I hate this disease. It is cruel and heartless. It steals so many actions of one's brain, yet doesn't steal the memory. We remain fully aware of what is happening to us, unlike other forms of dementia. An example that pops into my mind is the swallowing issues that are common in FTD. This is usually an issue during late stages of Alzheimer's Disease, but by then it appears that they are not fully aware that it is happening. With FTD, we know it is happening, we know the pain involved, we know how difficult it is to maintain a healthy diet while not being able to swallow correctly or at all. We also know how frightening it is.
I realize this blog entry, and the last few, have been fairly negative. I noticed that it has actually affected the number of those reading the entries. It is so hard to be positive more and more of the time as the disease worsens. I try to hide the crappy stuff from everyone and try my darnedest to find the positive. Some days are harder than others. But, isn't life that the way for all of us.
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