I have said it before. Huntington's Disease affect each individual on a different level. It can cause impulsive actions, paranoia or even OCD tendencies that cannot be controlled. To live with the person that has the disease, you have to have an understanding of this fact. That doesn't mean that you always have to like it and that you won't get frustrated from time to time with their actions or reactions to a situation. That is human nature. What it does mean is that you will have to develop an understanding of the person and know what their limits and boundaries are so that you do not intentionally push those buttons.
I will share a story of what recently transpired between Robert and his brother, Bill. I found it kind of funny but Robert and Bill didn't quite see it that way. See, Robert was helping Bill clean up his room and bathroom and clothing. Robert wanted to put bleach in the load of all white clothing that he was about to wash of Bill's. Bill didn't like that. He kept saying over and over "I can't take this. I can't handle it. Please don't do it" He was almost in tears at the thought that Robert was going to bleach his clothes. I am not sure what the big deal was about the bleach, but it was causing extreme panic in Bill to the point that he walked out of the house rather than watch Robert bleach this load of clothes.
Now, most of us have used bleach on clothes and know that from time to time, it needs to be done. It is a fact of life and one that I whole heartily support from time to time. But, by the same token, I also understand that some people may feel differently about it. And for a person dealing with the demon of Huntington's Disease in their body, the idea of bleach might send them in to full blown panic mode for whatever reason. They may not be able to fully understand or articulate the feelings themselves so it is going to be even harder for someone else to understand it. So, we have to be understanding of this turmoil that is going on inside them and recognize that certain things may cause the person to freak out. Even over something as simple as putting some bleach in a load of clothes.
It may not always be easy. There may be times that you react like Robert did. He felt Bill was overreacting and didn't understand it. Robert was having a natural reaction to the whole scenario and felt that Bill was freaking out over nothing. I thought the same thing as an observer of it all. I think most of us would fill that way. I wanted to tell Bill he was overreacting, too. In fact, I told Robert that it was all a bit ridiculous. The clothes needed to be bleached. What is the big deal?
However, after a bit, I stepped back and thought about it. For Bill, he couldn't really say what it was. Just that he didn't want bleach used on his clothes. It was really freaking him out. And it might have been a reason that he couldn't fully explain or rationalize, either. It was just the way he felt about it at that moment. And it was traumatic for him. As a person living with the affected person, we have to step back and understand the feelings this person is having. We may not agree with them, but to this person, these feelings are real and serious. So, we have a responsibility to the person to accept the feelings, even when we cannot fully understand them. Pushing back and telling a person they are overreacting can only make this situation worse for them.
All I can do is pray that God gives me the strength and patience to deal with it when Robert starts freaking out because I want to bleach some of his clothes.
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