Communication is one of the most important things in life. How would we learn anything? No communication would mean no books, no computers, no phones, no hearing, no speaking, no writing letters. You've got it, it's a pretty simple concept to grasp, but it would not be a simple concept to live without.
Communication with FTD can be difficult. Aphasia is a symptom of several types of FTD. Aphasia steals the ability to understand words, but usually still allows at least close to normal speech. Dysarthria is another language disorder that impairs or takes away the ability to speak properly. This can include anything from slurring to no verbalization at all. There are other forms of FTD whose primary symptoms are not speech related. However, all forms of FTD can lead to language and comprehension difficulties and make communication extremely difficult.
I do have some speech issues. I stutter quite a bit. I often get stuck on the first syllable of what I am trying to say. If you are old enough to remember records, it is like when the needle would get stuck on the record. I realize it is happening, but have difficulty stopping. When I do stop, I can pause, change the first word and get the thought out. Irritating and puts people off, but not serious.
It seems that many, if not all, with FTD eventually lose abilities to communicate, even if their primary diagnosis was not that of Aphasia. This makes communication between one with FTD and their care partner difficult.
These speech issues are not the only barrier to communication. Some of us, myself includes, attempt to cover up the symptoms of the disease. I cannot speak for others here, but for myself, I think it is an intense desire to be viewed as normal as possible. Another issue, for me, is the inability to clearly explain what the disease does to me and the limitations that it puts on me.
I keep telling others, especially my husband, that I can no longer do the things I used to be able to do. I will try to explain that I can not do the household chores that I used to. It bothers me that my house is not as clean as I like and as I used to keep it. My husband, being a man, does not understand this. Yes, I know some men are just as serious about keeping things neat and clean, but not mine. The other problem with this is that he has no clue as to how much energy it actually takes to clean a house. Plus, this exhaustion, particularly the mental exhaustion is extremely difficult for me to explain.
Yesterday, I gave my bathroom a good cleaning and dry mopped the wooden floors in the hallway and a couple rooms. I was exhausted. The physical exhaustion is not the worst part. It is the mental exhaustion. Figuring out how to clean everything, even trying to remember what products to use and where they are located, is exhausting. I discovered I was out of the cleaning product I usually use to clean our bathrooms. It took me at least 20 minutes of staring at my cleaning supplies to decide what I could substitute. Mental exhaustion is even more debilitating that physical exhaustion, at least to me.
When it came to dinnertime, the last thing I wanted was to attempt to cook something. Instead of admitting that this little bit of cleaning wore me out and I didn't trust myself to cook and to make it edible, I simply said I didn't feel like cooking. I suggested several carry out options, but my husband balked at them. Being the stubborn cuss that I am, I said "Fine, I'll figure out something." I made Philly cheesesteak sandwiches, something I often make. Not too difficult and not too much mess, but certainly more than I wanted to deal with. I substituted flatbread for the rolls and it ended up tough. It was obvious that he was not thrilled with the meal. I have always taken much pride in my cooking talents. Cooking and baking were two of my favorite things pre-FTD.
His displeasure hurt angered me something fierce, but I kept it in. I even apologized for the fact that he did not seem to enjoy the meal. Great way to communicate, right? I let it stew inside me for hours. I could not sleep. I finally got up at 3:30 a.m. and wrote him a note explaining how it had made me feel. If I had tried to explain this to him verbally, it would have been a disaster. When I am upset, I stutter even more. I would not have gotten my thoughts out properly. Yet it was important that I got them out. It was an opportunity to provide him an example of what I mean when I say that I just cannot do it all anymore.
My psychologist is always working with me to improve communication, but I keep falling back into my old habits of not communicating. This morning, when I walked into the kitchen for coffee, I was greeted with a huge apology. Later, I was cleaning the kitchen floor and when I was more than 3/4's done, he asked if he could help. Wait for it... I actually got the word "no" out, then stopped and said, "But if you would run the vacuum in the family room and the bedrooms, that would be awesome." He did it, no grumbling and suggested that I ask him more often. It's a step in the right direction. I was so proud of myself for communicating my need and admitting I need help. I was very appreciative that he communicated his willingness to help. My instinct, though, is to wonder how long it will last. I am doubtful, but maybe it will, if I can learn to say what I need.
In the meantime, I am still looking to hire someone to clean my house. He has physical limitations as well and I think it would take a huge load off both of us. Hopefully, I can communicate to him how important I think this option is and... I hope I can communicate with the cleaner what I need.
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