Frontotemporal dementia is the disintegration of the frontal and temporal lobes of the brain. These are the centers for language, movement, and memory. This is the type of dementia Mom has. From the beginning, before any of us knew there was anything wrong, her language was affected. She had trouble finding the right word. She repeated the same stories over and over. All things which happen as we age, but the progression with FTD is more severe and debilitating.
Mom first recognized her inability to find the right word, years ago. We discussed it, because it was so similar to what I experienced with chemo brain after cancer. I encouraged her to give herself some wait time, so her brain could find the word. Or to try to find a synonym since, at that point, she still knew what she was trying to say. These are strategies I used when my brain wasn’t working properly after cancer treatments. When the brain is damaged, processing time slows dramatically because of chemicals or injury or disease. Unfortunately, I am familiar with how all three of those effect the brain.
At the beginning, Mom knew something was wrong, but the doctor said it was age. It soon became clear it was more than that. Before long, Mom didn’t think anything was wrong anymore, but the rest of us knew there was. Her memory declined rapidly, she lost her ability to follow a conversation, to write, to read, or to speak in understandable ways.
One of the most noticeable indicators of her condition is word salad, which is defined as a confused or unintelligible mixture of seemingly random words and phrases. Word salad is Mom’s way of communicating now. The most endearing thing about this is you can tell she feels she is a part of the conversation, even though you cannot understand what she is saying.
When we go to lunch, she listens to us talk with Dad. If you ask her a question she will try to answer, but you will not understand what she is saying. There is no way to be sure if she even understood what you said. Occasionally, her eyes will connect and it appears she understood, but her response is word salad. At first this was alarming to us, as you can imagine, but we have adapted to the fact it is her way of communicating. Now, it is kind of charming. It is her way to connect.
We will be talking, and she will chime in as if she is in the conversation with us. She doesn’t understand what we say, but she tries to contribute. This is because she understands the rhythm of language. She has muscle memory enough to know conversations go back and forth. For example, we might be talking about the weather and she will say, “I’ve done that. Good. Good. Good. Over there. This and this. Like that. There is pretty. Pretty. Some of them. Yes.” And then she will laugh as if what she said makes perfect sense. We have gotten to be experts and filling in the blanks to make her feel as if we understood her. Like this, “Yes the weather is good. The flowers outside are pretty. I like them, too,” as we point out the window.
If you greet her and ask her, ‘How are you today?’ She will say ‘good’ or ‘fine’ and smile at you. Sometimes she will say “I don’t know’ which is an honest moment. Mostly, she gives one-word answers in social situations. Outside of that, word salad is her norm. It includes English words, stuttering, and some babble, all mixed together.
The thing I like most about word salad is that it shows she is engaged to some degree. She has her blank stare days, where not much is going on. However, when Dad comes in the room, she brightens up. He is like her music. When we are all together she smiles and attempts to participate. You can tell she feels comfortable with him around and is more willing to engage in attempting to talk even if we don’t understand her and she doesn’t understand us. It is a sweet part of this hard journey we are on. So much different from how she used to communicate, yet, still she is attempting to be with us as best she can. As long as she is serving it up, I will happily take word salad anytime.