BARRY’S JOURNEY No. 22

Swallowing issues

Quite a few times this summer when I went to visit Barry, I found him unable to swallow. The first time I found him with his lap and chair soaking wet. He could not talk because his mouth was over-flowing with spit. Barry was really scared and breathing so heavily that his face was beet red! As the ability to speak leaves him, I have learned that heavy breathing means he is nervous or upset. Who wouldn’t be nervous? He can’t figure out how to swallow; he is alone in his room with no one to help him.

I was scared and didn’t know what to do. I called a nurse who gently urged Barry to swallow. When he finally did swallow, we calmed him down, then cleaned him up. This has happened a number of times now. Each time, I run for a nurse who takes charge and gets him to swallow. I tend to panic, which is no help at all! Each time I wonder how long he has been sitting there so afraid because the simple act of swallowing is leaving him. But is that it? When I ask his nurses and doctors about this issue, nobody seems to know why it is happening. Here is what I want to know: Is this a normal progression for frontotemporal dementia (FTD)? Do his medications cause this to happen? What’s next? Will he be able to continue eat? If not, what then? Do I need to go there many times a day to be sure he is not sitting afraid in his room with a mouth full of spit?

Today I went to see Barry and he was clean, dozing in his chair. I bought some junky mini cookies from the vending machine. (Mostly because I wanted them.) I gave him a couple of cookies, but he would not swallow them. It made me think that maybe he is not swallowing when he doesn’t like something. Maybe he is trying not to swallow his pills? Because he can’t express what he is thinking and feeling, perhaps he is trying to tell us something in a new way.
But what?