When You Can’t Find the Words

I thought I made up a word. My husband asked how it was going and why I brought scissors into the bathroom when I was helping my mom on the toilet. I said, "You don’t want to know ... It was terriful."

I was hoping he wouldn’t notice that I mixed up the words. He started laughing. He noticed. I wanted to say it was terrible and awful. Terriful is what came out. I was tired.

Feeling frazzled as a caregiver

This disease has got me flustrated. That’s a fun sort of portmanteau of flustered and frustrated. A football coach my husband used to work with came up with that one. He wanted his players to keep their heads in the game. When you are at your wit’s end and feel frazzled and reactive, you aren’t at your best. I remember one lineman got flustrated and stuck his leg out to stop an opponent. He ended up breaking his leg and getting a penalty for his team for tripping.

I can relate to that. I trip myself up and make shortcuts. Maybe I’m not as patient. Maybe I’m rushed helping her get dressed and pull too hard on her pant cuff to get it over her heel. She doesn’t notice, but I do. Her sloth’s pace can seem extra glacial at times. It’s taking 30 minutes to get her bottom half dressed after her shower. She puts her slippers on. Takes them off. Puts them on again. Takes them off. She does’t want to step on the bare hardwood floor in her bare feet, yet you can’t put joggers on while wearing slippers. It’s bumfuzzling to her. How is that for a word?

We are both at a loss for words

The first symptom of my mom’s Alzheimer’s disease was that she became more at a loss for words. I was telling my aunt about it when we talked, finally, the other day. My husband has been encouraging me to tell her, to confide in her. She is family. She should know. I find it hard.

It's hard to talk about Alzheimer's

Why do I find it hard? I’m not sure. I want to protect her. I don’t want to open her to scrutiny? Pity? So, that’s pride? I want them to remember her the way she has always been. Not this version. Of course it can explain why she hasn’t called. She can’t talk. And I don’t know what to say.

I called my aunt because she had a health scare. Her first question for me was, "How is your mom ... really?" I finally told her. "It’s a bitter irony," I said, "that she can barely come up with a complete sentence, and then only short ones." My mom used to be such a chatter box. There was no off switch. Now, the switch is gone along with a lot of her memories. My aunt is planning a visit, now. I’m glad I finally found the words.

Is your LOWD the only one at a loss for words? When words fail, how do you talk about this disease? Who do you talk to? Who do you need to talk to? So it won’t be so terriful.