Skip to main content

Ask

I have an untenable situation; some of my caregivers do not realize how limited my speech is, how difficult it is to pronounce consonants, and thus limit my vocabulary. Add in my diminished lung capacity, further limiting available vocabulary; three or more syllables are simply not possible. Therefore, I must be concise and to the point. In fact, it is better not be relied upon to provide explanations. And yet, it happens daily and several times per day.

Despite asking for yes or no questions, I get choices. Do you want to begin with soup or eat your entree? I cannot pronounce "soup" nor "entree" Nor can I physically point. Now, imagine the caregiver who plunks themselves down and asks, "What would you like to eat?"

Further, imagine that I'm having an issue...my brief (adult diaper) needs changing. ...My speech generating device is malfunctioning. ...I cannot breathe and need suctioning, or need the cough assist machine, or to be,  simply, repositioned. I just do not have words available Without a speech generating device in front of me.


Comments

Popular posts from this blog

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

Tuesday

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!

Disrespected, Again...

It's 10 pm, I've accomplished nothing to speak of. I watched one movi, "The One I Love", a Twilight Zone-esque story on a couple trying to reconcile. And, one television show, "Running Wild with Bear Grylles" guest starring Channing Tatum. OMG!!! And, I ate some dinner. Tonight was chicken gumbo, chili, cornbread, oatmeal cookies and ice cream. Not much of a day. Nope. I was looking forward to my husband's visit but when he called at 5 pm, he mentioned that he was in Ritzville (by Spokane) working on his trailer with Darryl (the other jerk that took my cruise without me).  I do not begrudge my husband having a life away from me. However, as I keep telling him, I don't appreciate being purposefully left out of loop and disrespected by being left waiting for his disrespectful ass. Any questions?