Write a Note

 

Jim and his uncle used to play music together on a daily basis. One time, our four-year-old son said, “Dad would you sing that song “I’ve gotta write a note?”

Jim looked confused and said, “I don’t think I know that song.”

That didn’t make sense to Eric because he had heard his dad sing the song. He prompted, “Oh, darlin’ if I’m losing you, I’ve gotta write a note.”

Jim smiled and said, “The line is ‘Oh, darlin’ if I’m losing you, I’ve gotta right to know.”

Song lyrics are often misunderstood and before the days of Google, many of us never knew the correct lyrics. In “Bad Moon Arising” some people swore that “there’s a bad moon on the rise” was “there’s a bathroom on the right.” Does that really fit the rest of the song? Yet, I swear that the live version I had, Credence played into the misconception by plainly saying, “there’s a bathroom on the right.” Pinky swear!

Sometimes our brain interprets what we hear in a way that makes sense to us, but may not be the words spoken. When a person has dementia, tone of voice and facial expressions mean more than the words we speak. As the disease progresses, our loved one tries to interpret our actions rather than our words.

Dementia affects each person differently. The care partner will notice that not everyone sees the stark changes in their loved one that they do. I believe that for an entire year after Jim forgot his social security number, his birth date, and right from left, that some of his family thought I had the problem instead of him.

At first, Jim could carry on polite conversation and talk on the phone without giving away his confusion. He could play his guitar and sing several of his songs. As time passed by, his repertoire dwindled to a few songs. The man who had the talent to sing a song after hearing it one time, no longer existed. For about five years into dementia, Jim could still play “Buckaroo” flawlessly after a few false starts.

Jim had aphasia and he rarely spoke. He had always been a prolific reader, but once following the storyline became impossible, he stopped. He watched “To Hell and Back” so many times that we had to replace the tape—twice. Jim watched “Walker Texas Ranger” and recorded it. Well, sometimes he recorded the commercials and not the show.

When Jim was in long-term care, I worked with the aides and nurses who cared for him while I was at my day job. They knew they could call me anytime day or night. I entrusted Jim’s care to others, but I was the one who knew the nuances of his character, could interpret his body language, and his facial expressions.

As Jim’s advocate, I kept the line of communications open with his caregivers. Occasionally, I even had to write a note and pin it to his bulletin board to make sure the day shift saw it. They had a right to know how to provide person centered care.

 

Copyright © March 2025 by L. S. Fisher

http://earlyonset.blogspot.com

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