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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