Aphasia – When Words Fail

People pay attention when a celebrity has been diagnosed with dementia. Earlier this month, we learned that Bruce Willis has been diagnosed with frontotemporal dementia. This diagnosis did not surprise me since last year Bruce stepped away from acting because of aphasia.

If you are unfamiliar with the term, aphasia affects speech and the ability to read or write. Communication skills are necessary in almost all aspects of employment, and would be essential to read movie scripts and to deliver the lines with conviction.

In 2020, the directors of a Bruce Willis action film cut his dialogue by five pages and removed all monologs. His inability to remember his dialogue resulted in someone feeding Bruce lines through an earpiece.

One of Jim’s first noticeable symptoms of dementia was aphasia. He could still speak words, but his sentences were vague and often required interpretation. I had to take cues from his actions. He often said the opposite of what he meant. For example, he might say he was hot, but would be shivering from cold. Jim began to speak in repetitive phrases: “Right here, but I can’t find it” or “I have no idea” were two of his favorites. As his dementia progressed, Jim became mostly silent and seldom spoke.

One of the saddest losses for me was the intimate conversations that Jim and I had always enjoyed. We shared our deepest thoughts, hopes, beliefs, and dreams with each other. The best part of waking up was a cup of coffee and conversation.

Our quiet time was when we settled down for the night. Jim was an avid reader, and he and I both read at bedtime. After he read every Louis L’Amour novel, we made weekly trips to the bookstore so that he could add to his collection of Star Trek books. Jim continued to turn the pages of his books, but I noticed that he began to buy duplicate books. I realized that he was not able to follow the storyline and would pick up a different copy of the book he had “read” the week before. It was the same with TV shows. He couldn’t follow the plot of a TV show.

Aphasia is caused when a loss of blood flow causes brain cell death or damage in the part of the brain that controls language. Although Jim’s and Bruce Willis’ aphasia was brought on by dementia, the most common cause of aphasia is from a stroke.

  I believe that Jim’s aphasia was global, which caused severe difficulty with his ability to speak or comprehend language. He had trouble understanding as well as speaking. I used a lot of gestures and pointing to reinforce what I was saying. I learned to use simple sentences and never offer more than one instruction at a time. If I ever gave more than one instruction, he would only react to the second.

Jim understood body language, tone of voice, and facial expressions much more than the spoken words. Of course, the best communication of all was the touch of a hand, words of love, and smiles…lots of smiles.

 

Copyright © February 2023 by L.S. Fisher

http://earlyonset.blogspot.com

That Faraway Place (Valentine's Day 2005)

The velvet soft touch of a single red rose reminded me of the man who had been my Valentine for thirty-five years. The scent of Old Spice transported my mind to the hot summer day when I met a broad-shouldered boy with curly blond hair.

Jim created magic with his Fender guitar, and his smooth, rich voice wooed me with romantic love songs. By summer’s end, our long, intimate conversations and physical attraction created a special bond between us, and ensured that ours was not merely a summer romance.

Our romantic love evolved into a deeper emotion as we settled down to married life and parenthood. Jim’s music, our closeness, and family became components of our daily existence. We bonded into one being, and Jim frequently said, “I know you better than you know yourself.”  The truth of his words was proven as he became my sounding board for all life’s major decisions.

Early in the disease, our romantic love remained intact as we united to cope with the devastating diagnoses. As the dementia progressed, romance gradually disappeared, and I adapted to my shifting role in our relationship. Jim began a downward spiral toward a childlike dependence on me, coupled with a trust that I would protect him.

The stress had taken a toll on me. If I was at home, I was dealing with Jim’s outbursts of anger, or moments of total confusion. When I was at work, the caregiver would call when Jim was out of control, and I would return home to manage him. Jim began to wander off, and I became adept at finding him. Eventually, I realized he needed to be in a safe place where more than one person could provide his care.

Dementia laid waste to my husband’s brain and the disease caused an underlying layer of grief that permeated my innermost emotions. For the past ten years, the erosion of Jim—husband, father, grandfather, son, brother—relentlessly stole him from his family’s grasp.

Jim began to exist on a different level, another plane of existence, than the rest of the world. He seemed to be in a faraway place, occasionally glancing back to recognize those of us he had left behind.

I walked into his room at the nursing home on Valentine’s Day. I hugged him, closed my eyes, smelled his Old Spice cologne, and was once again holding a broad-shouldered, blond-haired boy on a hot summer day. Perhaps, we were together in the same faraway place on that special day, and he remembered me, and knew I was still his Valentine.

Copyright © February 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Note: Jim mailed the Valentine to me from Vietnam in 1970 in an envelope with postage marked "Free."

Super Sunday, Super Fan

 

In 1970, Jim and I lived in Manhattan, Kansas, while he finished his three-year commitment to Uncle Sam. We lived in an apartment on Humboldt Street a block off Poyntz Avenue. Every Sunday during football season, Jim turned on our small black and white TV and tuned into the football games, preferably to watch the Chiefs.

Jim came from a family that never watched sports so for the first few games he was a little puzzled about the rules of the games. “Why do the ‘downs’ start all over after a few plays?” he mumbled. Jim was a smart guy, and it wasn’t long before he had everything figured out and he was hooked on football. Jim became a Super Fan and every year, he cheered them on to victory, keeping the faith that they would play in the Super Bowl.

Lenny Dawson had just led the Chief’s to Super Bowl IV victory in January 1970 while Jim was in Vietnam. Jim was well aware of that win and had a personal interest in the Chiefs because Lenny Dawson volunteered at the Boy’s Club where Jim boxed.

When our kids were little and we still had our tiny black and white TV with three channels. The movie of the week was on Monday nights, but so was football. I would complain, but most of the time we watched football.

Eventually, I learned enough about the game to enjoy it, but the Chiefs were the only team I cared to watch. Whether the Chiefs’ had a down year or an up year, Jim never wavered. They were his favorite team.

After spending our summer vacations in Colorado, the Denver Broncos became his second favorite team. When the Broncos played the Chiefs, we always rooted for the Chiefs. One game we watched, the Chiefs were leading 19-6 with five minutes to play. As the game neared the two-minute warning, the Denver fans left Mile High Stadium in droves. In the last two minutes of play, John Elway threw two touchdown passes for a 20-19 win. Needless to say, the Denver fans were not happy to miss the excitement and we were not happy with the outcome.

Jim only went to Arrowhead Stadium one time to watch the Chiefs play. His friend Bill Wiser treated him to a game. The freezing rain didn’t interfere at all with the excitement of being in Arrowhead. I don’t remember whether the Chiefs won that game, but I know Jim was loud and proud of his Chiefs.

When Jim was in the nursing home, the staff always turned his TV to the football games. His eyes would be on the game, but he never reacted. Gone were the days when he outwardly cheered his Chiefs to victory, but I’m sure that inwardly, he was following the game.

I always hoped that the Chiefs would make it to the Super Bowl again during Jim’s lifetime, but it didn’t happen. Finally, it was on my bucket list that the Chiefs would make it to the Super Bowl during my lifetime. Now, here it is again, another Super Bowl with the Chiefs playing. I can hardly wait. Today, I’m wearing a Chiefs shirt that once belonged to Jim, the Super Fan. The lettering is a little cracked, but the colors are bright.

Jim proudly wore his Chiefs’ shirts no matter what kind of season they were having. In his heart, the Chiefs always won.

Copyright © February 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ