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Lewy body dementia: a journey through hallucinations and imagination

Jodi L. Lyons
Conditions
June 20, 2024
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An excerpt from The Sea Glass Epidemic.

… It was at this time the mouse asked Beth if he could bring over some friends. Naturally, Beth assumed the mouse was talking about other mice. Much to her surprise, the mouse ran into the kitchen, walked under the doorway into the laundry room, and disappeared behind the water heater.

“Be right back,” he called over his shoulder. A few minutes later, the mouse popped out from behind the water heater with a trail of diminutive people carrying luggage. They looked like average people, except they were the size of a mouse, and were purple. There were at least two dozen purple people, dressed in wildly colorful clothing with mismatched patterns, carrying a variety of objects. Some were pushing wheelbarrows filled with pots and pans and camp stoves, some were carrying suitcases, some had the fancy four-wheeled suitcases Beth had always admired, still others had what looked like pet carriers, and everyone had backpacks. While they were colorful, cheerful, and incredibly grateful to Beth for letting them in, she couldn’t help but think they looked like refugees. She had the impression they literally were carrying everything they owned with them. She half-expected to see a covered wagon following them. As they walked through the kitchen and into the dining room, some people in the group spotted the boy and girl statues. As always, the girl was holding a bowl of candy, and the boy was holding a bottle of wine. They stopped in their tracks, turned as one to face the boy and girl, smiled, and bowed down before them.

Much to Beth’s surprise, the boy and girl became animated and made motions for the diminutive people to stand up and stop bowing. “You are welcome here, and you’re safe,” they said, echoing the words Beth had spoken to them earlier. And then, the boy and girl shrunk down to be the size of the diminutive people and led them into the sunroom. There, they introduced them to the fox who smiled widely as he said hello. At first, they were frightened because when he smiled, they could see his teeth, and they knew foxes usually eat mice. They were afraid the fox might be looking at them as a meal because they were mouse size. But the fox set their minds at ease and said he viewed them as roommates and not as dinner. The mouse and the boy and girl assured them this was the case, and they were safe.

… “Don’t worry about remembering their names,” the mouse said. “They can’t remember their own names.” He explained further, “They all have their given names which is what they told you. Then, they all have their nicknames which they use with each other. And then, the parents use different names for the children. I’ve found they’ll answer to pretty much anything.” He continued, “Watch the first time one of the mothers needs to reprimand one of her children. She’ll run through a list of five or six names and then say something like ‘You know which one of you I mean!’ and they will know.”

Beth smiled, because she had many friends who when faced with that situation would run through all of the names of all of their children, the dog, and the cat to try to remember the name of the one they were trying to reprimand. Apparently, this was a cross-cultural phenomenon …

… As she returned to the conversation in the sunroom, the discussion stopped abruptly as the participants, including the fox and the mouse, looked behind Beth with their mouths agape. There, walking from the dining room through the living room was Einstein and the Mad Hatter. They were about four inches high and were stretching as they walked. It was like they were shaking tension out of their arms, shoulders, and legs.

“We’ve been living on the side of the refrigerator for a year,” Einstein explained. “We were afraid to let anyone know we were alive, so we pretended to be refrigerator magnets. But we know it’s safe, and we are sore!” Addressing the diminutive people, the Mad Hatter asked if it was okay if he and Einstein joined them in their new home under the bed …

This book is fictional but based in science (although the author has taken some artistic license). The main character, Beth, suffers from Lewy body dementia. The narrative delves into the perceptions of reality, questioning the boundaries between imagination and hallucination, dreams and reality, and belief and delusion.

Throughout the book, there are examples of symptoms commonly found in people with Lewy body dementia. One such example is George, the character who always stands by the door. In reality, George is a coat rack with a hat on top, overcoat hanging on it, and an umbrella in the attached umbrella stand. Beth experiences a visual misperception and identifies the coat rack as a person. Another example is the character of the fox. The fox is a metal plant stand in which one would place a potted plant. It is shaped like a colorful fox, but there is a large hole in the back where the pot would be inserted, and it most certainly is not alive. The bear in Beth’s bedroom is a pile of clean laundry. It is rotund, it does resemble a bear, but it is not alive, and it is not a bear …

Additionally, Beth suffers from REM sleep disturbance — typical of somebody with Lewy body dementia. She experiences exceedingly vivid dreams, described throughout the book, and often acts them out in her sleep.

The squirrels are real. They happily eat every annual plant they can get their little paws on. Fortunately, they do not come into the house. The mouse also is real. Its primary contribution to this book was to scurry around the house evading traps until it decided to vacate the premises.

Jodi L. Lyons is an eldercare expert and author of The Sea Glass Epidemic.

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