“Learning Spanish” – a Lewy body dementia caregiver’s story

This is a beautiful story written by Lyn Preuit, whose wife Wendy had Lewy body dementia (confirmed through brain donation).  Lyn is a long-time member of our local support group.  The story is captures part of Lyn’s caregiving journey and some of Wendy’s LBD symptoms, such as dementia, difficulty concentrating and multi-tasking, speech problems, and swallowing issues.

Robin

Learning Spanish

He didn’t start the lessons because of a desire to learn Spanish. He did, however, enjoy the Spanish lessons and had continued them for two years. Without doubt, Spanish was a useful second language in the US, not to mention in Baja where he frequently went in the winter. Despite those obvious benefits, he was learning Spanish because of his wife.

It would be misleading to say he was learning to speak Spanish because of his wife. He didn’t speak Spanish with his wife. Although she had spoken Spanish much better than he, she no longer spoke Spanish to him. Nonetheless, he started Spanish lessons because of his wife.

He used an app on his phone for Spanish lessons. That made the lessons very convenient. He found the lessons to be quite enjoyable and he seemed to be progressing reasonably. He had considered writing to the company that made the app, to tell them how well it worked. Not in terms of the convenience, or his enjoyment of the lessons, or even how much he had learned. He had considered writing to thank them because his wife was eating much better since he had started the lessons.

He became aware of the Spanish language app from a business news article he was reading on his phone. He read the news at dinner after he had finished eating because his wife was more likely to eat her dinner if he sat with her until she was done. That took a long time. Unfortunately, his presence was not very effective when his attention was on his phone. He had decided he had to break his habit of reading news as she finished eating but couldn’t resist the one last article that happened to be about language learning apps.

He brought his wife’s attention back to the dinner plate in front of her. Then he checked the website of one of the apps mentioned in the article he just read. He was pleased to discover he could download the app and start lessons without making a commitment. When he started a lesson, just to see how it worked, he was surprised that his wife, in her very soft voice, helped him with it. As she helped him with the Spanish lesson, he was greatly pleased to see her continue eating.

As the devastation of his wife by Parkinson’s disease progressed, the impairment of her ability to move became minor compared to the ever-increasing impairment of dementia. But the term, dementia, is misleading. Nearly everyone has some knowledge of Alzheimer’s dementia in which loss of memory is most noticeable. Parkinson’s disease dementia is much different.

His wife’s memory was generally not affected at all by the disease. Her memory was normal for a person of her age. Her dementia affected her ability to think. And it affected her ability to act on what few thoughts she was able to process.

As they sat at dinner that evening, the disease had progressed to the point where she seldom attempted to speak. Not because her voice had become very soft, but because in order to speak, she had to concentrate on speaking. But also, in order to say anything, she had to concentrate on the words she wanted to say. She could seldom concentrate on both the words and the act of speaking at the same time. So, she seldom attempted to speak.

Sitting at the dinner table, she tended to lose interest in eating after only a few bites. Her mind processed ideas so slowly that nearly any idea was sufficient to divert her attention and make her forget about eating. And eating was not easy for her. She had to concentrate carefully to make her hand move food to her mouth and then had to work hard at swallowing. Still, she remained stubborn in her admirable struggle to maintain some degree of independence. She resisted his attempts to help her eat.

That she continued eating as she helped him with the Spanish lesson was nearly miraculous. Somehow, her Spanish language ability was accessible without conscious thought processing. She could respond to the simple Spanish questions without involving cognitive decision-making that the disease made impossible.

Spanish lessons became their new routine at every meal. They were a small, temporary victory in their struggle at a time when any victory of any sort was tremendous for both of them. The lessons became a habit for him and he enjoyed them. And he considered writing to thank the app company because his wife was eating much better since he had started the lessons.

Computer games offered an obvious escape for him, one that could be fit around caregiving duties. Games are recommended to maintain mental acuity for people growing older. But computer games had no appeal and seemed like a total waste of time. He regarded his Spanish lesson as a computer game that had the fringe benefit of teaching a language.

After the progression of his wife’s disease reached its inevitable end, he clung to any routine that seemed to help him continue living. Spanish lessons were fun and productive, and he welcomed their demand of his complete attention. Unfortunately, his longstanding hearing impairment made it unlikely that he would ever communicate fluently in Spanish. In this case though, it was not the destination, but the journey that counted.

As his larger journey through life continued, the next important task for him was to try to improve his hearing. It had continued to degrade without consideration for his caregiving duties. He proceeded with his long-deferred plan to receive a cochlear implant. He soon learned that implant surgery, despite lasting several hours in the operating room, was the easy part. The hard part was to train his  brain to work with the implant.

Practice is the key to achieving success with a cochlear implant. The implant stimulates auditory nerves leading to the brain but, as his hearing had degraded, his brain had ceased to process information from those nerves. He had to train his brain to process nerve stimulation into meaningful sound.

Many apps for phone and computer are available for implant training. Most of them involve comprehension of spoken words. They  accomplish that in many different ways. As he worked diligently with the standard apps, he realized that his Spanish lessons provided challenges similar to the implant training apps. And as a fringe benefit, he could learn a different language.

He didn’t really continue the lessons out of a compelling desire to learn Spanish. He did enjoy the lessons and could expect to benefit from having learned the language. But his Spanish lessons were a satisfying way to train his brain to comprehend the sounds of speech and, at the same time, stimulate his brain by learning a foreign language.

And not least, he liked to remember, occasionally, that he was learning Spanish because of his wife.

Lyn Preuit, 10/17/21