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Lewey What?

A testimonial by Linda Baumler

My husband, Robert Baumler, passed away in 2018 at the age of 63 due to complications from Lewy Body Dementia. His death was accelerated due, in part, to medication errors by physicians who do not understand the disease. Robert’s neurological symptoms began at the age of 42 and he was initially diagnosed with a cerebellar disorder. He was experiencing pain and stiffness in his legs and trouble with balance and fine motor skills. He also began having terrible nightmares where he acted out his dreams by screaming, punching, and throwing things. Robert’s previous issues with anxiety began to intensify and he became extremely irritable. By the age of 50, he was beginning to have memory problems and trouble performing at work, leading to his retirement from the federal government as a Facility Manager at age 55.  Robert was gifted in gardening, carpentry and mechanical skills, but could no longer do any of the things he enjoyed. Despite being followed by some of the top neurologists in the country, Robert continued to be told that he was suffering from cerebellar ataxia and that the memory problems were likely associated with the ataxia, or depression, and certainly nothing as serious as Alzheimer’s.  

It was not until Robert experienced a sudden psychotic phase at age 58 that we learned of a disease called Lewy Body. While a firm diagnosis could not be made, brain scans and symptoms led to this conclusion. Robert had begun hallucinating, was manic, and had delusions. Because his symptoms would come and go, he could fool everyone, including the doctors. He had no regard for safety, and tried to use a walker to go down a flight of stairs, causing him to need 24 hour care. Our two children had moved out of the home immediately upon college graduation, as Robert’s personality changes had caused too much stress in our home. They both lived close enough to help on the weekends, but most nights, I was alone trying to manage his mania which caused him to be up all night for months. I hired in-home help so that I could continue to work a few days a week, and also had helpers a few nights a week.  But, the lack of sleep for many years, along with the stress, eventually caused my own health issues. Thus, I was forced to place Robert in assisted living where he received more supervision at night, along with the help with toileting and dressing that I could no longer do myself. This expense caused us to use up all of his long term care insurance and we began going through our savings.

At age 60, Robert was the youngest person in the facility and although I visited him every day, this was not the type of marriage we had envisioned at such an early age. A year before his death, Robert attended our daughter’s wedding in his wheelchair with the help of an aid. He was unable to bring her down the aisle. Unfortunately, he died before she was able to tell him she was expecting our first grandchild.