Blame it on Lewy?

Strong, brilliant and handsome is how I would have described my father. As a young man, he was a competition weight lifter, winning numerous awards and titles. He became a math and music teacher and was a classical guitarist and would do trigonometry just for fun.

In his forties, he was involved in a horrific car wreck, the doctors put him back together with lots of pins and rods throughout his body and a prosthetic eye. After a three-month hospital stay and thirteen surgeries it was a long recovery but eventually he got back to working out to keep his body strong and healthy the best he could. He had always been very strict with his diet eating incredibly healthy. His mind was sharp as a tack. Unfortunately, the wreck had left him with many restrictions but he did the best he could, given the circumstances, so years later when he seemed to have trouble getting around it was just assumed all from the accident.

Dad never liked going to the doctor. He believed doctors would kill him with all the medications, even though years earlier they saved his life. He started to lose interest in all the things he once loved, leaving the house less and less and becoming depressed. He was one to never complain if he didn't feel well, he just endured what was dealt him in silence.

Eventually he hadn't left the house in two years, making excuses why he couldn't go anywhere. My mother was the one who was always ready to take care of anyone who needed help – so that played right into his reclusiveness. From time to time, she would say "that man is losing his mind" but would never elaborate just why she would say that. He was always pocketing his food in his mouth, when you tell him to chew and swallow he would become angry. He had behavior that was uncharacteristic to his nature. Personal hygiene went out the door. He had begun making bizarre statements, ate very little and had lost so much weight over the past few years. Quickly he went downhill. Battling constipation he refused to see a doctor and became bedridden – soon saying that he would feel better tomorrow, but tomorrow never came. We could no longer blame the accident when something was so obviously wrong. The choice was out of his hands. We called the ambulance, but sadly he never returned home.

While in the ER, they did many test and told us he had dementia but could not diagnose what type without further testing and admittance. His personal physician, that had not seen him in two years, was furious about that diagnosis and said it was just confusion that elderly experience from the hospital visit. He repeatedly kept getting pneumonia and was on and off a ventilator from aspirations. His doctor then blamed "ventilator psychosis".

One day a nurse asked a few questions about his past behavior at home – she had worked in geriatric care for over twenty years before coming to this hospital. She thought this looked like Lewy body, I knew Robin Williams had that, but what was that? I only had access to my smart phone so I read everything I possibly could pull up on my phone. Looking back so much made since now.

When I asked his physician if this could be Lewy body, he had a blank stare then replied “no” and said he would send a neurologist. The neurologist came, and he asked my father his name, what year it was, who was the president, and where he was. The only one he got right was his name. When he was told the right answer, he would just nod in agreement. “See,” the doctor said he got it right, elderly get confused when hospitalized. Here we go again, I was furious after telling him about all the nights I had chased flying bears, monkeys, dogs, children and dead people from my father’s room. How he constantly talked about someone stealing his refrigerator.

The physician very curtly told me he was the doctor here and left. My father was released just a couple days after that, they said there was nothing they could do and insurance was running out. He left there about twenty pounds lighter, just skin and bones and his once brilliant mind gone. Maybe dad was right about the doctors after all.

We moved him to a skilled care home that was fantastic, but unfortunately, too late. The physician there took the time to talk to us about Dad. She wanted to know all about him, being a geriatric specialist she was very familiar with dementia and said she believed very strongly that it was Lewy body, but unfortunately he was too far gone for cognitive testing to make that diagnosis. We rarely left his side throughout the entire time, his speech had started to deteriorate in the hospital and now could barely get a word out. Many times, he would look terrified as if something scary was right in front of him, all I know is something scary and ugly did come and take this beautiful strong brilliant man from us.


Catherine Cravens

Mar 01, 2017