I meet Lewy.

The phone rang one evening after the kids were in bed. The caller ID said "Dad". But it wasn't him, it was his wife calling me to tell me that Alan, my father had a knee replacement the week before and had had some complications from the surgery. "What kind of complications?" I asked. As she spoke the answer I began to worry. She described him having hallucinations of people coming after him, and hallucinations of humiliating scenarios. She said he'd been kicked out of rehab because he was combatative and too much to handle. He was babbling and crying like a baby. Confused about what was real and what was not.


 She kept on speaking and my nurses mind was cataloguing the things I'd seen over the last year or 2: word finding difficulty, a general slowness and a blunting of emotions. I had attributed those things to possible medication interaction for his heart issues and other medical things. But deep down   I  had always felt that there was something more going on. I just didn't want to admit it. He'd had a Parkinsons work up that was negative a year before. He seemed to still be functioning Ok but I don't see him often enough to really know.


My Dad is only 70. He's a retired architecht, a bright man who loved to ski, play handball and watch his second family grow. In the past, his roving eye was legendary.   I am 50, the oldest child of a marriage between high school sweethearts that didn't work out. My half siblings are 32 and 36 years younger than me. They are young adults now, one in high school , one in college in New York. She kept talking , I listened intently. She told me there were three possibles- vitamin B12 deficiency, underlying longstanding major depression or Lewy Body disease. I'd never heard of Lewy Body Dementia.


After we finished our conversation, I booted up my computer and began to read. I learned very quickly that LBD is the second leading cause of dementia, similar to Alzheimers but with some very different features. The symptoms are rapidly cycling - hour to hour day to day a person can be doing pretty well and then pretty badly. There are delusions and hallucinations. Like dreams but real and usually with a nasty edge. People with LBD often have difficulty with anesthesia. Before I had even completed reading the first of many articles that I poured over that night, I knew that the diagnosis would be LBD.

 Everything made sense. All the symptoms fit.

 I  had met Lewy and I knew I wasn't going to like him.