Sinking In

I like information.  I have been known to discover something new to me, and become obsessed with learning all I can about it.   A few years ago I decided that I needed espaliered apple trees for my back yard.  I read everything I could about them. I went to the Canby Fruit Show, I combed neighborhoods looking for any kind of espaliered tree.  I now have two espaliered apple trees in my  yard that are producing apples.   They are grafted so each branch has a different variety.

Since hearing the term Lewy Body Dementia last week, I've done a lot of research and reading.  I've learned how difficult it is to diagnose and how commonly it is missed. I've learned that there is no treatment. I've learned that its course can be very fast. I've learned that it robs you of your family member.  I've learned that its more common in men than women . I've learned that symptoms  normally manifest between age 50 and 70.

At a certain point I decided I can learn no more. I had to stop reading. I had to stop researching. I know enough.

Two of my Grandparents lived well into their 80's and  a third into her 90's.  The were all sharp as tacks until the end.  I've always assumed that both of my parents would follow their parents and live until their 80's.  I assumed that they would continue to lead full lives until the end, like their parents.

As it turns out, I was wrong.

Thats not going to happen for my Dad. Yesterday was the best day he's going to have, and each day he is going to lose a little something more. The slide won't be  predictable, it won't be linear, but it's happening.  Every day he is going to be less of who he is,  less of who he was. There is not going to be a who he could be.

I feel cheated.

The Hospital

Its hard to sift through medical information translated  by and told to you by someone who is not medically trained. Impossible really, kind of like playing the classic kids game "Telephone".  You get the overall drift, but you don't have the details and diagnostic picture of what is really going on.

Hospitals are familiar territory to me. I've worked in all kinds:  everything from a huge inner city public hospital in New York with hundreds of beds, to  a tiny rural outpost in Washington with 25. Arriving at Good Sam, I navigated the halls and construction that seems to be part of every hospital these days to find my Dad's room.  I took note of the names of the units that I passed through , not knowing where he was housed. I was relieved to find that he was on the Ortho unit and not the Psych unit.

He was doing PT when I arrived. He looked like he was doing OK but I searched his face for clues about what was going on.  The PT and the nurse told me he was doing much better today, the new medication was working. Geodon is a powerful anti psychotic that is used to help people with LBD by squelching the hallucinations.  Tick.  Another confirmation that it was going to be LBD , even though I hadn't officially heard the diagnosis yet.

When he was settled back in his room, he looked so vulnerable . I asked him if he understood what was going on with him and he said "Why don't you tell me what you know".  Deftly covering. The young shiny nurse  confirmed that the Neurologist diagnosed LBD.    He listened intently trying to make sense of it all, he asked if something he did caused this.  His looked young and sad, like a little boy.  I told him that it was simply bad luck, nothing he did caused this.  Nothing.  All the while I am hoping in my own mind that this terrible thing, my new friend Lewy,  is not genetic. That I won't one day be facing the same thing.

His wife arrives.  He is happy to see her.  She's been at the gym working out. They chit chat.  Then the "Team" comes in:   Geriatrician, Resdient and medical student.   They dance around the diagnosis but when   they finally say it- Lewy Body Disease , I can see that she doesn't believe it, doesn't want to take it in.  But his MRI is normal she says.   I can't blame her. He is only 70. He's supposed to have years left to enjoy life, to watch his kids grow into adults.   To travel, to read, to enjoy retirement.

I tell her  that  it is true.  They use the same electronic medical record program that we do, and when the nurse opened the chart, my eyes went straight to the assessment : Diffuse Lewy Body Dementia.

My Dad starts to cry, she kisses him and tells him its going to be OK.

I wish I could believe that.

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.