Just this morning I stumbled onto something that brought both anguish and relief in the same moment. I was posting obits on my news sites and saw another obituary mentioning Lewy Body Dementia. I knew about dementia of the mind, having watched my father go through that, but “body dementia” was a term that intrigued me. So I googled it. To my surprise, it wasn’t what I thought at all, but it was an answer to the questions our family has had all year. Every symptom, every characteristic of this progressive disorder was like a page in Dad’s medical records. So much that didn’t make sense fits together now, like puzzle pieces. The strange rounds of dementia that would come and go. He would recognize faces but couldn’t put names with them, and sometimes not even recognize the faces. The swallowing problems that choked him on food and water and became worse in the months before he passed away. The weeks of insomnia, the vivid hallucinations, the changes in his heart rate…and the sudden inability to gauge turns in his wheelchair, not being able to get the spoon to his mouth, losing the ability to do basic math (he was a machinist and math was his specialty). The stone face stare I called his T-Rex gaze, eyes open and not looking, not seeing. All of these and more in the list of symptoms.
LBD is like a combination of Alzheimer’s and Parkinson’s, a kind of double whammy that baffles most physicians, even the ones who know what it is. Meds that work for Alzheimer’s make LBD worse for some patients. Some parkinson’s drugs are helpful. But all in all, nothing is really out there that brings back our loved ones from the mist. There is little on the horizon to give us hope for a cure or even good therapy. It drains the life out of the living, and leaves an empty shell to wither.
I wondered during his last days why he was so emotionless with us, why he didn’t cry when we cried, why he didn’t try to comfort us. But I realize now that was part of the disorder, part of how this illness attacks the brain and the emotions, triggering vivid impressions of things that never happened, putting together pieces of things that did happen as though they were connected. The brain was misfiring over and over. Dad was lost in the fog, caught inside that brilliant mind of his that betrayed him in the end.
Somehow having a name for what took him from us helps me. It brings a kind of resolution to the dark journey to know the name of this adversary. Not knowing what was happening made it so much harder to know what to do, how to react, what to expect. And I have to wonder what can be done to get more doctors in the loop about this, how to diagnose and treat it.
Photo: Rain and Tears by voltuzaidi