Sunday, August 21, 2011

Floating on Your Back

After watching this youtube video -Difficulties in Diagnosing Lewy Body Dementia - pt 1 , and some of the other videos in this series, I decided I have been floating on my back, going with the current and looking at life from a different perspective for some time now but I have definitely hit the rapids again.  I am hanging on for dear life right now, living next to my husband's delusions, disorientations, confusions, and hallucinations.  The delusions are not entirely new but suddenly very prominent and in my face.  For two weeks, coaxing, cajoling, explaining, going inside the delusion and going along with it and other times sharing the science behind delusions, always hoping to stop the insanity.  Nothing worked.  Finally, it occurred to me that his brain had no intention of giving up the world it created so I needed to stop trying to change his reality.
I am scheduling an appointment with a psychiatrist specializing in dementia for my husband ( but secretly, I am the patient hoping for information about living in this world). Unfortunately, I don't know what I want from this doctor.  Comfort I suppose.  And information about the world of hallucinations and delusions.  There is nothing peaceful or calm about this journey right now.  Maybe later when I've acclimated and grown accustom to the stranger that shows up more and more frequently.   This is far more difficult than dealing with the physical needs of my husband.  I've stopped gagging and choking and acting horrified at clean-up.  But this - wow, so hard.  There is no gagging at the odor or sight of delusions/hallucinations but the sadness of it all is indescribable.  Give me clean-up duty any day if my husband could stay in touch with reality.

Monday, August 8, 2011

Hallucination, delusion, confusion, Capgras syndrome (a friend, spouse, or close family member has been replaced by an identical-looking impostor) - today was wrapped in a tangled web so thick RDC could not escape and I could not find a way in to help him.  Sunset brings a worsening of Lewy Body's symptoms.  It's as if the Lewy Body thief waits until nightfall to pitter-patter, sneak, sneak into our home, robbing RD of communication and reason. Today the thief showed his face early in the day and stayed, causing havoc and wrecking our day together.  I've dreaded sunset for a long time but now I wonder if I will dread dawn as well.  
RDC thought I was his secretary of 20 years ago.  He asked how long before I would give birth. I couldn't help but laugh since I've been busy the last nine months all right but the effort has gone toward weight loss.  I've lost 30 pounds since December,  feeling quite proud of myself until today!  Okay, I'll keep working on the weight loss...
When delusion dominates the day,  we're doomed to get through the day and hope for something better tomorrow.  I'll be back to describe a Lewy Body Life as it continues.