Awareness

Dad doesn't know my name.  I ask him what day it is and he says "potato".  He tries to eat soup with his hands, swears like a sailor, and thinks that washing his face is some form of torture.  He has had dementia for probably 15 years, and full-blown Alzheimer's for at least four.  And yet in some strange way, his brain is processing and pondering and digesting way more than I thought would be possible at this point.  He yells and swears at me, spitting food and calling me horrible names, but 30 seconds later we can sit and talk about the Cubs or my yoga or dogs or sing Take Me Out to the Ballgame quite peacefully. 

Every once in a while he'll say something so profound that it blows me away.  I was visiting him last week with a friend of mine, and we were talking and singing in the library.  Dad was irritated, but we were trying our best.  I wanted to rest my hand on his leg, but he kept picking it up and pushing it away- very unusual behavior for him.  Finally I asked him if I could put my hand there and he said "No".  I asked him why, and he yelled and swore a bit before saying, "I'm jealous."  "Of what?", I asked him.  "Pit bull," was his response.  I had just told him that I was going to be dog-sitting for a friend's pit bull over Thanksgiving, so this didn't seem all that odd of an answer.  I told him I would bring the dog to come visit him (which I won't, of course- this dog could knock him out of his wheelchair with one tail wag!), and he said that would be good.  However, I don't think I've ever heard him use the word "jealous" before in his life.  From his rejection of my hand, the way he kept glancing over at my friend, and the look in his eyes, it was obvious that he was jealous of me.  That I have friends, a life outside on the nursing home, separate from him.  That I can play with dogs whenever I want to, walk around, feed myself with proper utensils.  The words saddened me very much, but also gave me a little more insight into what he's going through. 



A rare quiet moment at Three Crowns, December 2008

Three days ago I went to visit on my own, during dinner time.  He was with the CNA and horribly upset- he had already spilled his milk over half the food, and was pouring the apple juice on his lap and the table.  We worked quickly to clean up the mess, and I took over trying to calm him and encourage him to eat a little.  He wouldn't take anything- he spat the fishcake out and was calling me horrible names.  I looked in his eyes and said, "Dad, it's me, Carrie, you're daughter," but it didn't help.  He was still screaming.  Then suddenly he shouted, "I need to say goodbye!" I caught my breath, and asked him what to.  "To you," he said calmly, looking straight into my eyes.  
While fairly common in the general population, Death Awareness is incredibly rare in people with Alzheimer's.  Most of the don't have the acumen to acknowledge, much less express, what they know is going on.  Now that I've had the weekend to talk about, cry about, and process them, his words seem very surreal. And yet, part of me knows it's happening.  A fit and strapping 5'10" in his heyday, Dad is now down to 135lbs.  Despite a special air mattress, he has sores on his rear because of the emaciation.  Arthritis has made one hand inoperative and causes tremendous pain.  He is on a "nectar-thick liquids" diet, because he is at risk for aspirating and choking.  I'm now reading books with titles like "Gone from my sight: A Dying Experience" and "Final Gifts: Understanding the Special Awareness, Needs, and Communication of the Dying".  I don't know how much longer Dad and I will be on this journey together, but it most likely be coming to an end sooner rather than later.  People have said things to me like, "You must feel peaceful knowing that he said that," and "I'm sure you'll be so relieved when this is all over."  But I feel no sense of peace or relief.  On some level, it will be comforting to know he is no longer suffering.  Other than that, it's just sadness, fear, and a terrible emptiness I have no words for.