After watching this youtube video -Difficulties in Diagnosing Lewy Body Dementia - pt 1
www.youtube.com , 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.
Sunday, August 21, 2011
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Hallucination, delusion, confusion, Capgras syndrome (a friend, spouse, or close family member has been replaced by an identical-looking impostor) - today was wrapped in a tangled web so thick RDC could not escape and I could not find a way in to help him.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.
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.
Sunday, July 31, 2011
The Cross-Word Puzzle
Can it get any more difficult to decipher Lewy Body language? Surprise! Surprise! YES! This week tried both my patience and the limits of my ability to understand my husband's message. I met such puzzling phrases as, "The fartherest (his word) thing we had carried the railroad architecture" (part of a multiple day reference to railroads). Probing over and over did nothing to bring me closer to meaning. "Pay my grass"(comb my hair) was much easier because it was accompanied by hand gestures. With no context to draw upon I'm still working on "Denmark got beached by Brazil".
My neighbor, K.C., popped in with a fresh cantaloupe in her hand. R.D. greeted her saying, "Hurricanes are good and cool". His eyes were fixed on the melon so I'm going with the meaning cantaloupes are good and cool.
I enjoyed the sincere question he posed, "Who won the adjustments on the wheel?" Once again it was out of the blue, unrelated to anything in our immediate environment or conversation. After some frustrating (for the both of us) probes, I figured out he was asking me about my weight loss. There is something rational in his question but I can't put my finger on it.
"I need someone to help me shine the connection on zero, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16. There's a connection to a socket" (he wants his razor). I deciphered that one immediately so I'm beginning to wonder about my own mind. How exactly does that make sense and why did I see the meaning so quickly?
In addition to more and more difficult language structures, R.D.'s behavior turned in a new direction - at least I haven't been here before. He asked me how long I'd been seeing the bartender, thought every female on TV was me and kept asking, "Is that you talking on the TV?", wanted to know where his mom and dad were, and constantly walks around the house looking for something but cannot tell me what. He has gotten out of bed twice tonight because he wants to make an $1100. contribution to something as yet unknown to me. It is one of those... I'll deal with this in the morning.
It has been a long, exhausting week but something tells me I'm in for more excitement in the week ahead!
My neighbor, K.C., popped in with a fresh cantaloupe in her hand. R.D. greeted her saying, "Hurricanes are good and cool". His eyes were fixed on the melon so I'm going with the meaning cantaloupes are good and cool.
I enjoyed the sincere question he posed, "Who won the adjustments on the wheel?" Once again it was out of the blue, unrelated to anything in our immediate environment or conversation. After some frustrating (for the both of us) probes, I figured out he was asking me about my weight loss. There is something rational in his question but I can't put my finger on it.
"I need someone to help me shine the connection on zero, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16. There's a connection to a socket" (he wants his razor). I deciphered that one immediately so I'm beginning to wonder about my own mind. How exactly does that make sense and why did I see the meaning so quickly?
In addition to more and more difficult language structures, R.D.'s behavior turned in a new direction - at least I haven't been here before. He asked me how long I'd been seeing the bartender, thought every female on TV was me and kept asking, "Is that you talking on the TV?", wanted to know where his mom and dad were, and constantly walks around the house looking for something but cannot tell me what. He has gotten out of bed twice tonight because he wants to make an $1100. contribution to something as yet unknown to me. It is one of those... I'll deal with this in the morning.
It has been a long, exhausting week but something tells me I'm in for more excitement in the week ahead!
Thursday, June 9, 2011
Lewy Body Language (continued)
I'm neither a 'routine' or 'spontaneous' person but if left to my own devices I'd prefer not having a set schedule to follow. A bit confining, however, when living in a Lewy Body world, routine is an essential component of life. The day begins with refreshing RD's skin (warm water and washcloth 'bath' in the bed, applying lotion, and topical medications where needed). Then dressing, walking to the living room, shaving him with an electric razor and combing his hair. This is followed with a short walk to the bathroom where he rinses his mouth with mouthwash and I put clean dentures in his mouth. Back to the chair where I prepare and administer breathing treatments and inhalers. Next, blood sugar and blood pressure checks. At last, we're ready for breakfast and morning medications.
This morning he said, "Calendar the back of the building". Don't ask me how but I knew he wanted me to go back to the bedroom and get his electric razor. I usually bring it out to the living room with me and maybe he noticed I didn't have it this morning.
Rough day from beginning to end. I can never identify the exact 'beginning' of a change, just a general sense of a shift. This time I feel the very ground shifting under my feet. RD is less and less sure of my name. A few days ago he ask my name and today he said, "You're a Jennings. I know that". Over and Over today he asked to go home and nothing I said could convince him he was home. Language usage was impossible to decipher no matter what I tried. I was mentally drained by the end of the day and could do little but cry while doing the dinner dishes.
Watching him melt away in front of me. I am always reaching for his hands and holding them both at the same time, trying to hang on the whatever is left of him. Today those beautiful blue eyes looked back at me with bewilderment and less and less recognition. Come back to me, come back to me.
This morning he said, "Calendar the back of the building". Don't ask me how but I knew he wanted me to go back to the bedroom and get his electric razor. I usually bring it out to the living room with me and maybe he noticed I didn't have it this morning.
Rough day from beginning to end. I can never identify the exact 'beginning' of a change, just a general sense of a shift. This time I feel the very ground shifting under my feet. RD is less and less sure of my name. A few days ago he ask my name and today he said, "You're a Jennings. I know that". Over and Over today he asked to go home and nothing I said could convince him he was home. Language usage was impossible to decipher no matter what I tried. I was mentally drained by the end of the day and could do little but cry while doing the dinner dishes.
Watching him melt away in front of me. I am always reaching for his hands and holding them both at the same time, trying to hang on the whatever is left of him. Today those beautiful blue eyes looked back at me with bewilderment and less and less recognition. Come back to me, come back to me.
Wednesday, June 1, 2011
Learning a Lewy Body Language
Posting on a regular basis seems to elude me. I want desperately to capture the language I'm hearing and record it but days pass and I never sit down to write.
This evening seems as good as any to begin again. Pointing to his shoes, he said something that came out mumbled and soft but I knew he wanted to get ready for bed. Nothing clairvoyant on my part but given the hour and nightly routine, very easy to figure out. Much of my husband's comments, sentence fragments, reactions and responses would seem completely bizarre to any visitor. If you listened, likely you would imagine him completely insane or senile for lack of a better term. For example, as I removed his shoes he said, "that thing in a box that you throw in the river". My first move is to kneel close to his chair and make eye contact with him. I tell him I cannot understand what he's trying to tell me so I need more help. He tries again," one, two, one two" I ask if he wants a suppository. He brightens and smiles, "close". I try again. "Do you want a stool softener?". BIG SMILE. "YES".
How do I get from there to stool softener? It begins as a belief his words are neither random nor 'crazy'. There is meaning in every utterance. The meaning is not random, in fact, it's quite rational and conveys a true need - a stool softener but the words seem far afield. But maybe the words are not totally random. He has used references to water before when needing a suppository or stool softener. He needs fiber to help with the ever present battle against constipation so I refer to it as "Fiber One", a cereal I commonly prepare for him. The second attempt to help me is 'One two, one two' (Fiber One) which ultimately I put together with the reference to water (river) and figured out what he was saying. I have hundreds of these utterance to decipher every day. It is mentally exhausting but I cannot ignore his attempts to communicate because I want desperately to talk with him and to reassure him that I can figure out what he's saying to me.
I plan to use this blog to capture his unusual language patterns. If for no reason at all except to keep them forever in written form. Because the vocabulary and syntax are unusual and seemingly random, I have a difficult time remembering them at all once I have decoded the meaning. This can be a place to capture the speech and partial fragments of structure. Love you dear husband.
This evening seems as good as any to begin again. Pointing to his shoes, he said something that came out mumbled and soft but I knew he wanted to get ready for bed. Nothing clairvoyant on my part but given the hour and nightly routine, very easy to figure out. Much of my husband's comments, sentence fragments, reactions and responses would seem completely bizarre to any visitor. If you listened, likely you would imagine him completely insane or senile for lack of a better term. For example, as I removed his shoes he said, "that thing in a box that you throw in the river". My first move is to kneel close to his chair and make eye contact with him. I tell him I cannot understand what he's trying to tell me so I need more help. He tries again," one, two, one two" I ask if he wants a suppository. He brightens and smiles, "close". I try again. "Do you want a stool softener?". BIG SMILE. "YES".
How do I get from there to stool softener? It begins as a belief his words are neither random nor 'crazy'. There is meaning in every utterance. The meaning is not random, in fact, it's quite rational and conveys a true need - a stool softener but the words seem far afield. But maybe the words are not totally random. He has used references to water before when needing a suppository or stool softener. He needs fiber to help with the ever present battle against constipation so I refer to it as "Fiber One", a cereal I commonly prepare for him. The second attempt to help me is 'One two, one two' (Fiber One) which ultimately I put together with the reference to water (river) and figured out what he was saying. I have hundreds of these utterance to decipher every day. It is mentally exhausting but I cannot ignore his attempts to communicate because I want desperately to talk with him and to reassure him that I can figure out what he's saying to me.
I plan to use this blog to capture his unusual language patterns. If for no reason at all except to keep them forever in written form. Because the vocabulary and syntax are unusual and seemingly random, I have a difficult time remembering them at all once I have decoded the meaning. This can be a place to capture the speech and partial fragments of structure. Love you dear husband.
Monday, December 6, 2010
Syntax and Meaning Screwed Up
Most days he is struggling to make himself understood. Both the syntax and semantics of language is eluding him. For one of the masters of language and vocabulary to struggle is unbelievably difficult to watch. I don't always know what he is trying to tell me. I usually resort to having him show me what he means and we work through it that way. "The bed won't turn off" really means that a lamp by the bed is on and he doesn't know how to shut it off.
Saturday, November 13, 2010
Beginning
Officially, our Lewy Body dementia life began in April of 2008 but I place the starting line at 2000. Living with Lewy Body dementia is a bit like living inside a cross-word puzzle. Filling in blanks, learning to be a code-breaker, and knowing there is a hidden meaning for 'red mittens' is part of the new job description of wife.
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