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.
Thursday, June 9, 2011
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.
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