The following post was written on Thursday, January 7, 2009, but not published until Friday, January 8, due to Internet problems:

The best laid plans sometimes go astray. Feeling out of sorts yesterday, I went to bed early in hopes of a good night’s sleep providing an ointment to salve my sore spirit. Demon Lewy Body Dementia (doesn’t the word dementia derive from the word demon) had other plans.

Mary Ann simply could not sleep – for the entire night. I was involved with her needs in some way, two to three times an hour. There were the commode trips. There were two snacks, some drinks of water. There were lots of times sitting on the side of the bed, needing to be situated again when lying back down. She usually can’t handle the covers without help.

There was a long interaction in the middle of the night when she wanted to go out into the Living Room to sit and try to read. The problems with that idea are many. First, when she is up, she still needs help often with the same needs she has during the day. Then, the prospect of sitting up at night for a long period of time, then sleeping during the day risks shifting nights and days, making our system almost impossible for both of us. Those of you who have raised little ones have probably experienced the time when the tiny ones seemed to switch nights and days, making your lives pretty tough for a while.

After wanting to get out of bed multiple times throughout the night, when it got to be seven in the morning, she needed to get up. As usual after a bad night, she took her meds, had breakfast, and in an hour or so ended up back in bed sleeping soundly. I am of course wide awake and writing this. It is my understanding that trying to compensate for lack of sleep at night by napping during the day does not actually help, in fact just makes the sleep deprivation problem worse. It is harder to get to sleep then at night. That and my general inability to nap during the day results in my staying up rather than napping while she is napping. The general wisdom is to go to bed at the same time and get up at the same time each day. The general wisdom does not take into account multiple times up during the night in between those two times.

Of course, the lack of sleep is increasing the problem with hallucinations. There were the people in the house again last night. This morning there were a variety of things she saw outside the windows, and in the house things that needed to be picked up, tiny chains in her hands. There was one of those interactions in which she was talking as if it was just an ordinary matter while saying things that made no sense at all. About half way through lunch, she started to get up. I asked what she was going to do. She said she was going to get her Pepsi. The cup of Pepsi was sitting at the top of her plate with the can in back of it, just as it is for every lunch.

On the other hand, she asked if this is the day Stacey would be back to talk about the blinds and painting the interior of the house. She remembered that correctly. Then she suggested that we paint the interior a light blue, just a touch of blue. Because so often the lucid moments come, I try to work hard at tracking when her words are not computing for me. Sometimes a different word will come in place of the one intended. Yesterday when she suggested we adopt the cat she was seeing with her “magic eyes” (her words for the hallucinations when she accepts that they are hallucinations), she said maybe that cat could be “adapted.”  It took a moment for me to catch what she meant.

In spite of the difficult night, at the moment, I am feeling better today than yesterday. Maybe it is that adrenalin is playing a bigger role in sustaining alertness today. I just took a break from writing while Mary Ann is napping to do a bit of shoveling outside so that I can get to the birdseed. I have fed and watered the birds. It is invigorating outside since the wind chill is between twenty and thirty degrees below zero and the new three or four inches of snow is blowing around. The air temperature is predicted to reach a high of five degrees above zero and a low of eight below tonight, follow by a low of twelve below tomorrow night. Needless to say, we will not be going out with Mary Ann in the wheelchair today or tomorrow. The most we could do is head out in the van and have Mary Ann stay in the running van while I run into the store. There are a number of things on the list, but none that we can’t survive without.

The toughest thing today so far is that the telephone land line is out, eliminating out DSL access to the Internet. I certainly do feel disconnected to the outside world. I forgot just how much time I spend connecting with others through email and the Worldwide Web. For being pretty much technologically illiterate, I sure depend on the technology a lot.

Right now, my interaction with the outside world, is enjoying watching the dozens of birds that are enjoying the fare I have provided for them. We did end up going out in this weather. I discovered that we needed to return some videos. We went to the grocery and I ran in to get the items. She decided that she wanted take out Chinese from the grocery in spite of the fact that I had a roast, potatoes, onions and carrots cooking in the crock pot. It frustrates me that Mary Ann so often will not eat what I cook, even when it is something she used to eat and enjoy. I decided it was not worth arguing with her, since my goal is that she have plenty of nourishment. She ate the Chinese and I had the roast and veggies.

The above was written yesterday on a Word Processor since the Internet was not available.  The really bad night was the night before last.  Last night I went to bed even earlier.   Until about 12:30am, Mary Ann was disturbed by vivid hallucinations.  There were the people again.  The little girl was there.  She was confused about the time.  At one point while lying in bed she said our Daughter, Lisa, was on the phone.  She had no phone. 

After she finally went to sleep, she slept the night.  I got up at 7:30am to get ready for the phone line repair person who was due between 8am and 12pm, but came at about 1:30pm.  Mary Ann slept in until after 9am.  After the commode trip, she went right back to bed.  She was barely awake for the commode trip.  She slept until almost noon.  I think it helped some since so far today the hallucinations have not been as many and as vivid. 

The cold continues, so we stayed put today.  It will be even colder tomorrow so I suspect we will do the same. 

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