This has been something of an odd day.  Mary Ann woke up seeming fairly alert. Very soon, she shifted to a minimally responsive mode.  For much of the day, her head hung down on her chest.  She seemed ready to roll forward out of the transfer chair.  The bath aid when she was here, Volunteer Margaret (our Parish Nurse) when she was there or I needed to hold her shoulders up to keep her from going over.

She had a routine Mammogram this afternoon.  It was quite a struggle for two techs to get her positioned and hold her up for the x-rays.

She did a little better after a mid-afternoon nap, but resumed the head down position again after a bit.  Supper was a challenge for her, but she did get a fair amount eaten.

The hallucinations have continued.  I have been back and forth a number of times as I have been trying to write this post.  For the most part, she is saying things that don’t really make any sense.  She starts to say something and then stops, apparently losing track of it or recognizing that it makes no sense.  This has been one of the more challenging times in our journey.

I recognize the head on the chest problem from many of the posts of those in the caregiving spouses of those who have Lewy Body Dementia online support group.  Again, I am hoping that this is just a temporary dip into the Parkinson’s Disease Dementia.  Since we live so close to the boundary between lucidity and confusion, there is always a fear that we will move over that line permanently.  This particular type of dementia, is very unpredictable.  People can move in and out of lucidity and functionality seemingly at random.

There have been only minutes between needs for the last hour or so.  The last trip was for another visit to the commode, just five minutes after the previous trip to the commode.  As we were taking care of that, she asked if we were going home.  I said that we were home and pointed out her quilt hanging on the wall in the bedroom.  That seemed to satisfy her for the moment that she was in her own bed.

It is these times of utter confusion that are among the very hardest for me to handle.  The constant needs that cannot be satisfied since either the words make no sense or what she sees has no substance are very wearing.  Right now it appears that this will be another sleepless night filled with constant frustration.  Then again, maybe not.  The signs are not good at the moment.

Another trip to help her sit up — lots of words that made no sense.  She did agree that she wanted to go back to bed.  We will see how many minutes pass until her next need to get up for something indiscernible.

Five more minutes, another trip to the commode.  This time she wanted something to eat.  She decided to go to the table for a snack container of applesauce.  She took my arm to walk (our usual pattern), then she wanted to continue with the walker (very difficult for her to handle), then she recognized that she needed the wheels (transfer chair), and finally we made it to the table.  All those changes happened in the span of about twenty feet from where we started at the bed to the table.

She usually feeds herself when she has the applesauce, but that wasn’t working for her tonight.  I offered and she chose to have me feed her.  After some difficulty with her trying to get something off the bed, something that was not there (didn’t I see that pile of whatever it was), she is now back in bed for how long — I don’t know.  It is about 11:30pm.  She said that Zandra would soon be here.  Zandra is the bath aide who comes in the morning two days a week.  Zandra was here this morning.

She seems to be stirring again.  Let’s see what it is this time.

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