“Are you going to pack up so that we can go?”  She thought we were still in the hospital.  After all the naps yesterday, the first part of the night was pretty tough.  She was up every few minutes sitting up, messing with the sheet.  She said she was making the bed.  It must have happened a dozen times with only minutes between each one.

When she thought she was in the hospital, I pointed to her quilt hanging behind the bed as I did once before.  This time she just said, “She keeps insisting,” which I understood to mean her “other self.”  She has not used that language before, but that sort of delusion is among the problems I hear about in the online Lewy Body Dementia Spouse Caregiver group.  That may not be what she meant, but it certainly sounded that way.

She settled down by about 1:00am.  Gratefully, she stayed asleep other than for a couple of trips to the bathroom for a number of hours.  This morning before 5am, she got up in need of something to eat.  I got her up and to the table for some juice and crackers.

Again this morning, she could not manage to negotiate eating the cracker without my feeding it to her.  She couldn’t manage the juice by herself either. She couldn’t seem to locate her mouth with the straw.  That has happened on occasion in the last weeks, even before the hospital stay.

Gratefully, after having the juice and crackers, she went back to bed and to sleep, and has been sleeping ever since– it is about 9:45am now.  She is moving around quite a bit in bed, but that sort of movement has been so from some years before the Parkinson’s was first diagnosed (22 years ago).  Vivid dreams with physical movements associated is one of the signs of future problems with this sort of dementia.  Of course, it is not a direct correlation, lest those of you who experience that think you are doomed to dementia.  It is somewhat predictive, but lots of other things come into play for problems with dementia to arise later in life — both genetic and environmental.  At least that is my understanding from what I have heard and read.  I am not an expert!!  Please don’t attach that burden to any observations I make.

I just glanced at the monitor again to see how Mary Ann is doing.  I did that automatic check that is natural to those of us who are Caregivers.  She was fairly still.  I waited and watched to see her body movement to verify that she is breathing.  Her current circumstances do not seem precipitous, so there is no special need to check.  It is just a normal response to her general condition.

Parenthetically, I didn’t trip the live trap soon enough this morning.  There is now another squirrel with a frightening tale to tell.

She has been sleeping now for many hours.  It is almost noon.   I am wondering who she will be when she awakens — the confused Mary Ann, or the one who is still mostly functional.  I am going to let her sleep as long as she can in hopes that she will “sleep it off” and return to the  version of normal we had before the hospital stay.

It is almost 4:30pm.  Mary Ann stirred for the first time today at about 4pm.  She got up to go to the bathroom.  We changed the disposable underwear, and I thought she would then get dressed.  Instead, she wanted to put her pajama bottoms back on and go back to bed.  That is where she is now. 

Once before she slept for almost two days after having had multiple sleepless nights which had resulted in much increased hallucinating.  She was significantly improved after that two day sleep.  I am, of course, hoping, planning, expecting that to be the case this time.  I am not so foolish as to count on it as a certainty.  She may be anywhere from completely lucid to virtually unable to function. 

As always, we will deal with what comes when it comes.  While I have in my heart of hearts ruled out residential care, this experience is causing me to reconsider at least thinking about the possibility.  I am still not actually considering it, but I am allowing a mental review of my position on the matter.   At the moment, all the options I am actually considering involve remaining here at home, adding whatever help or equipment is needed.

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