I explained that she wouldn’t be able to get the pills taken if she did not open her eyes.  “Will you open them now so you can take your pills?”  I said.  She replied, “I will when I am damn good and ready!”  Now that is the Mary Ann that Joy, Terry and Cherri remember.  I just laughed and told her that I liked her better when she was sleeping.  She laughed too.

We both had trouble getting to sleep last night.  I suspect a change in the weather and the barometer might have played into it.  I think it was some time after 1am that we finally went to sleep.  Mary Ann woke up very early.  There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well.  I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall.  When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused.  Her eyes were tightly shut.  She was talking as if to people.  Earlier she had seen Granddaughter Ashlyn.  This time she was asking Granddaughter Abigail to show her what she was drawing.  They, of course, live ten hours away in Kentucky.  She said a number of things to me that I just couldn’t connect with.  She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt.  Her eyes remained closed.  I put the pills and water and yogurt in front of her.  She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating.  During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers.  I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them.  After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed.  Zandra, her bath aide, came to give her a much needed shower and wash her hair.  I usually wash it at least once between Zandra’s Wednesday and Monday visits.  Mary Ann had been in bed almost the entire time.  When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed.  Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia.  That comment surprised me since I just did not expect that level of self-awareness.  I talk about our situation in front of Mary Ann, using language that matches what I understand to be so.  Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping.  That is one of the symptoms of Lewy Body Dementia.  As the disease progresses, often the daytime sleeping increases.  I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed.  After a while, one of her pill timers went off.  I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth.  In the past it has always worked to do the pills that way.  This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw.  I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down.  Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist.  She slept soundly through that entire time.  Trying to force her to get up when she is sleeping as she is now, is not much of an option.  She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago.  It is what it is.  We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement.  While the long term trajectory of this disease is not good at all, the short term is very unpredictable.  Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping.  She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head.  She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed.  If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for.  Those of you who have lost a spouse know the profound loneliness that comes.  With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up.  I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality.  She needed to have been awakened and taken to the bathroom.  Her pad was full to overflowing.  Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day.  Needless to say, the sheet and her jeans needed to be washed.  Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad.  At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream.  Her ability to walk has diminished dramatically.  She went to bed at about 8pm and has been restless off and on for a while.  It is now about 10:30pm, and for the moment she seems settled.  We will see how the night goes.

Addendum:  She just stirred and decided she wanted to get dressed.  She didn’t want to spend the day in her pajamas.  I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read.  Finally, she decided she could watch television in the bedroom without getting dressed.  I assured her I would be heading to bed soon.  This may be a long night.

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