One foot is in Juarez, Mexico and the other in El Paso, Texas.  I bring no political agenda to this analogy to where Mary Ann is now living.  She lives on the border between two worlds, one visible to others, the other only visible to her.  There are uncontrolled border crossings with no hope of closing the border and controlling the traffic in the foreseeable future.

In fact, she has one foot on one side and one on the other.  There are not always clear indications which side is which.  She apparently holds dual citizenship.  She is documented in both places.  Some days I think she is only on a temporary visitor’s visa to the hallucination side, residing in reality.  Other days I am afraid that it is a permanent visa leading to full citizenship on the hallucination side of the border.

I took some comfort this morning that Volunteer Jan got to see and hear Mary Ann while she was standing on the border between the hallucination side and the reality side, switching with ease from one side to the other with no cue as to when she was where.  It was, of course, clear when Mary Ann was talking to me where she was standing.  At that moment I was a dozen or more miles away at the Lake, mostly sitting in the van vegetating.

After another night of hallucinations and confusion, she got up painfully early, had breakfast and then crashed just before Volunteer Jan arrived.  After a couple of hours sleeping, she got up, and Jan got her lunch (along with some less pleasant duties — sorry, Jan).  It was then that Jan experienced the multiple border crossings.

By the time I got home about an hour later, Mary Ann was napping with her head on the table in front of her chair.  After a while I asked and she chose to go in and lie down in bed.  I probably should also be napping, but here I am writing this.  It is impossible to work on a post while she is awake.

At this very moment, I suspect the Youth of the congregation are coming to the climax of the musical, Godspell.  I realized that we would most certainly not be able to go together to the evening dinner and performance last night.  I thought we might be able to attend the matinée this afternoon.  It was not in the cards.  Mary Ann’s vacillating between hallucinations and deep sleep just won’t allow that option.  I also am too wasted to enjoy it.  My ministry has always been filled with wonderful relationships with Youth.  I focussed on ministering especially to high school Youth for 18 years of my ministry, including three years teaching at a large parochial high school.

As a result of the importance to me of that ministry, I find great power and joy in experiencing the journey Youth are on.  They experience life as if it were being lived under magnification.  Everything is intense and vivid.  Last year I missed the performance of Godspell.  There are many unbelievably talented Youth in the congregation. I heard a CD of their performance last year.  It was not only powerful because I know and care about so many of the kids, but because is was so professionally done.  Just listening to the recorded musical last year produced a lump in my throat and water in my eyes.  As vulnerable as I am at the moment, it is probably best I am not there.  I might have embarrassed myself.

Decisions have to be made about how to proceed now from here, given our life on the border.  I emailed the online Yahoo group of Caregiver Spouses of those with Lewy Body Dementia about yesterday’s and recent challenges with Mary Ann and my ability to care for her.  The responses came from a thorough understanding of our circumstances since those folks live with this situation day in and day out.  Some have been through and are past what we are now going through.  Some are in the same place.  Some are looking at our situation as descriptive of what is to come for them. They empathized and reflected back the painful reality that I will be no good to anyone if I try to go beyond the limits of what I can handle for too long.

My first intention is to call the Neurologist, describe what has been happening and ask how best to go about eliminating the recently added morning dose of Seroquel.  For a week now, the problem it is supposed to help has gotten measurably worse.  I suspect he might again suggest going to a local Neuro-Psychiatrist to check out other options for medication.  I have little hope that there is anyone more competent in dealing with this particular form of dementia located in our community which is much smaller than Kansas City.

In addition, I will continue to experiment with paid help to see what the best times might be and how much we can afford.  I realize a dementia unit will be many times more expensive than having some help here.  The challenge is determining where the tipping point is that shifts the weight from home to facility.  My physical and mental stamina are a part of what will weigh into that measurement.

…It is now a couple of hours later in the afternoon. The doorbell rang a few moments ago.  It was former parishioner Dave, delivering a rhubarb pie that had been saved back to bring to us from the reception after the production of Godspell this afternoon.  You know, the fact that as I was writing about missing the production and the kids, someone was thinking of us warms my insides. After retiring almost two years ago, it is a comfort to think that while gone, maybe not forgotten!

Mary Ann is still in bed and not interested in getting up.  Her eyes are open, but she wants to remain there in bed.  I hope she is willing to get up for a while yet today.  Maybe she is resting up for a busy night of hallucinations/delusions/dreams mixed with reality.  I certainly hope not.  I did nap for an hour this afternoon, but I do not look forward to being up tonight.

She did get up to have a little applesauce, but has now gone back to bed. She was hallucinating almost constantly while awake in bed and out of bed to the table, while eating, and back into bed.  Enough for now.  Maybe I can try the early to bed option on the outside chance sleep will be possible.

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