She watched the director, knew the music, sang with her mouth open wide just as she should, and brought some joy to her Grandparents (and, of course, her parents).  This Grandpa loved every minute, since singing was in the center of my life during most of my first two decades of life, and has remained a love until now.

We drove a little over an hour to the church at which Chloe’s choir performed.  Her other Grandparents made a trip more than twice that length to come to the concert.  The choir is sponsored by the University of Missouri, Kansas City (UMKC). Auditions are required to be able to sing with the choir.

Then logistics needed to accomplish the day’s activities were not always easy.  Churches try hard to be accessible for the handicapped, but old buildings often will simply not cooperate in the task of becoming welcoming.  We thought it wise to make a bathroom stop before the concert.  There was an accessible bathroom inside the ground floor doors near a handicapped parking spot.  The doors were locked to force the attendees to use a door that would allow entry to the room from the back.

Gratefully, we got the attention of then attendant who let us in and waited while we used the restroom.  The need to change the pad due to incontinence resulted in removing shoes that are difficult to get on and off.  We used an elevator to get to the floor on which the concert would be held.  As a result of the time spent in the bathroom, we barely made it in through a door in the front of the room, the same door through which the choirs entered.  We were directed to the indentation in the pews for wheel chairs, but all the seats around it were filled.  Gratefully, a family offered to split up with Dad moving the pew behind so that I could be right behind Mary Ann.

After the concert, to get to the reception area, we had to return the same way, take the elevator to the lower level, pass through the kitchen, and then arrive at the reception area.

Before the concert, we ate out together.  The handicapped parking spaces were a block from the restuarant.  To get to the booth, we had to go through the serving area.  Booths are always a bit of a challenge.  Ordering was pretty difficult, as it always is, since a compromised executive function of the brain is among the first of the problems to emerge with Parkinson’s Disease Dementia (Lewy Body Dementia).  She really struggled to track and then decide what to order.

Again, getting the food to her mouth, coordinating the straw so that she could drink did not go very well.  Then twice, she just fell to the side. [See an earlier post on leaning to the left.]  After the second time, I moved from sitting in the chair that had been added for me, to sitting right next to her on the booth bench, with my body supporting hers.  When we ate at BoBo’s earlier in the week, she had fallen to the right twice while sitting in the booth.

After the concert we had a nice time with the kids at their house, along with Daughter-in-Law Becky’s parents.  Mary Ann was sitting off to the side a bit since she needs a hard, straight-backed chair to keep from being trapped in the chair, unable to assist when she needs to get up.  I stood near her so that the conversation would include her, even though she said only a few words.

I need to ask the kids to confirm, but today seemed to indicate that Mary Ann has lost ground in the recent past.  I am beginning to accept the possibility that this is just the way it is now — that we have moved to a new normal.

When we left their house, we headed down to see the Plaza Lights.  Kansas City is a beautiful place for the most part.  The Country Club Plaza, built in the 30’s with all the buildings done in Spanish Architecture, is a wonderful spot.  There is a huge fountain on one end.  There are parking garages built with the same architecture.  There are horse drawn carriages, people walking the sidewalks.  There are lots of exclusive stores, most having very expensive merchandise.  The lights outline all the buildings and have been put up from Thanksgiving through Christmas for many decades.

We lived in an area a mile or so south of the Plaza for fifteen years.  Our children grew up there.  It felt wonderful tonight to be driving those same streets that had become so familiar.  I realized how much I miss the feel of a metropolitan area that has people walking about, families, young people, folks out walking their dogs, local ethnic restaurants, curved streets, tall trees everywhere.  I guess we just fell in love with Kansas City during those years there.  As we drove, Mary Ann admitted that she would still like to move back to KC.  There are a number of reasons that pretty much eliminate that option, but this is not the first time she has said that.  One of the reasons moving back is unlilkely is that the house we bought for $22,500 in 1972 was on the market a couple of years ago, listed at $310.000.  What is it they say, “location, location, location.”

All in all, today was a good day.  While there were signs of Mary Ann’s apparent decline, the joy of getting out, hearing Chloe sing, enjoying conversation, and seeing beautiful Christmas lights more than compensated.

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The meal was good.  The eating was not.  Mary Ann got some food eaten, but not very much.  She would let me cut the meat and break the dessert’s crust into bite-sized pieces, but, again, she would not let me help her by feeding the food to her

This public place was tonight’s Parkinson’s Support Group Holiday meal.  Since everyone there is either a Caregiver or the one with Parkinson’s, I hoped Mary Ann might be more willing to allow me to help.  Not so.  The meal was catered by folks who do a nice job on the food.  They also had extra servers, more than would normally be needed when using a serving line.  The extra servers helped those of us who were trying to carry plates for two and those whose dexterity is limited.

We sat across from former parishioners that we have known for many years.  He has had Parkinson’s much longer than Mary Ann.  We enjoyed the various conversations. I guess to be more accurate, i enjoyed them.  Having retired from a profession filled with hours of converations and interactions with others, retirement has put a crimp in my opportunities to talk with folks.  As a result, when any opportunity arises, it is hard for me to shut up!

While I always tested very well in the quanitative portion of the standardized tests, the verbal scores were not quite as high.  That seems pretty odd to me since my life has always been about words.  I always loved words.  I used them to get out of fights with bullies (it helped that when I was in elementary school I was among the tallest and strongest of the kids  — I am still the same height I was in the Sixth or Seventh Grade).  I loved learning to use big words, always making sure I used them correctly.  Some people express their sadness with tears, their anger with violent actions, their frustrations by acting out, their happiness by shouting for joy, I talk.  I think and analyze and process and then frame the feelings with large quantities of words that help dissipate the pent up nervous energy created by the feelings.

At the same time, I love solitude.  I can spend hours just soaking in everything about the moment and the space I am in and the thoughts that fill my mind, often bumping up against one another.  I love the periodic retreats that provide almost three full days of utter solitude, walking, watching the wildlife, gazing at the clouds, smelling the scents, reading, thinking, journaling.

I guess what precipitated the above diversion from Mary Ann’s challenges  to my love for words is the fact that I need the time out with others more than Mary Ann does.  It is part of my therapy.  I am usually pretty ambivalent when outings are approaching, wanting to stay home to avoid the hassles associated with going out.  But when I get to the gathering, I thoroughly enjoy the interactions and conversations.

Back to Mary Ann’s struggles with eating.  When I asked Mary Ann about lunch today, she said she wanted BoBo’s for lunch. The Food Network’s Diners, Drive-ins and Dives did a special on BoBo’s.  We didn’t really have time to go into the diner to eat (it is the size of a postage stamp), so we got take-out from a drive-in stall.  I have to admit that it was a bit of a relief that we did not have time to go in.  One reason is that I wanted to eat the food we already have in the fridge (my frugal streak).  The second reason is that I have a hard time watching Mary Ann eat when the soft fish sandwich with tartar sauce is squishing through her fingers, dropping on the table, her clothes and the floor.  There, I said it!  I am ashamed to admit it.  Here she is struggling to deal with all she has been through, just trying to enjoy food that brings her pleasure, and I am so petty as to let a little messiness disturb me.

If we had had time, we would have gone into the diner to eat.  At least I usually don’t let my aversion to the messiness keep me from taking her out to whatever restaurant she chooses.  I am trying here to salvage a little positive self-image after admitting to such pettiness!

Mary Ann slept well last night — good for both of us.  She went to bed a little late tonight.  Let’s hope for a night filled with sleep!

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Mary Ann had a pretty good day today.  Zandra, the Bath Aide, gave her a shower,  washed her hair and got her dressed.  Zandra comes on Monday and Wednesday mornings.  She had had a decent breakfast, needing only a little help.  She napped for the rest of the morning.

She ate at normal lunch, half sandwich, chips, Pepsi and a cookie before we left for her Dermatologist appointment.  All was well there.  she was able to communicate pretty well.  We were in the territory of G’s Frozen Custard, so there needed to be a break for a treat.  With some difficulty, she managed to eat the ice cream without help.  I always order hers in then next larger cup, double cupped to make the eating easier.  The larger cup provides more space to get the ice cream (or whatever) on the spoon before it slides over the edge.  Since her hands are stiff, her fingers hard to control and her hand muscles strong from the dyskinetic movements, her fingers could pop through one layer of Styrofoam cup (learned from experience), I always ask that it be double cupped.  Any thing served in thin clear plastic cups needs to be double cupped also.  Otherwise her hand squeezes it too hard, sending the liquid over the lip and on to her clothes or the floor.  A little anticipation can help lessen the likelihood of messy problems.

After a couple of errands, we headed home.  Mary Ann ate a good supper.  A Volunteer stayed with her while I did some emailing,  Actually, I dozed a bit in the office chair at the computer.  The nights have been a little short and the mornings a little early lately.

She is in bed now and seems for the moment to be resting.  I see some movement, but, hopefully, she will fall asleep soon and have a good night.  That would be good for both of us.  By the way, the night before last, as she was getting into bed, she said that she was glad the raccoons had left.  She was referring, of course, to the ones she has been seeing in her bed in the past.  I certainly hope the hallucinations remain at bay for a while.

It continues to be encouraging to see small improvements after all the losses incurred during the hospital stay.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.