Last night was pretty tough — up and down all night long, then up this morning at 6:45am.  The same is happening as I write this and has been going on for two or three hours.  There is no point in my trying to head in to bed yet since the activity is constant at the moment.  She has been climbing in and out of bed for no apparent reason with only minutes in between. 

While, again, it is a function of the disease, it is no less frustrating.  The time that I have generally claimed as my own in these late hours after Mary Ann goes to bed is coming to no longer be my time.  Tonight I set upon having some spiritual renewal time.  There is a podcast of  the Saturday worship service at the Taize Community in France.  The music is the sort that draws the participant in with a beautiful simplicity.  The readings are done in at least three, often more, languages.   There is a calm and peace that seems to include in community people like me, listening from thousands of miles away. 

I had first read a weekly poetic devotion by Fr. Ed Hayes, whose writings have had much impact on my personal Spiritual journey.  The reading suggested lighting a candle.  I haven’t done it in a very long time, but I pulled out a votive candle, placed in on the worship center, a cabinet built precisely for that purpose, with stained glass inserts in the doors.  I lighted another candle in a tall walnut candle stand made by my Dad, many decades ago.  Next to that candle stands the Shepherd’s Staff made by a parishioner and given to me at my retirement, a symbol of my forty years of ministry. 

A small iron Celtic Cross stands on the cabinet next to the votive candle.  Joining the Cross and candle on the worship center is a large ceramic bowl with lettering and symbols painted on by the other Staff members and again, given at my retirement.  The words are the summary of the congregation’s sense of purpose, “Grow in Faith.  Share Christ’s Love.”  The bowl is a symbol of Baptism, in our tradition, understood to be that first encounter with the Grace of God, an act of unconditional love by God, initiating relationship. 

One other item on that worship center is a simple memento of a long-standing friendship with a small group of parishioners from the first parish  I served as pastor.  It is a small beveled glass case with found items, pine cones, dried weeds, parts of plants, stones picked up on a trip together to Alaska many years ago.

With the candles and the light from the computer screen only,  I began the Taize worship.  As I settled in enjoying the sensations that come with such an experience, the monitor screen that keeps me aware of what Mary Ann is doing as I sit here, revealed the activity.  Since she is at risk of falling when she gets up, needs help to use the commode, to manage the cup of ice water next to her bed, to turn over in bed, her activity demands my participation. 

I have stopped and started the worship a number of times, getting more frustrated each time, resenting the loss of the freedom to enjoy the experience.  There is a odd sort of irony, that the very thing that helps me maintain a healthy equilibrium in caring for Mary Ann, is doing the opposite tonight. 

As the Neurologist allowed, I have just this evening increased the dosage of Seroquel, which is the medicine that both reduces the hallucinations and helps with sleep.  The last increase was not enough.  It is too soon to assess the effectiveness of this increase.  Certainly, the hallucinations have not decreased yet, they continue to be on the increase.  Just moments ago she told me to be careful of the little girl when I was adjusting her sheet.  This morning when she first got to the table for pills and breakfast, as soon as I turned on the light, she tried to show me the blood on her hands.  I think she believed it to be from the raccoons or whatever biting her.  There was, of course, no blood. 

Last night’s post mentioned my need for better choices in the area of diet and exercise for the sake of this Caregiver staying healthy.  Last night, today and tonight have revealed again the difficulty of following through with such plans.  When there are nights like these that string together, it is just survival mode.   A steady pattern of changed behavior seems completely out of reach.   I am still reading the book offering helps for improving the diet part of the problem.  Maybe some changes can be folded into our days. 

As Scarlett would say, “I’ll think about that tomorrow.”

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A Volunteer spent a portion of the morning with Mary Ann today.  I had a chance to head to a spot that often provides some quiet renewal time for reading, meditation, and watching for interesting birds.

This morning provided an odd combination of wildlilfe and human activity.  I enjoy sitting by a large reservoire to do some reading and thinking.  When I arrived in my spot, the weather was great.  I opened the windows, got out the binoculars and a devotional book.

There were lots of flying insects that surrounded and entered the van through the open windows, especially flies and mayflies.  I decided that since I was in their territory, I would not swat them and spend my limited time chasing them.  Actually, I realized that their presence was what was providing me with the aerial show by large numbers of Barn Swallows all around me. There were clusters of Killdeer that came noisily through at intervals.  I spotted some Cedar Waxwings in a nearby pine tree, along with lots of Kingbirds.

There were a few gulls on the water and flying around.  Later when I moved to the area below the dam, gulls were feeding at the overflow outlet where a loud rushing torrent was being released.

The Human entertainment included a fisherman not far from me.  There were lots of powerboats on the water.  There was one pulling a young woman who was tubing.  Then came the large, powerful speed boat with three young men on it.  It took a while to figure out what they were doing.  First of all, it became clear that the large objects across the back of the boat attached to a high bar, were loudspeakers producing ten or fifty or a hundred thousand decibels.  So much for the meditation.  It was the sort of music young people enjoy and old people can’t stand!

Then they started doing what they had come to do.  They were ski boarding — not just following behind the boat, but moving back and forth doing somersaults in the air.  It turned out to be genuinely entertaining.

As I watched all that activity, there was a rumbling off in the distance that got louder and louder.  I looked up at the dam, and there coming across were motorcycles — not just a few but what I would imagine was somewhere between two and three hundred of them in single file.  They were followed by about half as many cars of all sorts and colors and vintages.  In terms of my spirituality, I am something of a contemplative.  Not this morning!

After spending about as much time as was available to me, first next to the lake and then below the dam in a wildlife area, I headed up to drive across the dam. I had spotted what appeared to be a juvenile American Bald Eagle up above the dam, so I thought I would check it out.  I was treated to about fifteen minutes of that bird’s activity.  I have never before seen an eagle flying in place, sort of helicopter style.  This young Eagle did so more than once.

As I slowly continued across the top of the dam, I could see a dozen or so sail boats on the lake.  The day was exceptionally beautiful, and the white sails moving across the water added still more beauty to the experience.

As I left the lake and headed on a gravel road back to the highway, I was treated to a group of wild turkeys strutting around on the top of the hill by the road.

I was grateful for a good morning.  The day before had included an outing to a smaller lake with Mary Ann, but the night had been another restless one.  Yesterday, for some reason I had gotten in my mind that I could be more assertive in keeping us active, doing some self-care by exercising, maybe squeezing in some stimulating outings.  The sleepless night had revealed a certain futility in those hopes.

Yesterday, we both thought we had missed the Parkinson’s Symposium in Kansas City.  Mary Ann had indicated that she was not interested in going because it would demand our leaving here very early in the day, she dislikes large group activities, and she doesn’t get much out of the presentations.  I had thought about trying to go anyway, since I find them so valuable.  When I thought we had missed it today, I realized just how much I had wanted to go.  The good news is that the Symposium is next Saturday.  I decided to be assertive about our going and added the treat of checking with our KC friends about celebrating some birthdays at lunch after the Symposium.  At the moment, that is the plan.

All in all, it has been a weekend that has included some pleasant moments and some not so pleasant moments.  I guess that is the way life usually goes, no matter one’s circumstances. As always, tomorrow is another day.

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