The hallucinations/delusions/dreams mixed with reality finally calmed enough by about 3am this morning for her to get to sleep.  The good news is that she stayed asleep long enough so that I could get caught up.  I got up a little before 10am.  She slept on until almost noon.

While she slept this morning, I filled a couple of feeders and then sat inside watching the activity outside on the deck, at the bird feeders and in the waterfall area.  The experience reminded me of pictures of folks going through an aquarium that has an underwater tunnel allowing them to watch the fish from inside their environment.  I sat in my little box (made of ticky-tacky??) as an observer, while they were foraging out in the open.

It was better than watching a huge high definition television screen.  There was a new character who joined the cast this morning.  It took me a few minutes to be sure what that flash of color was.  It was a Baltimore Oriole in search of food.  I had hung a Hummingbird feeder, an Oriole feeder and I had put out a dish of grape jelly, with little hope of actually enticing an Oriole to come by and spend some time.

The Oriole seemed a little confused.  He fluttered back and forth toward the glass of the sun room.  He moved to one of bushes next to a side window in the dining room and flew at that for a little.  Then he fluttered over to the hummingbird feeder and hung pretty much upside down, apparently managing to get some of the sugar water.

Then he moved over to the rail just below the Oriole feeder and not far from the dish of jelly.  Surprisingly, he just did not manage to spot the jelly, just two feet from where he was standing.  He fluttered up to the Oriole feeder and did not drink any of the orange sugar water there, but found the little pockets of jelly around the edge of the feeder.  By the way, I am using the word “flutter” very intentionally.  It was not just flying he was doing, it was what looked like very haphazard fluttering of his wings, allowing him to fly in place while trying to figure out where and how to land.

After Mary Ann finally got up, she ate a normal breakfast (she had not eaten supper last evening).  She was very subdued — almost completely non-verbal.  After eating, she agreed to head out in the car to do a few things.

Of course the first stop was PT’s for a cup of coffee, a single origin Ethiopian this time.  Then we went to a grocery that has a large seasonal garden center set up on their parking lot.  There we found a favorite hanging plant with small deep blue blossoms (sorry, no tag on the plant with its name).  Rather than hanging the plant, I put it right outside the lower window next to the sliding glass door to the deck.  That is the spot the Robin used for staging his attacks on his reflection in that glass panel.  The two spots on the deck on either side of the sliding glass door have provided the bonus of serving as perfect display areas for enjoying flowering plants from inside and outside.

After getting the plant (for Mother’s Day), we went to the farm produce store north of town to get asparagus.  We usually get three or four pounds each time we go since the season is fairly short.  The only other item they had that was from their own fields was Rhubarb.  I couldn’t resist it.  Mary Ann’s Rhubarb pie is so good that given the choice between a piece of that pie and a Turtle Sundae from G’s, I would eat the pie.  Those of you who know me well understand just how good that pie must be. The problem with getting the Rhubarb is that there is a long way between a handful of Rhubarb stalks and a piece of that pie.  Whether that long way will be traversed any time soon remains to be seen.

By the time we were back in town, Mary Ann was ready to have lunch.  I had only had a banana for breakfast, so I was anxious to eat.  We went to her favorite, Bobo’s, for a cheeseburger and fries.  I had the more healthful fish sandwich, deep fried and slathered with tartar sauce. Mary Ann was able to handle the burger and fries with little help.

After lunch I stopped at the Wild Bird store to pick up a couple of things and get some lessons on Oriole and Hummingbird feeding.  The message was, throw out the old sugar water and make new.  That is what I did when we got home.

Mary Ann had started dozing in the car, so as soon as we got home, I got her in bed to nap.

While she was sleeping and after I finished redoing the feeders, I sat and watched the big screen nature channel provided by the sun room glass.  One thing that I had noted when doing the feeders was that something had been at the grape jelly.  After a time of watching, the Oriole returned and headed directly for the jelly.  I hope he brings friends.

Mary Ann has slept straight through supper (I tried getting her up, but it didn’t work).  At about 9pm I got her changed into her pajamas and and the nighttime pills taken.  She still did not want to eat.  She finally stirred a little about fifteen minutes ago (about 10:40pm).  I sat her up and asked if she wanted something to eat.  She chose a single serving container of applesauce.  It turned out to be a bit of a new experience.  As I put the second spoonful in her mouth, she seemed to resist.  I went a few feet to get a nearby napkin.  When I turned back around, she had fainted and was completely out, gratefully having fallen to the side, still on the bed.

I got her back up into a sitting position after she came around and continued to feed her the applesauce.  She fainted again.  This time I was sitting next to her on the downhill side, so I was able to hold her up.  After she came around again, I resumed feeding her the applesauce.  With only a spoonful left she went out again.  This time I got her down to the pillow, moved her around into a comfortable position, where she is at the moment.

I am concerned that the daytime sleeping a third day in a row is fueling a switch between day and night for her, sleeping in the daytime and agitated at night with hallucinations, delusions and dreams confused with reality.  I am not sure what to do about it, since when she sleeps during the day, it is not just a light sleep from which she can be kept awake by urging activity.  She just shuts off.  She can’t stay awake.  The converse is also true.  When she is awake at night, she just can’t make herself sleep and not dream or hallucinate or have delusional thoughts.

I am very grateful for the pleasure and the calming that comes with sitting and watching the activity outside those panels of glass in the sunroom.  It does not seem to get boring since there is always the hope of some new cast member joining the regulars, the Mallards, Mourning Doves, Grackles, Robins, Blue Jays, Cardinals, House Sparrows, House Finches, Cowbirds and Fox Squirrels.  The Possum only comes at night, so I have not enjoyed watching him, just dumping the Possum pellets out of the ground feeder in the morning.

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She wondered if Daughter Lisa was looking for an apartment for her and the girls.  I realized quickly that there had been a dream/hallucination/delusion at some point about our Daughter and Son-in-Law.  Mary Ann was convinced that Denis had asked for a divorce.  When I explained that they were solid as a rock, happily married and there was no divorce talk there, she said she had wasted a lot of time with her stomach in a knot.

Then came a part of the dream that she even thought was pretty silly.  There were Mormons who were trying to take over Denis’s Dad’s farm.  I guess they were some of his brothers, who were trying to talk him into becoming Mormon.  I have to say I am at a complete loss to figure out from where the scenarios for some of the dreams/delusions/hallucinations come.  Many seem to simply be misfiring neurons that use bits and pieces of material residing in distant corners of the memory banks.

When she insisted on getting up early, I knew today would be a difficult one.  I thought there might be some napping, freeing me to do other things.  She was up most of the day, confused for the majority of the time. When she is alert and just on the other side of lucid, it is more difficult for me to manage than many of the other challenging times.  Like many who are retired some days it takes me a while to figure out what day of the week it is.  I did not try to count how many times she mentioned the day and got it wrong or asked what day it was. More than once, she thought it was Easter.

There were things (invisible to me) one place or another in the house, things that needed explanation or needed to be picked up or dealt with in some way.  She stood up dozens of times to do something, often not knowing what.  I could not leave her side for more than minutes. It helped a little that there was an NCIS marathon on television.

She did eat pretty well. Very early this morning she started snacking since she had eaten very little at supper last night.  There was tapioca at 3:30am, applesauce at 5:30am and chips at 6:30am or 7am.  She ate her normal breakfast and lunch (with ice cream), and ate lots of the sausage, potatoes and onions I cooked for supper. It was her idea to get the ring of sausage the last time we went to the store.

While I did feel sort of tethered to Mary Ann’s side today (she doesn’t much like my hanging around and jumping up with her, always asking where she is going) there was a treat that helped keep me interested and engaged in the day.

We woke up to between five and six inches of snow.  Since the construction began, the birds have not been around.  The feeders had to be taken down so that they could work on the deck. The snow brought the birds back, by the dozen.

The waterfall was a draw.  There were birds of one sort or another in it most of the day.  There were still three feeders hanging from a stand in the back yard next to the waterfall.  There were some places that because of the overflow of water had hundreds of sprouting sunflower seeds.  A few birds managed to find there way through the snow to a spot in the back yard.

At the front of the house where some small feeders are located by and on the window, birds were busy.  The street in front of the house was filled with Robins drinking the melting snow.

We have a very good quality speaker in the house with a microphone outside, the wire coming through at the corner of a casement window.  When that microphone is on, the sounds of the birds are full volume inside the house.  The speaker is made for that purpose.  It was a present from our kids.

With probably a hundred or hundred and fifty birds spread among the trees in the back yard and the neighbors yards, the bird songs were constant all day long.  The birds came in shifts to the options, bird feeders and waterfall.  There were a lot of Starlings, certainly not a favorite.  There were Grackles and Robins and Mourning Doves, an occasional Bluejay, Brown Headed Cowbird.  In front there were sparrows, finches, a Cardinal and more Robins.

There was one bird represented in the back yard that brings back wonderful childhood memories.  Lots of folks are not fans of this bird because it can sometimes be found in huge flocks that can be a little overwhelming.  It is the Redwinged Blackbird.  Often, the color visible on the wing is actually yellow.  Redwinged Blackbirds are often found in swamps, sitting on or among cattails.

I spent some of my happiest times as a child, playing at the swamp a short block from the house.  I can still picture that crystal clear water with the cattails all around, filled with huge water bugs that had what looked like two large oars, one on each side of their bodies, tadpoles, and dragon flies everywhere.  Mom sometimes came down with the willow switch to bring me back home, fearing that I would fall in or hurt myself in some other way.  That did not deter me from my adventures there.  Once I made the mistake of describing the muskrat I saw down there.  Mom and Dad decided it was probably just a regular rat.

The cattails at the swamp were filled with singing Redwinged Blackbirds.  The moment I hear that sound, I am back at the swamp, feeling the wonder and joy and peace that I found there.  I only sctually saw and identified one Redwinged Blackbird in the yard today.  I heard more.  They were there all day long, singing often enough and loudly enough that I could hear them through the constant squeeking of the Starlings.

Late in the day, Mary Ann settled for a while, napped with her face on the little table in front of her.  She would not let me help her move.  During that time I was able to get the driveway and sidewalk shoveled.  Still later, I got the deck shoveled off and spread large quantities of oil type Sunflower seeds on the deck and next to the waterfall in hopes that there will be more visitors tomorrow, coming to eat.

Mary Ann’s three childhood friends arrive from Northern Illinois tomorrow evening.  Tonight as I was helping her into bed and giving her the night time pills, she heard them arriving.  I reminded her that it was tomorrow night that they were coming.  I hope she rests well tonight.

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There are just a handful of us, usually four, who gather on the back deck or in the downstairs when the weather is uninviting (this is Kansas).  We begin at 7:30am each Wednesday morning.  With the disjointed and erratic sleep patterns in our household, caffeine is a great gift from God! Hot coffee is the delivery system of choice — yes, even in Kansas on hot summer days (not many this year).

Our central purpose for that two hours is to grow in our ability to engage the presence of God midstream in our days, no matter what we are doing.  We are a little slow.  We have been at this for probably seven years now and haven’t yet gotten it worked out.

That Spritual Formation Group time is one of my life preservers.  It is not a therapy group.  We have a book with readings and reflections to spark our thinking.  We do not understand life to be divided into compartments, one sacred and the other secular, or one physical and one spiritual.  We understand life to be one thing, and God to be its source and sustenance.

For whatever reason or reasons, this is a particularly unsettling time for me.  I am grateful for the lifesavers that are available to me.

One of the lifesavers is the sanctuary that is emerging behind our house.  The deck has always been an inviting place.  While it is probably no more than thirty feet from the back of the deck to the wooden privacy fence separating us from the next subdivision, there are now many good sized trees filling that space, some that we planted.  The trees and the view to either side extend pretty much without obstruction for the equivalent of at least a couple of blocks.  The fence behind us is up a fairly steep incline.  The combination of that hill, the fence, and the trees create the feeling of seclusion.

The multiple bird feeders and those who dine at them add to the sensation of an outdoor sanctuary in the woods.  Then there is the waterfall.  Four levels cascade over well placed rocks, each level adding to the volume of that wonderful sound of falling water.  That sound covers some of the people and vehicle sounds, feeding the sense of seclusion.

Some friends, Doug and Marikay, brought over additional plants for the wetland area created around the waterfall.  They also brought an old branch and placed it on the gravel base among the plants and rocks.  I am intrigued by that old branch.  It is certainly old — old enough to have patches of lichen covering it. The color of the lichen matches the lichen on the rocks and the color of the needles on the cypress tree that hangs over that part of the waterfall.

One of the things that intrigues me about the branch is the metaphor it provides for life, certainly the life we are living.  The branch is weathered and gnarled and without symmetry.  Any old farmer would have long since cut it up for firewood or burned it in a brushpile.  By the way, I like old farmers.  There is an old farmer living inside me — along with a young rebel.

With eyes to see it, there is an elegance and beauty that transcends symmetry and smooth surfaces and orderly shapes.  I wonder what that branch has seen, who has stepped over it, or climbed on it, or made its nest in it, what has marked its territory on it.  I wonder what stories it could tell.  Life as it is really lived is weathered, gnarled and without symmetry.  Trying to make life pretty and pleasing to the eye, wastes precious time needed to live it.

Our life is not pretty.  It is often smelly and ugly and messy, and certainly without a shred of orderliness.  It is also beautiful, deeply fulfilling, bursting with meaning and purpose, often emerging from the very ugliness itself.  I would not trade our cracks and crevasses and patches of lichen.

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It changed my whole perception of reality.  It only took thirty minutes to do it.  Nothing has looked the same since.  “A Time to See” is the name of the educational film made by Reinholdt Marxhausen and published in 1985. 

Reinholdt Marxhausen was extraordinarily gifted in the visual arts.  He saw things others could never have seen had he not pointed them out.  There were bottles on the window sill in his kitchen over the sink.  They were just bottles — not to Reinholdt Marxhausen.  They were an adventure in light and shadows and colors and darkness, changing character at different times during the day, different times during the year. 

Alzheimer’s Dementia has stolen from him his extraordinary gifts in the visual arts.  His impact has continued in many of his students and all who have known him.  I only know him through friends and that film that made such a lasting impression on me. 

What brought the film to mind was writing the sermon for the ordination of Karl into the ministry.  Karl has been a student where Marxhausen taught.  Karl was influenced by the legacy of Reinholdt Marxhausen when he was the the peak of his ability. 

For me, the center of the legacy is the recognition that what a person sees depends on his/her ability to look past the object to its relationship with what is around it.  The capacity to really see, allows the most ordinary found items to become extraordinary as shadows and colors and shapes and textures suggest something far more than ordinary. 

There is a commonality about the story line in the lives of Reinholdt and Karl and PeterT (author of this blog).   Reinholdt has seen his ability to make art diminish as Alzheimer’s has taken its toll.  Karl’s mother died at the age of fifty.  At one point she was diagnosed with Pick’s Disease, a form of Alzheimer’s.  Karl’s Grandmother died of what appeared to be a form of Alzheimer’s Dementia.  My wife, Mary Ann, has been diagnosed with Parkinson’s Disease Dementia. 

The objective realities in our lives hardly present beauty to the beholder, at least at first glance.  There is a painful ugliness in the world of Dementia whatever the specific diagnosis.  Karl and I have learned from Reinholdt that it is a time to see.  It is time to look at objective and sometimes very painful realities and see more than the obvious.  We need eyes to see what lies behind, above, below, and beside what we have experienced and are experiencing.  We need to see how what lies before us and around us looks from different angles.  We need to see the colors and shapes and textures, listen to the sounds of what we encounter.  We need to allow the possibility that there is more than meets the eye lurking what we have and are going through. 

There is beauty to be found, there is meaning to be found.  It can be seen if we have eyes to see.  It is often said that beauty is in the eye of the beholder.  I don’t suppose beauty really exists until we add the capacity to see it, to hear it.  If there will be beauty and meaning in our lives, especially those of us who deal with dementia, the beauty will come from within us as we look at what we are experiencing and see it for more than what first meets the eye.

My life has been enriched by taking time to really see what is around me.  Karl has seen what his Mother and Grandmother with through and has grown a gentle strength and wisdom beyond his years. 

Having said all of that, I am now struggling with finding the beauty in three hours of trips into the bedroom every few minutes to deal with one need or another, moments ago (1:30am) the need for some food, followed by the need for some water, after multiple turns in bed, trips to the commode, adjustments of the sheet and blanket and a few concerns with the wildlife in the bed.  Right now, I would find beauty in a wife finally getting to sleep!!

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We are now into the later stages of Parkinson’s and moving into Parkisonson’s Disease Dementia (a Lewy Body Dementia).  Traveling is tough.  We can’t really plan much of anything since we never know from one hour to the next whether Mary Ann will crash and fold for a couple of hours of napping, have a major intenstinal event, or need a trip to Baskin and Robbins, or Sonic, or DQ or Sheridan’s.  Getting very far from medical facilities that can handle the complexities of her convergence of medical problems, provides a strong disincentive to venturing very far. 

To a certain degree, we are trapped by the Parkinson’s.  The dream of that train trip across Canada appears to be left to the world of fantasy.  My dream of a log cabin in the country is not an option, although I doubt I would be willing to do the work necessary to take care of such a place anyway.  That trip to the Snowy Mountain region of Australia is out of the question. 

There are all those other retired folks who travel and dine out and go to shows and concerts.  We have never so much as seen the Grand Canyon.  Just watch cable television for a while and look at the beautiful, exciting places to go and things to do.  There will be no dinner-dances (gratefully, since I can’t dance).  There will be no treks into the woods or wetlands for rare bird sightings. 

What are you missing?  What are the things you planned to do before the Chronic Illness joined your family?  Are you going stir crazy looking at the four walls of your home, or the inside of your car as you make short local trips, or the waiting rooms of multiple labs and doctors offices?

I have to admit that at the moment, I do not have identifiable feelings of resentment about what I am missing.  I can only speak for myself on this.  I will not presume to speak for Mary Ann. 

We have had some adventures in our life together, however low key they may be.  We have toured England, the Netherlands, Austria, Switzerland, Belgium.  We have cruised the Virgin Islands and traveled to Denali in Alaska and cruised the coast to Vancouver.  We have skiied in Colorado.  There was also that trip to DesMoines — the notorious diversion from Colorado triggered by uncooperative children in the back of the station wagon. We have made it to see Santa Barbara and the Carolinas. 

All that is not to impress you with our travels.  For over forty-three years of marriage, that is nothing to brag about.  That is not the point.  The point is, as much as we were in awe of the beauty we saw, it did not give our life meaning and purpose.  What we saw was interesting greenery, colorful flowers, varied topography, beautiful structures.  Sometimes we stayed in rooms with nice looking decor, sometimes in very ordinary accommodations. 

When a Volunteer comes to stay with Mary Ann for a couple of hours, I sometimes head to a nearby lake with some of the most beautiful gardens imaginable, filled with ponds and waterfalls, colors dramatic enough to take my breath away.  I can head out to places where Eagles are nesting and water birds are migrating by the tens of thousands.  Within an hour and a half of here we can find restaurants as good as any anywhere and take in the occasional show.  When all the pieces fall in place, I can travel to a spot a few hours away and spend two or three days in utter solitude, hiking and reading, observing wildlife, feeling the warm sun and the soft breeze on my face, the rustle of the leaves, sunsets that fill me with wonder. 

Yes, I am missing wonders that are spread all over the world.  What I am not missing is the capacity to experience the marvel of all there is to see as the sun and the moon and the stars illuminate the part of the planet in which we live.  The topography (admittedly, pretty flat in this Midwestern location), the flowers, the birds, the trees, the wildlife, restaurants and stores and movie theaters are here to be experienced. 

More than that are people of all sorts, with stories to tell.  In fact, through the wonders of technology, I can interact wtih people from all over the world.  In our online group of Spouses of those with Lewy Body Dementia, there are people from New Zealand, from Italy, from Wales, from Canada, from all over the this country.  There are children and Grandchildren to be celebrated.

I guess I am just not sure I am missing anything so important that it needs to make me sad.  Sure, if circumstances allowed it, we would take that train trip across Canada or see the Grand Canyon, I would venture off to Australia, live in a log cabin in the country, but if none of that ever happens, I will not despair at all that I have missed in life.  Life has been full to the brim.  More than I ever thought to dream has come to be in one way or another. 

Again, I have to ask, what would you like to experience were it not for the commitment to Caregiving that shapes your life now and limits possibilities?  How does it make you feel no longer to have the option to realize those dreams as you had imagined them?  What do you do with those feelings?