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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I as sitting on the deck enjoying a beautiful evening after Mary Ann went to bed.  The video monitor was out there with me.  She started getting up, so I went in to see what she needed.  She asked if the police were gone.  As confused as I usually am when things come out of nowhere, I asked what they were here for.  She said there was a break-in and the copper tree had been taken.  That is a large metal wall sculpture that hangs in our living room.  Mary Ann was looking at the bedroom wall when she said it was missing.

I told her that the police had not been here, that she must have been dreaming, that there had been no break-in, that I was here the whole time, and that the tree is still hanging in the living room.  After we talked a while, she wanted to go out to the living room to see the tree.  We did so.

After getting her in bed again, I folded the chair and brought the monitor in from the deck and came back to the computer.  She started moving again.  This time she said she didn’t want to go to the hospital.  I asked her if something was wrong that she thought she might need to go to the hospital.  She said “they” told her to get dressed.  Then she said, “You know we were broken into.”

She decided to use the commode, but when she got on it, she didn’t need to use it.  She started talking in that fast sort of jibberish, but I recognized the word “organization.”  I repeated the word and she confirmed that is what she said, but there was nothing connected to the word that either of us could identify.  When I lifted her from the commode to transfer her back into the bed, she fainted.  After swinging her on to the bed, I eased her into a lying position.  I had to try to get her pajama bottoms back up when she came around and was awake again.  She wanted to go out into the living room to see what was going on.  We went out there and she fainted again.

I asked her if she wanted to sit in her chair in front of the television.  I thought that just maybe the television and living room setting might help her hang on to reality until she was tired enough to fall asleep and get through the REM cycle (where the dreams occur) into deeper sleep.  Before I could get her to her spot, she sort of fell asleep in her chair.  It was apparent that she would not be able to sit up on her own.

I got her back to bed.  Since then she had another dream that I was lying on top of someone.  All of this has happened in the span of about a half hour.  At this rate it will be an impossible night.  At the moment she is lying in bed, facing the television watching her very favorite program “House.”  My hope is that she will remain engaged in it for a while, just giving me a break so that I can finish this post.

Last night was better than the night before, but not wonderful.  She got up early and I set her up in front of the televsion so that I could get a little more sleep.  After I got showered and dressed. we took care of her pills, breakfast, got her dressed.  During that time, she seemed reasonably connected.  We talked more about yesterday morning’s angry accusation.  She seemed to have gotten past it, at least at that moment.

Shortly after breakfast, she asked to lie down.  She slept for three hours or so.  During that time friend Tim came by with a vase of irises for her.  Tim is husband to Volunteer Jan.  When Mary Ann woke up, she had her usual, fairly small lunch.  During the last of the time she was eating, she needed to use the bathroom.  After we returned to the table, I got her into the dining room chair to eat the last of the chips and have some Pepsi.  Then she just sort of switched off.  It was almost as if she had fainted but not completely.

… break to respond to Mary Ann.  She now thinks she is in the hospital, wondering what they are going to do to her.  Watching “House” may not be helping, but she was concerned about the hospital before that program came on.  She wants the television left on.

…back to lunch time today.  Since she just switched off, I took her back to bed.  She slept a few more hours.  She got up long enough for supper, but ate very little.  Neither did she want to go out for the Blizzard of the Month at Dairy Queen (Buster Bar Blizzard, fudge and peanuts mixed in ice cream), nor did she even take the offer of ice cream from the freezer.  Very soon, she wanted to go to bed again.  She was quiet for about an hour before the living dreams fired up.

Since she has slept so much today, she may very well be up and active most of the night.  I dread that thought. (I just made a trip to help her to the commode.)

On the positive side, I got some devotional reading done this afternoon as I sat on the deck.  Again this evening I had some more quiet time to relax on the deck.  Much of the time I was out there, the Mallard ducks were sitting in the waterfall.  At one point there was a little drama as the two all of a sudden high tailed it off one way as fast as they could waddle.  Soon there was another Drake coming from the opposite direction and heading after them.  The next time I went out there was a hen by herself in the waterfall.  By the way, the ducks, especially the hens, are almost completely invisible when they are in the waterfall and the greenery and rocks right around it.  Even though they are no more than twenty-five feet away and I know they are there, I need the binoculars to differentiate the hen from the background.

The Bluejays and Grackles are constantly busy, with doves and the occasional Cardinal, Robin or Sparrow joining in the activity when I am out there.  There is not much variety of birds, but the ones that are there are entertaining.  Again, there was a great breeze growing into wind at various times.  The sky was bright and blue with a few wispy clouds. The trees are almost in full leaf.  The green of the leaves and the newly mown grass has that spring vibrance.

…there she goes again.  Just a Tums.

At the moment, as I write, the window in my office is open so that I can enjoy the sound of the wind, the cool air coming in the window and the fairly mild episodes of thunder and lightning.  So far very little if any rain has fallen. The volume of the thunder is increasing, as is the number of lightning flashes.

…another Tums.  Television off.

I will finish editing and get to bed in hopes that it will help that I am in the room with her — I doubt it.

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Stress sometimes produces odd markers.  My stress marker apparently is clenching my teeth.  It is a bad idea.  I ended up at the Dentist’s office while Mary Ann was in her Tuesday morning group.  The good news is that the pain is apparently not signaling an abscess.  No root canal!  Yeah!  The bad news is that I am wearing though the surface of my teeth, even some crowns.  It does not bode well for the future.  There are likely to be expensive sittings in a dental chair coming at some time.  For now, a night guard is the weapon of choice for trying to stave off major work for as long as possible.

While there are some obvious stress producers in our current situation, I suspect the problem would be the same no matter what the source of the stress.  The threat of many thousands of out of pocket dental expenses is a strong motivation to use the night guard regularly.

Today was a better day for Mary Ann.  She slept very well last night.  She was alert and participated in her Tuesday morning group.  Volunteer Scheduler Mary took us out to Boss Hawg’s Barbecue for lunch in honor of Mary Ann’s (5/15) and my (4/14) birthdays.  What a treat!  Mary Ann ate lots.  She needed help after a while, but she stuck with it until the food was almost all gone.

Hospice Nurse Emily came by this afternoon.  Mary Ann’s vitals were all fine, but her blood pressure was low this time, 108/64.  Emily commented that she never knows where Mary Ann’s BP will be when she takes it.  Mary Ann is always an interesting and entertaining patient to any health professional who takes care of her.  She is never boring!  I can’t remember what exactly it was she said when getting up from the toilet stool once today, but it was one of her smart aleck comments that brought laughter from both of us.

I talked with the Hospice Nurse about my considering returning the Midodrine to the meds to see if our quality of life might return to something closer to what we had six months ago when Mary Ann took it daily.  It is the med that raises her BP to levels that are not good in the long run.  Since quality is more important to both of us than quantity of days it seems like a reasonable option.  It is within the range of options acceptable to the Cardiologist.  When I talked with Mary Ann about it later on in the day, she said that she didn’t really want to change anything.  She feels it is all working well now.  Looking at it from my direction, it doesn’t seem that it is working well.  On the other hand, it is her body into which the meds are going.  For now, I won’t press the issue.

There were a couple of deck times today and another chapter in the book on St. Patrick’s morning prayer.  This chapter, “Christ Before Me” as well as the one I read yesterday, “Christ Behind Me” have both been thought provoking and comforting.  Maybe more deck time and devotional reading will help reduce the teeth clenching.

Parish Nurse Margaret stopped by with some fresh asparagus from her garden, which I added to the bratwurst and sweet potato fries we had for supper.

All in all, today the scales balanced in favor of clarity and good communication.  There were some times of confusion, but they were less prominent than the last couple of days.  Mary Ann has been especially restless tonight.  It is very late and she still seems to be awake and moving around.  While that does not bode well for tomorrow, tomorrow will speak for itself.

It just happened so suddenly. Volunteer Deb arrived for the evening.  As I was getting prepped for heading out, Mary Ann got up and walked into the kitchen.  Deb was with her, as was I when she fainted.  We got her in a chair, then into her transfer chair.  She immediately popped up again, without the brakes yet set.  We got her to her spot by the little table at which she sits in front of the television.  She stood up again.

This time she responded that she wanted to go to the bathroom.  Deb took her while I was still there.  When Mary Ann came back to the Living Room, Deb said she had been looking for her diamond.  I pointed out that it was on her finger.  She popped up again needing to do something she tried to describe but it just didn’t compute.  Then moments later she popped up again and just stood there needing to do something but not sure what.  She fainted again. Deb, of course, was right there with her hand on the gait belt (Deb is a Nurse).

She popped up again. I asked Mary Ann if I could bring her something when I was out.  That is our code for getting her ice cream.  She said, “garbage bags.”  I asked her what she meant, what garbage bags.  She got angry with me for not knowing what she was talking about.  I asked her if she would sit down for Deb since she had been fainting.  She reacted angrily and sat down.  There was nothing in the air, any former conversation, anything in the immediate or recent circumstances having anything to do with garbage or garbage bags.  She responded as if I was just being difficult on purpose about the obvious matter of garbage bags.

Recently, the hallucination/delusion/dream  mixed with reality has been a constant undercurrent, surfacing at various times.  There have been days when she has had streaming confusion.  While the confusion can come and go in moments, tonight’s move from the mild dementia in the background to blatant and intense problems happened in a more dramatic way than I remember happening before.  Rarely has anyone else seen the dementia on the surface with this level of intensity.

After I left, Deb said there were a number of trips to the bathroom, with some action in the last one.  Then she settled in front of the television.  I asked Mary Ann as I was putting her to bed what she was referring to when she got angry with me about the garbage bags.  She wasn’t sure but she thought it had something to do with our Granddaughter, Chloe.  A couple of years ago we bought garbage bags from Chloe as part of an annual school fund raiser.  To my knowledge there has been no conversation in our household about those garbage bags since then.  At the moment, as I am writing, Mary Ann seems settled in bed.

Last night did not go well at all, so I expected today to have some problems with the dementia. She ate reasonably well.  Bath Aide Zandra came to give her a shower.  Mary Ann was in and out a bit.  She asked me to let the dog in.  There is no dog.  She talked about the tapeworm she is convinced that she has.  She said she sees it in the bed at night.  While she was in and out, it was not overly intense.

She was tired, understandably after last night.  There was a lot of time with her head on the little table in front of her.  She opted for Chinese from the grocery for lunch. Hospice Chaplain Ed came over after lunch for a while.  He asked Mary Ann how she was doing, asked me how I was doing, but most of the time it was the usual conversation that included our various ministry experiences.  He was interested in the Concert we had at church since he is a musician, plays the piano.  Mary Ann had her head down and dozed through most of what was an exceedingly boring conversation to her.

She then napped in the bed for about an hour and a half.  I got in some deck time while she was sleeping.  Tonight while Deb stayed with Mary Ann, I did a little shopping at Penney’s to replace some holey underclothes (it’s a pastor thing) and get a long-sleeved white shirt.  Yesterday’s Concert revealed that I had none that fit me.  Who needs a white shirt when retired?  Levi’s and work shirts (euphemism for hang around the house doing nothing shirts) are all that are needed.  Then I went over to my spot with the best view in town and sat for an hour or so.  I read from Weavings, the Spirituality Journal that comes to the house quarterly.  I watched about as beautiful a sunset as a person could hope to see.  In that spot I can hear birds and frogs and wind in the trees against the backdrop of tires on the Interstate a half mile away.

The deck time and sunset time was helpful.  Lately it has just been a little tougher for both of us to deal with the vagaries of each day’s leg in our journey — nothing dramatic, no one thing in particular.  Having said that, a prayer popped into my mind.  In our tradition there are formal corporate prayers (sometimes called Collects) that are often used in worship.  Many of them have a long and rich history.  There is one used in a worship service called Evening Prayer (also in other services) that is a favorite of mine. Here it is, copied from The Lutheran Book of Worship, p.153:

“Lord God, you have called your servants to ventures of which we cannot see the ending by paths as yet untrodden, through perils unknown, Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us through Jesus Christ our Lord.  Amen.”

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As we rolled back to the car after the concert this afternoon, Mary Ann asked why the trio I was singing in had not been asked to come up to the front to sing.  We did sing, but somehow it did not register in her mind.  Caregiver Debbie said that she had pointed out when I went up front to sing and that Mary Ann had responded that she saw me. The Parkinson’s Disease Dementia is such an odd sort of disease.  Perception is sort of like Swiss Cheese, there are random holes with no explanation as to why they are where they are.

The concert seemed to go well.  It was tough logistically to pull off since there was a huge choir made up of folks from five congregations.  There were numbers of instrumentalists playing at different times depending on the style of music.  There was classical music and contemporary music, liturgical dance, poetry, drama; there were soloists, ensembles, a hand bell choir, pieces with organ accompaniment and piano accompaniment and combinations of any or all of the above.  It would have been tough to sit through that concert without finding something to like. It struck me what a complex organism the event was with each of us having our little piece that when put together with all the others could provide something of such magnitude.  There were no stars, no one to single out, other than Young, the project director who had the vision and put it all together.

I enjoyed being in the setting, talking and thinking and listening to and making music.  One of the choir directors from another congregation sang in the trio.  He and I had a chance to talk music off and on.  It is a world in which I have spent much quality time in earlier decades.  I find it engrossing and energizing, as well as spiritually uplifting.

Yesterday I had a chance to talk with our eleven year old Granddaughter whose choir concert was also this afternoon, resulting in my missing it.  She seemed okay with my missing her concert.  She told me about some of the songs they would be singing.  Our Son said he would try to get some of the concert on video for us.  I feel better having made that connection.

Mary Ann and I both slept well last night.  I had plenty of time to get her ready this morning, dressed, fed two meals, hair washed.  There was lots of fainting again, raising some concern about how things would go if she tried attending the concert.  When Home Instead Caregiver Debbie came, we just headed over to church.  Mary Ann seemed to do fine.  The concert was almost two hours long, plus a reception afterward. Lots of people made a point of greeting Mary Ann.  Now that there is an awareness that she is enrolled in a Hospice Program, folks are probably less sure what to expect and more surprised to see her appearing to be doing reasonably well.

Last evening and this evening, after Mary Ann went to bed, I was able to spend almost an hour on the deck, enjoying the sound of the waterfall, watching clouds and birds, as dusk arrived and the lights in the waterfall shone at the base of each level, sparkling in the sheets of water coming over the rocks. As a result it is now getting late.  I will hope for another good night’s sleep tonight, but, of course, whether or not that happens is not mine to decide.

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It is almost 11am, Saturday morning, and Mary Ann is still sleeping.  I wrote no post last night since I was especially tired.  The two nights before last were not wonderful.

Yesterday, Mary Ann was again very tired all day long.  The hallucinations/delusions/dreams mixed with reality continue. Yesterday morning she asked me to check on the towels.  I confirmed that she meant the towels for the people she is convinced are living downstairs.  She admits that she thinks I am lying when I say that they are not here at the house.  I offered to take her downstairs.  I think the bed is not made but has the clean sheets folded on it.  The problem is, not only would it be almost impossible at this point to get her down and up the stairs by myself, but she would probably just conclude that they cleared out for the moment just to fool her.

We did not get out yesterday except to make a quick circuit to get my coffee and a take-out luncheon Lasagna from Olive Garden for Mary Ann.  Later in the day she opted not to go out for ice cream but eat what we have from the store here at the house.

I don’t know if this is actually a decline or just temporary, but the confusion becoming a routine part of each day, increased fatigue, and the reluctance to go out is a little unsettling.  Maybe it is still the Urinary Tract Infection.  She is done with the ten days of anti-biotics.  We will be getting a specimen for the lab when she gets up to see if it is actually gone.

…Mary Ann is up now.  She got up at about 11:15am.  She ate a usual breakfast and then sat for a while, pretty much dozing most of the time.  Understandably she did not want to lie back down even though her head was hanging.

When I asked about lunch, she said she did want to go out.  I was apprehensive since she appeared so tired, but it seemed worth a try just to get both of us out of the house.  When she stood up to put on a light jacket, she ended up having a major fainting spell.  After she came back around, she still wanted to go out.  She, of course, has little awareness of the fainting.  I rolled her to the door to the garage and she walked down the steps as usual (she handles steps better than flat surfaces) into the garage.  Before I could get her into the car, she had another major fainting spell.  I have four folding chairs lining the garage wall along her side of the car, so that one is always in reach.  I grabbed one and got her in it before she went down to the floor.  I have put the colorful foam playroom squares along her side of the van so that if she does fall, the damage will be minimized.

I finally got her into the car, and we made our way to Perkins.  Since she was in the wheelchair except when transferring from the car and into the chair in the restaurant, she did not faint during that outing.  She managed to eat a few pieces of pancake on her own, but then she allowed me to help her eat more after ceasing to be able to get them speared and into her mouth.

When I got her out of the car back at the house, she had another major fainting spell.  After she was awake and able to stay seated in the folding chair by herself, I prepared the portable ramp into the house and got the transfer chair.  That way i was able to get her into the house.  As always, she needed a trip to the bathroom.  She fainted again there, but this time it was not a major outage.  By the way, when I refer to a fainting spell as a major one, it means after jerking and stiffening for a few moments, she goes limp.  Then she remains out for a minute or two (rarely it is many minutes up to a record fifteen).  During that time she is snoring as if having a spell of apnea, sort of gasping for breath, and saliva comes out of her mouth (my sleeve usually gets wet since I put my arm across her chest to keep her from falling out of the chair).   Gratefully, she is completely unaware of all of that and remembers nothing of it.  She sometimes seems to think I am making all of that up, that she does not actually faint.  Since she has no conscious awareness of the fainting spells, she has no natural reticence to getting up and heading out no matter how many times she has fainted.

When Hospice Nurse Emily came to pick up the specimen for the UTI lab test, I asked her to take Mary Ann’s vital signs since Mary Ann had appeared to have labored breathing and admitted to having some difficulty with her breathing.  Her vitals were fine.  The blood pressure reading was 158/92.  That reading came after there had been some fainting spells and before we headed out for lunch, experiencing a number of major spells.  That reading would be high for anyone under normal circumstances.

Here is my dilemma.  Do I add back into her medication regimen the Midodrine that raises her blood pressure all the time.  When she is on the medication, it is as high as 220/120 in the mornings and goes even  higher sometimes when measured at doctor’s appointments.  Many months ago, when she was taking a full therapeutic dose of Midodrine, we were able to do much more in the way of traveling, eating out, participating in activities.  We have long ago decided that the quality of our time is more important than the length of it.

As I write, I would like to be attending the wedding of the daughter of a family of which we think very highly.  Her Mom was on the Staff at the church from which I retired.  I have enjoyed their kids and value them as friends as well as former parishioners.  If that is not enough, one of the Pastors doing the wedding is a young man whom I watched grow at that church, and had the privilege of Ordaining into the ministry not long ago.  Lot’s of folks whom I came to know and love during the twelve and a half years as part of their lives will be gathered there.  I take some comfort in the fact that I am at the moment doing exactly what Katie and Jacob are  promising to do, what I promised to do over forty-four years ago.

Tomorrow is the day of the concert in which I will sing as part of a trio in a larger choral piece.  It would probably be a good idea to get a good night’s sleep tonight.  Mary Ann is in bed and appears to be sleeping at the moment.  Here is hoping that she sleeps well throughout the night.

Today, we were pretty much home bound.  I had hoped we could get out, but it just didn’t materialize.  As I reflect on the day, I realize how much activity comes to us instead of our going somewhere else to find it.

There were no Volunteers scheduled today, so unlike many Wednesdays, the option to go out on my own was not available.  Mary Ann was tired today and napped at times that kept us here.  We still haven’t made that trip to the grocery I have been trying to get in for a number of days.  Since food has been brought to us recently, we are eating well.  We are on the last package of Mary Ann’s pads (disposable underwear), so tomorrow will have to include a trip to the store.

This morning began with the Spiritual formation group that meets here.  If those folks were not willing or able to come here, I would simply have no Spiritual Formation Group experience regularly. It is both garbage day and lawn maintenance day on Wednesdays in our subdivision.  We have recently incorporated the garbage truck sounds into our spirituality as a metaphor for ridding ourselves of unwanted garbage in our lives — letting go of things that just bog us down and clog our spiritual arteries.

As I was setting up the deck in anticipation of the arrival of the group members, there was an aerial attack on the pair of Mallards in the back yard by another pair.  There was much squawking as the dive bombing hen chased off and flew after the hen already on the tarmac.  The same thing happened with the drakes, with the addition of their fly by almost clipping my ear.

The lawn crew provided weed-eating next to the deck as we had the concluding prayer.  I am sure that we will come up with some sort of metaphoric understanding of to the mowing and weed eating that will incorporate those sights and sounds into our Spiritual Formation.

Again, during the group time Bath Aide Zandra came to the house to provide friendship and help as Mary Ann with through her morning regimen.

By the time the Group was done, Landscaping Tech Sheila had arrived and begun working on our disheveled garden areas.  It is at this point that another venture into bringing beauty into our lives is beginning.  Sheila has presented and then adapted a plan intended to provide more beautiful surroundings at the side and front of the house.  Her original proposal was elegant and well-planned.  Mary Ann and I redirected the project.

Shortly after moving in we had added a berm in the space between our town home and the one next to us in a spot that was in full view when standing at the sink in the kitchen.  The first plan would have returned that spot to sod.  After thinking about it for a while, I realized that we were more concerned about what we see from inside the house than what people see when looking at it from the street.  Now that I am at the sink an inordinate amount of time each day, I am especially in need of having color and activity and growth and change to stimulate my visual cortex.  We can’t get to lots of beautiful places away from the house, so we are bringing them to the house.  That is what all the changes at the back of the house were about.

Stacey came by later today to take the final measurements for the sun room blinds for privacy at night.  That project continues.  Sheila is doing some work in a small back area at the side of the deck to fill out the setting.  The leaves are now out on the trees in behind and beside the waterfall and in the neighbors’ back yards.  The area is now almost completely green and secluded.

Mary Ann’s day was not her best.  She fainted quite a bit this morning and ended up back in bed for at least a couple of hours.  At a late lunch there were a couple of falls without damage to Mary Ann, but our relationship was stressed some in response to them.  From her perspective, she was just doing what she did automatically before the disease took its toll.  From my perspective, she was making choices (twice within minutes of one another) that unnecessarily complicated our lives with substantial clean up and the physical demands of getting her off the floor.

I spent the rest of the time she has been awake sitting a very few feet from her, ready to jump each time she stood up.  Bringing activity and stimulation into our immediate environment helps especially on days like today when even stepping outside is limited.

Hallucinations have continued at various levels of intensity.  We seem to be having less and less of the good, lucid times.  A few minutes ago when I saw her moving in bed, I went in to help her turn so that she is facing the opposite direction.  She said that she guessed we were at the first table.  There were, of course, people here, but she wasn’t sure if they were tables for playing cards or what.

I am not sure what way we are swinging at the moment.  I don’t know if there will be lots of daytime sleeping tomorrow, or much sleeping tonight,. I don’t know if there will be some calm and lucidity tomorrow or hyperactive delusion/hallucination/dreaming going on.  I will find out.

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Last night Volunteer Tamara came over and picked up a number of cooking dishes, so that she could bring a supper for us to cook here tonight.  Anybody hungry?  The cooking dish she took was far too small.  When the food came this afternoon, I needed to get the turkey roasting pan from downstairs to hold the roast and vegetables.  The pyrex loaf pan was filled to the brim with a spinach, onions and cheese side dish.  The Jello mold she had picked up from us could not be used since it was barely more than half the size necessary to hold the mult-layered fruit filled molded Jello that came with the meal tonight.  Then there was the ten by thirteen pan filled with a lemon dessert to be cut into many bars.

The veggies went into the oven first at 425 degrees for 30 minutes.  Then the huge boneless pork roast covered in a mustard and herb glaze was placed in the center of the pan with the veggies and that pan was put returned to the oven for another forty-five minutes.  Before that would be done, the spinach dish went into the oven.  At the end of the 45 minutes the roast came out and the veggies went back in for another fifteen minutes as the roast was put in a dish and covered to rest for fifteen minutes before slicing.  During that time the spinach finished cooking and the fresh asparagus she also brought was steamed.

Roast pork, roasted vegetables , a hot spinach and cheese dish, asparagus, a fancy layered fruit Jello and lemon bars all provided a sumptuous feast in our little place tonight.  Had we realized just what magnificent food would be in such quantity, you would all have been invited.  We will have good food for days to come, and I will not have to cook!!!

Mary Ann struggled today to stay alert.  She slept well last night, a very good thing.  She didn’t get up until Bath Aide Zandra came, and she remained very tired during the shower, hair washing and getting dressed routine.  Breakfast was a little more difficult than usual for her to handle.  After some fainting, she ended up back in bed for a about an hour and a half.

After she got up, we headed out to run a couple of errands and bring back some lunch for her.  I most often do leftovers.  For the afternoon, she was again somewhat vulnerable to mild confusion and hallucinations.  I needed to stay close.

As we were finishing supper, Volunteer Tamara returned at the usual evening Volunteer time.  She even did the after dinner clean up as I helped Mary Ann wtih the last of her supper.  That was a wonderful gift.  Then I was able to have some time away this evening (Lowe’s and Barnes and Noble).

Mary Ann has been in bed now for a while, but she is really struggling to get settled. I certainly hope she is able to rest, for both our sakes.

Our Daughter, Lisa, phoned this morning while Mary Ann was with Zandra.  She called to work out plans for a couple of visits to our place, one just after the girls get out of school for the summer and just before they start back toward the end of the summer.  That will give Mary Ann a couple of focal points to keep her interest and attention as the months go by.  The Grandchildren always put things into a healthy perspective, keeping us from seeing our journey only in terms of the two of us.

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Mary Ann went to bed at about 9pm last night.  Once she settled, she did not get up until 12:15pm today.  That is fifteen hours straight.  When I went to the bedside commode to clean it today, it had not been used at all.  She was not up even once.

I said in last night’s post that I hoped to get to bed earlier than usual.  I was in bed by 10:30pm (usual time is 12-1am.  I slept in until 8:30am and got my shower done quickly in case Mary Ann needed me.  After getting showered and dressed, since she was still sleeping and there was a quiet rain with soft rumblings of thunder in the distance, I lay back down on the bed.  I also did not get up again until 12:15pm. And people ask what it is like to be retired!!

The rest was very much needed for both of us.  Mary Ann was not so confused today, nor was she in that intense popping up mode that is so difficult for me to deal with.  The symptoms that suggested to me that I might be coming down with something seem to have subsided also.

Mary Ann ate well, only two meals due to getting up so late in the day, but substantial meals — with a large bowl of Ambrosia Salad as a snack in between the meals.  There was some much needed intestinal activity, demanding my participation.  There was some fainting that made that job more difficult, as usual.  She was able to sit up in her chair most of the time when she was in the living room.

Volunteer Deb came over to spend the evening with Mary Ann while I attended a choir rehearsal at the church from which I retired.  I was asked to sing one of the parts in a trio that is part of a larger piece to be sung by a combination of area choirs at a concert concluding a number of months of music activities.  This is the first commitment I have made in a year and a half, other than doctor appointments and that sort of thing.  Mary Ann’s needs at the last minute resulted in my being unable to honor a somewhat similar commitment a year and a half ago. At that time, I concluded that I simply could not commit to anything outside of Mary Ann’s care.

This time I have put in place coverage for Mary Ann that should assure my ability to honor the commitment.  Since my little part in the piece impacts the rest of the choir I can’t in good conscience just bail out at the last minute.  There is a paid Companion Care Aide from a Home Health Care Agency (Home Instead) who is scheduled to be with Mary Ann during the time of the concert itself.  Aide Debbie knows Mary Ann very well from having come each Sunday Morning to be with her for a year or two before I retired.

It was good to be singing again.  I struggled with my own ability to read music tonight as I sat with the choir, trying to sing along.  Singing in choirs and ensembles was the center of my school years.  I got to serve as student conductor of five choirs spread over high school and college years.   After that I sang in two Seminary choirs during those four years of graduate level schooling.  I sang in Schola Cantorum, a semi-professional choir sponsored by the American Guild of Organists for a number of years in Kansas City.  It is hard to accept struggling to read what would have come quickly in earlier years.  When I complained about that to the barista at the coffee shop on my way home tonight, I noted that the last time I had sung regularly was in 1987, when we left Kansas City.  The barista is of college age.  She immediately put into perspective the reason I might be a little rusty.  She was born in 1986.  How on earth did I get so old so fast!

As I was anticipating retirement and full time care of Mary Ann, I had visions of all sorts of things that I might do without 60 hours of commitments to my job as Senior Pastor of a large church filling my week.  I knew from the days and parts of days I was by myself with Mary Ann that it would be very hard to do other things.  The fall after I retired, reality set in.  Because of the vacillations that come with Parkinson’s, along with the addition of the Parkinson’s Disease Dementia, making those vacillations even more dramatic, it soon became clear that I could not commit to anything other than her care.

There are a number of folks in the online group of those in situations similar to mine, who are able to keep a few other activities in their lives on a regular basis.  I made a choice to just do the one thing.  I did it realizing that for me, the stress created by trying to manage regular commitments in addition to Mary Ann’s care was more than I could handle.  I still have no idea how, even with all the Volunteers, I survived the last seven or eight years before I retired.  I doubt that without our Daughter and her family’s move here to help out the last couple of those years I would have made it.  I continue to be grateful for the Staff with which I worked, who seemed to be willing to do anything to help, and a congregation with very understanding leadership, willing to do the same.  It is beyond comprehension that so many in the congregation were willing to give so much of their time and energy to help us in our day to day survival, some still doing so.

As I have said many times before in these posts and elsewhere, while I would not wish this horrible disease on Mary Ann or anyone else, I am in awe of what compassion in action has surrounded us on account of it.  I can only hope that those expressing that compassion have found some meaning and fulfillment in doing so.  We cannot repay what has been given so freely.  We can say thank you.  It is all I know to do.

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It started again last night.  This morning she was up at about 6am and hopelessly confused.  It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house.  As soon as I got in the shower, she started yelling for me.  I got out to see what had happened, and she just wanted to know where I was.  The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom.  She had been to the bathroom just before I went in to take a shower.  It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days.  Today, I have not felt good at all.  Here is where the grateful dimension kicks in.  Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann.  as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day.  Parish Nurse Margaret arrived just as Maureen was due to leave.  Margaret spent the next two hours with Mary Ann while I did some morning chores.  During that time I gave Mary Ann her pills.  Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60).  I was reassured by the normal pulse after yesterday’s unusually rapid heart beat.   The BP would be great for anyone else, but low for her.  She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television.  During this same time, Kristie, who does the monthly cleaning, came and started her work.  Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands.  At 11:30am Volunteer Doris arrived.  I got Mary Ann’s lunch.  She could hardly keep her head up.  Her nose was almost touching the plate.  She finally let me help get the food to her mouth.  She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down.  I remained at the house, since Doris needs help moving Mary Ann.  After a while I was able to get Mary Ann to lie down in bed for a nap.  I set up the monitor so that Doris could let me know if help was needed.  That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task.  While he was  here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann.  She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream.  There was also a large container of Mary Ann’s favorite, Ambrosia Salad.  During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired.  I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping.  Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself.  That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday.  I am profoundly grateful for so many Volunteers spending time with Mary Ann today.  Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode.  It helped to have others here.  Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task.  I had a chance to enjoy talking with those who came, making my day better.  I need and love times of solitude, but I need human interaction just as much.  The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert.  I spent time just sitting with Mary Ann as she watched an hour or two of television.  Then she decided to go to bed.  After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one.  I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system.  The only power I have is to try to get some rest.  Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest.  How much rest I actually get will depend on how Mary Ann’s night goes.

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.