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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Many more nights like last night, and on Judgment Day, the Judge will just say to both Mary Ann and me, “Time Served” and send us right on through the pearly gates. (Don’t worry, I recognize that does not reflect Lutheran Theology.)

My point:  It was not a good night last night.  It continued as it began.  That description is in last night’s post. Mary Ann was actively hallucinating and mixing bizarre dreams with hallucinations until 5am.  Then she settled for two hours, and at 7am was up and at it again.  This mornign she announced that she hated the place she slept last night.

I think it was after I had gotten her breakfast and pills, at this point I am not sure exactly when it happened.  She insisted on getting shoes on.  I put on some moccasins, thinking her feet were just cold.  Then she wanted her coat on.  She often sits with her jacket on when the house is cool and she has just gotten up.  This sounded different.  I asked where she was going.  She said she (we) were going out to the car and to the movies.  I reminded her that she was still in her pajama’s and that Hospice Aide Sonya would be coming in an hour and a half.  I didn’t think to mention that the theaters were not open in the morning anyway.  She was not happy with me for frustrating her plans. Moments later, as I moved her into her spot in the living room, in a matter of fact way, she asked the little girl if she wanted to go with us to the movie.  I am guessing that the little girl was Granddaughter Ashlyn, since she often sees her and talks to her.

There is no way I can even begin to describe the various living dreams she had last night. For one thing, I don’t remember them.  Most of the time, they just don’t connect with anything that makes enough sense to me to hang on to the memory.  Secondly, there were too many of them, each unrelated to the last, as they came every few minutes.  Some times there would be a repeat, for example, one of the first things she said this morning was, did I know we were broken into last night?  (See last night’s post.)  At 4am she asked for a Nitro pill to deal with the pain that the two earlier Tums had not eliminated.  The Nitro pill relieved the pain.  I suspect it was still esophagus pain.  If I understand correctly, on occasion Nitro pills have been used to quiet reflux spasms.

Yes, I would term last night, a night from Hell.  It is hard to imagine how frightening it must be for Mary Ann to find herself in distressing circumstances for so many hours with no sense of what time it is or where she is.  It is, of course, terribly difficult to go through as a Caregiver, helpless to say or do anything to make a difference, or provide any comfort.  I remind her endlessly that she is safe in her own bed and there are no people other than the two of us here.  That never sinks in for long.

It was good today for Mary Ann to have the reality of a morning regimen with Sonya.  Then friend Jeanne came over at 11am to be with Mary Ann again for a few hours.  Volunteer Scheduler, Mary also came over and ended up staying the whole time with Jeanne and Mary Ann.

I spent time away from the house doing errands.  I had enough to keep me busy until mid-afternoon, when I brought home Blizzards for everyone from Dairy Queen.

As far as I know, Mary Ann dozed with her head down on her little table most of the time I was gone, plus some time napping in bed.  She did get up to eat lunch.  After Jeanne and Mary left, Mary Ann dozed with her head on the table, and then wanted to lie down.  She has had no supper.  She just got up long enough to have a little single serving tapioca, and then she changed into pajamas, took her pills and is now in bed.

She has been up once to use the commode.  Since she slept so much today, we might have another difficult night tonight.  I did not get any napping in today, so I certainly hope that she sleeps tonight.

Even though it is chilly tonight (heading for the upper 30’s by morning), I sat on the deck for about an hour.  I put a coat on and brought out an afghan to put over my legs so that I would be comfortable.  A little more devotional reading and some time just tuning in to the setting and the moment, helped settle my spirit.  This is not getting any easier on either of us.

…she just got up asking me to put the things away in the baby blanket.  Indications are that we may have another night like last night.  My hopes for a restful night are not likely to be realized.

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…No small matter for a retired preacher.  This one came so much out of the blue, that at first I was completely at a loss as to how to respond.

The night had been a tough one.  Mary Ann just could not settle.  We were up many times.  The frequency diminished to once every half hour or forty-five minutes after about 3am.  The last one was at 4:45am before I got up at 6:30am to prepare for the Spiritual Formation group that meets on the deck (weather permitting — downstairs otherwise).  I complained to Mary Ann that I would be getting up soon and wanted at least a couple hours of sleep before then.

Mary Ann was sleeping soundly when I got up to get ready for the Group.  Since a couple of folks couldn’t make it there were only two of us this morning.  We talked for a bit on the deck until I saw Mary Ann moving.  I keep the video monitor with me during the group when there is no Wednesday morning Volunteer.

I went in, and as she was lying on the bed facing me, I asked if she needed to use the commode.  Wide-eyed and angry sounding, she said in a strong voice, “Don’t lie to me!  I know you have been out all night smoking Marijuana.  You wreak of it!”  Yes, preacher of many words that I am, I was completely baffled and at a loss to know how to respond.

It is such a mystery how those synaptic connections can create thoughts with no context.  We both preceded the baby boomers by long enough that Marijuana had not yet been invented when we were in high school.  We didn’t experiment nor did our kids have any apparent experience with it.  In fact I asked Mary Ann this morning how she knew what Marijuana smelled like that she decided I was wreaking of it.  She said the kids told her.

Realizing that since she began this interaction with the non-sequitur response to my question about the commode that I should stop lying, I tried to connect with something that might bring her back to reality.  I asked who exactly she thought it was who was up with her multiple times all night long if I was gone.  I reminded her of my complaining at the 4:45am commode trip.  She remembered that.

I got her up and to the table to eat something before Bath Aide Zandra arrived.  She seemed to be transitioning at least part way back to reality.  I then commented on how angry she was this morning — to which she responded “So would you.”   She seemed to be back to feeling that it was real and not a dream/hallucination.

I asked if she still smelled the Marijuana.  She said, yes.  Then as if to hint that maybe it was not true that I had been smoking it, she said she knew that the kids smoked it.  She had seen them the last time we visited there.  She was referring to our Kentucky crew.  Then she said that the last time the Kentucky Daughter Lisa was here she said that she smoked.  At this point Mary Ann switched to talking about regular cigarettes.  Anyone who knows Lisa realizes just how crazy that suggestion is.  Mary Ann said that Son Micah told her he did not smoke.

I don’t remember so much as a recent news broadcast that would have brought the word Marijuana into her mind, unless it has been in one of the Law and Order episodes that dominate our television.

I realize that this sounds like something worthy just laughing off.  It is not funny to me.  In fact it was scary.  I felt utterly helpless to respond in a way that could deal with her anger.  It is hard to think about how upset she must be feeling when those painful and very vivid thoughts and sounds and images, and now even scents, take hold as her reality.  It is clear that there is nothing that I will be able to say that will remove that view of reality from her mind.  I will not be able to reason it out with her.  Judging from past experience, that now will become a reality she goes back to, one that will remain with her, accessible at any moment in time.

I read pretty much daily accounts of experiences almost exactly like ours.  The online Yahoo Group of Spouses of those with Lewy Body Dementia [LBD] talk about the hallucinations and delusions and vivid drreams confused with reality all the time.  Lots of their Loved Ones have people living at their house, are convinced that their spouse has been replaced by an imposter, are paranoid about one thing or another.  It does help to a certain extent to know that we are not alone in this regard and that it is normal behavior for those with LBD.

On the other side of it there is a terrible sadness realizing that this is only going to get worse.  The deep pain is apparent when those posting in that online group talk about living with a person who is physically present but no longer the person they have been married to for so many years.  That person has in some cases ceased to exist completely.  They are not alone but very lonely.

I am very grateful that Mary Ann is still present much of the time.  It is frightening to see the times she is present diminish as the weeks and months go by.

Friend Jeanne came over to spend a few hours with Mary Ann today.  Mary Ann spent more time awake than I thought she would, given the rough night last night.  I appreciated having time to run a couple of errands.  Then we went to G’s Frozen Custard for Turtle Sundaes.

Mary Ann ate a fairly light supper and dozed with her head down for while.  Then she got ready for bed.  She has been sleeping fairly well, at least it appears so.  I certainly hope she gets a good night’s sleep. We both need 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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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.

This morning when getting up, Mary Ann looked at the cup with a red cozy around it for keeping the ice water cold for as long as possible and thought it was red Jello.  After I described what it actually was, she reminded me about the red Jello that we needed to call the lady about — the lady who brought it.  We needed to find out what to do to thicken it since something had gone wrong when the lady made it and it was runny.  There is, of course, no red Jello, no lady. (Monday’s meal was delivered by a Volunteer and it included a ring of fruit filled Jello including some that was red — it was not runny but solid.)

There was another complex delusion that she talked about in a very matter of fact voice a little later in the morning.  I can’t remember the content, just that it was surprisingly complicated and detailed, with no relationship to any bit or piece of the visible reality in which we live.

It was probably a good thing that there was a Volunteer scheduled while I have the periodic lunch with jimmy, a retired casket salesman who is enjoyable to talk with.  It was a good thing for Mary Ann since Volunteer Jacki brought her violin and serenaded Mary Ann while she was eating her lunch.

I finally got to the grocery after lunch today.  It would have been tough to go another day without more of a couple of things (most importantly, Mary Ann’s disposables).

Mary Ann had been asking to get to the dentist’s office for a cleaning since we missed the last appointment.  This afternoon was her appointment.  As always, the cleaning produces lots of bleeding. There are two reasons for that.  One is that she is taking Plavix and Aspirin, thinning her blood. The other is that I don’t do enough to care for her teeth since she has lost the ability to brush on her own.  The Aides do a little to help that problem, but it would be good if I would stop feeling guilty about not doing mouth care for Mary Ann and just do it.  I have put a Chux pad on her pillow tonight so that any bleeding will not get on the sheet or pillow.

This evening Volunteer Edie came to stay with Mary Ann while I went to another choir practice in preparation for Sunday’s Concert.  I enjoy singing, I made the commitment and will keep it, but I am very ambivalent about it for a number of reasons.  The central reason is that I will miss Granddaughter Chloe’s choir concert in Kansas City.  She is 11 years old and sings in a children’s choir sponsored by the University of Missouri, Kansas City [UMKC].  This is one of two concerts in the year.  Last year our Kids included a combination Mother’s Day/Birthday celebration by taking us and the other Grandparents out for a nice meal/dessert afterward.  We are missing out on all of that because I didn’t put the date on our calendar, and I committed to sing in the concert here before I received an email reminding us of the date. I hate disappointing Chloe as well as our Son Micah and Daughter-in-Law, Becky.

Another reason for my ambivalence is that the more I enjoy the singing in the concert, the more I remember what I am missing in my life at the moment.  Singing takes my mind off everything else.  I am completely immersed in getting the notes and rhythms right, being exactly on pitch, interpreting the phrases appropriately, blending with the other singers.  There is no room for awareness of anything else when that is going on.

When someone you love has to be away for a long time, while you long to have a visit from them, a short visit from them also brings with it the pain of knowing you will have to say good-bye again in a day or two, going through the grieving all over again when they leave.  It is almost easier just not to see them until they can come home and stay.  That is the something of how it feels when I do something that brings me joy and satisfaction, something that has no place in my life at the moment.

With enough effort, I could probably figure out the logistics of singing in some choir or vocal ensemble more regularly. There’s the rub — effort.  Serving as the 24/7 Primary Caregiver for someone who truly needs your help day and night, does not leave the stamina necessary to work out those logistics.  The will and the energy to do what needs to be done to get away at scheduled times is simply no longer there.  The role I have here is big enough to take all that I have to give.  Even at that, Mary Ann could/should receive better care (e.g. oral hygiene).

Sunday will include a mass of conflicting feelings.  While I want her to get out and enjoy the music, there will be complex transportation and timing issues if Mary Ann decides she would rather attend the concert than stay at the house with the person assigned from the Agency (a person Mary Ann knows and likes); there will be the $80-$90 it will cost to cover that care so that I can sing in the concert; there will be disappointment at missing Granddaughter Chloe’s concert and how she and her parents will feel about it; there will be frustration that I am not reading music or singing as well as in the past; there will be exhilaration in doing the singing, joy in hearing and participating in making the music that will reverberate in that building (Lutherans can really sing).  There will be the Spiritual uplift that comes with the organ music and instrumentalists and the singers in the choir, a roomful of people of faith in the congregation expressing that faith in full voice.

Right now it is getting late and all that is too much to think about.  For the moment, I just hope Mary Ann sleeps well tonight, and me too.

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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.

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.

Before you worry, I am not hopelessly burned out.  Yes, I did not ace this quiz.  It would seem to me that it would be necessary for me to be completely delusional and entrenched in a state of denial, not to fail this quiz.  People who are doing full time caregiving with someone suffering from any form of dementia have to face down their limitations and name the feelings as they experience them.  That is the only way to actually stay healthy.  To be perfectly calm and in control would be utter madness.  The quiz does provide food for thought.  The http://www.caring.com/ web site has lots of links to helpful information.  One of those links took me to a list of a handful of tools for survival recommended to those caring for someone with dementia.  I am doing all but one of them — and yes, I am still surviving.  Mary Ann may not be pleased with this sometimes grumpy Caregiver, but we a doing okay.  For those of you who are tracking our days, I will add a paragraph after the quiz.  Here is the quiz:

Quiz: Are You Heading for Caregiver Burnout? By Paula Spencer, Caring.com senior editor

Last updated: April 22, 2010

Caregiving can bring many positives into your life — but it’s also hard work, physically and emotionally. If you don’t take enough self-care to replenish yourself, then caregiver stress, anxiety, and depression can build.

And that puts you on the path for caregiver burnout, a syndrome of mental, emotional, and physical depletion. “Caregiving requires a certain amount of selflessness, but it’s important for caregivers to know their limits,” says Caring.com senior medical editor Ken Robbins, a geriatric psychiatrist at the University of Wisconsin who’s also board certified in internal medicine. “Caregivers can become so focused on the person they’re assisting that they neglect their own needs.”

Caregiver burnout interferes with your ability to function. Burnout also raises your risk of chronic depression and other mental and physical ailments, from hypertension and flu to diabetes, stroke, or even premature death. Caregiver burnout is also a leading cause of nursing home placement, when run-down caregivers become too depleted to manage caregiving demands.

“It’s important for caregivers to be aware of this phenomenon and to find ways to either prevent or minimize it when they realize it’s happening,” Robbins says.

What’s your caregiver burnout index? Answer the following 12 questions, add up your score (A = 4 points, B = 3 points, C = 2 points, D = 1 point), and learn lifesaving strategies for managing the unique stress of caregiving.

1. How often do you get a good night’s sleep (seven or more hours)? a. Every day  b. Often  c. Sometimes  d. Seldom or never

2. How often do you keep up with leisure activities that you enjoyed before caregiving? a. Every day  b. Often  c. Sometimes  d. Seldom or never

3. How often do you feel irritable or lose your temper with others? a. Seldom or never  b. Sometimes   c. Often   d. Every day

4. How often do you feel happy? a. Every day  b. Often  c. Sometimes  d. Seldom or never

5. How often do you find it difficult to concentrate? a. Seldom or never  b. Sometimes  c. Often  d. Every day

6. How often do you need a cigarette(s) or more than two cups of coffee to make it through the day? a. Seldom or never  b. Sometimes  c. Often  d. Every day

7. How often do you lack the energy to cook, clean, and take care of everyday basics? a. Seldom or never  b. Sometimes  c. Often  d. Every day

8. How often do you feel hopeless about the future? a. Seldom or never  b. Sometimes  c. Often  d. Every day

9. How often are you able to relax without the use of alcohol or prescription sedatives? a. Every day  b. Often  c. Sometimes  d. Seldom or never

10. How often do you feel overwhelmed by all you have to do? a. Seldom or never  b. Sometimes  c. Often  d. Every day

11. How often has someone criticized your caregiving or suggested you’re burning out? a. Seldom or never  b. Sometimes  c. Often  d. Every day

12. How often do you feel that someone is looking after or caring for you? a. Every day  b. Often  c. Sometimes  d. Seldom or never

How did you score?

This self-test isn’t a scientific or diagnostic measure; it’s meant to help you identify whether your stress level warrants taking steps toward better protecting yourself.

Add up your score. Each A = 4 points, B = 3 points, C = 2 points, D = 1 point.

48-42: Keeping your cool (low burnout risk)

Your heart and head are both in the right place, and your stress-busting reservoirs are full, which helps you to give with grace and good humor. That said, caregiver stress often creeps up without a caregiver realizing it. Protecting your healthful habits is paramount.

What to do: Keep yourself well fueled for caring by making time for yourself every day — at minimum, aim for several five-minute pick-me-ups for caregiver stress. If you’re in a relationship, know that a healthy marriage or other close relationship can be a source of strength; learn how caregiving couples can make it work.

30-41: Feverish (elevated burnout risk)

You’re likely managing caregiver stress reasonably well but falling into a common caregiver trap: Letting yourself sink lower on the daily priority list than is healthy for you. Everyone has an occasional crazy-busy day, but too many of them results in chronic stress — which erodes well-being and places you at risk for depression, colds, and other illnesses.

What to do: Protect your time for self-care by learning seven ways to find more “me” time. On days when you’re feeling stressed, try these five ten-minute pick-me-ups.

18-29: Too hot to handle (high burnout risk)

Your stress level is probably sky-high. You may already be experiencing symptoms of anxiety, depression, compromised immunity, and physical exhaustion that can lead to or complicate chronic diseases such as hypertension, diabetes, heart disease, and chronic depression. It’s critical that you take steps immediately to lower your stress level, ideally through a combination of better self-care, a shared workload, and outlets for your complicated emotions, including talk therapy and support groups.

What to do: In addition to the suggestions in the sections above, learn the five real reasons you’re stressed and how to tame them. Look into respite care options — they’re an important way to give yourself the break you need.

12-17: Toast (already burned out)

It’s a wonder — and a blessing — that you were able to find and take this quiz. You’re running on empty, or is it more like barely running? Although you want to do your best for the person you’re caring for, realize that your own health is at stake — and if you don’t look out for Number One, you won’t be able to help the person or persons in your care.

What to do: You need immediate help. Learn how to tell the difference between the normal stress of caregiving and depression and consult with someone you trust — a doctor, clergyperson, counselor, or therapist, for counseling — and seek out medical assistance. At minimum, you need a physical checkup. You may also benefit from other therapies or from a break from caregiving that’s as short-term as a vacation or as permanent as a relocation of the person in your care.

After she settled, Mary Ann slept well last night, but remained tired today.  I got up in time to get her ready for her Tuesday morning Bible Study.  Even though we remained on course and had plenty of time to get there, she chose not to go today.  I still don’t fully understand why, except that she seemed to be tired all day long. I asked if she meant that she didn’t want to attend any more, but she said it was only today that she didn’t feel like going. She really values the group and seldom misses.

She ate well at all three meals.  She napped for a couple of hours at the most.  She went to bed at a normal time for her.  One of the Hospice Nurses stopped by for the weekly visit.  I was pleased to report that Mary Ann weighed in at 115.5, another pound heavier.  We have been trying to regain some of the weight she lost in recent months.  Since Mary Ann will finish the anti-biotic for her UTI tomorrow, I asked about doing another urine test to be sure this is not a chronic infection.  The nurse said the usual, wait until symptoms occur.  I responded with the challenge that Mary Ann presents no symptoms that differentiate from already ocurring symptoms of her chronic conditions.  I hope the Hospice Doctor will authorize another test some time in the near future to be sure the problem is not a recurring one.  This is another of those times in which the Caregiver has to track medical issues carefully rather than giving away responsibility to anyone else, medical professional or otherwise.

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.

I had little doubt we were on our way back to confusion last night.  The numerous commode trips returned along with a couple of times just sitting up on the side of the bed.  This morning she accused me of lying to her when I disagreed that when the kids were visiting they had been playing with a ball with fire in it. I let that one go without trying too hard to argue against what she was convinced she had seen.

A television report on the news last night must have found a spot in her mind.  The Phelps family blight on Topeka was in the news since an estranged son was in town on a book promotion talking about his difficult childhood before getting away and moving out of town.  Mary Ann asked about one of the Phelps’s talking with me in another room.  She said she had to arouse me from being sort of hypnotized.

She was not in the intense mode that sometimes comes.  I suspect that may be coming next in the cycle.  She was fairly calm, but still getting up often, unsure why or where she wanted to go or what she wanted to do.

Meals were somewhat confusing.  The spatial problems made her insistence on feeding herself pretty tough for me to deal with.  Food was ending up in lots of places, the spoon digging in spots where there was no food to be found. I was not very patient with her today.  She finally did allow me to help her eat the last of her lunch.

Mary Ann was not ready to head out in the car, nor was she interested in taking a nap.  Sometimes she sat with her head down, sometimes not.  The television needed to be on.  Everything that was showing, at least that she would tolerate, seemed to sort of suck the life out of me.  I could hardly stand to be in the room.  I did a lot of pacing.

I have to admit that it was not a good day for me either.  I had a bit of the feeling of a trapped animal, no alternative within reach with enough draw to grab my attention.  I read emails a bit, did some posting to Quicken.  Reading a book simply does not work for me when there are multiple times attention must return to my primary responsibility.  Some people are good at switching into a deep focus quickly when doing tasks. It is not easy for me to do so. If I do get engrossed in something too deeply, I am afraid I will not be there when needed.

At about 5:30pm, just minutes after she had decided to put shoes on so that we could do my errands, Mary Ann decided that she needed a nap.  The good news was that I was able to spend time on the deck reading some devotional material and just experiencing the moment and the environment. I had the video monitor nearby so that I could check on Mary Ann regularly without having to go in the house every few minutes. The bad news is that she did not get supper and the late nap may result in more awake time during the night.  A short time ago I got her up to change into her pajamas, gave her the bed time meds and a container of applesauce. At the moment, she seems to be sleeping.

I am going to try to find the right music and devotional material now to see if I can continue the restoration of peace begun on the deck.  Some days are just harder than others.