Logic sometimes seems to be completely useless in trying to figure out what to do.  In my last post, I was pleased with myself for keeping Mary Ann moving during the day to assure that she would sleep well.  In that post I reported that the hallucinations had diminished and she seemed to be down for the night.  So much for that observation.

After I finished that post, she started moving around.  The animals were back.  She was restless and we battled the animals for a couple of hours.  The next day was not much better.  There was a Volunteer in the morning who read to her.  I needed that break.  I headed up to the lake, listened to music and checked for wildlife.  As soon as I got back the usual issues that emerge when neither of us have gotten enough rest kept us at odds for much of the day.  Last night included some restlessness, but we both got a decent amount of sleep.

Today has gone reasonably well.  It is the day exactly forty years ago that I was Ordained, the day I became a Pastor.  We got out to a late lunch and splurged a bit, at least as much as can be done at an Applebee’s.  Our town has far too many restaurants, but few that are elegant and expensive (almost none).

There was a Volunteer tonight with Mary Ann.  I used the time to head up to my favorite spot nearby to watch the sunset and the wildlife.  A momma turkey and five young’uns provided some entertainment.  A doe settled down for some cud chewing about 200 feet way.  She seemed to enjoy the organ and choral music on a John Leavitt CD as it drifted out of the open window of the van.  She got up and left when the CD was done.  She has good taste in music.

There has been some nostalgia, maybe a bit of melancholy today.  The contrast between my life now and my life a couple of years ago is pretty dramatic.  During the years of ministry, most of my time (at least 60-70 hours a week) was spent connecting with other people face to face or via email.  Even when I was at home with Mary Ann, most of the time I wasn’t responding to her needs, I was at the computer interacting with people.

Because of the nature of my profession, there was lots of opportunity for being a part of people’s lives with the goal of making some sort of difference for good.  Whether I accomplished that or not is another matter.  That determination lies in the judgment of others.  All of that ceased completely at the end of the day on June 30, 2008.

I am grateful to have lifted from my shoulders the load of responsibility that goes with the role of Senior Pastor of a fairly large and very active congregation with hundreds of people serving as Volunteers as well as a substantial (and very capable) paid Staff.  I felt responsible to at least try to consistently do good work.  It was hard work.  As is always the case, the hard work is what produced the most meaningful accomplishments.  Gratefully, the central commodity we deliver is forgiveness.  It is a good thing, since I certainly needed lots of it for the things I did not get done or did not do well.

Today, it settled in me a little more deeply that that part of my life is over.  I found myself wanting to connect a bit with folks I have served over the years.  While my ministry has not been about me, but the One I follow, I would be lying if I claimed utter selflessness.

Today, I also recalled the most magnificent celebration I could have imagined when the congregation gathered for a retirement party a few weeks over a year ago.  What a party!  There was a sea of almost 500 people spread out in that room.  There was great food, great coffee, great ice cream, spectacular decorations, thoughtful gifts, and kind words that were way beyond anything I deserved (that’s not humility but honesty).  I will never forget that day.  No matter how bittersweet the day was today, I do not feel underappreciated.

Mary Ann is now in bed and on the monitor appears to be settled.  I will not predict how the night will go.  There was no napping today.  Logic would suggest that she would sleep.  Logic is irrelevant.  It will be what it will be. Actually, she has just had a trip to the commode and is now (seeing her on the monitor) moving about as if she is seeing things.

Tomorrow is a routine (three times a year) trip to the University of Kansas Department of Neurology’s Parkinson’s Center (Movement Disorders).  Hopefully Dr. Pahwa will have a suggestion for improving Mary Ann’ ability to rest at night with fewer troublesome hallucinations.

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I don’t know.  I don’t know whether we are in a time of decline.  It is beginning to seem that way.  I just don’t know.

We had a good day and a difficult day all at the same time.  It was a good day because we got to see our Granddaughter sing in a choir concert this afternoon.  She sang wonderfully — something very important to this Grandpa whose life revolved around singing in earlier years.  Grandma got to be there too.  Both Grandma and Grandpa got good hugs today. 

Mary Ann slept a little later than usual.  She spent a couple of hours with one of the Volunteers from Church.  While I was away from the house during that time, reading, thinking and watching for birds at a nearby lake, it appeared that the time went well at home.  Mary Ann and her Volunteer Visitors seem to enjoy each others’ company.  Today, the Volunteer read to her from a novel they have been working on together.   She had with her the ingredients for a very tasty Asparagus Quiche.  We thoroughly enjoyed having a piece of that for lunch before leaving for the concert about an hour away. 

We enjoyed the concert, the music was well chosen and very well-performed.  The Children’s Choir of which our Granddaughter is a member sang first, and a choir of high school-aged girls sang some very interesting and unusual pieces.  All the music was very engaging and entertaining.

Afterward our Son and Daughter-in-Law treated her parents and us to dinner at a Cheesecake Factory restaurant.  It was an early Mother’s Day present for the two Grandmas. 

We went to out kids’ house for a while afterward and then headed home.  When we got home Mary Ann and I both had a little bit to eat since we the meal out was in the mid-afternoon.  Mary Ann struggled a bit with the food.  She started doing something she has done on occasion in the past.  She started what appeared to be cleaning her fork in her ice water.  She did it with the for she used for some pieces of meat.  Then she did it again with the spoon she used when eating some of her favorite jello (Seafoam Salad, if I remember the name correctly).   I asked her why she was doing that.  She said she was eating the ice.  It seemed that she was saying that to cover the fact that she really didn’t know why she was doing it. 

Later, she was washing her hands and spread some suds on her forearm.  I asked her if there was something there that needed washing.  She answered that there was not, but that her mind had told her to do it. 

She seemed to me to be a bit disconnected during the afternoon.  Since we returned from the last trip away from home, she has seemed to be confused at times, and she has slept during the day more often than has been so in the past.  She has struggled more with hallucinations. 

The confusion for me is that there is no way to know if what I am observing is really a decline, or just a cluster of glitches that will eventually pass.  We have experienced declines that have lasted, and we have experienced changes that came and then left after a time.   I may be reading too much into some minor miscues. 

Tomorrow, Mary Ann will have a small Basal Cell skin Cancer removed.  She has been through this before.  The word Cancer scares her.  The Dermatologist and I have both explained that this particular kind of Cancer is very treatable and not at all dangerous when removed at this stage.  She has still voiced deep concern. 

How she responds to this procedure will reveal more about whether she is in a lasting decline or just a temporary move. 

Caregivers are often confused by circumstances such as these.  We just don’t know what is happening.  The challenge for us is to deal with the feelings associated with a change.  If we work through the process of grieving the loss of one level of functionality and alertness, we are vulnerable to more confusion if there is improvement.  Then comes another round of grief if the decline comes again. 

Over the years I have observed an odd response especially in the close family members of someone who has come to death’s door on account of an acute Cancer.  If the person rallies and regains strength, there are sometimes feelings of resentment and frustration in those who have been a part of the journey.  It is as if they have gotten down the path toward acceptance only to be forced to backtrack to an earlier place. 

The result of traveling back and forth in the grieving and acceptance process is sometimes a sort of numbness that sets in.  People are afraid to let themselves feel much at all.  They have felt sad, only to be jerked out of that mode by their Loved One rallying. They have celebrated improvement and become hopeful for continued better days, only to have their hopes dashed by the next relapse.  I have heard people talk about feeling angry at the person who is sick when they have rallied again and again after being at death’s door. 

It is an odd response.  It is embarrassing.  People don’t want to admit to those feelings.  In my role as a safe person to talk with, a person who is bound by a vow never to share what is told in the context of confession, I have heard people admit to feeling angry when their Loved One has rallied. 

Caregivers have all those feelings as the roller coaster climbs high, only to plunge again. 

Tomorrow morning may bring change for the better.  It may not.  Tuesday morning may bring change for the better.  It may not.  The same goes for Wednesday, Thursday, Friday, Saturday and next Sunday — and every day after that. 

I am grateful to have a Source of strength that provides a sort of beacon as this journey moves in fits and starts, steps forward and steps back.   Each of us needs some place to turn for internal strength.  Whether it is rooted in a particular spirituality or in our basic humanity, strength is needed as Caregivers negotiate their confusion. 

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.