The Caregiver Calling

There were eight of us.  Mary Ann left and there were seven.  Now there are six.  Today Marlene ended her journey here with us.  The eight of us met in 1972 when we moved to Prairie Village, Kansas, and a male child was born in each household.  Each of us also had an older girl.  We spent the next fifteen years in the same congregation with lots of folks who became friends.  Three couples had pretty much grown up together and all became fast friends at college.  As time went by, Mary Ann and I were sort of adopted into the group.  A couple of times we vacationed together, even after we had move to Oklahoma City.  The relationship continued through the nine years in Oklahoma and the last fifteen years here.   

While Charlie and their Daughter and Son and families are the hardest hit and own the grief at Marlene’s departure, we were close enough, like family, that the place where the grief and sadness live in me has stirred.  Bad planning on my part combined with Friday afternoon traffic resulted in my missing the time at the hospital when the life support was removed.  I did make it to the house to spend just a few minutes with Charlie, his Daughter and Son-in-Law.

Marlene and Charlie went to Mayo Clinic fourteen years ago and heard the diagnosis and prognosis, “Go home and get relationships in order, make peace with God.  Marlene will live two to five years before the ALS takes her.”  That was fourteen years ago!  She died today.  Charlie and I observed today that we both had married people with powerful strength of will.  From our vantage point it sometimes seemed like stubbornness.  Both of them defied the odds and lived with dignity far beyond reason given the ravages of their diseases. 

A little over two years ago, I decided to retire to take care of Mary Ann full time.  In the letter to the Congregation, I quoted an email Charlie sent me when I first announced my decision.  About two years earlier, Charlie had retired to part time work to take care of Marlene.  Charlie wrote:

“I’m pleased to hear that you have reached your decision. The decision you faced was not “if” but “when”. Now that you have come to the conclusion that June 30 will be the date, you will have time to acclimate and I’m confident that over time you will become more comfortable with your decision to put family first. Keep in mind that serving as a full time caretaker for Mary Ann is not only a duty, but an honor – no one else knows her as well as you and no one else could do a better job. We pray that you will find your new role fulfilling.” 

As Charlie predicted, I did find that role fulfilling.  It was truly an honor.   I have no doubt that it is so for Charlie, as it is for me, we would chose to do it again without a moment’s hesitation. 

I discovered decades ago that when a loss comes, it is compounded by any earlier significant losses.  The losses accumulate.  As I drove over in hopes of making it to the hospital in time, the feelings stirred and the deep sadness was exposed.  At some level, I will be dealing with my own grief as Charlie and his family deal with theirs. 

All of us who have known Marlene recognize what  a remarkable person she has been.  Not only did she deal with her disease without complaint, but she continued to focus on others.  She always voiced much concern for Mary Ann and me in any interaction.  She turned away from herself and toward others.  As Charlie noted in our conversation, it is probably one reason that she stayed so strong so long. 

Mary Ann and Marlene shared a perception of their respective realities.  Neither of them accepted the fact that they were sick.  They lived as if there was nothing wrong with them.  Now they are both done with their battle here.  They are fine.  We are not.

Monday morning will be the funeral.  It will be a hard day for all of us.

This afternoon, I went to see Manheim Steamroller’s Christmas Tour performance at the Performing Arts Center here in town.  The Season of Thanksgiving/Christmas/New Years’s is already beginning.  The Christmas Music is arranged in accord with their usual stylized form of light jazz/New Age music. 

It is the first Christmas activity in the new configuration of this season of the year, without Mary Ann.  I already don’t like it, but that is just the way it is.  The performance made use of every imagineable sort of sound that can be produced by both unplugged and electronic instruments.  The volume was powerful but not painful.  The visuals on the screen behind the performers sometimes included actors and dancers dressed in period costumes providing a visual story to go along with the music being played.  Sometimes it was hard to tell what were previously recorded sounds and what was coming from the people on the stage.  They were perfectly coordinated. 

Since music has the ability to bypass my defenses, for a time it was pretty emotional.  I let the feelings have there way, but they never broke through to water running down my face — close , but not quite.  I can tell that this season will just not be very easy to negotiate.  I remember that it was already pretty tough last Christmas.  In fact, since retirement, there has been a part of me that just wished we could skip December and go right into January. 

It was helpful that after the concert there was a gathering of the folks from the Hospice Grief Support Group at the home of one of the members.  While we did not talk about the challenges of dealing with the holidays since it was just a social get-together, being around folks who are in similar circumstances was comforting.  Going to an empty house after the concert would have been pretty difficult.  

Before the Parkinson’s moved into the later stages, Mary Ann was a master at doing Christmas.  She had to learn to manage without much help from me since it was the busiest time of the year as a Pastor.  She started buying gifts some time early in September.  By the middle of November, she already had a full complement of gifts.  In fact, sometimes she would forget all that she had gotten and keep getting presents after there were already plenty in the closet.  Every once in a while, we had to do an inventory of presents to be sure that the numbers and size balanced out for each of the Kids and Grandchildren. 

I was a spoiled sport relative to outdoor decorations.  She would have loved them, but I just never could get into it since there was so much going on at work (at least that was my excuse).  She always did a nice job decorating the inside of the house.  Her Christmas quilt was always hung in our bedroom, replacing the one with the basket pattern in each block.  The Manger Scene came out with the wise men placed away from the manger until Epiphany came. 

We would often get a Charlie Brown Christmas tree (the Kids always made fun of the trees we picked out).  In early years we went out and cut it down.  Then later we got trees from a Christmas Tree lot (still Charlie Brown trees).  Only in recent years did we finally get an artificial Christmas Tree.  Then came the ornaments, an eclectic variety.  Some years there was a theme in terms of color, but most often there was a wonderful variety of styles and sizes and shapes.  There is the sleigh that my Grandfather made — the cards go in that. 

She loved Christmas so much.  Last year was difficult since she had started the decline.  We were pretty limited in what we could do.  We did manage to get the tree up.  I don’t know yet what I will do this year.  It is hard to imagine bringing the tree up from the storage room, putting it together and decorating it.  I can understand why those who have lost a Loved One struggle so at this time of the year.  So much of what usually is done seems sort of pointless.  The center of the season, the core message remains powerful and meaningful.  The decorations are pretty, but they are not the center.  

The goal will be to focus on the unconditional love of our Creator and the new life offered through the One who joined us in our human journey bringing hope in the face of whatever comes.

I guess I feel pretty blessed.  This has been “All Saints’ Day” with the tradition of reading the names aloud in the service.  Mary Ann’s name was not read.  None of the names were.  There was a list in the Service Bulletin. but no reading.   I am sure her name was read in the congregation I served the last twelve years of my ministry, but I was not at home and could not attend that service. 

I am currently in Kentucky visiting Daughter Lisa, Denis and Granddaughters.  I knew that Lisa had requested that Mary Ann’s name be included on All Saints’ Sunday here, and my experience in the past concerning the tradition resulted in the expectation that it would be read aloud.  I felt emotionally vulnerable and expected to be impacted by the reading.  While I was not sure I was ready to hear it, I was certainly disappointed when it I did not hear it. 

I really like how the worship is conducted here in Lisa and Denis’s congregation. The music is wonderful.  Pianist Todd has improvisational skills combined with an obvious reverence that results in a welcoming tone throughout the service.  I like the Pastor, appreciate the preaching.  I just missed the reading of the names aloud.  It was a sad morning in that regard.  On the other side of it, Granddaughter Ashlyn was in a hugging mode.  She kept her Grandpa close in church.  She was sitting next to me and sang out clearly on the songs.  She and Granddaughter Abigail have perfect intonation when they sing.   Both Ashlyn and Abigail drew pictures for me during church.  I realize that I need to focus on life now, but the grieving and remembering are still an important part of my reality.

I remembered one All Saints’ Day when after the service a parent asked why their daughter who had died early that year was not included.  I was horrified that it had not gotten in since I had done the funeral.  I was able to discover the reason it wasn’t automatically on the list to be read.  The pattern for doing statistics for our national church body demands a certain way of recording folks.  The usual process used to obtain the names for the list did not work in her case.  It should have been caught and included.  I apologized, but it couldn’t undo the damage.  I now understand more fully the impact of not hearing read the name of someone loved deeply and lost in death. 

It is now Monday evening and I have returned home.  The feelings of sadness hung around yesterday (Sunday) and throughout most of the day today as I traveled.  It is always hard to say goodbye when coming to the end of a visit with family, especially the Kids and Grandkids.  The sadness is, of course, missing Mary Ann.  Lot’s of things brought her to mind.  It is always interesting to analyze the path from some random thought through the mental twists and turns that lead to from whatever the first thought was to missing Mary Ann. 

The sadness is also just feeling sorry for myself.  I have loved solitude for so long that it is hard to admit how much I don’t like being alone now.  Mary Ann was not at all verbal, especially in the last few years.   She did, however, have a strong presence.  She was in the car when we traveled, with needs that had to be met.  She was at home when I came home from wherever.  Her needs filled our lives with activity.  I was by myself in the car for nine or ten hours.  I came home to an empty house.  It is hard to make sense of this new reality, to find meaning and purpose in life without someone else with whom to share that life.  I recognize how pitiful this sounds, since there are people by the tens of millions who live by themselves and have fulfilling and meaningful lives.   I will get there eventually.  There are lots of times when I am on course to wholeness.  There are just times like these when the sadness hangs on for a while. 

Tomorrow is a very full day.  Hopefully, there will be little time for the sadness.   Focusing on immediate tasks and the needs of others helps diminish the power of the sadness, allowing joy to return.

It is hard to know where you are if you have no map.  Actually, there is no map.  More correctly, there are maps, but none of them can tell me where I am.  There are all sorts of descriptions of how the grieving process goes.  Some of them, most of them are useful in helping find a vocabulary for talking about grief.  None of them provides an accurate map of where the grief is going, when junctions come, what ways to go when they do, what the destination looks like and where the one grieving is in relationship to it, whatever it looks like. 

There are studies that reveal what people have said about how they feel at certain points in their grief journeys.  No matter how many studies are done, or how large the pool of subjects is, there is no way to predict how any particular person will move through the grieving process.  The studies can provide the average time for this or that, the way the average person who is grieving experiences each step in the process.  Have you ever noticed how unusual it is for the high temperature and the low temperature for a given day to perfectly match the average temps for that day?  It would be pretty remarkable to find someone exactly average in height, weight, hair color, eye color, were all the residents of the US to be included in the pool from which the averages were detemined. 

The grief process is unique to each particular person who is grieving.  The last few days have been puzzling.  There have been times I have felt very good, a whole person again.  There have been times I have felt very much alone, not whole at all, missing Mary Ann terribly.  I remember when Mary Ann and I were trying to manage all the challenges of medications and side effects, the roller coaster ride of daily, hourly, changes.  It became clear that Mary Ann was living right on the margin between being functional and being non-functional.  It took very little to slip from one to the other.   The grieving process, especially early on, is very much like that.  Grief and healing are the shoulders on either side of the road.  It doesn’t take much to drift on to one shoulder or the other.

One of the challenges of caregiving was figuring out where we were in our journey.  We knew where it ultimately would lead, but there were no markers telling us where we were in relationship to that destination.  That was part of the reason that we lived in denial.  It wasn’t so much denial as it was having no clear roadsigns telling us how far we had to go yet. 

If you read the posts that I wrote during the last year and a half of the battle with Mary Ann’s Parkinson’s and the Parkinson’s Disease Dementia you will see three words or phrases used very often.  One is “Margin” as described above.  Another is “Threshhold,” and the third is “New Normal.”  Those words fit how we lived during the toughest years, and they fit the process of going through the grief.

As we walked that narrow margin between functionality and the lack of functionality, there were theshholds that we crossed from one level to another, most often to less functionality.  When that happened, we would have to locate the new normal.  The difficulty in dealing with crossing a threshhold to the new normal is that there was no map showing us where we were on the road.  There were no signs, no markers revealing that a threshhold was coming or that we were crossing it.  The only way we could tell if a threshhold had been crossed was if we looked back long enough to conclude that there would be no return to the former functionality.  We could only identify the threshhold after we crossed it.  Once we recognized it had been crossed, we could get on with the task of identifying and accepting the new normal.  Once that was done, we could then focus our time on accommodating to that new normal — functioning as well as possible in our new location, new normal.

This weekend has brought those three words and phrases into this journey of healing that I am on.  I am moving along a narrow margin bounded by grief and healing.  There seem to have been some threshholds traversed along the way.  I could not see them coming; they were not obvious when I was crossing them.   There were no markers or signs that said, this is where you are.  I have identified after the fact, transitions from one level of functionality to another.  My code language for good health is “wholeness.”  I don’t really know what that destination looks like or if it is even a destination rather than a way to think about the journey. 

It is hard to identify a new normal, in this journey toward healing.  There are no reference points.  Studies can describe pieces of the truth about such a journey, but no one is average enough to fit the descriptions perfectly.  I have to say, that looking back from where I am now, it seems to me that the journey I am on is one of healing.  Healing is seldom free from pain.  I have first hand knowledge of that truth as the saddle sore (my riding trophy) heals slowly.  The pain of grief remains readily accessible.  It is now no longer disabling pain, but pain nonetheless. 

Those of you who read this need to know that what I reveal here about the grief does not shape how I function when I am with other people.  Whenever, whatever threshholds have been crossed, the normal in which I am now living allows me to enjoy other people, laugh and celebrate, enjoy the uniqueness of friends, acquaintances and strangers.  The grief is near, but I remain on the journey to healing.