Life History

Archived Posts from this Category

December 1, 2010

Tried, but couldn’t stop the tears.

Posted by PeterT under Family, Life History, Therapeutic Activities, Uncategorized | Tags: , |
1 Comment 

The concert was almost beyond description in how wonderfully they sang and played.  I had in my mind when I drove over to KC to hear Granddaughter Chloe sing in the University of Missouri, Kansas City’s [UMKC] Children’s Choir that they would sing, along with another small choir of high school girls also sponsored by UMKC.  When I arrived, a Trombone Ensemble was playing Christmas music from the balcony of the church.  That was followed by the first piece, an unusual but very effective arrangement of “Carol of the Bells” played by the church’s (Atonement Lutheran) very large and accomplished Handbell choir.  Then began an evening filled with an array of classical and contemporary pieces of Christmas music, by a variety of choirs and instrumentalists from the Conservatory of Music at UMKC.  After putting together all the singers in the various choirs and the instrumentalists, there appeared to be well over a hundred performers. 

There were classical pieces from many periods of music, sometimes with choirs singing back and forth between stage area and balcony.  Chloe’s choir sang one song in German and another in French.  They did a great job.  There were more contemporary arrangements of some of the Carols.  The audience was invited to sing a couple of the familiar Carols. 

They were so skilled and well directed that it was possible to simply lose myself in the music, drinking it in, watching the performers, celebrating the marvelous impact of the sounds and visuals (the faces of the perfomers).  Son Micah put his arm around my shoulder and reminded me of my years of singing in choirs.  From the time I was about 14 until I graduated from the Seminary at 26, my life was all about singing in choirs.  I had the joy of serving as President and Student Conductor of five of those choirs spread over my high school and college (pre-seminary) years.  There were many choir tours including a three week tour to England, Holland, Germany, Austria and Switzerland.  There was the chant choir that rehearsed regularly and sang at chapel weekly during the three years on site (other than the Internship year) at the Seminary.  Even after that there were two or three years while serving a parish that I sang in a semi-professional choir called Schola Cantorum, a choir sponsored by the American Guild of Organists’ Chapter in Kansas City.

I was lost in the music until the choirs all gathered together to sing the last three pieces.  Of course, with so many voices they filled the room with sound when they sang, “Do You Hear What I Hear.”  For some reason, that is when it hit me how much Mary Ann would have loved being there, hearing the music, seeing Chloe sing.  I held it together with great difficulty.  Then came the all the college age singers, all eighty or hundred of them, along with a brass ensemble, and organ performing together doing “Joy to the World.”   The sound was overwhelming.  I could no longer keep it together.  The tears started streaming down my face and then there was the shuddering that happens when it finally breaks through.  I turned a bit away from the kids and tried to keep from being noticeable to anyone around me.  It is terribly hard to accept that she is gone from here.  I hate that she was not there to experience it.  I can’t change what has happened.  I did not lose myself in the grief.  The tears were appropriate, and in a way, they honored her.  Since crying has not been a part of my usual expression of emotions, when they do come, it is only when I can no longer keep them in check.   I work especially hard at keeping them under control when I am in public. 

We ran into Bob and Pat, a couple from my first Parish in the Kansas City area.  They were there since it was a fund-raiser for Harvester’s Food Bank that serves tens of thousands of folks in need of food through the many agencies who obtain that food from Harvester’s.  What makes that dimension of the evening especially meaningful to me is that in the mid-1970’s, it was a couple of folks from the congregation of which I was a pastor who started Harvester’s.  One of them, Jerry, had a cold storage company and the other, Bob, was a sales manager for Libby foods.  It was just a dream at first.  It has now grown beyond anyone’s imagination.  I recalled with Bob, one time when our congegation picked up windfall apples for Harvesters.  I drove a truck that could carry 20,ooo pounds.  No, we did not gather than many apples, but the truck was so large that when I drove it to the church, I was stopped by the police.  There were no trucks allowed on the Kansas side of State Line road.  I guess I would have been all right if I had been driving north, in the lane that was on the Missouri side of the mid-line.   When I explained what I was doing, the police officers allowed me to continue the few blocks to the church without issuing me a ticket. 

Last night was an evening I won’t soon forget.  It is quite a ride I am on.  Sometimes it just takes my breath away.

 

November 13, 2010

And So It Begins.

Posted by PeterT under Daily Challenges, Life History, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , |
1 Comment 

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.

 

November 1, 2010

I’ve Lost the Map

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , |
[3] Comments 

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.

 

October 24, 2010

Was I Her Husband or Her Caregiver?

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
[2] Comments 

When taking care of a Loved One who is declining, there sometimes comes a point at which there is a transition from Husband or Wife, Mother or Father, Son or Daughter, to “patient.”  A sort of clinical distance emerges and the tasks are carefully and responsibly and compassionately done with gentle concern.  That clinical distance helps the Caregiver keep from getting lost in the emotions, disabled by his/her own feelings.

Up to the very end, I never ceased to be her husband first and foremost.  There was never any clinical distance.  Mary Ann was never a patient to me.  She was my wife.  The way I kept from being disabled by my feelings was to live in what I have recently described as intentional denial.  There was never any waning of the intimate romantic feelings as she became more disabled.  In fact, if anything, they grew stronger as our battle with the disease got tougher.  Certainly we had all the usual times of irritation and snipping at one another.  That comes with longevity in a marriage.  It means nothing other than that the relationship is secure enough to provide the freedom to be grumpy with one another at times. 

What I will describe next will sound as if it is at odds with what I just said in the previous paragraphs.   What I said above and what I say next are both the truth, even if it seems impossible for that to be so.

After I retired to take care of Mary Ann, I struggled to find a way to feel a sense of accomplishment each day.  When I was working there were all sorts of external signs that I was doing something worth doing, something that had meaning and purpose — a job.  When I retired, everything that had confirmed that I had a job ceased.  One day I had a job as the Senior Pastor of a large congregation with a staff for which I was responsible.  The next day, I was at home with Mary Ann, helping her just as I had been the time I was at home and not at work before I retired.    

There was no tangible evidence that I had worth.  Constant care was needed, so I was working more and harder than when I was actively serving the parish.  There was no paycheck, nor were there people telling me that I was doing a good job.  It took some months and some mental gymnastics (and reflecting on the matter in dozens of posts on this blog site) for me to realize that what I was doing with Mary Ann was not only as important, but more important than what I had been doing when I was working for pay. 

The result of that realization was that the caregiving I was doing became my job.  I came to treat it as an important job, each task needing to be done well, taking all the attention and skill I could muster.  I needed to become expert at it, doing it in a way that reflected back to me a sense of accomplishment. 

Caring for Mary Ann became my job.  When that transition came, I felt as if I was freely chosing the job.  There was no reason for resentment since what I was doing was my profession.

Caring for Mary Ann became my job, but Mary Ann never ceased to be or to feel like my wife.  I was her husband and she was my wife.  I do not deny that what I have just said makes very little sense.  All I can say is that is exactly the way I felt.  For the last two years especially, when I retired to do full time care, Mary Ann was my wife and caring for her was my career. 

I can’t explain to you how it worked, why it worked.  It just did.  I am grateful that it did.  Mary Ann never had to suffer the indignity of being my patient.  I didn’t have to give her up until she died.  I got to have my Beloved Wife with me every minute of our marriage.  The result of doing it that way meant that when she died, it hit very hard.  We did not ease into it.  I did not get accustomed her leaving before she actually left.  It has been excruciatingly painful, but I am not sorry that we did it that way.  Even knowing the depth of the pain, I would do it no differently were we to have to do it again (God Forbid!!!)  Yes, I would try to be kinder more of the time, more understanding, less grumpy, more affectionate, but I would not change the way we approached our relationship. 

I was her Husband and I was her Caregiver.   She was my wife and taking care of her was my job.  While thinking about it that way helped me feel worthwhile, the truth is, caring for her was exactly what it meant to be her husband.  We loved each other romantically, in spirit, in words and in actions.  As devastating as it has been to lose her from here, I feel full of deep joy that we got to experience that kind of love.

 

September 22, 2010

First Look at Grave Marker

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
[2] Comments 

I had not felt well mid-morning today, so I ended up bailing on lessons and staying in.  Later after feeling a little better, I finally just needed to get out.  I headed over to church to Parish Nurse Margaret’s Wednesday Blood Pressure Clinic.  My BP was fine, but as I was driving there, I glanced over at the cemetary toward the spot where Mary Ann’s ashes are buried to see if there was any indication that the Marker had been placed.  It appeared it might be there. 

On the way back I debated about it but decided to go ahead and stop by to see if it actually was there.  It was.  The Granite Marker has a Cross and a vine on it (as in the Vine and the Branches in the Gospel of John).  Then our last name is in large letters in the center at the top.  Below it are both Mary Ann’s and my names with the year of birth next to them.  Mary Ann’s, of course, also has the year of her death. 

I am not really sure how it felt.  I realize that doesn’t make much sense, but my feelings were just not clear.  I was a little apprehensive about how my gut would react when I saw it.   There was a feeling of heaviness, maybe the weight of the loss.  There was not any particular sense of her presence there since we were all there at the moment she left the planet.  The stone is a solid, unmoving reminder that she has died.  My name is there on that stone, a clear declaration of my own mortality. 

I am writing this account on The Caregiver Calling site since a portion of the grieving is the loss of the role of Caregiver and the one about whom and for whom I cared much of my and her lives.   I said in the last post on this site that I would write some thoughts for Caregivers as they do their task.  Many of those thoughts have implications for most of us in our regular daily lives.  It is also true that at some time during our lives most of us will be in a Caregiving role.

The first thought about caregiving is some thing that friend Charlie emailed to me when I first announced that I would be retiring to take care of Mary Ann full time.  He cares for his wife Marlene who has had a form of ALS for very many years.  Some time earlier, he had retired to very part time work to be with her.   He referred to doing that kind of caregiving as a privilege. 

To be a Caregiver truly is a privilege.  Saying that is not just a way to frame the opportunity so that it sounds more palatable.  It is an honor to have the chance to make a significant difference in someone’s life.  So much of what we do is about bartering, I’ll do this for you and you can do that for me.  Lots of couples live independent lives, each taking care of him/herself, sharing space and maybe kids.  Even when the relationship is close and the marriage healthy, there is only so much we can do to show that love to one another.   

When a debilitating illness or something similar arises so does the opportunity to give what is truly needed.  Mary Ann needed my help.  In yesterday’s Hospice Grief Support Group,  the Leader asked me what would have happened to Mary Ann if I had not been there and cared for her.  In answering I remembered something that Daughter Lisa said to me very many years ago, when we were talking about how to get some help.  Lisa had been an Administrator at a CCRC (multi-layered facility for Independent Living, Assisted Living, Health Center, Dementia Building).   She said, “Dad, Mom would not qualify for Assisted Living.”  She said that to help me understand just how much care I had been providing and how much was needed.  Volunteers from church were filling in while I was away from the house doing my job as Pastor.  Without my care she would have spent many years in a Nursing Home setting.

I had the privilege of providing personal one on one care for her until the day she died here at home.  When I was serving as a Pastor, I could make a tiny difference in the lives of many people.  As a full time Caregiver, I could make a huge difference in the life of one person.  By giving me that privilege, Mary Ann made a profound difference in my life — in addition to giving me so many years of her life as my wife, Mother of our children. 

We kept our marriage vows to one another, “in sickness and in health.”  To have had the chance to fulfill that promise would not have been our choice, but having that chance filled our lives with meaning.   We experienced the worst and the best of times.  Sometimes the best was to be found right in the midst of the worst.  It really was an honor and a privilege to care for Mary Ann.  It was a gift to me that she allowed me to do so.

 

September 18, 2010

How would you finish this sentence?

Posted by PeterT under Daily Challenges, Hospice, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
Leave a Comment 

“If not for me, the world would have missed….”   The Hospice Chaplain began his message with that question during the Memorial Service last Thursday evening led by Midland Hospice, the organization that sponsors the Grief Support Groups I attend.   

It is not unusual for people to be so self-deprecating that they find it hard to presume to suggest they have made a difference in the world.  It seems arrogant to talk as if we are God’s gift to the world.  If we happen to be in the mode of feeling sorry for ourselves, we will claim we have done nothing anyone will miss.  If we have had a critical parent or spouse or close friend, we may have concluded that just as they have said about us, we do not measure up. 

Sometimes it is actually our inflated ego that sabotages our ability to finish that sentence with anything of substance.  What I mean by that is we sometimes demand that for something to qualify as an achievement that would be missed, it has to be something so much better than what the ordinary folks can do that we received accolades for it. 

What ordinary things have you done?  They are likely to be the things that the world would have missed most.  That you have survived what you have been through is a remarkable accomplishment — no matter how it compares to anyone else’s accomplishments.

The Chaplain was very insightful when he followed that question with some clarification.  He pointed out rightly that most of us struggle with memories of things we did not do well, times we were impatient, harsh, unsympathetic, times we did not do what we should have done, had we been better caregivers.  He urged us to set those thoughts aside for the moment, and focus on what we did do for our Loved Ones.

I have admitted here more than once that the most painful memories are memories of just how debilitated Mary Ann was getting and how little I allowed that to enter my awareness.  I was not always as sympathic and understanding of her limitations as I should have been.  This morning, a simple question some neighbors asked when we crossed paths at the Farmer’s Market planted a seed that sprouted twenty or thirty minutes later.  The question was about cooking, did I do the cooking for Mary Ann.  I admitted my limitations in that area, but answered yes.   Later, as I was leaving, my mind wandered back to that conversation.  A silly claim that I had made came to mind, that I made the best peanut butter and jelly toast around.  I remembered toasting the bread to exactly the color that she liked, cutting it into four squares and feeding it to Mary Ann, making sure each bite had some jelly and peanut butter in it.  I often added two slices of crisp bacon, each cut in half so that every quarter of the toast had a half slice of bacon on it.  I had a certain order of squares so that she would not have too much dry toast in any one bite.  I anticipated when she would need a drink.  Thinking about that brought back the painful feelings to a level I had not felt in the last three weeks or so.  It was not that impossibly intense level that that could hit like a brick during the first weeks, but it was painful. 

I remembered how good it felt to be able to feed her in a way that brought her some pleasant moments.  I longed to be able to do that again.   As that pain settled in (it stayed for a while), I realized that feeding her that peanut butter and jelly toast with bacon was something that she might have missed, had I not been caring for her.  Obviously, I can’t know what would have happened if I had not existed — whether someone else would have done it.  That is not the point.  I did do it.  I made a difference in her world, just as she did in mine. 

There are, of course, some obvious ways of finishing a sentence like that.  I suspect our Children and Grandchildren would have missed mine and/or Mary Ann’s presence in the world.  Those are easy answers.  It is a healthy exercise to think about the impact we have had, the ordinary impact, just being a part of people’s lives.  Simply having answered the Call to Live by continuing through each day.  I have spent time in conversation with many suffering from depression over the years.  When someone is depressed, just trying to finish a sentence like this one is more depressing.  The Chaplain made the point that each of us in that room had survived our grief until that moment.  We had survived the death of someone we loved.  Just to have survived what we have been through, whether the loss of a Loved One or the loss of our confidence and sense of self-worth that comes whith depression — just to have survived is an achievement worth adding where the dots are in that incomplete sentence.   

There are so many things that I did not do for Mary Ann or did not do well.  She deserved better.  At the same time, I did make a difference in her life, as she did in mine.  The greatest gift we gave each other was ourselves.  We stayed in relationship with each other.  In doing so we did make a difference.  Each of us would have missed a lifetime of the other’s presence, had we not been there for one another.  As painful as it is sometimes to remember, it is comforting to remember what each of us brought to the other.  That remains.  We both get to keep those memories.

 

September 16, 2010

“But Mary Ann, I’m Doing the Lord’s Work!”

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , |
1 Comment 

Whatever else I did or didn’t do, I knew enough never to say that!  I never said it for one thing, because it would be silly to claim I was doing the Lord’s work if I was not fulfilling my Call as Husband and Father.  Being a Husband and a Father is doing the Lord’s work.  Working for the church is just the way I chose to live out my Vocation, no more or less important than anyone else’s Vocation.  Every Christian is Called to live his/her Christianity in every dimension of their life and work. 

Another reason for not saying those words, “But Mary Ann, I’m Doing the Lord’s Work,” is that, assuming they were spoken to suggest my stuff was more important than her stuff, the Mizel wit would cut me down to size with a sharp blade. There was no room for pretense with Mary Ann.  I was her husband, she was my wife.  My job happened to be to serve as a Pastor of a congregation.  She kept me from becoming self-important.  The result was that I was more genuine in the way I did Ministry.  My relationship with people was more real on account of pretense being an unacceptable option. 

That is a gift Mary Ann gave me that impacted my work.  The battle with Parkinson’s had a powerful impact on the way I did ministry and how that ministry was received.   Certainly, there was an impact on my time and energy.  I had to delegate, accept help, find efficient ways to accomplish the ministry so that the Congregation got from me the job they had Called me to do.  Being up multiple times during the night, pretty much every night, for the last eight or so years in the Ministry, had an impact.  The Leadership of the Congregation insisted on my taking care of myself to keep functioning effectively.  The Staff helped in every way possible.  

One gift was that we had to function as a team, each helping the other be as effective as possible.  Members seemed more willing to take on tasks, realizing that the help was very much needed.  As time went by, the challenge of the Parkinson’s resulted in a structure at work that could remain functional and healthy even when Mary Ann was in the hospital and I needed to be there full time day and night.  That actually turned out to be a strength as we dealt with vacant Staff positions at various times during those years. 

I am inferring from observations mostly and occasional comments, another gift our situation gave to my ministry.  There was an authenticity when I was preaching and doing Pastoral Care that seemed to come from the awareness that we were living through very difficult times.  Whether or not others perceived it, I felt freer to talk more boldly about people dealing with challenges since what I said (at least in my mind) could not be easily dismissed as shallow platitudes.  Even if no one else was aware of it, I felt more deeply than in years past the weight of what message of the day had to say to real life situations. 

The place it seemed to me to make the most difference was in hospital visitations and counseling situations.  Those who were suffering from medical problems seemed to talk with me and listen to me as someone having a common experience with which we were both struggling, both finding strength from our faith.  Again, there was an authenticity in our communication that was rooted in the fact that we were all in the same sort of circumstances.  The words I came to say spoke to me as well as to them.  Those who were struggling with painful relationship issues or bouts of depression, could not easily dismiss my counsel, since it came from personal experience in dealing with issues that could be depressing and destroy a relationship.  It was not easy for people to just feel sorry for themselves in front of me and tell me that I didn’t understand what they were going through. 

Of course, I also learned to be far more understanding when folks were going through tough times struggling to survive.  Having seen the boundaries of my capacity to cope with our situation, I could empathize with those living on the edge.  I knew what it felt like.  I knew what it was like to need help and be forced to accept that I could not make it without reaching out to others, accepting their help. 

Now that the Parkinson’s and its allies have done their worst and taken Mary Ann from life here, from those who knew her and loved her, from our Children and Grandchildren, from me, there is another gift that has come.  It is a tough one to accept, but I have no choice.  I now understand just how hard it is to lose a Spouse after decades of marriage.  I understand what it feels like to have a heart broken by losing the one who filled life with meaning and purpose, the one the Lord called me to love and care for these many years.

I also know more clearly than ever that there is healing and new life for her that is now more than she has ever known before.  I  know, not just intellectually, but experientially that because she has new life, I am free to live again, to start a new life.  I am free to incorporate into my life the impact she has had on me in the 48 years I have loved her, along with the unconditional love of a Lord who refuses to give up on me, plus the impact of so many who have touched my life in the years in the Ministry — I am free to say yes to the Call to Live.   Only a Lord who brought Resurrection out of suffering and death could bring out of twenty-three and a half years of battling a disease, so many good gifts.

 

September 14, 2010

Mary Ann’s Gift to a Congregation

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , |
Leave a Comment 

The package was pretty ugly — Parkinson’s Disease, but the gift was beautiful.  Actually, God gave the gift.  Actually the gift was already there, Mary Ann’s Parkinson’s provided a tool for opening the package, pulling out the gift and letting people see it. 

Sometimes harsh judgments are made about churches and church folks.  There are the caricatures of people who attend church regularly as hypocrites and self-righteous, harsh, judgmental and unloving people.  Of course all those things are true to a certain extent, just as they are true of the general population, whether they happen to go to church or not. 

What actually has been so in my experience with congregations, ones I have served in forty years of ministry and many I have heard about from fellow clergy is exactly the opposite.  I have seen true community in action in my years in the ministry.  By true community, I mean people who are connected in a way that frees them to express that connection in action — people who help one another. 

Community was expressed in a former congregation by surrounding a handicapped member with support in every way, functioning as family for her.  When the bombing in Oklahoma City took one of the members of that congregation, her husband was surrounded with loving and caring actions.  When the bombing happened, I saw first hand an entire city express community, as crime ceased for a time, people came together to support one another, doing anything and everything they could to help those suffering, to support the ones who were doing the hands on rescue work.

The congregation I served the last twelve and a half years in my role as Pastor of a congregation had always expressed community in one way or another.  People visited and cared for those who were going through difficult times, especially due to health or aging.  The gift that came with Mary Ann’s Parkinson’s was an opportunity, an opportunity to go public with those expressions of community. 

Mary Ann’s circumstances provided some very clearly identifiable needs.  The needs were concrete.  I could not continue to serve as Pastor of the congregation without those needs being filled.  The response was a natural one for people who understood and lived in community with one another, quietly going about the business of supporting one another in times of need.  My vantage point may have skewed my view of reality, but it seemed to me that Mary Ann’s and my needs, so public, and the response to them, helped crystallize the self-image of the congregation.  What had always been so gained a higher profile and became visible.   That visibility became a witness to the poeple in the congregation and others who learned about it. 

I think the truth of the matter is that people in community with one another find much satisfaction in helping each other if they can figure out what to do that will actually help.  People surrounded our household with the basic needs of companionship for Mary Ann with all that demanded in terms of help with personal needs and whatever came up.  There was sometimes food brought over, grocery shopping done when we were homebound or Mary Ann was hospitalized.  There were sometimes basic household needs covered, chores done, ironing done.  Margaret, Carol (single-handedly for over six years), Mary, Edie, Daughter Lisa, all who coordinated  clusters of Volunteers, gave them instructions on what to do, answered their questions.  A free online scheduler just for that purpose helped organize times and tasks.  It is available at no charge to any individual who needs it: www.lotsahelpinghands.com

The specific gift Mary Ann gave the congregation was opening herself to allowing people into her life to help her.  Community can’t be experienced fully without people’s willingness to allow themselves to become vulnerable to others.  There is a risk when allowing people to help.  Will you become indebted to them?  How will you pay them back?  If you don’t pay them back, will they somehow own a little piece of you?  We simply had no choice.  There was so much help that there was no way we could ever repay all the people.  We occasionally made small symbolic efforts and saying thank you.  Mary Ann enjoyed doing an open house every once in a while, Volunteers helping with it.  She sometimes made or designed token gifts intended to say thank you.  There was just no way to do enough.  We simply had to allow the help with no possibility of ever repaying or saying enough thank you’s. 

The good news is that people helped because they chose to do so.  They helped because they have been wired by their Creator to do so.  They helped because there was meaning and satisfaction and fulfillment in doing so.  By helping, they actually had a part in the Pastoral ministry to the congregation.   Because they were doing what they were doing I could do what I was Called to do as my part in the community. 

Mary Ann’s Parkinson’s freed the true community that already existed to float to the surface and become more visible, defining the congregation in its own eyes and the eyes of those who heard about it.   

By making these observations about the gifts that came into our lives and the lives of many others on account of the Parkinson’s, I am in no way lessening the horror of what Mary Ann went through.  We would not wish that struggle on anyone.  It was not a good thing.  It was a very ugly disease that stole from Mary Ann everything she had enjoyed doing with her hands and her sharp, creative mind.  In spite of that, God brought some good gifts to her, to me, to a congregation and to our family.  More about that in later posts.

 

September 12, 2010

No More Secrets — Open Door Policy

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , |
Leave a Comment 

When the Parkinson’s was first diagnosed, Mary Ann insisted on complete secrecy.  No family (even parents and siblings) could know, no friends, certainly no parishioners — only the Kids and I were to privy to the diagnosis.  That insistence continued for five years.  She allowed a couple of exceptions for me so that I would have somewhere to go to process what we were going through.  Actually, I don’t remember if their Mom gave Lisa and Micah permission to share with anyone.  They may comment on that. 

Mary Ann had always been an extremely private person.  She didn’t think her personal life was anyone else’s business.  After she was diagnosed, she did not want people to be looking at her as if there was something wrong with her.  She certainly did not want people feeling sorry for her and treating her as a sick person.  I have shared before how hard that five years was on all of us. 

Finally, the secret could no longer be kept since there were too many outward signs of the disease.  When we moved here in 1996 Mary Ann’s Parkinson’s was public information among the Leadership of the congregation.  The secret was out from the first conversation by phone with the Call Committee.  In fact, by that time, Mary Ann’s Parkinson’s was in the form that I filled out for the file in the District office, the form that was sent to the congregation as soon as my name was put on their list of Candidates. 

It is here that the story of one gift that came on account of the Parkinson’s begins.  Mary Ann received some special attention from a group of ladies in the congregation.  She was welcomed in a way that made her feel accepted and included immediately.  I did not see all the dynamics of that inclusion, but I was thrilled at its effect on Mary Ann.  She quickly developed a group of friends in the congregation.  While my being the Pastor brought us to the place and provided the setting, that group became her very own friends, not acquaintances of the Pastor’s Wife. 

Before going any further, I have to say that Mary Ann had developed connections when we were in the early years in Kansas City.  She often claimed (falsely) that people were friends with her because I was the Pastor.  The truth is, I was the more boring one and she was always the more interesting personality of the two of us.  I am not particularly thrilled with that assessment, but it is just the way it was. 

In the parish here, the Parkinson’s created a need.  The need was for help.  When Margaret began and Carol took over the task of scheduling, the Volunteers began coming.  At first it was an adjustment, especially for Mary Ann, to have people coming into the house and staying with her.  First of all, her combination of strength of will and denial, caused her to resist any admission of the need for people to be there.  She seemed to manage to fall in a way that did not do damage to her, so she was not convinced of the need.  While watching the knives waving this way and that from the dyskinesias when she was preparing food, terror entered the heart of the watcher.  She was convinced that she would not slice herself. 

Since many of the first Volunteers were already friends, she tolerated the lack of privacy surprisingly well.  In fact it shocked me that she did not fight harder against the idea.  As the number of Volunteers expanded, new friendships were added.  Since often there was some need being met in another room when the next Volunteer arrived, the custom was to announce her arrival and just walk in. 

The result was that our house had an open door policy.  It was almost comical some Wednesdays when Bath Aide Zandra was here, Kristie had come to clean, it was crossover time when two Volunteers were here, one arriving and the other getting ready to leave, and the Spiritual Formation Group (four of us) were lingering for a moment of conversation before leaving after our meeting.  Rather than feeling as if folks were intruding into our lives, it was a pleasant gathering of friendly people. 

One gift that came was that Mary Ann opened herself to all sorts of relationships.  She had a wealth of friends and knew that they were her friends, not simply members of the congregation of which I was Pastor.  I cannot know what would have happened without the Parkinson’s, but it is clear that from its presence in our lives, the gift of openness to relationships grew.   

As always, we certainly would not have chosen the mechanism, but there were some consequences of its presence that brought blessing to our lives.

 

September 10, 2010

Let’s Make a Deal.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , |
1 Comment 

That, Thomas Merton suggests, is the model of love that has predominated in our culture.  I have needs, you have needs, let’s make a deal.  We put ourselves on the market until the deal is made.  Then, even once the deal is made, there is often still an eye out for a better deal. 

Mary Ann taught me what it means to love someone.  That is one of the gifts we received through the addition of Parkinson’s to our family circle.  Of course we would never have chosen the Parkinson’s as the textbook, but we were grateful for the learning.  The feelings that drew us together were intense and exciting and overwhelming, at least to me — I cannot speak for Mary Ann.  They are not what constitute love.  The feelings that first draw us to the one we love we are convinced are pure and selfless.  We would do anything for her/him.  Like it or not, those feelings are about us, me.  We love the feelings we have when we are first in love.  We are in love with love. 

The truth is, those feelings are the way God has wired us so that we will be drawn to one another.  They help create the setting in which love can grow.  Love is not a deal in which we get what we need or want.  Merton says: “But the plain truth is this: love is not a matter of getting what you want.  Quite the contrary.  The insistence on always having what you want, on always being satisfied on always being fulfilled, makes love impossible.  To love you have to climb out of the cradle, where everyting is “getting,” and grow up to the maturity of giving, without concern for getting anything special in return  Love is not a deal, it is a sacrifice. 

As feisty as Mary Ann was, as strong-willed, she understood how to give the kind of love that involves some self-sacrifice.  It took the challenges created by the Parkinson’s to teach me how to give love meaningfully.  It is very easy to fall into the illusion that a gesture at a birthday or anniversary or Valentine’s Day is what love is about, saying I love you every once in a while is enough.  We are expressing the feelings we have for the one we love.  Love certainly includes feelings, but the feelings are not the love.  They are part of what drives it.  They are a natural consequence of love lived.  It is the doing of love, the living of love, acts of love that nurture the feelings, not the other way around. 

In our toughest times, demanding her willingness to allow me into the most basic and personal dimensions of her daily living and my willingness to do whatever was needed, we grew the closest, the love grew the most.  We didn’t just talk about it, or make lovely and romantic gestures as if that was the substance of our love, we did it.  When I helped her off the bed into the wheelchair, there might be a lingering embrace as we moved in tandem.  We were by no means always sweet and tender with one another.  We were real people, ordinary people, flawed people, making the best of a bad situation.  I learned the most because I had the farthest to travel to learn it.  But I did learn how to love, really love.  Mary Ann and the Parkinson’s taught me.  I am so sorry she had to suffer through the onslaught of the Parkinson’s.  I am not sorry for the gift we received, a love far beyond anything we could have imagined 48 years ago when we first fell in love and over 44 years ago when we promised to love one another until death would part us. 

Merton again: “When people are truly in love, they experience far more than just a mutual need for each other’s company and consolation.  In their relation with each other they become different people:  they are more than their everyday selves, more alive, more understanding, more enduring, and seemingly more endowed.  They are made over into new beings.  They are transformed by the power of their love.”

It is that kind of love that God is.  God is the source, the Cross is the delivery system, our circumstances are simply the setting.

 

Next Page »