January 21, 2013

Why Try? Who Cares? (Don’t worry – Rhetorical Questions)

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I have had two moments of discovery in the last few days.  One came from something I read and the other insight emerged from looking back on experiences of a couple of years ago.

Why try?  I read something recently that touched a nerve.  I am not exactly sure why it did.  Guesses include the frustration of returning to last year’s unrealized first-of-year intentions as I look ahead to 2013 and then the seeming futility in trying to deal with society’s penchant for violence so horrifyingly displayed in recent weeks.  What I read used the Artist Vincent Van Gogh as an example of someone with the resilience to endure in the face of the demons that persecuted him all his life, determined in his last years to rise above them.   His life was filled with illness, physical and mental, episodes of depression.  He was in and out of an asylum, seeking help to deal with those demons.  At one point in frustration he cut off part of his ear to make a statement about friendship.

When looking at those later paintings, the Writer of the article titled “Choose Life” in the journal Weavings [Volume 28, Number 2] was struck not with darkness but light.  She was struck with his resilience as he painted scenes with colors that seemed to celebrate all that is good.  What kept him alive?  What allowed him to endure as long as he did, producing painting after painting, only one of which sold during his lifetime?

He painted Starry Night while at the Asylum.  He proclaimed, “For my part I know nothing with any certainty, but the sight of the stars makes me dream.”

Starry Night

In the article from Weavings, Sister Suzanne Mayer writes:

“In a probing exploration entitled ‘Van Gogh and God’ Cliff Edwards points to a sense of the divine that held the tormented Dutch painter close to the fire of life no matter what dismal circumstances surrounded him.  He offers van Gogh’s in-depth theology of an idiomorphic God, a God who like van Gogh is an artist.  The artist God, like van Gogh himself, fails in his creations, yet continues to produce.”

I am fascinated by the thought that God continues creating even though what has been created often fails to reflect God’s creative intentions.  It encourages me to not to give up trying in the face of recurring failures to realize my intentions.

A friend told me about the sermon he preached on Christmas Eve.  In that sermon he referred to this story:   

Robert Lewis Stevenson, best known for his adventure story Treasure Island, was in poor health during much of his childhood and youth. One night his nurse found him with his nose pressed against the frosty pane of his bedroom window. “Child, come away from there. You’ll catch your death of cold,” she fussed.

But young Robert wouldn’t budge. He sat, mesmerized, as he watched an old lamplighter slowly working his way through the black night, lighting each street lamp along his route. Pointing, Robert exclaimed, “See; look there; there’s a man poking holes in the darkness.”

In the face of my recurring failures to realize my good intentions, in the face of societal evils that seem hopelessly entrenched, I am, we are free to at least poke holes in the darkness.

Who cares?  The second discovery, the insight that popped into my mind last Friday morning was triggered to some extent by a friend’s grieving caused by a complex set of circumstances, circumstances not entirely unlike mine after retiring and then losing Mary Ann.  One of the ways I dealt with the pain of losing Mary Ann was to force myself to venture out to be with other people in social settings.  My reasoning was that I needed to learn how to be normal again.  I needed to be with people who neither knew nor cared that my world had just been completely destroyed.  Those settings forced me to pretend to be okay.   I needed to pretend because I wasn’t okay.  I needed to learn how to be okay again.  The setting and the people around me forced me to learn faster than would have happened if I had sat at home waiting to become okay first, before venturing out.

What dawned on me as I thought about this on Friday was that a part of my healing was nurtured by people who didn’t care.  That they didn’t care was a gift to me.  Don’t  misunderstand.  There were lots of people who were kind and caring.  But had everyone I encountered been understanding and caring, encouraging me to share my grief with them, comforting me, the healing would have come much more slowly.   The fact that there were people who cared, who gave me permission to grieve long and hard without judgment, provided the balance needed to be able to manage being with people who didn’t care.  Even those who cared the most couldn’t make the pain go away.   It was important for me to recognize that the pain could not be carried for me, endured for me by anyone else no matter how much they cared or how much they loved me.  The pain was mine and mine alone.  Others had their own pain to deal with, my children, their spouses and children, those who had come to love Mary Ann as Friend.

One of the benefits of spending over a year with a Hospice Support group was that we could talk about our pain, listen to others talk about theirs long after anyone else cared to listen.  The pain and the grief aren’t done by the time the people around us are done listening to us talk about it.  Yes, it helps to have a place where we can express the pain openly and without judgment, but it also helps to have places where the pain needs not to be expressed openly, places where we have to be okay whether we actually are or not.

When I traveled to New Zealand and Australia by myself for two months a little more than a half year after she died, I had to be okay.  I often mentioned to those I met that my wife had died a few months earlier.  There was usually a moment or two of thoughtful compassion from them.  After that, we got on with whatever was happening at the moment.  We each had a history that shaped us up to the point of our encounter.  The history we were making was at the center of our time together.  The grieving I did on that trip happened in private moments, but the public time was at least as healing.

The story about making holes in the darkness also fits the grief journey.  There is nothing that can make the darkness of grief go away in an instant, at least nothing that allows for long term survival and ultimately health and wholeness.   As I look back it seems that the journey was about trying to poke holes in the darkness so the light could peek though.  It wasn’t so much that I chose life as it was that I rediscovered it.

 

December 1, 2010

Tried, but couldn’t stop the tears.

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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: , , , , , |
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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 8, 2010

“Blessed Are Those Who Mourn….”

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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.

 

November 1, 2010

I’ve Lost the Map

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , |
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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?

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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.

 

October 17, 2010

I couldn’t fix her.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , |
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That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

 

September 22, 2010

First Look at Grave Marker

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
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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: , , , , , , , , |
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“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: , , , , , , , , |
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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.

 

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