June 8, 2009

Caregivers Need to Vent Frustrations.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

June 2, 2009

Caregiver’s Soul is Fed

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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While the owners would not appreciate it, I hope no one purchases a lot and builds a home in the River Hill subdivision.  That undeveloped subdivision provided the setting for a wonderful meal of soul food tonight.

All of us need nourishment for the deepest part of ourselves, the place from which we draw strength for traveling through days that are sometimes filled with too much to do.  Often much of what fills our days does not nourish our souls but instead drains the life and strength and stamina from us.

While my days are not so full as they have been in the past, and Mary Ann’s and my time together is going pretty well, the need for feeding my soul remains.  Tonight it was fed.

Twila came to stay with Mary Ann.  They seemed to enjoy their time together.  There was progress made on a novel — a different one from Elaine’s Sunday morning book.  I headed out to that spot high on a hill, above and behind a new shopping area.  There is a new street that has been constructed, and I am sure the area has been platted with very expensive lots.  No one has bought a lot and built yet.

The spot has trees on both sides bordering the field of varied and colorful weeds that will probably one day be lawns and houses.  The view to the west is beyond description.  There are trees and fields and low rolling hills that extend all the way to the horizon many miles away.  A little area of the Kansas River is visible.  The railroad tracks run along side the tracks. Trains can often be seen and whistles heard as they move along those tracks.

Today, while Mary Ann was looking for a couple of books at the library, I noticed the shelves containing the Classical Music CD’s.  I picked a couple almost at random.  One is called “The Prayer Cycle” by Jonathan Elias.  Actually it both confused and intrigued me when I looked at it more carefully.  It is listed as a choral symphony in nine movements.  The confusing part was that those listed as performers included Alanis Morissette, James Taylor, the American Boychoir, John Williams, Linda Ronstadt, The English Chamber Orchestra and Chorus, and a number of people with names suggesting a variety of nationalities.

To describe the experience I need to borrow a Greek word.  Maybe having to take seven years of Greek is paying off.  The word I am borrowing is the word for compassion. The Greek word for compassion transliterated into English is splangknidzomai.  The first part of the word, splangkna, means viscera, innards, guts.  That is where the Ancient Greeks understood deep feelings to reside. Given the size of the antacid business, I suspect the Ancient Greeks were right. Tonight, the music on that CD combined with the sounds and sights of that remarkable setting to reach into the depths of my splangkna to stir and lift my spirit.

The sun was still a couple of hours from setting when I looked at it hanging in the west.  There were some thin and hazy clouds muting its brightness.  As it moved lower in the sky, it became less and less visible.  The cloudiness had no clear boundary, except that it sort of melted into a mist in the trees on the horizon.  There was just a powerful calming in the view from that hill.

The trees on one side in particular were quaking in the wind providing more power to the calming effect.  They were not the Quaking Aspen of Colorado, but another member of the family.  There were, of course, birds to be seen and heard.  One tiny bird sang a wonderfully complex melody so loudly that I could hear it over the music on the CD.

There was a hawk sailing around for a bit.  I am convinced that the hawk was as exhilarated by the currents under his wings lifting him as I was by the sights and sounds on that hill lifting my spirit.  There were some swallows that appeared to be dancing with one another in midair.  I realized that the dance was their way of catching food.  Without the dance, they would die.  I felt as if I was being surrounded by metaphors one after another filled with clues for living meaningfully.

One part of the scene was the intrusion of the relentless sound of tires on the pavement of a nearby Interstate.  That sound actually seemed to help balance the exhiliration of my lifted spirit with the practical realities of my daily experiences.

Then there was the music.  The music blended choral, instrumental and chant together in the same pieces.  The chant was odd.  It was certainly not Gregorian Chant.  One semester in the Seminary, I had a class in the Solemnes style of Gregorian Chant.  For three years I sang in a small chant ensemble that sang at weekly chapel services.  While this was not Gregorian, it was chant.  The chant and choral music was sung in a variety of languages, Hungarian, Mali, Swahili, Dwala, Tibetan, German, French, Urdu, Latin, English, Italian, Hebrew, and Spanish.  For some reason I had the odd feeling that this chant was a reverent, multilingual, classical style of Rap.

I was struck by the way rich chords and complex dissonances contrasted one another, each more beautiful because it was next to the other.  In the moments of silence between phrases in the music, the birds and the wind in the trees and the sounds of traffic folded more prominently into the experience.

With this feeble attempt at translating the sights and sounds of a moving, spirit lifting experience into words, I intend to say that a couple of hours well spent can feed the soul of a Caregiver whose days may be filled with activities that do not necessarily lift the spirit.  For me, it is the soul feeding experiences that help bring meaning to the daily tasks.  With a well-fed soul, the Caregiving itself can become soul food.

Eat heartily!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 27, 2009

Can Caregivers still Laugh?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , |
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I can’t remember the last time I laughed like that.  I just couldn’t control it.  My stomach hurt I was laughing so hard.  Yes, it was at Mary Ann’s expense, but I just couldn’t stop, and she finally started laughing too.

Yesterday, I started adjusting the sheet and bedspread on her bed while she was standing next to me.  Her question was almost matter-of-fact.  Did I find the squirrel foot?

She has had hallucinations often in recent months.  There have been rats and mice in her bed.  Some have bitten her.  She has seen the Thursday people, the man and woman and their two children.  In the past she has seen a cat, other people, a bird sitting on the window, strings and threads almost constantly.  She has tried to pick up things from the carpet, things that were not there.  She has seen bugs in her food and other bits and pieces of foreign matter.

“Did you find the squirrel foot?”  The question didn’t just tickle it, it set it off my funny bone like the fuse on a fire cracker.  I burst into laughter.  At first, Mary Ann did not at all think it was funny.  After a while, she started laughing at me laughing.  Then, even though the hallucination had been real for her, probably the night before, finally, she was laughing together with me at the thought of there being a squirrel foot in the bed.

It was good to laugh.  It was good for both of us.  It is interesting that a sort of relaxed warmth and affection seemed to surface after our bout of laughter.  I really don’t remember the last time we laughed like that.  Laughter doesn’t come so easily these days.

I don’t know if it is just me, or if it is common to other Caregivers.  My sense of humor seems not to be working so well any more.  I have often taken myself too seriously, but I have also enjoyed kidding around with folks.  Since I am, as they say, vertically challenged, I have endured a lot of smart-aleck comments.  My defense mechanism of choice has been to beat people to the punch and make a joke about my height before they had a chance to do it.

In earlier years, it was all great fun.  Now, I find myself moving too quickly to feeling put down or belittled when I am the object of what would have in the past seemed to be just good fun.

When someone is being light-hearted and silly, the weight of twenty-two years of battling Parkinson’s,  the daily struggles that come with that battle, sometimes steal from me the capacity to just let go and laugh.

Often when ministering to someone who had lost a loved one a couple of weeks earlier, I would observe out loud to them how hard it is to deal with people around them just going on with their normal lives, conversing with one another about trivial things as if nothing had happened, while their world was in a shambles.

Full time Caregivers who are completely immersed in the task sometimes find it hard to let go of the struggle and relax, have fun, be silly.  The Caregiving task seems to expand and fill every corner of their world, leaving little room for the trivial.

It is easy to turn into a Grump.  I have come to do grumpy pretty well.  Even so, we have our moments.  Sometimes muscles that seem to have atrophied, the silly muscles, are revived by something unexpected.   At the risk of being indelicate, we have waged war on constipation for decades.  When there is some especially normal and plentiful activity (if you catch my drift), I can’t help but celebrate with a hearty “Good Job!!!”   I laugh, even if Mary Ann doesn’t.  Who would have thought such a thing could bring such joy.  Dr. Oz would be proud!  (By the way, the first person who reveals to my lovely wife that I mentioned this in my blog, will wake up the next morning with a squirrel foot in his/her bed.)

Gratefully, twenty-two years of Parkinson’s and a couple of years of mild and periodic dementia have still not stolen Mary Ann’s wicked sense of humor.  She has a knack for surprising people with an often softly spoken zinger.

I am not really sure why, but recently, the load has seemed a little lighter, even though there has not really been any change in its contents.  It seems a little easier to relax and be sort of normal, at least our version of normal.

Maybe there is still hope for the return of a sense of humor that has seemed to wander off.  Who would have thought that the search for a squirrel foot in Mary Ann’s bed could have such power!

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 26, 2009

Caregivers: “I think I can! I think I can!”

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I noticed a report on television today announcing that Susan Boyle had made it into the semi-finals of the show “Britain’s Got Talent.”  What is it about that video of her surprising and wowing the British audience when she first appeared live on the  program that is so captivating?  Apparently there have been millions upon millions of viewings of it.

Susan Boyle’s dramatic capturing of the hearts of the audience and millions who have seen the video is so powerful because she seemed at first to be a silly nobody who thought she was a somebody.  She turned out to be a somebody of great talent.  The lessons to be learned from what happened there are many.

For me, her unexpected success has touched a nerve, just as it has apparently done for many others.  There is something about the idea of exceeding expectations and being recognized for doing so that resonates with some part of my inner longings.

Having grown up with the usual childhood lack of self-confidence, there has always been a search for affirmation and recognition.  In high school when Pam and I sang for the first time in a rehearsal the original duet written for the A Capella Choir’s musical “Zingaro” (the song was titled “Right Over There”), all the kids standing around stopped what they were doing, listened and when we were done applauded loudly.  As shallow as it sounds, I realized then just how much I thrive on affirmation.

My absolute favorite movie of all time is “The Man from Snowy River.”  It is the story of a young mountain man in Australia exceeding all expectations as he becomes a man — and, of course, wins the favor of the young lady for whom he has fallen.  When Jim returns to the shock of all, having single-handedly gathered all the stray cattle left behind by the seasoned drovers, I feel the same thrill every time I see it.  I suppose I have seen the movie twenty-five times over the years.  I am due again.  It has been many years since I watched it.

As I tracked back from those two indications of my psychological make-up, I remembered my favorite book as a child, “The Little Engine that Could.”  Wikipedia includes on their web site this early version of the story:  A little railroad engine was employed about a station yard for such work as it was built for, pulling a few cars on and off the switches. One morning it was waiting for the next call when a long train of freight-cars asked a large engine in the roundhouse to take it over the hill “I can’t; that is too much a pull for me,” said the great engine built for hard work. Then the train asked another engine, and another, only to hear excuses and be refused. In desperation, the train asked the little switch engine to draw it up the grade and down on the other side. “I think I can,” puffed the little locomotive, and put itself in front of the great heavy train. As it went on the little engine kept bravely puffing faster and faster, “I think I can, I think I can, I think I can.”

As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, “I–think–I–can, I–think–I–can.” It reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, “I thought I could, I thought I could.”

The thrill of exceeding expectations is wonderfully satisfying.

The Wikipedia site also includes this reference: Shel Silverstein wrote a poem called “The Little Blue Engine” that referenced this story, except in the end the engine almost reached the top of the hill but then very quickly slid back down and crashed on the rocks below, and the poem ended with the memorable line “If the track is tough and the hill is rough, THINKING you can just ain’t enough!”

Caregivers live in a world of the impossible.  We are frustratingly imperfect.  We try but we cannot fix our Loved Ones.  Every day we are reminded that we are inadequate to the task.  Even when we do feel as if we have accomplished something, there is no applause, no affirmation — just more to do.  We certainly cannot climb this hill and sail down the other side to success. For many of us there is no end in sight, just more hill.

With that said, there is more to learn from Susan Boyle, Jim, and the Little Engine that could.  I have not read or seen much of Susan Boyle’s history, but she  apparently has been singing since she was twelve years old.  She sings very well.  She sings often.  Her moment came because she sings well and has sung often.  If she couldn’t sing, or had never used the ability, the moment never would have come.  As the story goes, Jim grew up with horses and learned from his Dad and the famous Drover named Clancy.  He had the ability to do what finally brought him recognition and affirmation that he had become a man.  The Little Engine worked day by day, doing his job, growing in strength until he was able when the opportunity came to pull that long train up and over the hill.

Doing what we are called to do, doing it well, learning how to do it better is what finally allows the possibility of success, recognition, affirmation.  Seeking the moment of recognition is meaningless unless there is substance to that which is to be affirmed.  In fact, seeking the affirmation diverts attention and energy away from the very work that is worthy of such attention.

While I still love affirmation and attention, time and experience and Spiritual Formation has re-framed my inner longing.  Before I retired, when I delivered a sermon that was meaningful to me, one in which I said what I wanted to say, in as clear a way as I knew how, just preaching the sermon was fulfilling.  My longing now is to do what am doing in a way that is genuine, helpful to others, and fulfilling to me whether or not there is some sort of recognition.

Now that I am clearer on who I am and what hills I am climbing, just continuing to climb satisfies my longings.  Life has already delivered far more than I ordered.  Even in the face of obstacles beyond my ability to overcome them, I refuse to give up hope.  As foolish as it may seem I still think I can, I think I can, I think I can.  If and when I can’t, there is for me a well of Spiritual strength that sustains my hope.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 25, 2009

Caregiving Put in Historical Context

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How is it possible??  My oldest brother will celebrate his 80th birthday tomorrow.  When I was young, someone that old was an elderly person.  Dick is hardly elderly.  I suspect he could out work me any day in cutting and hauling firewood — and I am a mere child of 66.  He has confessed that he might lose track of where he put the chain saw, but age has little to do with that.

As the years have gone by, my perspective on aging has changed dramatically.  Dad died at 84, pretty much with his boots on.  He had worked hard during the day and died in the evening.  Mom lived to be 97 and was pretty sharp until the end.

This summer all my siblings will celebrate some significant event in their lives.  Brother Dick turns 80, Sister Gayle turns 75, Brother Dave and his wife Velda celebrate 50 years of marriage, Sister Tish and her husband Bill also celebrate 50 years of marriage.  I feel so young!!!

This exercise in looking back, in putting Mary Ann’s and my journey in a larger context began this afternoon when I put on a DVD titled “Celebrating North America’s Steam Railways.”  The series was done for Public Television.  It was a premium for making a donation.  It was long but very engaging.

As I watched it, I remembered my first years in college in 1961-3, when my folks would drop me off at the train station in Aurora for the trip to Union Station in Chicago.  There I got on the train to Milwaukee.  The transition from steam to diesel had come not so long before that time.

I remembered Brother Dick heading back and forth in the 1940’s on the train to school in Ft. Wayne, Indiana.

If I am remembering this correctly, my Dad said that he had not ridden the train.  He was born in 1901.  Horses were the means of transportation in his little country town.  He did fly in jet airplanes and enjoy some cruises later in life, but skipped the trains.

His Dad was born in 1860, not long after the steam trains began to be commonly used.  His Dad’s Great-Great Grandfather, Abner, fought in the Revolutionary War, before trains.  Abner was a Revolutionary War hero whose sword has been passed from oldest son to oldest son until it resides now with Brother Dick and his Son, Tom.

The historical context puts into perspective the challenges Mary Ann and I live with at this point in our history.  Abner lived through many battles and ended up losing a foot after his feet froze on his homeward journey to the six hundred acre plot where the town of Trumansburg (formerly Tremaine’s Village) now sits.  The name was misspelled in a post office record.

My Grandfather owned and lost what came to be known as the Gold Coast in Chicago.  The Depression took its toll.  He ended up a virtual hermit, separated from my Grandmother, who, rumor has it, lost either a sister or an aunt in a scandalous series of events resulting from an early version of priestly misbehavior.

My Mother and Father lost their first two children.  Glen Raymond died nine days after a premature birth.  There was no mention of Glen in our family until after Dad died, and Mom was in her 80’s.  When that death was finally revealed, she said that they just never talked about it after it happened.  Their second child was Lon Raymond.  He died of peritonitis caused by a ruptured appendix.  He was five years old.  He died on Christmas Eve. I cannot even begin to imagine the intensity of the pain they suffered.

Dad and Mom went through the Depression.  Dad lost his job, but they had managed to hold on to a a house that had been converted into apartments.  Whoever could pay a few dollars rent kept them going.  People would share commodities with one another.

One of my sisters cared for a husband with brittle diabetes for decades.  Another of my sisters cares for her husband who is diabetic, suffering from Dementia, incontinent and very heavy.  She just got out the hospital and rehabilitation after major back surgery.

Somehow, when placed in historical perspective, our circumstances seem unworthy of terrible lamentation.  Many who have gone before us have endured struggles far beyond anything we have yet experienced.  It is just our turn to live the life that has come our way.

Of course we feel sorry for ourselves at what has come into our lives and shaped them into something we could never have anticipated.  Parkinson”s is a devastating illness.  Against the backdrop of what those who have gone before us have suffered, we can hardly feel sorry for ourselves for long.

As have those who have gone before us, we are simply living our lives as they unfold.  We don’t decide what comes our way, but we live through what comes day by day, experiencing life fully wherever it takes us.  Somehow looking back and looking around, puts our situation into perspective.

It may not be the life we would have chosen, but it’s our life.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 24, 2009

Who Am I, Chapter Three: Am I Who I Want to Be?

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Charlie was the sort of person most of us want to be.  He seemed to be a gentle soul, able to enjoy life and the people with whom he shared it.  He was only sixty-one.  The diagnosis was a shock.  By the time is was discovered, the Cancer had progressed to an extent that was just too far along to be stopped.  The end came so fast there was hardly time to come to terms with the diagnosis, let alone prepare for today, Charlie’s funeral.

The words spoken at the service were healing, powerful, just what was needed in the face of such a tragedy.  The death was real, no pretense about that, but its power to destroy was stolen from it by words of hope in the Someone who took some water and some dirt (see chapters One and Two of this series), made Charlie, and has not allowed him to cease even though the dirt and water will return to their source.

As I said in chapters One and Two. I know who and what I am at the core of my being.  Whether framed in spiritual or non-spiritual language, I am dirt and water sparked into a living breathing, self-aware someone, for reasons ultimately unknown.  I am left to celebrate who I am.

The problem is, there does not always seem to be reason to celebrate.  Charlie reminded me of that.  Charlie lived a full life, good relationships, wonderful adventures.  He had a good time and those around him did too.  He lived with integrity, humbly, and seemed genuinely kind and gentle.  Those closest to him may have experienced him differently.  He was not perfect.  No one is.  Those who think they are perfect have the gaping flaw of hypocrisy and denial woven into there thinking.  Today reminded me that I am not altogether who I want to be.  I had better get busy.  I am already five years older than Charlie.

Yes, I know who I am at the most basic level, but juat as is so with the seeds and plants my Dad and I planted and cultivated and the produce we picked, this particular gathering of dirt and water, known as Pete, is in process.  I am growing and changing.  I am not done yet.

I am living in the gap between who I have been and who I am becoming.  You are living in that same gap.  While brain cells last our lifetime and white blood cells may live only days, the average lifespan of cells in our body is about seven years.  That means not only am I dirt and water sparked into a living being, the dirt and the water are constantly being recycled.  I am not even the same dirt and water I was a year ago or seven years ago.  The spark of life is not just a switch that turns at the beginning of life, it is a process going on moment by moment every day of our lives.

As a full time Caregiver, I am left with the painful truth that I am not always the person I want to be.  I am living in the gap between who I have been and who I am becoming.  I am often frustrated by my own selfishness and impatience and weakness and thoughtlessness, by habits that I wish I could change and the almost daily relapses as I seek to improve.

There are some options available to me when I realize that who I am at a particular moment is not who I want to be.  I can with a chip on my shoulder declare to myself and everyone around me that it is just the way I am and that is that — take it or leave it.  I can melt into a pool of self-loathing that I am not a better person.  I can justify myself and deny that there is actually anything wrong with me.  I can resolve never again to be that person I don’t want to be.  I can claim to be the person I want to be, even though I may be far from it.

In the Journal called Weavings, (March/April 2009 issue) a writer named Parker Palmer calls the place between who we want to be and who we are, the tragic gap.  He frames it in this way: “On the long list of hopes that have driven our ancient and unfinished project called ‘becoming civilized,’ overcoming the tyranny of the primitive brain is surely at or near the top.  No one who aspires to become fully human can let the primitive brain have its way….”

Our task is to learn how to live in the tragic gap between the reactive primitive brain’s rule (fight or flight) and the rule of reason and thoughtfulness and morality, things that are located in the front part of the brain, that which makes us human, at least in physiological terms.

Our task is to live meaningfully in the space between that which we don’t like about ourselves and the person we want to become.  Rather than allowing our worst self to rule, we are called by our humanity, to grow into something more.  It begins with the painful recognition of the truth about ourselves.  Then, instead of callous acceptance or self-loathing, comes hope, expectation, new possibilities.

I am living meaningfully in what Palmer call the tragic gap. I am not the person I want to become.  I am not the Caregiver I long to be.  I am not done yet.  I am still growing and changing and becoming.  There is an odd mechanism for change pointed out by Parker Palmer.  Here is what he says: “There is no way to be human without having one’s heart broken.”  More on that in a future post.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 12, 2009

Caregiver’s Identity: Who Am I? Chapter Two.

Posted by PeterT under Meaningful Caregiving, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , |
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Who am I?  I am dirt and water.  That is no metaphor.  It is a simple fact.  The human body is made of approximately 70percent water and 30percent dirt (carbon and minerals).  That answer may sound silly and irrelevant, but it is exactly what gives me my identity.  It is what allows me to remain a unique self-aware individual who knows who he is separate from the various roles he has had during his lifetime.  It is what allows me not to disappear into any of the roles and identities that are defined by others in my life.

Being clear about who I am at the most basic level, has allowed me to be a better child, parent, husband, Caregiver and whatever else has defined me over the years — and, for that matter, whatever else is to come.

By knowing who I am at the most basic level I can incorporate all that I have learned from the various roles I have had, the various ways I have been identified throughout my lifetime up to now.

By knowing who I am at the most basic level, I can have successes without wrapping my worth in them and I can have failures without losing my sense of value because of them.

Now, what’s with the water and dirt?

When I was growing up, we had a Sunday afternoon tradition.  We went for a ride in the country.  The purpose of that ride was for one thing to enjoy the scenery, see the sights and, in farm country, smell the smells.  I learned to distinguish the smell of pig farms from the smell of the farm on which cattle were raised.  Dad showed me the difference between timothy grass, alfalfa, wheat and oats.

After I was old enough to understand what was going on, I discovered that there was an underlying purpose to our drives in the country.  Dad was looking for property.  He had grown up on a farm, but worked his entire adult life in an office. He wanted to get back to his roots in the country.

I remember when he first described the place they had found.  Before I had seen it, Dad found the place he wanted.  It sounded like a dream.  Twenty-six acres, mostly woods and hills, with a creek separating the larger section from a smaller area of about six acres of flat and fertile land suitable for crops.

When Dad and Mom bought what we called the Farm, my life changed dramatically.  Almost every night of the week during the growing season when school was out Dad and I headed out to the Farm to work in the garden.  All day long on Saturday and Sunday afternoons after church we planted, cultivated, weeded, gathered and destroyed potato bugs and tomato worms, fought against cabbage worms, we picked strawberries, rhubarb, corn, tomatoes, and dug potatoes.

From where did the all that produce come?  It came from the combination of dirt and water.  How did it happen?  How did the dirt and water become transformed into tomatoes and potatoes, green beans and corn?  Yes, the sun was added to the mix, but the sun can shine on dirt and water all day long and produce nothing but warm dirt and warm water.  There was added to the dirt and water a spark of life.

That spark of life was contained somewhere in the germ of the seeds that were planted.  They were also made of dirt and water that had been formed into a seed containing a germ containing a detailed plan wound into a genetic code.  Something triggered the code that sparked the plan into motion.  Molecules of dirt and water were drawn together to build a factory powered by the sun, using a manufacturing process called photosynthesis.

The reason that the dirt and water became the plants that produced fruit made of the same stuff is that the spark of life was added somehow to the mix.  How and why did that happen?

Who am I?  I am 115 pounds of water and 50 pounds of dirt combined with the spark of life.  The result, a sensient being.  I am a somebody separate from every other somebody in the universe.  I am self-aware.  I can ponder from where I came and why.  I can wonder about who I am and seek to discover the root of my being.

That may all sound very remote and esoteric, words having no relationship with ordinary life.  I beg to differ.  What I do hour by hour, day by day, no matter what it is and with whom, happens because this puddle of water and pile of dirt has been sparked to be someone.  It is who I am.  I find it very reassuring to know the truth about who and what I am.  No one can take that away from me.  I may change what I do or how others perceive me, but I am who I am.

Now comes the inevitable question: Why?  For me, the reason I am a self-aware somebody rather than a pile of dirt and a puddle of water is that there is a Someone who has chosen to spark the life that grew me out of those basic compounds.  There is a Someone who wants me to exist.  That Someone has revealed the truth about human existence in an account of the history of God’s activity in lives of ordinary folks during a very specific few centuries of human existence.  The account of that history reveals a truth that cannot be inferred from the physical world we live in or any study of it, no matter how detailed and accurate that study is.  That truth is the unconditional love of the Someone who has sparked in us life, made us human, living beings, self-aware and wired to live in community with one another.  The pinnacle of that revelation came in a person called Jesus, designated the Christ, a real Somebody, who lived in the same stream of history of which we are a part.

Now, what about those of you who do not share my particular understanding of reality as I have described it?  Let’s go back to the dirt and water.  Whatever understanding of reality you have, whether with or without a spiritual dimension, the facts are the same.  Our self-aware humanity has emerged from a spark of life setting off a genetic code forming the molecules into our body and mind, thinking and feeling.  You are a unique somebody, different from every other somebody in the universe.  You have an identity separate from what you have done or do now.  You can draw strength from that.

The question remains, “Why am I who I am?”  If I believe God made me, why did he make me?  The answer to that lies in the mind of God. I cannot know why.  I can think about it, posit answers of one sort or another. I cannot know why God made me.  I am left only to praise and thank God and celebrate the life I have been given.

For those who do not accept the existence of a spiritual dimension to reality, the same is so.  We can postulate our reason for being.  We can recognize that we are simply a part of a process of mysterious origin.  We cannot know for certain why the particular substance of our bodies has been formed and sparked with life.  We are left to celebrate who and what we are.  We can seek to become more fully human.  We can seek to live in community, just as we are constructed to do by that genetic code.

In either case, our identity lies deep within us, beneath the things we have done, are doing and will do.  Knowing that allows us to be effective Caregivers, imperfect, but committed to our Loved Ones.  We retain our identity without despairing that our lives have disappeared into someone else’s needs.  You and I are dirt and water sparked to life.  We are a unique somebody of worth and value, and no one can take that away.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 11, 2009

Caregiver’s Identity: Who am I?

Posted by PeterT under Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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Less than a year ago, I was Pastor Pete. Who am I now?

I liked being Pastor Pete.  In our tradition, as with most religious traditions, when a person is ordained into the ministry, it is for life.  I am still Pastor Pete.  There are a wealth of experiences folded into that identity.  I have been there when people have died, I have been there soon after people were born.  I have accompanied people through marriage problems, family crises.  I have ministered to people through a disaster, the Oklahoma City bombing.  I have done funerals for premature little ones the size of my hand.  I have done funerals for teenagers, young adults in their prime leaving children behind.  I have preached and done liturgies before hundreds.  I have gone through good times and painful times with congregations.  There is not enough space here to describe the variety of challenging and meaningful experiences that have shaped my identity as Pastor Pete.

That identity has not been my only identity, however.  Any who reads this post could list all sorts of identities they have had in their lifetime.  I have been a little boy, a son, a little brother, a kid whose identity was shaped by going to school, playing down at the swamp, jumping into piles of raked leaves, catching bugs, heading to the vacant lot for a game of Bounce or Fly, getting penicillin shots and taking those awful red penicillin pills, supposedly avoiding exertion on account of the Rheumatic Fever. That identity has come and gone.  I grew up and got well.

Then there was the identity as a singer.  That began when Mom claimed she heard me singing the melody of “We Three Kings” while I was lying in the crib at eight months of age after my brother had been practicing for singing at the Christmas Program that year.  I took voice lessons, sang in choirs, served as president and student conductor of five choirs from Junior High through graduating from college. I sang in a semi-professional choir earlier in my working years. That identity has come and gone.  I haven’t sung much for years.

I am a father.  We have two children.  There is an odd shift in identity that comes with children.  After children, I may have been Pastor Pete to some, Pete to others, but I became Dad to two, and Lisa and Micah’s Dad to many others.  It happens to most of us.  With children, our identity moves away from who we happen to be as an individual to who we are in relationship to someone else.  From the time the little ones head off for preschool and/or daycare, we become our children’s Dad or Mom.  Whenever we get full of ourselves in any other arena of life, coming home to children, going to school activities, getting them ready for bed or ready for school, feeding them, picking up after them, listening to their arguments with one another, dealing with behavior issues, serving in our role as parent will quickly burst our bubble and bring us back to reality. The role of parent has changed as our children have grown up, but I am still Dad and Mary Ann is still Mom.

There has been a new identity added to our reality in the last decade.  I am Grandpa.  Mary Ann is Grandma.  It is who we are now.  By the way, it is really cool!  That identity will stick with us from now on.

We all have multiple identities during our lifetime. While those identities all help shape us into the somebody we have become, some of them come and go.  Some of them stick.  The kid I was has come and gone but in some sense still lives in me.  My parents are both gone, but having been son to a Mom and a Dad still impacts how I think and feel.  I am still a little brother to four other people even though I am now sixty-six years old.  By the way, when those four are getting out of hand, I just observe that Mom and Dad kept trying until they got it right.  (You can imagine how far that gets me with them.)

Singing is still a part of who I am, even though I seldom do it.  It lives in my insides.  Music stimulates my soul and touches my heart.  I am a parent and take great comfort in the relationships with our two children.  I cherish my identity as Grandpa.

The identity as Pastor has molded and shaped my sense of self profoundly in the forty years of doing ministry.  While I am still by ordination a Pastor, I am not pastor to a congregation of people.  While being a pastor is part of who I am, my identity, it is no longer in a public setting.

There is an identity that became primary for me when Mary Ann and I married.  I am a husband, the husband of Mary Ann.  That identity has defined me for over forty-three years now.  Mary Ann and I have retained our individuality.  We have not disappeared into each other, but our lives are completely intertwined.

There is now a new identity born of necessity and grown into the center of who I am.  I am a Caregiver.  That identity cannot and should not be differentiated from my identity as husband. The Caregiving happens to be what being husband to Mary Ann includes at this time in our lives together.  When we commit to one another in marriage, it is not conditioned on health or wealth.  We marry a person, whatever that brings.  We don’t marry some ideal of what a husband or wife should be.  We marry a real person, who will grow and change with time and experience, as will we.  What comes, comes. I am now a husband and a Caregiver.

Who am I?  Am I what I do?  Am I a kid, a brother, a husband, a father, a Pastor, a Grandfather, a Caregiver, or am I something in addition to those things, something more than those things?  For me this is an exceedingly important matter. What sustains me is that I have an identity beyond what I do.

Let me say it plainly.  Mary Ann and I have no idea how long we will live.  No one does.  What if she dies before I do?  If my identity is solely husband and Caregiver, who will I be then?  Mary Ann has a very strong sense of herself.  She has a strong presence.  If I die before her, she will be Mary Ann.  She has never defined herself solely as a spouse.

My identity is rooted somewhere far beneath my various roles.  I am convinced that all of us need an identity that is not wrapped solely in one of the various roles we have had throughout our lifetime.  I am no longer a kid.  I don’t sing any more.  Our children are grown and on their own,  Our grandchildren do not live with us.  My brothers and sisters live six hundred miles from here.  I am no longer pastor of a congregation. If who I am is solely what I do, I am in a world of hurt.

For now, let me say this: The first answer to the question of who I am is, I am water and dirt.  I, like you, am made up of about 70 percent water and 30 percent dirt (carbon, minerals, etc.).  The final answer (as they say in The Millionaire) to the question who am I, lies in the answer to the question, Why am I a living, breathing, self-aware human somebody, rather than a fifty pound pile of dirt and a hundred and fifteen pound puddle of water?  My answer to that question will come in another post.  Stay tuned.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

May 7, 2009

Caregiver’s Sources of Strength

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , |
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Today is the first day this spring we have been able to meet on the deck.  There is a dramatic change in the feel of the experience when on the deck rather than in the downstairs family room.  At 7:30am the birds are fully engaged in noisy and boisterous activity.  In that setting we have been buzzed by hummingbirds heading for the feeder.  A Cooper’s Hawk has come crashing through concentrating on its prey, oblivious to coming within inches a ducking head.  Rabbits have come by the deck with little fear of being so close to people.  Hungry birds have ventured to a feeder no more than a couple of feet from the head of one of us.   

The smells and the sounds, the sun and clouds and trees and gently blowing breezes calm the spirits of our little group as we begin with a few moments of silent meditation.  Our silence has as part of its nature the sounds of nature, as well as car sounds, mowers, dogs, airplanes, whatever else that happens to be going on during those moments.  The sounds of nature seem to dominate. 

We refer to our group as a Spiritual Formation Group.  The Group began many years ago.  I am not sure how many at this point — maybe seven or eight years.   The size has ranged from four to six members.  There are just a couple of us who have been there from the very beginning.  There are five of us at the moment.  It meets at our home since I need to be on call for Mary Ann’s needs.  The group emerged at a time in the life of the Congregation when there was a special emphasis on starting small groups. 

Our goal is to incorporate what we believe into what we do moment by moment each day — the ordinary.  We seek to support one another in disciplines that increase the likelihood of our finding the strength to live meaningfully no matter what comes or how fast it comes. 

It is no small order.  This morning in the course of our conversation, I had a chance to do some more processing of yesterday’s emergency trip to the Dermatologist to re-sew stitches that had been torn out of Mary Ann’s shoulder by a fall, stitches intended to close the gaping hole left by the removal of a skin Cancer.  I should add quickly that after a restless night, a painful morning this morning, she slept four or five hours.   She is doing well at the moment, down for the night (hopefully). 

Our group has a covenant that includes confidentiality.  Any specifics will reflect only my thoughts and comments.  The rest will come in general terms. 

Caregivers need a support system!  We cannot do this by ourselves.  Some of the support comes in the form of help with tasks, companion care for Mary Ann, food, all sorts of tangibles.  The support that is to be found in a Spiritual Formation Group is the nurturing of the spirit, the center of being from which deep personal strength comes.  From that deep well of strength is drawn the power to endure, even thrive, in the face of adversity. 

My approach to talking about Spiritual Formation is intended to reflect two elements of my intentions for this Blog.  One intention is to reflect my own spirituality, since that is how I manage as a full time Caregiver.  I am a retired Lutheran Pastor.  I have a deep faith rooted in a very specific understanding of Who God is and what God has done.  My relationship with God is created and sustained by a fellow name Jesus Christ.  I make no apology for that faith. 

At the same time, this Blog is not a parochial piece intended exclusively for folks who happen to share my faith.   The most basic element of my faith is the unconditional love reflected in the Christian Story (a true story).  That love has no bounds.  I am very comfortable framing the truth in humanistic terms, scientific terms, philosophical terms.  I feel no need to defend my faith or force feed it to others — witness to it, yes.  It is a part of who I am and how I cope. 

I will seek to do so and enjoy framing the deep well of strength in a way that is accessible to people who have another spirituality or no spirituality at all in their view of reality. 

In our group, we always use a book of some sort intended for use in a spiritual formation small group setting.  We are currently using book in a series of Spiritual Formation Guides produced by Renovare (http://www.renovare.org).   The chapter we were doing today is titled “Being the Good News.”  Our conversation revolved around the question, “…how do you seek to act as the good news in the world?” 

This morning my need as a Caregiver was to process with others what had happened yesterday, the fall, the broken stitches, the dripping blood thinned by Plavix, the emergency trip to the doctor to be resewn.  I needed to process it so that I could face the harsh reality that had I been beside her I might have prevented it, that I had not been calm and cool and collected, sweet and nurturing throughout the experience.  I needed to affirm what I had done that was appropriate to keep Mary Ann safe, to get her the help she needed, to care for her during and after the trauma.

The conversation in that small group, the processing, helped me to reframe the experience in a way that allows me to accept my failings, celebrate the good, and see the possibility for change. 

For those who don’t have a spiritual dimension as part of their worldview, having a small group option for processing experiences is equally important.  The goal is to reframe what has happened in a way that gives it meaning.  Seeking to become more fully human is not only a help to your Loved One but a help in your own survival.  Each event is an opportunity for growth.  That growth can lead you to a better quality of life as you become more able to get past the reactive primitive brain impulses to thoughts and actions that are both sensible, humane and life affirming. 

Caregivers need a healthy, well-balanced support system.  A small group, in my situation, a Spiritual Formation Group, can help provide the deep source of strength needed to endure whatever life throws our way. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

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