Sources of Strength

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May 25, 2009

Caregiving Put in Historical Context

Posted by PeterT under Meaningful Caregiving, Sources of Strength | Tags: , , , , , , , , , , , , , |
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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?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Sources of Strength | Tags: , , , , , , , , , , , , , |
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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 21, 2009

Caregivers Go Public

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , |
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He was a pleasant fellow, who came to our home and snapped lots and lots of pictures judging from the rapidity of the clicking sound his camera made.  He is a photographer for the Capitol-Journal Newspaper (http://cjonline.com), one of two photographers left.  There were seven when he started.  He is a young man (at least from my sixty-six year old perspective).  It could not have been very many years ago when he began his career there.

While I certainly cannot be sure that it will actually happen, my understanding is that the article should be in this Saturday’s issue.  The article was written by Linda, who has known us and our situation for many years.  Linda works in the office of the church I served for more than a dozen years.  She just graduated from college after a long hiatus to raise a family.  In graduating from college, she has realized a goal that has been with her for much of her adult life.

The article intends to look at the Caregiving role with an eye toward how meaningful it can be for the one doing the caregiving.   The pictures showed us in our normal mode, sitting at the table, then moving to the spot by the television.  Mary Ann looked very nice. Zandra, our bath aid, did a nice job helping her get ready.  One or our Volunteers was here at the time.  Whenever Cynthia comes, the ironing board and iron come out.  What a Gem she is!  It was a busy day.  Kristie, whom we pay to give the place a good cleaning once a month, was here, spreading that wonderful clean smell throughout the house.  Clarene came to stay with Mary Ann for a couple of hours in the afternoon.  Young came over for a while (bringing some Coldstone Creamery mix of chocolate ice cream and pecans).  Young and I worked on planning a special worship service. During that time, Ann came over to visit Mary Ann.  The morning had begun with Paul and Shari to the house for our weekly two hour Spiritual Formation that meets on our back deck.  Attendance was down by two.  Eva came to stay with Mary Ann during the group meeting.

Most days it is just Mary Ann and me.  Today there was a veritable explosion of activity.  It was a great day.  It was a very public day.  What a contrast to the early years, just after Mary Ann was diagnosed with Parkinson’s Disease.

For the first five years after diagnosis, Mary Ann would not permit any mention of the disease to anyone outside of our children.  Neither her Mom nor my parents were told about it.  Her Dad died just two weeks after our wedding.  Mary Ann has always been an extremely private person.  She didn’t want people looking for signs of the disease.  She did not want people relating to her as a sick person, just as a person. She did not want pity, nor did she want others talking about it when she didn’t want to talk about it.  It was her business.

She did allow me to tell a couple of folks so that I would have someone to talk with about what I was going through as we tried to incorporate the disease into our reality.  I was very grateful for that gift.  I process things verbally.  I needed an outlet.  On the contrary, she needed not to talk with others about it.

After five years, the symptoms and side effects of medications made it obvious that something was wrong.  It was about seventeen years ago.  I remember vividly sitting at an outside table at a beer garden in Gruene, Texas.  Mary Ann was resting back at the condominium.  She had given me permission to tell our closest circle of friends (three other couples) with whom we were vacationing.  Of course they knew something was wrong, but they appreciated knowing what it was.

This has never been an easy road, but it was much easier for me when the news was finally out.  It had been so difficult to pretend nothing was wrong when it was such a huge presence in our lives.  Finally I could share it with my parents and siblings and friends and parishioners.  I have little doubt that it was easier also on our children to have it out in the open.

With the information no longer hidden, people could more openly offer their help.  Mary Ann’s co-workers could be more openly supportive of her.  I didn’t have to make excuses any longer when we could not attend activities.  At that point Mary Ann was working full time to help get the kids through college.  She was exhausted at the end of the day and needed weekends to recuperate.

When we moved here, the Parkinson’s was public knowledge.  As the disease progressed and the side effects of the meds increased, help became a necessity.  Without it, I could not have continued to earn a living.  The cost of full time care for Mary Ann while I continued to work would have come to close to my entire salary.  For me to stop working would have eliminated any income on which to live.  It was at that point that members of the congregation came to our rescue.  Margaret set it in motion.  Mary Ann has called them her angels.  If they were her angels, Carol was the archangel.  For at least six years, Carol single-handedly scheduled up to sixty-five different Volunteers, using a spiral bound pad of ruled sheets.  She scheduled evenings and weekends and weekdays, overnights.  There were people who did every imaginable task. The last two years before I retired, three people, our daughter, Lisa, Mary and Edie used the website http://www.lotsahelpinghands.com to manage the Volunteers.  Now that I am retired and doing full time care, Mary is still scheduling a few folks who continue to come so that Mary Ann and I can have periodic breaks from one another.

When the Volunteers come to the door, we might be in a situation that does not allow either of us to come to the door.  They all know, that if we do not come to the door, they should just come on in.

Understand just how dramatic the transformation has been in our household. We have changed from a completely private household with a very private person, both of us keeping a huge secret, to a very public place in which walk-ins are welcomed.

Mary Ann and I have grown in the process.  We have marveled at the generosity that has come our way now that the secret is out.  In spite of the constant stream of news to the contrary from the media, we have been surrounded by very good people, who will do almost anything to help when they see a need.

What used to be secret will, apparently, be in the newspaper this Saturday.  A few months ago, I was invited to do a live hour long interview on the radio by phone with Starr and Bob Calo-oy who do a weekly radio show in San Antonio, Texas.  The show is called Caregiving 101.  I am writing this blog, posting almost daily on the various experiences we are having as we deal with the presence of Parkinson’s in our household, taking a toll on Mary Ann as it progresses.

What was private is now public.  As the Baby-Boomers come along behind us (we are a few years ahead of the bulge), more and more will be impacted by chronic and progressive illnesses.  More and more people will need care and will become Caregivers.  For most of us, it just folds into our lives without invitation.

The public forum allows us to talk and listen and learn so that no one has to do this alone.  The time for secrets is over.  Good people want to help.  Go public.

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.

 

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