Sources of Strength

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June 24, 2009

Caregiver’s Plans for Deck Therapy!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , |
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As they swung the pickaxe and wielded shovels trying to dig through the huge roots of a Bald Cypress Tree and the rock hard Kansas clay just below the roots, the heat index reached 111 degrees yesterday.  Three young men sweated and strained, pulling up water soaked sod to get to the roots and the clay. 

In this heat and at my age, it seems much better to watch others work than to join in the digging.  Today the work continued with more digging, with the addition of the job of bringing huge rocks from the truck in the street in front of the house to the back where they now lay until they find their way to their permanent place in what will be a waterfall, a pondless waterfall.  

They had a little walk-behind Bobcat to move the rocks, but the rocks had to be loaded into the bucket and carried from it.  The well is dug, the liner laid out.  Tomorrow the pump will be installed, the filter filled, the rocks arranged, and later, maybe the next day, the native plants put in place. 

There will then be a waterfall flowing into a manmade wetland to provide an aesthetically pleasing solution (hopefully) to an ugly problem with standing water fed by regularly cycling sump pumps of three houses, ours being the middle one.   

We have committed substantial personal resources to this project.  I cannot be sure that the days and weeks and months will confirm it, but my expectation is that the setting on our deck become more of a sanctuary than it already is. 

This little place where we live is our world most of the time.  We are not completely homebound, but we spend the vast majority of our days here.  To put it bluntly, my goal is to keep from going crazy.  I will do Mary Ann no good if I lose my bearings.  The spiritual grounding that provides me with stability is the primary source of equilibrium.  That grounding needs to be sustained.  We have been through enough to confirm that I am not invincible.  It would be stupid of me to think so.  No human is. 

I recognize the need to have times of respite to help keep balanced and maintain the ability to care for Mary Ann’s needs in a way that nurtures her as a whole, complex, vibrant somebody who happens to have Parkinson’s.  I need the respite to be husband rather than a grumpy and reluctant care provider.  

Mary Ann and I are more grateful than we can ever say for the Volunteers and Mary who schedules them.  We recognize Mary to be a very special gift from God to our household.  The Volunteers give both of us time away from each other.  That time away makes our time together better. 

Tonight, Mary Ann enjoyed the company of good friend Barb.  While Barb was with Mary Ann, I ran some errands and spent time in my favorite close by place of respite.  There I encountered the doe that has been there the last few times.  The two wild turkeys returned to feed for a bit.  The view was as good as ever.  The humidity in the air created layers of mist with varying density, giving depth to the plains that extended for miles in front of me.  I encountered a nice young man there, watering some new plantings.  He is the realtor, excited about the open house coming this weekend, an open  house with the purpose of seeking folks to buy the twenty-eight lots that will be filled with homes, thereby eliminating that place of respite. 

For me to be a good care partner to Mary Ann, there need to be accessible places of retreat and respite, places I can be while we are at home together and there is no Volunteer available.  My office with the computer and the worship center is a place of respite.  The A-V monitor allows me to be here while Mary Ann is in bed or in her transfer chair in the living room. 

The deck can be such a respite with a little planning.  It is possible to plug  the monitor into an outlet on the deck.  My hope is that the addition of the waterfall will increase the power of that setting in providing renewal and refreshment.  Without the need to have a Volunteer scheduled so that I can drive to some other place for respite, our little corner of the world can provide more of what is needed to keep our system healthy and functional. 

Meaningful Caregiving will not happen by accident.  Sometimes it takes pickaxes and shovels wielded in 111 degree heat index weather to help create what is needed to nurture the spirit and sustain mental stability so that meaning can be found day after day in the tasks of caring for someone loved deeply. 

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 23, 2009

Pundit says Marriage is Obsolete. Caregiver Disagrees.

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , |
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Author Sandra Tsing Loh has now declared marriage to be obsolete.  She and her husband of twenty years both had affairs and are divorcing.  She has concluded that marriage is simply obsolete these days.  It was useful in the agrarian culture up until early in the 1900’s, since many hands were needed on the farm.  Marriage is no longer useful.  Studies of primitive humans reveal that the spark in a relationship is programmed to last about four years, long enough to have two babies up and out.

I am tempted to get on a soap box and with great self-righteousness rant against such silliness.  That would be far too easy.  I have counseled couples through some very tough times over the years.  Some worked through their problems and found a new relationship that had more resilience and strength an intimacy than before they struggled through whatever it was.  Some concluded that they needed to divorce and begin new lives.  There were money problems, affairs, trust issues, problems with alcohol misuse, abusive behavior.

I respect those who worked out their relationship, and I respect those who chose to divorce and begin new lives.  Does that sound unpastor-like?  Divorce is among the most painful experiences anyone can have judging from what people shared with me over the years.  It is frightening how many killings are done by estranged spouses.  When I moved to Oklahoma City five months ahead of Mary Ann and our children, who were finishing the school year, I was standing just inside the door of a Skaggs Drug Store returning a faulty alarm clock I had gotten the day before.   As I was standing at the counter, someone ran in and hid behind the counter where I was standing.  When the doors opened, I smelled the gun powder.  Fifty feet away from me, outside the door of the store, an estranged husband shot his ex-wife in the face.  After a time, I went out the door to leave and walked by the paramedics with her.  She died there in that spot.  The ex-husband was found at Lake Overholser about a mile and a half away.  He had taken his own life.

Having seen the level of pain that comes with it, I no longer judge those who have chosen the path of divorce.  Those who have experienced divorce are unlikely to recommend it as something to be sought after.

With that said, most of those who divorce do not then conclude that marriage is obsolete.  Apparently, almost 90% of those who divorce choose to remarry.  It appears that we are wired to marry.  I realize that sounds ridiculously obvious, but apparently it is not obvious to some.

Assuming that in our primitive brain the spark that brings a man and a woman together has a four year shelf life, the conclusion implicit in the author’s contention that marriage is obsolete is that there is no point it staying together once the spark has expired.  In fairness, I think she would say that it is no longer sensible to try to recreate the spark after many years of marriage.

I guess the author’s conclusion might be reasonable if the spark were all there is to marriage.  To use her metaphor, a spark is what gets the fire going.  It would be pretty hard to weather a cold winter if the heating system in the house never had more than a spark.

If we chose to live only by what lay in our primitive brain, the fight or flight impulse would preclude the possibility of living in peace with other human beings, at least other than those in our tribe.  What makes us human is the capacity to use our frontal lobes to reason out a better way to live.

If we chose never to move from the spark to that which the spark ignites, of course marriage would become obsolete. What the spark ignites is relationship.  The spark ignites feelings that grow into actions that produce newly discovered feelings that spark levels of trust and intimacy that could never be experienced if the spark were to remain the only measure of the value of marriage.

The spark needs to be in contact with some sort of combustible material or it will produce absolutely nothing but a tiny burst of light and heat lasting only a fraction of a second.  The combustible material is made up of promises and commitments that are lived out day by day in big ways and little ways.  The combustible material is not romantic gestures (although there is a lot to be said for them).  The combustible material is made up of time spent listening to one another, arguing with one another, forgiving one another, standing up to one another and giving in to one another.

Long marriages provide the possibility of a kind of relationship with a beauty and depth, that is far beyond the spark that brings couples together in the first place.  People who have not chosen to marry or are divorced or widowed, can also find deep and lasting relationships that grow out of the combustible material in their relationships with those who are closest to them.  Marriage, however, is certainly not obsolete as a meaningful and fulfilling way to live for as many years as life allows.

For Mary Ann and me, marriage is hardly obsolete.  It is what allows us survive in difficult circumstances.  We get to experience relationship that is deep enough to weather irritations and frustrations and misunderstandings without any of it stealing the fire from us.

When in the Seminary training to be come a pastor, I was in a choir that sang Bach’s St. John Passion three times over four years.  The third time we sang it was one of the most powerful experiences I have ever had in my life.  I will never forget singing the chorale at the conclusion of the Passion.  The power of that chorale lay in what had gone before.  Each aria and recitative and chorus sung over almost an hour built one on the last until all that had gone before filled the last chorale with overwhelming joy, more deeply moving than there are words to describe.  Without what had gone before, the chorale would have been a beautiful hymn.  With what led up to it, the experience touches me to this day, forty years later.

No, Ms. Sandra Tsing Loh, marriage is not obsolete.  For me, our marriage, now, after forty-three years is the chorale at the end of the something that has been building in strength and power for all these years.  The spark has ignited something enduring and of great beauty.

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 16, 2009

They are all Okay. I am just Pretending.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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Someone recently wrote a vivid description of how she anticipated a social gathering going.  She lost her husband about a year and a half ago.  The pain is still almost overwhelming.  She is anticipating going to the social gathering and pretending to be fine.  She would act the part, bantering with the others there, appreciating what each other is wearing.  All the while she would be feeling the pain of that loss, trying not to reveal it. 

Why pretend?  Well, who would be interested in hearing her whine about it?  She should be over it, right?  It has been long enough to stop grieving, let go of the pain and enjoy life again?  If she didn’t pretend, if she let it all come out in that public setting, she would soon become a social pariah.

First of all, there is an absolute lie out there that anyone who has lost a spouse or a child knows is a lie.  The lie is that after a year, a person ought to be over the loss, be done grieving and be able to get on with life no longer disabled by the pain of that loss.  Sometimes acquaintances begin to get impatient with a person’s grieving just months after the loss. 

It just doesn’t work that way!  Grieving is so complex as not to allow any template defining its time frame and boundaries.  No one can decide for someone else how to grieve or how long to grieve.  Yes, grieving can turn into a pathology.  But sometimes one person’s pathology is another’s path to acceptance and good health.  Most of those who allowed me into their lives at a time of deep pain over a loss have needed reassurance more than diagnosis.  They needed to be reassured that it is all right for them to feel the pain, to be okay and then relapse, to cry too much or too little in the judgment of friends and acquaintances.  They needed to be allowed to keep their defensive denial in place as long as they needed it until they were ready to let the full force of the loss finally hit them. 

Those who had gone through a painful loss, needed a place to talk it through, a place where they had permission to go over the same territory over and over again until the intensity began to diminish.   They needed a place where there was no need to pretend. 

What became clear to me in four decades of ministry to people in pain is that while each is convinced that he/she is surrounded with people who are doing fine, while he/she is not, he/she is surrounded with others who are doing the very same thing.  When we are in pain, we look at others who appear to be normal, happy, well-adjusted, but are pretending just as we are. 

Those of us who are doing full time caregiving, whose world is filled with never ending responsibility for someone else’s well-being can decide that no one out there understands.  We can begin to isolate ourselves and then conclude that no one cares about us.  If they cared they would pay more attention to us.  The truth is, we are surrounded by others who are looking at us longing for a bit of our attention, a word of interest in their situation, maybe thinking we would not understand since we are normal, happy and well-adjusted.

When I looked out over the congregation in a worship service, it often struck me that people with similar problems might be sitting near one another with absolutely no clue that they were both in almost the same situation. 

The way to find the strength to deal with our own pain, is to turn away from it long enough to see someone else’s struggle and try to make a difference.  Allowing others to shed their pretenses with us, not only helps them find the strength to deal with their pain but puts our pain in perspective and allows the possibility of our pain becoming more bearable.  

When we open ourselves to see and hear the stories of other people’s struggles, we find that we are not alone, there are others who understand.  Not only that, we are challenged to live meaningfully with our problems.  Seeing and hearing other people tell us their stories takes from us our excuses for allowing the problem to rule our lives and interfere with finding joy and meaning in life. 

No we are not okay.  We are in pain.  We have suffered a loss.  We are just putting on a front.  No one else understands or cares.  They are all okay.  Sorry — not true!  Most of us have a load of pain to carry.  Most of us are not at all okay.  Maybe it is time to stop pretending we are the only ones hurting. Maybe it is time to actually pay attention to someone else, listen to them without explaining why our suffering is greater than theirs.  Maybe by removing the pretense we can support one another, draw strength from one another and steal from our pain the power to separate and isolate and rule our lives. 

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 15, 2009

Problems Sometimes Give Good Gifts!

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , |
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Her name is Kim.  Everyone should have the chance to know someone like Kim some time in their lives.  Kim is a vivacious mother of two school-aged boys.  The boys are both gifted, caring, thoughtful beyond their years, the sort any parents would be proud to call their own.  She is wife to a good man who cares deeply for her.  I suppose that description suggests that Kim has a picture perfect life.  Oddly, she would probably tell you that is precisely the life she has, picture perfect. 

Kim’s life took a dramatic turn only months ago.  An unexplained pain that turned out to be unrelated to the Cancer led to tests which led ultimately to a diagnosis of Breast Cancer.   As you might guess, that summary hardly contains all the dynamics of the journey from pain to diagnosis. 

Because of family history, Cancer in the lives of Kim’s Mother and Grandmother, Kim realized that she needed an aggressive treatment response to her diagnosis.  She has had the double Mastectomy and will have a hysterectomy.   The good news is that the surgery has gone well, and chemotherapy is not necessary since it would have minimal effect on the statistical risk of recurrence. 

The word Cancer has the power to bring the strongest to their knees.  At first mention of the word, thoughts move immediately to the worst possible outcome.  From the very first word of the diagnosis, Kim has not broken stride as she moved through each step into her and her family’s new perspective on life. 

In almost forty years of ministry, I have watched people travel the path of dealing with a life threatening diagnosis.  No matter how bravely the people receiving the diagnosis respond, those who love them are shaken to the core.  It is cliche to say it, but it is true.  It is often harder for those who love someone going through a devastating illness and the resulting pain, than it is for the person with the pain. 

There is a sense of helplessness for those who watch and care deeply for someone with a life threatening disease.  Those with the disease sometimes come to acceptance before those who love them.  It happened that way so often for those to whom I ministered over the years, that one of the first conversations we had when I visited was the one about just how much they would be called on to help others come to terms with what was happening to them 

Back to Kim.  Kim has a deep faith that provides her with a sense of security and the freedom to face what is happening each step along the way.  As a result, she can talk and reason and process each option without panic or pretense.  She has talked openly with the boys who share her faith.  Nothing is off the table in terms of talking about the facts of her situation and what each in the family is going through.  Kim, her husband and the boys have all through these past few months expanded their capacity to understand life in all its depth and breadth. 

While Kim appreciates fully what has happened in their lives, she is profoundly grateful for the good gifts this problem has given her and her family.  Of all things she feels privileged.  If I remember our conversation correctly, that is precisely the word she used — privileged.   

I can testify, that not all those who have gone through what Kim is going through (or some other problem like it) have felt privileged.  I have watched some become bitter, fall into despair, lash out at God and anyone else within reach, feel so sorry for themselves that the world shrinks to become solely about them and their struggles. 

Kim is not one of them.  In what could have destroyed her and her family she has found gifts of deep and lasting value.   Faith has revealed itself more powerfully, the quality of relationships grown.  She has become for others a bright beacon of reflected light — reflected because the brightness comes from the unconditional love of a God whom she knows well, revealed in the person of Jesus Christ.  While those who read this blog need not share the faith that is the source of strength for Kim and for me, it is nonetheless our understanding of truth.  We cannot describe our experience without  reference to that faith.  If Kim were to agree that her life is picture perfect, it would not be because there is no pain, no fear, no struggling, but because there is a beauty that has become more visible than ever, the beauty of life with meaning, life well-lived, relationships that are real and deep, and hope that cannot be snuffed out. 

Almost five years ago, I did the funeral for a man named Tom.  Tom had a pain in his leg.  Two years later he died of the Cancer that had spread beyond the reach of the treatments available.  While it was hard for his wife to hear him say it, not long before he died he said that the last two years had been the most meaningful time in his life.  He found gifts that opened him to life more fully than ever, life with his wife and children.  Tom touched hundreds of lives as he traveled those last two years.  Tom drew strength from the same faith.

I have written before in the post on this blog some of the gifts that have been given to us in these twenty-two years with Parkinson’s traveling with us.  I would not presume to speak for Mary Ann on this matter.  I have seen pe0ple cluster around and come to know her and respect her and love her as friend — people who came at first to help her, and were ultimately helped by being with her.  She has revealed to all who know her and know of her, great courage and strength and endurance as she has taken so many hits and gotten up again after each.

I have learned more about what it means to love than I suspect I ever would have without the struggles we have encountered.  I cannot know what life would have been without the struggles, but I am grateful for what I have been taught by them.  Our Children and their spouses have revealed to us great strength of character, wisdom, love drawn out by the struggles they have helped us through.  Mary Ann and I have the joy of seeing three Granddaughters reveal a deep love and concern and caring that has been given the chance to be expressed in age appropriate ways. 

Kim would not have chosen the Cancer.   Tom would not have chosen to leave so soon.  Neither Mary Ann nor I would have chosen the Parkinson’s, but all of us have been given gifts of a value too great to be measured.  We have been privileged to find a quality, a meaning in life that cannot be learned from a book or a lecture or a DVD or a blog. 

Problems sometimes give good gifts!  For those of you who are midstream in the struggles, look for the gifts, open them, play with them.  They are more valuable than can be measured.

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 14, 2009

Creating a Nurturing Environment

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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I tried again tonight.  I am resorting to chemical warfare, natural, organic, but nonetheless chemical warfare.  The weapons: blood meal and Cayenne pepper.  I am determined to have sweet potato vines growing in the large pot on the deck, and the squirrels are determined that it will not be so. 

When we first moved in there were no squirrels.  I longed for them.  When the first one came, I fed it.  Now there are a cluster of them.  I still feed them.  That makes it even more annoying.  The ungrateful buggers.  I have taken care of them day in and day out and this is my thanks — eating my sweet potato vines?

That is not all.  I planted some Salvia in the barrel — four plants.  I caught one eating a salad of Salvia leaves.  More than that, chewing off the stems at the surface of the dirt.  If that is not enough, later I caught the squrrel as he was chewing off the Salvia plants that were still in the flats, awaiting transplantation to small circle of plants in front of the house.  I managed to salvage four plants for the front.  They are still growing a week later.  The squirrels seem not to venture into the front yard. 

I have a theory about the squirrels specifically choosing to eat the Salvia.  I mentioned my plight in the Wednesday morning group that meets on the deck.  One member remembered her daughter mentioning that kids sometimes smoke Salvia to get high.  Apparently a strain of Salvia is a hallucinogen.  I decided that the squirrels are partying on my Salvia!  I haven’t noticed any unusual behavior, but then who knows what  behavior is normal for a squirrel.  Actually, the strain of Salvia kids have smoked has been illegal in Kansas for the last few years. 

I have now been assured by two people that blood meal will repel squirrels  and by another person that the vines will absorb the Cayenne pepper — one bite sending the squirrel screaming in agony.  For some reason the movie Caddyshack, Bill Murray and Gophers just popped into my mind. 

With Mary Ann supervising, in the last week or so, I have planted three large pots on the deck, an area behind the house, a barrel near the front door, a small area in front of the house and will soon plant a vining Petunia on a berm next to the house.  There is very little rhyme or reason to the plants and flowers picked and only limited aesthetic value, but at least they are planted. 

Since our circumstances tie us to the house much of the time, it seems worth the effort to work at creating a nurturing environment.  Flowers and plants are a part of  creating that environment. 

One of the activities that creates interest at home for me is creating a friendly presence for the birds.  There are eleven feeders of one sort or another attached in some way to our little deck.  In addition there are a couple of ground feeding areas in the back yard near a tree behind the deck.  There is a heated bird bath attached to the rail.  I have just hung a new little meal worm feeder outside my office window at the front of the house.  I am still in the process of waiting in hopes that a neighborhood wren will discover it.  We have a speaker in the dining room that picks up bird sounds from the deck area through a microphone just outside the window. 

We have planted trees in the back to provide shade and cover for the birds and squirrels and aesthetic variety.  The wildlife that has wandered through includes a couple of Mallard Ducks who regularly come by to eat, a possum seen once foraging in the feeding areas under the tree, last night a brazen Raccoon stopped by to climb on the deck and munch seed from one of the bird feeders.  I have seen his paw prints more than once in the bottom of the birdbath.  Rabbits hang out under the deck and often join the others at the feeding areas. 

We live in a maintenance free cluster of townhomes with multiple subdivisions in all directions.  We have created such a welcoming space for wildlife because I find their presence to be nurturing to my mental health.  Mary Ann enjoys it some, but mostly just tolerates my penchant for feeding the fauna.   

Next week ABC Ponds will begin work on the pondless waterfall that will be constructed behind the deck.  What precipitated the idea was the need to deal with a problem with standing water behind the houses in our area.  Sump pumps cycle constantly emptying into the area.  The clay will not absorb rain water when comes.  What will be created is essentially a manmade wetland with a deep reservoire filled with natural filtering material, covered with perennial native marginal plants.  The water will be pumped from the base of the well to the waterfall.  Kansas State University has been using this process in recent years to deal with run off. 

The environment I have sought to create is not just a novelty.  It is an essential element in my survival here.  The television provides entertainment for Mary Ann.  I watch my share of it but find it to frustrate my sense of well-being rather than nurture it. 

Many a day we are not able to set foot off the property due to the complexities of Mary Ann’s physical needs.  There need to be nurturing elements in our environment. 

Inside the house are paintings, a metal wall sculpture, antiques, crystal and china and ceramics to add quality and variety to the interior of our home.  A few  years ago I commissioned two members of the congregation, a cabinet maker and an artist to create a small worship center that sits in my office, providing a focal point for meditation.  We have a sound system in the living room that provides a good quality of sound for the occasional time after Mary Ann is in bed for just listening to music that feeds my spirit. 

If I will be a healthy and able Caregiver for Mary Ann, there needs to be regular access to that which nourishes my well-being.  I am then better able to provide for her as nurturing and safe and healthy an environment as possible.  Rather than allowing the four walls of our little living space to be confining and boring, empty of the richness we both need to maintain our emotional health, we have committed our time and resources to creating a nurturing space in which we can live meaningfully. 

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 13, 2009

Do Each Task as if it is Important

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , |
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I cleaned the kitchen floor two days ago.  I got out the Swiffer WetJet with the little button on the handle that squirts some cleaning liquid on the floor to be wiped with the pad at the end of the mop handle.  It is not rocket science.  I didn’t break a sweat.  The floor looked nice afterward. 

I have an earned doctorate; at one time I could read with limited proficiency five languages (English, of course, plus Latin, Greek, Hebrew and German).  At this point I can barely handle English.  I will not bore you with the details of the work that I have done in my career.  Suffice it to say, I could complain that cleaning the kitchen floor with our Swiffer WetJet was hardly important enough to be very satisfying. 

There was something satisfying about sweeping the dirt off the floor (I tracked in some dirt earlier in the day), then squirting and rubbing until the spots were removed.  My days are mostly filled with pretty simple and mundane tasks.  I get Mary Ann to the bathroom, to the table, bring her pills and juice and yogurt and Cheerios or Special K or Cinnamon Toast or a banana or a granola bar for breakfast.  I clean out the commode from the night before, make the beds, get Mary Ann dressed, maybe wash her hair.  I put wash in the washer, switch it to the dryer, fold it and put it away.  I fill the dishwasher, run it and then empty it. 

There are very simple meals to be made for lunch and for supper.   We sometimes head out to get something to eat at one of our regular spots.  I feed the birds and read emails while Mary Ann watches television.  I suspect I will not be nominated for one of the Nobel prizes for notable accomplishments in household care.

The role of Caregiver does not bring with it great public recognition, although the article Linda wrote on our situation did give us a moment of notariety in our local paper.    Each of the things I do during the day seems to have little importance, little value in the grand scheme of things. 

Within the history of the spiritual journeys of leaders in many religious traditions, there is a certain approach to doing each task, important or not by external standards, in a way that recognizes its inherent value.  The Rule of St. Benedict provides great attention to detail. urging all to work at menial tasks no matter their status.  Celtic Spirituality emphasizes focusing full attention single-mindedly on the task at hand, no matter what it is. 

I was in a committee meeting one evening.  The group was a fairly congenial crew, at least most of the time.  We were gathered to evaluate candidates for an opening at the Elementary school sponsored by three congregations.  I am not sure what triggered the interaction, but somehow the matter of the need to multi-task came up.  One of the women in the group immediately said that recent studies of the brain had revealed that women’s brains were hardwired for multi-tasking, and men’s brains were not.  Now I have no idea of the validity of the information.  I did however have a wonderfully annoying reply.  I said that may be true, but men do one thing at a time and do it well.  After the laughter subsided we went on with the meeting.  I still don’t know what was so funny about that.  Actually, I couldn’t even complete the sentence about men doing one thing at a time and doing it well since I was laughing so hard myself. 

There is something to be said for doing one thing at a time and doing it well.  Another way to say it is that it is good to focus full attention on the task at hand, to immerse yourself in it, heart and soul, to avoid distractions as much as possible. 

It seems as if much of what we do is done as quickly as possible to get on to the next thing or the really important stuff.  There is a sense in which we simply miss a good portion of the life we are living day by day, in anticipation of what will come later in the day or tomorrow or later in the week. 

Rather than measuring the importance of each task by what importance it has to others, or how much value it has in the marketplace,  how about paying attention to the task itself.   A priest named Ed Hayes has written some great tools for learning to pay attention to every task, big or little.  A couple of his books are Pray All Ways and Secular Sanctity. 

Whether a person has a spiritual understanding of reality or not, being present with each task while doing it provides an opportunity to recognize the importance, value, meaning, purpose of even the simplest of activities.  It is calming and satisfying to do one thing at a time and do it well, or do it with intentionality. 

When I listen to music, I usually do not use it as accompaniment for something else.  I listen to it.  The music sometimes becomes very powerful in touching me deeply when it could not if I was doing something else at the same time.  When I wash Mary Ann’s hair, it gets my full attention.  When I make the beds, the doing of it creates a feeling of order to my day.  Feeding the birds provides a meaningful intersection with a world outstide the walls of our house. 

Being present with whatever we are doing does not demand searching for some sort of deep meaning.  I suspect in the world of sports it is sort of like being in the game.  

The speed with which life comes hardly seems to allow the possibility of doing one thing at a time, being fully engaged in a single task.  I think it is fair to ask the question, does multitasking actually get more done, or does it just get less done on each of more things?  How much safer would the roads be if drivers did one thing, drive the car.  How many fewer errors in operating rooms would there be if the doctors, nurses, technicians all gave exclusive attention to what they are there to do.   

Rather than treating the simple daily tasks as throw-aways of little value, engage each one fully, experiencing every dimension of it, soaking in the sounds and smells and sights and textures and maybe even tastes.  Rather than measuring its importance by some external standard, allow its inherrant value to emerge, from the inside of the task. 

Do each task as if it is important.  It will become so, and with it meaning and purpose and value will be added to each day.  Caregivers’ lives are filled with mundane tasks, mundane, but important. 

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 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!”

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

 

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