August 15, 2009

Caffeine: Cargiver’s Drug of Choice

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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As reported in the previous post, last night was pretty crazy until Mary Ann settled down around 12:30am.  Since that time, she has been awake only six hours of what has now been twenty-four.  She was awake for an hour early in the morning, an hour and a half late in the morning and three and a half hours in the late afternoon/early evening.  She seems to be sleeping soundly at the moment.   A portion of the time she was awake was spent in a very sleepy mode with her head down. 

My hope was that all the sleeping would give her mind a chance to rebuild those synaptic connections that had not had time to build since there had been some restless nights and a napless day yesterday.  My hope was that the rebuilding process would reduce or eliminate the hallucinations.  That hope was not realized during the few hours she was awake.  There were almost constant threads to be picked up and pulled off her hands.  She insisted that the bedspread that had in her mind been soiled by the raccoon last night be put in the washer.  Bedding needed to be washed anyway due to the very long midday nap without a bathroom break. 

It seems unlikely that she will be able to stay asleep throughout the night with all the daytime napping that happened.  We will see what tonight and tomorrow brings. 

One of the challenges for this and most other Caregivers is the challenge of dealing with being tired much of the time.  I am too proper and frugal to use illegal drugs to stay alert.  Actually, I don’t want to mess with my brain by putting foreign substances into it.   I have chosen to use something legal and familiar to stay alert — caffeine.  The delivery system that I use for getting the drug into my system is coffee.  I don’t do soft drinks.  I don’t use energy drinks spiked with large quantities of caffeine. I drink coffee, hot coffee, nothing added, no flavors, but not just any coffee.  I would not condescend to drink Starbuck’s.  I only drink coffees made with beans roasted to perfection locally. 

One of the owners of the business travels to the farms all over the world, especially Central and South America, and comes to know personally the local farmers and their families.  They are paid above fair trade standards with the agreement that the workers and the local community fund will benefit from the proceeds. 

The Baristas are well-trained, often winning at regional competitions and even participating in nationals.  The national Roasters’ Magazine designated them 2009 Roaster of the Year.  

Needless to say, I have developed an interest in the coffee that I use as the delivery system for my drug of choice, caffeine.  I have learned a little about the various ways of preparing the beans and the resulting characteristics of the coffees made from those beans.  If I sound pretentious on the subject, you have made an accurate assessment.  I know far less than most who are interested in good coffees.  I just like to talk about it, use the jargon and pretend to know stuff. 

As to what any of this has to do with Caregiving, like the raccoons of former posts, it is my entertainment.  The caffeine does help me stay alert when I am tired.  That part is a real benefit when needing to stay at the various tasks associated with filling Mary Ann’s needs and maintaining the household.  Even if drinking a good cup of gourmet coffee is mostly about the placebo effect, fooling me into thinking I am more alert, it still works!  

One of the difficulties of being so picky about the coffee is that when I am stuck at home, I am in trouble.  Yes, I can pull out the decades old Mr. Coffee and make a pot.  It is not the same as getting it from PT’s.  One reason is that they can brew the coffee at a hotter temperature (am I a coffee snob or what) than home coffee pots.  Home pots brew at about 160-165 degrees, while they brew at 190-200 degrees. 

Now for the really good news!  There is a coffee maker manufactured by hand in Holland that meets the professional brewers’ standards.  It is a Technivorm coffee maker.  Needless to say, they are not cheap.  Through a very unusual course of events, I was able to purchase one at a very steep discount. 

This all sounds pretty silly in the face of the real challenges of daily life, especially for full time Caregivers.  It is not at all silly, when completely trapped at home with no access to the stimulating liquid that provides a little pleasure. 

Now, using the new grinder (a Conical Burr Grinder, also steeply discounted) to provide exactly the right texture to the coffee grounds, I can make a pot of coffee brewed at 190 to 200 degrees, using freshly roasted beans, the best available, allowing the flavor to bloom before opening the bin to let the brewed coffee slowly fall into the thermal pitcher. 

Today, we were not able to set foot outside the house.  In spite of that, the day was bearable.  We had bought a half gallon of ice cream yesterday, so Mary Ann could have a big bowl this afternoon during one of the times she was awake.  She had leftover cheese bread from our favorite pizza place, left from yesterday’s short outing.  I had a good cup of coffee to lift my spirits.   The birds were singing and the waterfall was spashing over the rocks.  Trapped, but surviving well. 

http://www.ptscoffee.com/  Check them out.  You won’t be disappointed!

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.

 

August 12, 2009

Update: Raccoons

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Got one!  Now don’t worry, no one was hurt in the process, neither people nor raccoons.  It was little Tommy.  He couldn’t resist the tuna flavored cat food in the live trap.  Sister Sally, along with Mom and Dad, Gus and Belle, have yet to venture in and snap the door shut.  While I am sure he misses the family (who I hope will join him soon), he is clearly old enough to fend for himself.  Those paws and claws looked a little menacing this morning. 

There is a luxurious new home, laden with food, that awaits them as, hopefully, they are all relocated to a more raccoon friendly neighborhood.  I was fine with one.  It was a little too much, however, when Belle started bringing the twins along regularly.  Then when Gus came and stood his ground, taking ownership of our deck, refusing to allow his human host anywhere near the deck, the decision was made that a relocation effort would be undertaken.   I suspect he is at least twenty-five pounds of intimidating bulk.  It is a good friend with experience in relocating raccoons who is providing the equipment, the expertise and the transportation to their new home.  Thanks, Tim!

While we have finally had a bit of success in the relocation project, I am not altogether confident that the whole family will cooperate.   The first attempt netted only an empty cat food can and an unsnapped trap.  The next night drew no interest from the raccoons.  The third try ended up with an empty cat food can, a snapped trap, but no occupant.  It is only the fourth try that has resulted in a relocation. 

I have loved animals all my life; my Dad did before me.  He was a conservationist before it was popular to be one.  No hunters were allowed on the property, although he trapped muskrats along the creek for a while.  When we caught fish, they were to be released again.  He fed the deer.  We watched a raccoon, Goldie by name (golden colored fur), raise her family.  He would pat the chickens on the head when he gathered eggs.  He could call birds with his whistling, owls with his imitation of their calls. 

I love wildlife, but there comes a time when the issue is territorial.  This is my house, my deck, and my bird food!  Sharing a little is one thing.  Eating large quantities of very expensive food and camping out on my deck is another.  One guest is okay once in a while, but moving the whole family in permanently is another matter. 

I have no idea what this subject has to do with Caregiving.  If there is any relevance, it has to do with keeping this Caregiver healthy.  It has been a focus of attention, something different from the routine demands of our situation.  The sight and sound of the waterfall in the back yard, the sounds of singing insects, birds chirping and jockeying for position on the bird feeders, all provide a kind of accessible therapy.  The raccoon relocation project is just another distraction that engages my energy and attention here at the house.   I guess, if the deck provides deck therapy, maybe this project is raccoon therapy (therapy for me, not the raccoons!).

One additional benefit provided by the relocation of the raccoons may be their removal from the bedroom hallucinations.  If they are no longer in the neighborhood, maybe they will no longer be in our bedroom.

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.

 

July 25, 2009

We Can only Live the Life We Have.

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For those following Mary Ann’s battle with fainting, while I had hope that the higher dose of the medicine that raises her blood pressure to reduce the problem was working, it hasn’t done so well yet.  The fainting continued yesterday.  Today, there was very little fainting.   We will take this a day at a time, and hope that the medicine begins to improve the quality of life.

Speaking of life, there have been a number of interactions on the Lewy Body Dementia spouses online group about quality of life issues.  There are so many brave souls there who have been caring for spouses much more challenging than Mary Ann.

In a post on that group’s site, I mentioned that I had re-framed my life so that I now understand my job to be the care of Mary Ann.  I don’t mean that in a way that makes any less of our being husband and wife.  It is a way for me to think about the tasks I do that gives them meaning and purpose, rather than seeing those tasks as an interference with my life.

There were a number of responses from folks that seemed to struggle with that idea.  They also commit themselves to caring for their Loved One.  Some do better with that care by thinking about the life they hope to lead after their Loved One is gone.  That provides hope that gets them through the tough time.

There were some who observed that whatever our reasons for doing what we are doing in caring for those with a Lewy Body Dementia, we will finally in the end, lose.  This journey will end badly.  In that group we all give one another permission to share our frustrations openly without judgment.  We need a place to do that, especially those who are in the most difficult times in the progression of the disease.

With that said, no matter how devastating and hopeless the situation is, it is, finally, the life we have.  What will or will not be so at some unknown future time, while it can provide some sort of light at the end of the tunnel, is not yet the life we are living.  It may or may not come to be so, but it is not so now.  We are left to try to figure out how to do the best we can with what is so right now.

My intention is to use every resource at our disposal, to fill our lives with meaning and satisfaction.  I am not willing to let meaningful living wait until some future time that may or may not come.

Whether it is a good or bad approach to life, there are lots of things I might have liked to do that I have let go of as options.  They may never be options.  I can feel sad about that, mad about that, fight the unfairness of it all.   In fact I may need to give myself permission to have all those feelings.  Finally, for me, there is neither the time nor the energy to give now to things that may or may not come.  The life we have right now needs our full attention.

Most of the things I am not now doing, singing, traveling, going on spiritual formation retreats, going on bird watching outings, doing part time ministry, volunteering, attending music events, all offer lots of possibilities for entertaining, satisfying experiences.  They are not, however, in and of themselves, the means for bringing fulfillment into my life.  The are the context in which meaning can be found.  Meaning is what we do with the life we have, how we view it, what we take from the context.  Obviously some contexts are harder to live through, than others, some have more pain included, some take more effort to find the meaning, but the life we are living is the one we have.  If there will be meaning and purpose, it needs to be found in that life, not the one we wish we had.

In the sense that it is a certainty that sooner or later death will come, yes, the journey will end badly.  In that same sense, it is true for all of us.  Eventually, we will die, so will those we love.  Today I preached at the funeral of a friend who died at the age of 93, after living a life filled with obstacles to overcome, a life filled with wonderful, poignant, entertaining stories.  Life does end in death.  That is just the way it is.

No matter what our circumstances that end is still awaiting.  Either we accept it and live meaningfully in spite of it, or we allow the fear of death to overwhelm us and steal the joy from the moment we are in.

We happen to have a perspective on life that allows that there is something more than meets the eye.  We understand there to be a Someone with whom we are in relationship, a Someone who provides love and security not bound by finite limis.

With that perspective, we can concentrate on living the life we have as it comes day by day without despair if is doesn’t happen to be the life we would have chosen.

We would not have chosen the life we have, but it is our life.  Each day brings with it challenges, joys, sorrows, relationship struggles and satisfactions, and the opportunity for finding meaning in what we are doing.  Again, it may not be the life we would have chosen, but it is the one we have, the one we will live to the fullest.

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.

 

July 13, 2009

Stresses Converge

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The decline continues as there is still no evidence that increased medication is impacting the multiple episodes of fainting.  In the morning, Mary Ann has continued to faint even while just sitting in her chair.   After the long morning nap there is some improvement, but each day there seems to be less and less improvement.  She can’t stand up for more than a minute or two without dropping back into the chair.  Occasionally later in the day she can make it twenty or thirty feet.  

Today I had the wonderful privilege of Ordaining into the ministry a young man I respect very much.  It was a powerful and meaningful experience for all of us.  The Service went well.  It was especially emotional since his Mother had died a few years ago of a form of Alzheimer’s Disease.  She would have been proud beyond words. 

Having been retired for a little over a year now, today has clarified something about the nature of the Pastoral Ministry.  Leading worship services, when done weekly is no small task, but the regularity helps, especially for someone who is terrified of making a foolish mistake in public. 

As today approached, I found myself deeply apprehensive, especially since it was an Ordination service, different from the Sunday norm.  I couldn’t count on auto pilot to get through it.  It felt like what I would imagine a tight wire artist would feel like if after a year of not walking the wire, he was stepping out on a wire stretched over a canyon with no safety net.  I realize I wouldn’t actually be hurt physically if I made some foolish mistake, but rational thinking has little impact when the fear center takes over. 

The stress of fears about where Mary Ann’s disease is taking her so quickly these last days and the stress of deep seated apprehensions about the Service today converged, making for a very difficult weekend.

It is painfully obvious, that stress complicates caregiving whatever the source of the stress.  It took a great deal of effort to maintain a level of patience through this time.  It helped that by now I know myself well enough to recognize the real seat of my frustration.  It is not at Mary Ann, it was simple fear struggling to find a way to express itself.  

As for today, there was a very capable Volunteer from the congregation during the morning hours, allowing me to do some preparations for the service.  Then this afternoon, while I was at church before, during and after the service, doing what had stirred the apprehensions, there was a paid Companion Care person from a local agency, Home Instead.  She had been with Mary Ann most every Sunday morning the last year or two before I retired.  I could leave the house confident that Mary Ann would be in good hands while I was gone.

One significance of doing the Ordination today is that a month from now will be the fortieth anniversary of my Ordination.  Forty years is the normal length of the career of a pastor as a full time paid worker.  I finished my professional career, Karl began his.  All sorts of emotions were stirring as he took over the last portion of the service as an Ordained Pastor. 

One of the most powerful moments was the choir singing a piece called the First Song of Isaiah.  It is a piece strongly associated with Karl’s Mother while she was alive and at her death.  As they sang and I thought of Tina, my fears about where Mary Ann’s Parkinson’s is now taking her folded into the moment. 

We are on a roller coaster that may go up and down many times for years to come before we move into the endgame.  There are moments when the stresses converge.  I am grateful that we have a framework built on deep spiritual footings.  That is what allows us to live each day as fully as possible in the face of whatever comes 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.

 

June 28, 2009

Deck Retreat: Wildlife Population Grows

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…and baby makes three!  Actually, it is Mom and two babies.  One raccoon is sort of a novelty.  Three raccoons is two over quota.  The young’uns are not all that well behaved either.  The banging at 3:30am turned out to be one of the babies knocking a ceramic pot holding an asparagus fern off the old wooden box it was sitting on.

After watching them for a while, I decided it was time to get them off the deck before the kids did any more damage.  I turned the deck light on and off a few times to scare them off.  Not one of them even flinched.  Mom and one of the youngsters kept eating what the squirrels had left in the pan of oil type sunflower seeds I provide to keep the squirrels attention away from the bird feeders.  The other youngster, I suspect, is the problem child.  He/she messed around some more and then finally left a while after the other two had headed off and under the deck.

The lights in the waterfall are now in, and as a result nighttime deck therapy is an  option.  Each of the four levels has a light at its base. The light is invisible until the timer turns it on.  Neighbors Tom and Amy and I sat on the deck for a while and talked, just enjoying the sound and sight of it.

What makes sitting on the deck possible is that the little seven inch screen on the A-V monitor keeps Mary Ann in view.  I can see when she starts moving and needs my help.  Without the monitor, I would need to head into the house every few minutes to be sure she didn’t need something.  This way I only have go when she actually needs me.  I have now ordered a second camera so that both the bedroom and living room can be seen by just moving the channel switch from A to B.  Again, the screen and audio-visual monitor is a Summer 2500 available at Babies R Us.

Mary Ann and I headed into Kansas City to spend time this afternoon with friends we have known since the early 1970’s.  The time there is always refreshing.  One couple in our crew, like us, is a caregiver/receiver couple.  Marlene has ALS. Charlie has retired (mostly) and is now a full-time Caregiver.  He is the one who sent me a beautifully written email when I first revealed my decision to retire and spend full time helping Mary Ann with her needs. In the email Charlie told me what an honor it is to be able to have the role of Caregiver.

As always, we enjoyed the time together.  There is no self-consciousness to distract from the relaxed friendship.  Whatever special needs Mary Ann has are just taken for granted.  Charlie and Marlene often have helpful suggestions.  There are ramps into the house and on to their deck.  The arrangement of furniture allows space for wheel chair movement.  Marlene uses a motorized wheelchair.

We returned home, and I have managed a few minutes on the deck with Mary Ann securely in bed.  Having just fallen asleep for a moment at the keyboard, i think it is time to post this draft and get to bed.

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 24, 2009

Caregiver’s Plans for Deck Therapy!

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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.

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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.

 

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