We were determined to keep active to the extent possible.  Before the wheel chair was absolutely necessary, we headed to Jamesport, Missouri, Amish Territory, to stay at the Country Colonial B&B.  There were folks dressed in the appropriate garb, using horse and buggy transportation throughout the small town.  As is the case with most B&B’s, the rooms were upstairs.  Mary Ann was still able to do stairs at that time.  The room we stayed in had a fairly accessible bathroom.  The room was small and stuffed full of things.  The beds were always a challenge since they were very high.  Getting in and out could be a struggle.  There was always a little apprehension that she might roll on to the floor.  Gratefully, in all our visits to B&B’s that apprehension was never realized. 

The owner had a brand new wife from Russia.  She spoke very little English.  She served a very elaborate breakfast using multiple silver serving containers, each made expressly for what it contained.  There were muffins and pastries and boiled eggs and poached eggs and waffles and fruit, sausage and bacon.   I can’t remember all that she served, but it was many times what the two of us could eat.  When we were there, they were setting up for a mystery dinner that would be served there the next evening — clues placed all around the various rooms.

The evening before that lavish breakfast we were driven in a horse and buggy on a tour through the area, hearing about the various businesses and farms run by the Amish population in the area.  We happened to be there on a day of the week that the shops were closed, so we didn’ t get to see inside many places, but it was still very interesting.  There was one shop open when we left town.  It was filled with baked goods, jams and jellies. 

On another occasion we stayed at Ehrsam Place Bed and Breakfast in Enterprise, Kansas, near Abilene.  That B&B is now closed and has again become a private home.  There were artifacts and art work throughout the downstairs and upstairs.  Our room was huge, with a four poster bed, a sitting area and a balcony.  The property was filled with beautiful gardens.  There was a path that led away into a wooded area and looped around to the edge of the town.  As always, the breakfast was lavish.  The owner joined us at table since it was just the two of us there at that time. 

We were there at a very hot time, so unusual for a summer in Kansas!  In spite of the heat, we rode the Abilene & Smokey Valley Excursion Train.  Poor Mary Ann practically melted, but we rode the ten mile round trip.  We still enjoyed time we spent in Enterprise.  We decided that the trip would be better done at a cooler time. 

Then there was the Laurel Brooke Farm near Weston, Missouri.  It is seven miles outside of town, in farm territory.  The views are expansive, especially from the back deck.  There is a vineyard next door.  The B&B sits on 40 acres of land with a Pecan Grove and Orchard on their property.  By the time we made that trip, Mary Ann needed the wheel chair.  This was one of the very few B&B’s that have handicapped accessible rooms available.  The rooms were in a restored barn, with the dining area and souvenir store were on the first floor, along with our room.  The breakfast was good, not up to the standards of the other B&B’s but still very good. 

We headed in to Weston to visit some of the shops.  It is there that Mary Ann got what we called her Quilty Jacket.  It was her favorite from then on.  The shops were not easy to negotiate, but we did the best we could.  We ate at a restaurant that was laid out so that the diners could interact with the Chef.  He was noted for being very good.  We agreed with that assessment after the meal. 

Actually, our first B&B visit was in Cottonwood Falls, Kansas.  It was  The Grand Central Hotel, an old hotel that had been remodeled to serve as a Bed and Breakfast.  The Hotel has a very nice restaurant that also serves the public.   The breakfast included with the room was again very substantial. 

There is a stately old County Courthouse there, but it was inaccessible to Mary Ann’s wheelchair, so we just looked at it from the outside.  Our favorite spot there was a shop with a large loom in the main area. The owner used old denim to make all sorts of things.  There were lots of rugs and placemats.  We brought back from there a stack of placemats and went back another time to get coasters made the same way. 

The town sits in the middle of what is called the Flint Hills, rolling hills of prairie grass.  While it is private land with only a small space actually governmentally owned, the coalition of private owners and those concerned with the preservation of this only piece of natural prairie left in the nation, are keeping it protected from development. 

The Flint hills’ grasses have roots that go fifteen to eighteen feet deep.  They survived the onslaught of millions of hungry buffalo in earlier years.  Now cattle graze on large parts of the Flint Hills.  A part of the prairie is burned each year to remove sprouted foreign seeds that birds have brought in. 

Cottonwood Falls is the place to be in early spring when the burning begins.  There is a beautiful lake just outside of town.  We drove around it, stopped for a while for me to climb some of the hills by the lake, and just enjoyed the scenery. 

In spite of the limitations put on Mary Ann by the Parkinson’s we were able to carve out a good quality of life by making those short trips to continue to add to our memories.  The most spectacular Bed and Breakfast is one about which I have written more than once.  Since it was our last trip, just last October, I will write about it after writing about some of our other attempts at living fully and meaningfully during the Parkinson’s years.

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The last dozen years could have been spent cloistered at home, a prisoner to Parkinson’s.  We chose instead to live to the limits of our physical ability, maybe a little beyond.  It was Mary Ann’s resilience and our resolve that allowed a quality of life that was satisfying and fulfilling. 

In 1999, the Kansas City Crew, including the two of us decided that a trip to Alaska was in order.  It was John and Carol’s 35th Wedding Anniversary.  Gary knew someone who had been a travel agent and still had access to the last minute cheaper fares on the Princess Cruise Line.  Marlene was impacted by ALS as Mary Ann was by the Parkinson’s.  We just did it.  It was a wonderful, memorable trip.  We flew to Anchorage, enjoyed a Farmers’ Market there, drove to a lodge outside of Denali, where we sat on a deck in the bright sunshine at 11pm.  We bussed through Denali, seeing the spectacular sights, Mt. McKinley, Moose, Dahl Sheep and Bear Scat.  That is as close as we got to spotting a Grizzly Bear — okay with me.

There was the obligatory stop at Talkeetna.  We walked the street and marveled at the size of the flowers.  We made one stop that provided a scene that doubled us over in laughter.  There was a huge statue of a Grizzly Bear.  From the back, his stance looked exactly like a huge guy standing there relieving himself.  There is a picture of the four of us (the guys) from the back as we lined up on either side of that bear and mimiced his stance.  No, I am not going to post that picture.  There are former parishioners who read this blog.  The KC Crew threatened to send a copy to the church when the pictures came back. 

We drove to Seward and boarded the ship.  Glacier Bay was breathtaking.  The aqua blue eminating from the cracks, the snapping of the glacier as it moved, the rumble of the calving, a seal sitting on an ice floe, a bright day with a crisp chill in the air made that part of the trip the most vivid in my memory.  We traveled the train the gold miners used at Skagway, the White Pass Excursion Train.  It is impossible to describe the expansiveness of the views.  Everything in Alaska is huge! 

We saw the Mendenhall Glacier, already then having retreated a mile or two from the observation building that at one time was at the edge of the glacier.  We ate our fill of grilled salmon fillets covered with a sweet brown sugar glaze.  There was fresh Haibut — who knew it could have so much flavor when fresh from the ocean. 

The Cruise Ship, as always, fed us huge gourmet meals multiple times a day.  One of the KC Crew is fluent in Spanish, since she is from Puerto Rico.  At one of our first dinners, Maria spoke in Spanish with one of our waiters.  It was not long before it was clear what she had said.   That meal and every meal after that ended with my receiving a large chocolate dessert, at least one, no matter what else was served as the regular dessert. 

Charlie and Marlene, Mary Ann and I hung together since on account of the wheel chairs, we moved at about the same pace.  The ship was accommodating, and most of the places we wanted to see were accessible. 

Near the end of the trip we watched the Eagles in great numbers hanging around the salmon canneries in Ketchikan.  We ended the trip, sitting at a restaurant on Puget Sound enjoying one of the best views of the trip.  We made some wonderful memories as we ventured to Alaska and back. 

That was our biggest and most dramatic adventure during the Parkinson’s years.  There were many smaller trips sprinkled throughout the last ten or twelve years.  I will spend some time in the next post or two describing some of them.  I need to savor the good times we had.  Thoughts of how debilitated Mary Ann became can be overwhelming at times.  Remembering the ventures out somehow seem to provide a bit of salve for the still open wound created by her death.  It helps to remember that we made the best of a difficult situation and chose not to allow the Parkinson’s to rule.

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That January, Mary Ann could simply no longer care for herself.  I didn’t know what to do.  I needed to work to support us (60-70 hours per week as a Pastor).  We couldn’t afford that many hours of paid help.  It would cost more than my salary. The options simply weren’t there.

Then Margaret came to the rescue.  Margaret was (still is) the Parish Nurse at the congregation I was then serving.  She just started phoning people and before I knew it, there were Volunteers from the church staying with Mary Ann when I was away from the house at work.

After it became clear that she could not do the scheduling task and still continue her work as Parish Nurse, Carol stepped in.  For over six years, Carol scheduled Volunteers for weekdays while I was at work, evenings while I attended meetings and did Counseling, Friday evenings and Saturdays for weddings and retreats, Sunday mornings (I had paid help for the early morning hours), even emergency Calls when there was a serious illness or a death.  At one point there were at least 65 different Volunteers.  Some days had as many as five different people filling two or three hour slots.  I have never figured out how one person could manage all that.  I have nominated Carol for Sainthood.

By February, we had gotten back to KU Med Center, the Parkinson’s Clinic. They had transitioned to a new Neurologist, Dr. Pahwa.  He was able to put together a new regimen of meds that allowed Mary Ann to return to a significantly higher level of functionality.  The bathroom needs and the falling would still not allow her to stay by herself for any length of time.

After a year or so, we entered the two years from Hell.  Mary Ann had often complained of heartburn, since she was taking so many pills (I think 30-40).  At least that is what I thought.  It has always been hard for me to accept that I didn’t pick up sooner on the possibility that it might have been more than heartburn.

On June 30 of 2003, Mary Ann was admitted to the hospital through Emergency with a case of Congestive Heart Failure that came within a hair’s breadth of putting her on a Ventilator.  It was discovered that she had had a number of silent heart attacks.  Two of the three main arteries on her heart were completely blocked.  The surgeon was able to stent a branch of one of the arteries, but that was all.  She had another MI (heart attack) while in the hospital.

Mary Ann always moved into a hospital psychosis when hospitalized, hallucinations, agitation, inability to sleep, trying to get out of bed, pulling at tubes.  I stayed all night every night since the Parkinson’s meds were so complex, the various shift changes made it necessary for me to track what was going on.  The staff needed my help to manage her reactions, day and night.  I had to be there when the various doctors came to check on her or report the results of the endless tests and procedures.

By the end of those eight days, after an entire night of Mary Ann repeating “help me” over and over again, for the second time in my adult life, I broke down in tears.  Gratefully, Son Micah was there to hold me.  When she was released and came home, it was one of the lowest times in our life together.  Everywhere I turned to come up with a solution to how we could go on came up empty — except for Carol and the Volunteers.  They are the only reason I was able to continue in the ministry and we were able to survive.

Almost exactly one month later, she was back in the hospital with another MI and another unsuccessful attempt and getting through one of the blockages.  It was a shorter stay.  She came home again.

For a while after that she was doing better.  We returned to a reasonable quality of life.  It would take more than a little heart trouble to stop Mary Ann.  After a year and a half we even risked going on a week long trip by plane from Kansas to Tucson, Arizona for a retreat for older adults.  We had decided that we were not going to just sit at home and feel sorry for ourselves.  We chose to live as fully as possible given the circumstances.

I still blame the air quality on the plane.  Mary Ann was fine when we left the Kansas City airport but had some congestion when we arrived in Tucson.  By then we were using a wheelchair most of the time.  We joined in the activities, got to visit a wildlife center outside of Tucson.  As the week wore on, she was having some labored breathing.  It was March 10 of 2005. I called an ambulance to take her to the nearest hospital.  On the way, the dyskinetic movements that come with the Parkinson’s medicine were so bad that the tech in the back with her could not keep an IV in her arm.  Mary Ann was flailing around and almost flying off the gurney.

They sedated her when we got to the Emergency Room.  Then they took an X-ray.  When the ER doctor returned he said that all he could see what white where her lungs were supposed to be.  By that time she was completely unresponsive.  When I asked if I should call our children to fly into Tucson, he said yes.  The ER nurse confirmed that — so I did.  I will never forget the feelings I had as I sat alone in that ER room, knowing no one there, having been told she might not survive the night.  Mary Ann had been taken for some other test.  I am now living what I feared that night.

The Kids came, Lisa with baby Ashlyn in tow.  Mary Ann was so agitated that even with me there, they provided a hospital sitter to be in the room also.  Four days later, Mary Ann and I were on a plane home.  She had bounced back from that flirtation with death.

Within one day of a month later, the Ambulance came to out house in Kansas to take her to the hospital again.  She had had a stroke. It was April 9 of 2005. At first her speech was gone and her right arm was virtually useless.  It was not a bleed or a large clot, but a cluster stroke, plaque from her carotid artery broken into tiny pieces, lodged in a cluster in one part of her brain.  With a few weeks in the hospital, rehab, followed by outpatient therapy, she regained almost everything.  She was left with some spatial issues that reduced the control of her right hand making feeding herself more of an issue.

Mary Ann refused to give up.  We continued to have a reasonably good quality of existence in spite of the limitations.  The Volunteers and Mary Ann’s strength of will, kept our life on course.  Also by that time I had come to know a great deal about the diseases that had assaulted her and the medications used to treat them.  I was able to make helpful recommendations to the doctors and monitor her condition daily.  I think my advocacy for her with the medical professionals helped the quality of her life, until finally in the last weeks, nothing I did could stop the inevitable.

Before that inevitable day two months ago came, there was more of life to be lived.  That will come next.

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I think it was around 3am when the phone rang.  It was Roger.  Then he said it, “We just lost Wendy.”  All I could say was “What?!”  She was only in her 30’s with three young boys.  There had been no warning — heart related.  Wendy was uniquely gifted.  She could do many things and all of them well.  She was in the thick of the life of the congregation.  She taught part time at the Parochial school sponsored by our congregation and two others. 

I, of course, went to the hospital for a while to provide some support for Roger.  First thing in the morning I went to the school to help in any way I could with the Staff and Students.  The boys went to school there (the older two).   I remember as I was walking out of the office at the school, someone said something about a plane hitting a building in New York City.  I thought little of it since our attention was on what had happened here, on that September 11, 2001 morning.

I think it is fair to describe the next few days as surreal.  It was hard to get our minds around what was happening.  The magnitude of the 9-11 terrorist attack and the intensity of the grief over the loss of Wendy converged on our congregation.  It was hard to pull apart the various elements of what we were feeling.  One compounded the other.  In some odd, irrational way, it almost seemed as if Wendy had been one of the casualties of the attack. 

We had a service that evening to provide a place for people to come together in the face a national tragedy.  The experience in Oklahoma City after the bombing there helped inform what we did in response to 9-11.  Again, I urged that contacts be made with the homebound who were only seeing the television and not the world outside their house, the one that was still standing.  There were resources for families and children and teachers in the education programs at church as well as at the school.

Wendy’s funeral filled the church upstairs and downstairs.  In the face of two tragedies of such significance, the message of the church became clearer and more important.  The year that the congregation reached an average attendance of 650, was the calendar year following 9-11. 

It was during those years that Mary Ann had a dramatic decline.  After four years of controlled symptoms, our Medical Insurance carrier insisted that we switch from the KU Med Center clinic to a new local Neurologist if we expected them to cover her visits.  The new Neurologist had spent time training with the KU Clinic.  She was caring and competent.  She tried her best, but Mary Ann’s expression of Parkinson’s demanded more than she was able to give.   Oddly, the doctor admitted to Mary Ann at one point that she suspected she might have Parkinson’s herself.   By January of that year, Mary Ann was no longer able even to feed herself.  I think that was also in 2001. 

We decided that we would go back to KU Med Center even if we had to pay out of network costs.  The local Neurologist at the very same time wrote a referral to KU Med Center, realizing that she did could not find the right mix of meds to deal with Mary Ann’s symptoms.  Also at that moment, the Medical Insurance changed, again allowing the use of KU Med Center’s Parkinson’s clinic.

Mary Ann was not only unable to feed herself at that time, but she could not manage the bathroom without help.  She also struggled to keep from falling.  She could not be at home by herself.  I had a full time 60-70 hour per week job.  I was to young to be able to survive were I to retire.  We did not have enough income to be able to add paid Caregivers to cover the hours I worked.  The options dissipated like the morning dew when the sun comes out. 

After all the obvious options were gone, a new one emerged.   That is for the next post to this blog. 

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Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City.  Some of it may have been her unwillingness to accept that it was so.  Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.

It was very difficult to keep that information in since it had such a powerful presence in our lives.  Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly.  Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives.  If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.

The secret became especially difficult to keep when the symptoms began to become more visible.  She would not let me tell our best friends from KC with whom we even vacationed at times.  I can remember the evening she gave me permission to tell them.  We were vacationing together in New Braunfels, Texas.  Mary Ann stayed at the condo since she was tired.  The rest of us went to a Beer Garden in nearby Gruene.  We sat together at a table and I finally told them what they already knew, that she was sick.  I told them it was Parkinson’s.

It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was.  All of them were loving and caring to us as we tried to deal with it.

Mary Ann had worked with a couple of Temp Agencies when we first arrived.  After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency.  She worked something short of full time for the next six years there.  The people she worked with became her friends and support group.

Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster.  There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends.  I took Fridays off and tried to keep up with the house cleaning.  I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.

We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times.  The people in Oklahoma are some of the most gracious folks we have met.  The attitude there seems to be that people are accepted until they prove themselves unacceptable.  Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.

Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge.  We never found one!  We started with a fellow who was pleasant to talk with.  He prescribed the basic beginning dose of the standard medication, Sinamet.  It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk.  He asked if we thought the dosage should be changed in any way (yes, he asked us).

Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City.  They have a Parkinson’s Clinic with a national reputation.  We would drive up there, at first without telling anyone why we were going to KC.  As a result, we had access to the latest and best information about Parkinson’s treatments.  It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.

We looked until we found another Neurologist in OKC.  That was our worst experience.  He is the one who came into the exam room without ever looking at either of us.  He sat at a little table just inside the door, looking down at the chart.  When he talked to us, he never looked up.  It was actually very weird.  By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years.  It worked reasonably well, as is usual in the first stages of Parkinson’s.

The last time we went to him was more than I could tolerate.  He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body.  When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head.  By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet.  If the symptoms improve, it is most likely to be Parkinson’s.  Even I knew that.

By this time, Mary Ann’s symptoms were becoming more obvious.  After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem.  Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight.  Mary Ann never had tremors, the fast movements in a hand or fingers.  Tremors are often a symptom of Parkinson’s, but not always.  She did have the dyskinesias that come from many years of using the Sinamet.

One time when she was at work, she just slipped off her desk chair on account of those movements.  She hit her side on the corner of a two drawer file and broke some small ribs.  There was nothing other than pain medication that could be done until they just healed on their own.  Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.

After the horrible experience with the last Neurologist, we were at a loss as to what to do.  Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program.  It was brand new.  A local Neurologist was developing a team approach.  We applied and Mary Ann, of course, qualified.

She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her.  Tulsa is 90 miles from OKC.  I was doing full time ministry, trying to go back and forth.  Mary Ann hated being there, and I hated having her there.  What was especially frustrating was seeing how haphazard the treatment was.  Pills were often not given at the scheduled times. (the doctor’s schedule).  The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness.  Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet  competed with its absorption and reduced its effectiveness.  That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial.  I mentioned that the Neurologist in charge of the program.  She did not consider it an issue of any importance.

The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet.  A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements.  That was Mary Ann’s most difficult problem.

Mary Ann just could not stand staying there the whole three weeks.  She managed two weeks.  When she returned to OKC, it was apparent that she would not be able to handle returning to work.  She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.

During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives.  We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.

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Not one, but two murders in this post — but let me begin with the Call to the church in the Oklahoma City area.  The Call came a while before Christmas.  I asked for extra time so that I could consider it without Christmas looming.  There is no time to think when things are coming at such a frenetic pace during those weeks.

Even weighing the strong connection to the KC area and love for the people, it was time to move to a full Pastoral Ministry.  Lisa was a Senior in high school at the Lutheran High, Micah was in the 8th Grade at St. Peter’s Catholic school.  I could not take them out of school mid-year.

I accepted the Call and headed for Oklahoma City in February.  Mary Ann stayed in KC so that the Kids could finish at their respective schools.  Next to this last month, that was the most difficult five months in my life, and, I think, Mary Ann and the kids would say the same.

My last Sunday was January 18, 1987.  The Sunday happened to be a rare convergence of dated festivals and a Sunday.  It was the day designated as the Confession of St. Peter. I preached that day.  There was a farewell dinner scheduled shortly before that.  There were over 200 who indicated they would be there.  One of the worst snowstorms in the fifteen years hit that evening.  Almost 200 people came out for the farewell.

Leaving a congregation is excruciatingly painful.  I didn’t realize just how painful it would be.  I seem to be pretty naive when it comes to anticipating the intensity of pain.  I seem to be using the word “pain” an awful lot in this post, and in recent weeks.  What compouned the pain is that I made the choice to leave.  I have never doubted that it was the right choice, but one with consequences that are not all pleasant.

I lived with a family that became my family during that time.  John and Sherrie were truly brother and sister in Christ to me.  They are/were (Sherrie died later in my years there) the most Spiritual people I have ever known.  They lived and breathed the love of the Lord without ever presenting a hint of “holier than thou.”  They were warm and accepting to me.  They understood how hard the transition was for me, and they knew they could not do anything about that.

It was during that time that I discovered must how much I loved Mary Ann, Lisa and Micah.  One weekend, they flew to OKC for a visit.  I can still remember vividly standing in the airport by some chairs in a waiting area, watching the plane they were on take off to head back to KC.  I had then the same feeling I have had in my gut this month.  The thought of the possibility of losing them was intolerable.

A few weeks before the decision was made and I left for OKC, Lisa was on a trip to Florida, spending time with my Sister and Brother-in-Law at their condominium right on the beach on the Gulf side.  She had spent the last three and a half years with a group at the Lutheran High in Kansas City.  That group were the sort of friends who went out together in a cluster, enjoying each other’s company — all good kids.  At that time, her best friend was the Principal’s Daughter.  He had become a sort of extra Dad to Lisa while she was going to school there.

It happened while Lisa was in Florida.  Principal George was stabbed to death just outside the doors of the school.  Lisa came back to be with his Daughter, her best friend, their friends and classmates so that she could be a part of the community as together they dealt with the tragedy.  That story is more complex than appropriate for public sharing.  Lot’s of questions remain.

Then after I moved to Oklahoma City, separated from family, feeling very alone, in spite of the wonderful family with whom I was staying, it happened again.  I had bought an alarm clock from Skaggs, a Walgreen’s/CVS sort of place, just a few blocks from the church.  It was February 7.  I would be preaching my first sermon there the next day, February 8.

When I got home, I discovered that the alarm clock was faulty.  I went back to the Skaggs to return it.  As I stood at the counter just inside the doors to the store talking with the clerk, I heard a strange sound.  The doors opened and someone ran in right in front of me and hid behind the counter.  I smelled the gunpowder.  An estranged husband had just shot in the face his ex-wife right outside those doors.

I walked by to get to my car as she was dying in the arms of an EMT in the parking lot.  The estranged Husband was found some time later at a nearby lake, having taken his own life.

That was the beginning of my ministry in the Oklahoma City area.  I wondered what I had gotten myself into.

Lisa was working at a Dinner Playhouse in the Waldo area in Kansas City as her part time job while going to school.  She will have to correct my remembering about the cut.  I think it was a broken plate that caused the cut on her hand.  She had to go to the Emergency Room to get a number of stitches.  It was difficult for Lisa and hard on Mary Ann who had to deal with it by herself, while I was in OKC trying to focus on my ministry there.

Mary Ann had some tightness and pain in her left shoulder the fall before this.  It moved down her left arm to her hand.  The tests began.  One of them would be outlawed were it used as an interrogation tool.  It is called an EMG [Electromyography].  At that time (maybe still) there was a needle (or needles) stuck in her arm with electrical current going through them, testing the nerve activity.  She described it as torture.

There were other tests, all that came back negative.  She also was having some balance issues.  It was by a process of elimination that a clinical diagnosis was made.  There is no test that would give a definitive diagnosis.

I was in Oklahoma City, she was in Kansas City.  She phoned me.  The diagnosis was Parkinson’s Disease.  The vision of the old fellow shuffling along in the hallway outside my basement office years before when on my Vicarage (Internship) with a handkerchief in one hand catching the drool — that vision popped into my mind.  I never told Mary Ann about that vision.  Mary Ann needed me to be with her.  I needed to be with her.  The Kids needed for me to be there.  I was not.

This has been a difficult post to write.  Any one of those events would have been enough to make the transition very tough.  All of them together made it almost impossible to bear. I remember my feelings all to well as I was helpless to comfort the people I loved most.

All the while this was going on, I was in the midst of an exciting new beginning at a place filled with some of the most nurturing and affirming people I have ever known.  Everyone should have a chance to live in the heart of Oklahoma.  It is one of the best kept secrets in the nation.

Next will come the ministry at the church in the OKC area and our lives there.  I need a break for a post or two or three before the tragic event in Oklahoma City that had direct impact on our little congregation.  Barry Switzer comes first.  Google him if you don’t already know who he is.

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.

It is the name of a movie and what happened at our (my) house last night.  I set the stage in a way that would allow it to happen.  I needed for it to happen.  It changes nothing.  It just needed to get out.

After finishing writing last night, I did a few chores and then got out the box of letters I wrote Mary Ann.  I put on the CD that had brought me to tears months ago when we first realized it was time to call in Hospice.  I read a few of the letters.  Actually, the letters did not tap my emotions.  They are pretty boring.  I ramble on about Greek tests and singing groups and learning recitativs for someone who couldn’t sing the solos at the last minute.  Each letter so far, and I am sure all of them, end with declarations of love in as many different ways as I could figure out to say them.  I have read eight of the letters so far.  Understand, for three years, except for summers when we could see each other, I wrote her a letter every night.  (No wonder I have gotten into this blogging every night business.)

Remember, I was nineteen or twenty years old and very much in love.  They sound like something from a bad romantic movie.  The only redeeming element is that I really meant what I was saying: “I don’t know how to tell you just how much I love you and miss you.  I can hardly believe it myself.  I love you.”  Then another: “Even if you didn’t love me — I love you enough for both of us.”  I will spare you any more for now.

It was not the letters. Certainly the music lowered my defenses and helped me let go of my control.  I just pulled down a picture of the two of us from a year or two or three ago.  It is the one that was cropped for the obituary.  I looked and I remembered the indignity of it all.  I remembered what she endured looking from the outside in rather than from inside the struggle.  I could not tolerate the thought that she is gone.  I spoke out loud because I couldn’t not speak.  In a moment of self-pity, I asked “Why did you give her to me to love and then take her away.”  I was angry — not out of control angry, just angry.  “It’s not fair that she should have had to suffer so — she did nothing to deserve it.”

Please understand, I realize that God doesn’t like death and sickness any more than we do.  I realize that God understands death from the inside out and the outside in.  God didn’t wish for Mary Ann to suffer, for me to be in pain with her.  What God did was hang in there with us through it all, never letting go of us.  Understand also that God’s relationship with us is strong enough and intimate enough to allow anger to be a part of it.  I needed to be angry at that moment.  Read the Psalms some time and see just how many are laments spewing anger at the unfairness of life.  Pastor Mike addressed this matter at the funeral.

Noisy tears flowed.  The dam broke.  Every time I looked at her face and remembered, the tears flowed.  In an earlier post, I mentioned that I used to count how many times I had cried in my adult life.  The first time was after I got the phone call that my Dad had died.  I was 42 years old.  Until last January, I had not yet run out of fingers on one hand to count the times.  I have stopped counting and will never do so again.

I guess there was some part of me that still thought it was a sign of weakness for a man to cry.  I knew before and I know still more certainly now that crying, actually letting the pain in far enough to feel it, is an act of courage that is demanded if wholeness and healing will come.  Running away from it or pretending it isn’t there or encrusting it in some sort protective casing is hardly the path to strength of character and the ability to endure whatever comes.

There was an interesting coincidence at our Spiritual Formation group this morning.  The lesson in our discussion booklet for this morning was entirely devoted to the need to let go, to die, before we can rise to new life.  The last of the four discussion questions printed at the end of the readings was, “What role does the reality of death and the deaths of those you love play in your life?”  Talk about timing.

Today was a busy Wednesday, as they often have been for some reason.  It started with the Spiritual Formation Group on the deck.  While that was going on Landscaper Sheila was doing her final maintenance of the landscaping she put in this spring.  She will return in the fall to do some clean up and prepare it for winter.  I am on my own for the rest of the summer.  Those plantings are in great jeopardy!

In the mid-morning, Dave came over to get a couple of death certificates and obtain the signatures needed on a variety of forms for the financial issues following a death.  Then Kristie came over to do the monthly house cleaning.  Now the house is not only empty but empty and clean.

I did some overdue posting in the computer check register while she cleaned.  It will take a while to get my bearings in that arena.  Everything seems to be on course.  I have configured the online emails from the Caregiving Spouses of those with Lewy Body Dementia so that I have to go to the web site to read them.  As a result, the hours I have spent checking emails have pretty much been eliminated.  I just can’t read those emails at the moment.  It takes me right back to something from which I need a break for now.

I had leftovers from the funeral dinner for lunch and dinner.  Next I will start on all the containers that Lisa put in the freezer when food was coming in faster than we could eat it. It should be many weeks before it is necessary for me to exercise my culinary skills.

I decided it would be best to get out of the house for a while, so I made a quick run to pick up a couple of things.  One is a zippered cover for a pillow.  No amount of soaking in Oxy Clean or spraying with Spray and Wash is able to get the stains out.  Mary Ann was taking Plavix and Aspirin to thin her blood because of her stroke.  Often her gums or nose would bleed a little during the night.  The pillow is certainly clean, and now it looks that way also.

The house is becoming very neat and orderly and boring.  I still hope to at least get my office, which is a complete shambles, cleaned up.  That happening would be right up there with the Miracle of the Loaves and Fishes.  Actually, I suppose my problem is that I have the twelve baskets of leftovers and nowhere to put them.

Here are the ideas that I have seen so far for the title of a new blog to replace this one: newlifeemerging.com; calltocontemplation.com; buildingnewlife.com; next chapter; life after retirement; thecontinuinglife.com; my journey continues; life’s journey continues; a new role begins; continuing life’s pathway; making new memories — remembering the old; progressive pathways; pathways of personal progression; day by day; heading home; homeward bound; faith journal; moving on; stepping stones (to healing).

By the way, whatever it is, it needs to be in the .com format and checked with a site like godaddy.com to see if it is available or already in use.

Well, this day has come to an end.  As I mentioned to Son Micah, the challenge is to manage the pause and stop button on the video running in my mind of Mary Ann’s most difficult days including the last one, so that there will be minimal flooding from the broken dam.  Today was better.

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.

Lisa and the girls left about an hour ago.  What now?  There are plenty of things that need to be done.  That is not the issue.  There are thank you’s to be written. That will be very therapeutic for me.  The list of minor and major tasks is long.  At the moment I am doing a lot of easy, little things here at the house.

…It is now just me.  Schendel Pest Control Tom just found a huge nest outside the sun room and dispatched the ants.  There are still a few inside the house, but they are feasting on Tero, and if all goes well will be gone soon.

Sun Room contractor Jerry just called to begin work, hopefully, on putting the shade up on the deck.  I guess I am not going to be alone here today after all.  Tom and Jerry will have been over. Who knew?

I am experiencing what I have heard about from others hundreds of times.  It is hard concentrate.  It is hard to muster the stamina to do anything that takes any thought.   Getting out of the house to run errands sounds okay, but there are so many things that need to be done, running errands all day I suspect would get very frustrating.  I would be anxious to get back to the things that need to be done.

By the way, I am not (at least at the moment) whining about my situation.  I am just describing it.  There will, I am sure, be plenty of whining going on soon enough.

There was a large stack of cards in the mail again today, along with a packet from Thrivent (our church sponsored financial organization).  There was in that packet a CD of some songs that actually turned out to be helpful while I opened cards.  This is a time when simple truths, ones with which we get bored in good times or that slide into the back corner of our awareness, become very powerful.

Jerry needed help holding up the other end when he put up the shade on the deck.   That was a great distraction.  He is a talker too.  As soon as the sweat dries, I will begin running some errands.

…The errands included taking a death certificate to the bank.  All that needed to be done was get it into the records there.  I took back to her the tools that Occupational Therapist Karen had given Mary Ann and trained her to use, so that Karen could give them to other patients.  I stopped by the florist, Flowers by Bill, to thank him for doing such a wonderful job of arranging very fresh flowers that have lasted well.  He is the one who would provide much more than $10 worth of flowers when I came by to get them for Mary Ann.  I told him that I may be coming in on occasion to do the same, this time to enjoy myself and then remember.  I dropped glasses off at our eye doctor’s office for the Lion’s Club.  Looking at two of the four pairs was a frightening reminder of Mary Ann’s battle.  They were so scratched from falling on her face that the lenses were no longer usable.  We had had to replace them.

I guess I said it last night, but today it has been painfully clear that remembering her with so many abilities stolen from her is almost too much to bear.  When I think back to the challenges I had as a Caregiver, I can certainly remember the times I reached the limit of my ability to cope, but I remember with no feelings of distress. I don’t feel in any way sorry that I had to do the things that were required.  I would do it again without hesitation.  I have been trying to keep them out of my mind, the images of her sitting in that chair unable to do almost anything, trying to get up, falling, struggling to turn in bed, hating when I had to feed her.  My emotions are too raw to continue this train of thought.

The shade is now up on the back deck.  If the sun is out in the morning, the Spiritual Formation Group will get to try it out.  If rain comes, we can now sit inside the house in full view of the waterfall, listening to the rain on the speaker that brings in the outdoor sounds.  Since I am now alone here, there is no one to disturb.  Damn, I hate this!

Again, I am all right, given the circumstances.  It is very appropriate that I hate this and that my emotions are sometimes raw.  I would be in trouble if I didn’t recognize my feelings and allow them to see the light of day.  It is from that process that new life begins to emerge.  I also have moments of feeling the freedom that I have now that there are no longer the constant demands.  I am grateful that Mary Ann is whole again.  I would not want her back just so that I could feel better.  I just miss her.

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.

Someone came to the door yesterday afternoon asking if I knew where the next door neighbors had gone on their trip.  I didn’t know they were gone.  Then he explained what he had just found.  The back door was standing open and there were a dozen or so beer cans on the back patio.  The cans were unopened.

He explained that he had painted the cement patio on Friday and was checking to be sure that it was dry and to see if it needed a second coat.  The neighbors had been on a short trip to Texas.  Just days before their sump pump had stopped workings during a heavy rain storm.  Their basement was flooded.  For three days the cleaners were working, even one day while they were gone.

Today I found out that the thieves took the cash and jewelry.  They probably left in a hurry when the case of beer they decided to take apparently broke open on the patio as they were leaving.  The patio is no more than 25 feet from my bedroom window.  I heard nothing.  It is certainly unnerving.

It was death certificate day.  I picked them up at the funeral home.  We hardly need a piece of paper with a County Seal on it to tell us what has happened.  They will now be used to trigger a variety of transactions, most of which have no tangible impact other than keeping records straight on some computers somewhere.  There was not much available in the way of insurance since she was uninsurable due to the Parkinson’s Diagnosis twenty three years ago.  All the follow up tasks after a death at least have the side effect of keeping a person busy.

Today’s outing included taking Mary Ann’s clothing to the Rescue Mission thrift store. It needed to be done, but it was hard to do.  There was a sinking feeling as we helped unload them.  Other than a number of her well-worn favorites, the cookbooks went to the Friends of the Library to be sold in the annual book sale.  Mary Ann loved the library.  One of the professions that would have been satisfying to her was Librarian.  She loved old book stores, especially one in the Brookside area of Kansas City, Missouri.

On the way, I picked up from the repair shop the watch that my Mom had taken me out to buy near the end of my Senior Year in high school.   It is a Girard Perregaux for which she paid $85 in 1961.  The jeweler said that if a comparable could be found now it would be closer to$1500. It has a self-winding weight in it.  Still works. I don’t really care about the value.  It is not for sale.  It is for Son Micah to have.  I wear the gold watch my Dad received many decades ago when he retired.  It actually is of comparable value.  I guess old can be good sometimes.  That is good to hear.

Talking about “old,” I am now in contact with a classmate from the Second Grade, Miss Miller’s class.  That was a memorable year.  I got sick after eating a piece of peach pie.  Before it was over, my Dad plunked me down on the examination table at the doctor’s office and declared that I had appendicitis.  Dad had lost a 5 year old son to peritonitis on Christmas Eve, and almost lost another son when his appendix burst on the operating table.   He was not about to lose another son.  (The very oldest boy their first child had died shortly after birth.)  Sure enough, I ended up on the operating table having my inflamed appendix removed later that same day.

While in the hospital recuperating, it was discovered that I had Rheumatic Fever.  I missed the second half of the Second Grade year (four months).  Miss Miller spent the summer going over the school work I had missed so that I could go on to the next grade.  That diagnosis was a dominant part of my life until I graduated from high school.

On the way back from our errands, we made the promised stop at G’s for some frozen custard in memory of Grandma.  Not only were the treats as good as expected, one of my favorite young people from the congregation dished it up for us.  She is actually sort of annoying, she is a very good athlete, very smart, very pretty but not snooty about it, committed to helping others and making a difference for good, and she is a hopeless smart-aleck — all of that and sweet and caring too.  Talk about annoying.  She even admitted to reading this blog sometimes.  You know who you are!  Even after I became a Geezer I found myself enjoying the bits of contact I had with Youth in the congregation.  I spent the first 18 years of my ministry in service especially to Youth.

Someone just moved in two houses away.  She came over to introduce herself to a couple of us talking outside.  Soon there were four of us, two who had lost spouses two years ago.  As we were talking I soon realized that for the last many years, I would not have been able to stay and talk, but would have rushed into the house to check on Mary Ann.  It will be hard to get used to this new reality.

Today we stopped by church to get the list of gifts given to Faith in memory of Mary Ann.  I was surprised at how many gifts had come in.  I have started thinking about how what comes in should be used.  It would please Mary Ann very much to be able to provide that tangible evidence of appreciation of all the years of caring for her by so many Volunteers from Faith.

Early tomorrow is the time that Lisa and the girls leave on their way back home to Kentucky.  It is hard to imagine getting through these events without Lisa and Micah’s help and support.  Like it or not, tomorrow will be the first day by myself in the house.  It is a new reality — can’t go back.  Right now I am running on adrenalin. The crash has to come.  When it does, I will get through it.  The two who lost their spouses two years ago were emphatic about what is the hardest thing, the loneliness. No one can fix that, even by trying to keep the surviving spouse busy.  We just have to deal with it and survive it.

For now, the odiferous ants have arrived.  It is an annual invasion.  The Tero is out and they are gathering, eating it and, hopefully, taking it to the nest to kill more. Pest Controller Tom will be by tomorrow to do some more serious work on them.  Hopefully they will soon leave the premises. I am certainly not interested in their company, even if I do get lonely.

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.

I realize that Quilty is not a word, but in our house it is.  I suppose it should be referred to as a quilted jacket.  We called it the Quilty Jacket.  She wore it as often as the weather would allow in the last few years.  Then there are her Poo pants — as in Winnie, not poop.  They are pajama bottoms so worn, with numerous holes that one good tug would probably pull them apart in any number of places.

When I pulled the jacket out of the closet, I knew I could not part with it.  I can’t count how many times I helped her on with that jacket as we headed out the door.  The rest of the clothing is in plastic bags destined for the thrift store or the Rescue Mission.  It has been a very emotional day, at least on the inside.  Once, I sighed loudly while standing in an almost empty closet and from the bedroom came, “Are you okay?”  This had to be hard on Daughter Lisa too.  I would not have wanted to do it without her.

The challenge was not just the emotional part of it but the challenge of deciding what to do with what.  As others who have been in my position will confirm, decisions are very difficult to make.  The simplest task can seem overwhelming.

There were dresser drawers to clean out.  We finally found her underwear!  The funeral home asked for undergarments with the dress we were to bring over for them as they prepared her.  In her sock and underclothes drawer, we finally found a pair that she had never worn nor would she have done so.  I vaguely remembered getting them out of that drawer and putting them away when she switched to disposables a couple of years ago.  She had a huge number of socks in the drawer, resulting in the need for room.  Her socks were a signature item.  There were varied colors and themes, holiday socks, seasonal socks, polka-dots, animals.  We found the underwear in a plastic bag hanging from a hanger buried in between other hanging clothing.

I knew it would be and it is very hard to look in that closet.  I have spread out the few things I have on both sides to create the illusion that it is full.  It is not working. Actually, I decided to get rid of all things in the closet that no longer fit or are too badly worn to wear any longer.  Getting rid of my clothes was easy.  All I had to do was look at the neck size on the shirts to determine that I could no longer wear them.  Who knew that a neck could grow in later years.  It is an odd genetic quirk, having nothing to do with eating habits and the lack of exercise.  The waists on pairs of pants had shrunk.  Closets shrink clothes.  It is a known fact.  It is sort of like Radon, only not dangerous to people — unless, of course, you try too hard to button one of the shirts and strangle yourself.

I suspect that Monday some time will be the first encounter with the house all to myself, the beginning of whatever will come in life next.  The Kids are doing exactly what is needed and when.  They cannot do for me what I need to do to make it through this.  I cannot do for them what they need to do to get through this.  We can love and support one another, doing what is in our power to do.

I will get out the quilty jacket and remember and, I suspect, do some crying.  Tears do not come easily to me, but it will be important to allow that release when the need comes.  I have decided to get the box of letters Mary Ann saved from forty-eight years ago.  I have not looked at them since I wrote them.  I am sure I will be embarrassed by them.  I was so much in love with her that, if I remember correctly, I even wrote sappy poetry on occasion.  I am surprised she didn’t run away screaming after reading them.

I made an observation to Lisa today contrasting the time of caring for Mary Ann, especially the last months, with the time we are in now.  Oddly, it seems harder to think now about what we went through than it was to go through it.  Even when we were in the thick of the worst of it, I just had to do stuff.  Doing things gave me the feeling that I could make a difference of some sort.  Even if what I did seemed to have little effect, at least I had something I could do.  Now, I have the images of what we went through.  They seem more horrifying when thinking about them than they seemed when I was doing them.  When I was doing stuff, it was certainly hard, sometimes very messy, but I was just doing whatever needed to be done.

Grieving is hard work, harder than caregiving.  There is nothing more I can do for her.  I can only be sad for myself that she is not here.  I certainly do not need to be sad for her now that she is free from the illness.  I can hurt for what she went through, but I cannot change it.  My job now is to figure out what I can do.  I can live the life that I am being given.  I can make plans and do things that will honor her memory, care for my family, and become the most fulfilled and healthy person I can be with God’s help and the resources available to me.  I have absolutely no idea what those plans will emerge and where they will take me.  Whatever they are, they will have to take into account a household income that was diminished by about 40% when I retired, and another 20% now.  With a little creativity and a willingness to live simply, the plans will emerge.

I continue to welcome suggestions for a new blog address that will reflect what my life is about as the next months and years unfold.

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.