August 18, 2010

31 Second Grade Girls Need to Use the Bathroom!

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They are standing outside the bathroom door with their little legs crossed.  Maybe that is exaggerating a bit, but not by much.  Two of our day trips included Granddaughter Chloe.  On the first one, we headed out to the Rolling Hills Zoo outside of Salina.  We spent many hours on the road in doing that round trip.  It was worth it.  The Zoo is very large with spacious areas for the animals.  The habitats are very nicely done, carefully mimicking as much as possible the environment that would be natural to the animals in it. 

It was easy to negotiate.  There was a tram with a spot for the wheel chair.  The paths were wide asphalt walkways that were very user friendly, except for the hills that were rolling up and down between displays.   Chloe loved it.  Mary Ann was not so much of a zoo person, but she seemed to enjoy it too.  It was a warm, but pleasant day.  They had ice cream in the concession area.   Enough said.

On that trip we did not have time to use the other half of our ticket, the one for the large building with displays of stuffed animals, and animated people in appropriate environments.  We had heard from others who had been there that the displays were worth seeing.   We made a second trip out there with Chloe later in the summer of that same year.  It was on the second trip that Mary Ann needed to use the bathroom after we had spent an hour or so walking around the displays.  The women’s rest room was huge.  There was a long wall lined with stalls.  Clearly they were prepared for large groups. 

When we entered the women’s rest room, after getting permission from the woman at the ticket counter, Chloe stayed at the door to keep people out while I helped Mary Ann.  It turned out to be a major intestinal event.  A great deal of time was needed to accomplish the task.  I decided to go out and tell Chloe that it would be a long time and check to see if there was anyone who needed to use the restroom.  There was — more than anyone, lots of anyones.   It was an entire busload of Second Graders, all in need of using the bathroom.  The girls were huddled outside the door. 

I decided to ask Chloe if she would just stand outside of the handicapped stall Mary Ann was using while the girls used the restroom.  Mary Ann just sat there until they were all done and the teacher had given the all clear for me to go back in and help her finish. 

It was the bathroom needs that complicated travel, but after surviving the busload of Second Graders, we were somewhat emboldened to head out in the car. 

Over the years we had made regular trips to Northern Illinois where we both grew up and had family.   As the disease became more difficult to manage, we were not always able to make the ten hour trip.  The last time we made that trip, we broke it up by staying in a motel and taking two days to do it.  My side of the family had gatherings every year or every two years around my Mother’s birthday, even after she was gone.  MaryAnn’s side of the family did not get together often for major reunions since two of her brothers were deceased and the third Brother had alienated himself from the family.  Whenever possible we would get together with Sisters-in-Law and as many Nieces and Nephews as could come.  We enjoyed those gatherings very much, as well as the reunions with my Brothers and Sisters and their families. 

One special treat was getting together with Mary Ann’s three friends from Fifth Grade on.  Sometimes we would get together with spouses also.  It was always wonderfully entertaining to see and hear the four of them together.   Mary Ann laughed more in a few hours with them than she did in the year or years in between the visits.  One way or another, we would be sure that the four of them had some time without any of the Spouses.  I don’t know what they talked about, but that is most certainly in the “better not to know” category. 

The three of them came to visit Mary Ann here a number of times also.  All of us recognized the power of healing those visits had for Mary Ann.  No matter how much she had declined, when they came, some sort of switch flipped and she perked up, became alert and communicative.  The last time they visited was after she had been enrolled in Hospice.  I described that visit in an earlier post.  We all laughed.  She had the closest I had seen to a belly laugh while we  sat at the Baskin & Robbins. 

Whatever toll the Parkinson’s took, it did not take away family and friends.  Travel was not easy, but as long as we could manage it, we headed out.  Some were day trips, some were long trips.  There will be more to come in the next few posts. 

 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 14, 2010

My Notebook has a $100 Bill in it! It’s Real Money!

Posted by PeterT under Daily Challenges, Help from Others, Life History, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , |
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How is this for a retreat: Pay $50 for a couple to attend and then discover a $100 dollar bill in one of your notebooks.  I am not making this up.  I had never heard of these retreats when the mailing came.  It was pretty much too good to be true.  When I got the letter, I did not know about the $100 bill that would be in the notebook I received that first evening, but the rest of what was described in the letter was already too good to be true.  It actually was true, it was as good as it was too good to be — even better!

The location for the retreat was Big Cedar Lodge owned by the Bass Pro Shops.  It is located on Table Rock Lake, south of Branson, Missouri.  It is advertised as a Luxurious vacation spot.  They are not lying!   Remember the $50 registration fee?  The retreat was five nights and six days long, April 7-12, 2002.  When we finally drove in, we couldn’t believe our eyes.  Rolling hills spread out in front of us for hundreds of acres at the edge of the lake where all sorts of rustic buildings surrounded by gardens nestled among the trees and carefully arranged landscaping greeted us.  We registered and got our keys.  It took us a long time to find our room — ROOM? – it was a free standing cabin.  Inside was a large living area (with a large fire place), dining area (a large basket of fruit and packaged foods greeted us), full kitchen, king-sized bed, a bath area the size of the living room in our current townhome (of course with a huge jacuzzi tube).  The cabin had a deck area with chairs and a gas grill for outdoor cooking (not that we would have to do any).  The little card on the back of the door listed the room rate as $350 per night.  Clearly, there had been a much better rate negotiated.   

The retreats are called Grace Place Retreats.  They were begun by Dr. John Eckrich (M.D.).  He had been treating Lutheran Professional Church Workers in his practice for many years.  It struck him how stressed so many were.  He had a concern for the health of the church and realized that healthy church workers would be important for the church to remain healthy.  He decided to do something about it.  When the Lutheran Deaconness Hospital was sold some years before that, the proceeds became a benevolent fund that could be approached with grant proposals.  The front of the brochure we received in 2002 describes the Grace Place Retreats as: “A Retreat and Lifestyle Program Offering Integrated Health Skills to Lutheran Pastors and Spouses.”  It has expanded since then to all flavors of church workers.  Almost all of the costs of the retreat were underwritten by the Grant and donations to the Grace Place Program.

Then there was the food!  Big Cedar had five restaurants.  Our meals were catered in the area where our sessions were held.  There was not an ordinary meal to be eaten.  We were never disappointed, always impressed with the quality of the fare.  When we opened our notebooks and discovered the $100 bill, we were instructed to use it while we were there to treat ourselves.  Who are we not to follow instructions?  Mary Ann got a spa treatment of some sort and I got a massage.  Mary Ann was using a wheelchair at the time, and was always accommodated by the staff and the other participants on the retreat.  It was a good experience for her. 

Each morning there was a prayer, meditation, exercise time before the sessions started.  It was called Lutherans in Movement and Meditation.  After breakfast we always practiced Lectio Divina as a group.  That discipline involves reading the same Scripture passage two or three times listening differently each time with silence afterward to let the message settle in and take hold.  One of the days we held a juice fast, followed by breaking the fast with a light meal of bread and fruit.  Evenings included Faith Exploration activities.   One evening we went to a local church for Evening Prayer. 

Sessions focused on a variety of topics aimed at promoting good physical and mental health.  Some were on dealing with stress, looking at our various roles in life.  There was a very pointed session that addressed our marital health and habits.  The four themes addressed were: the priority of marriage, the permanence of marriage, the oneness of marriage, and the openness of marriage.  We were paired with another couple for the retreat so that we could have small group discussions on the various topics.  There was one afternoon that we were to take a sheet of instructions and spend the entire time in silent meditation.  That was the day of the juice fast.  One of the sessions had a leader from our national church body who talked about money management and planning for the future. 

One evening included heading into Branson to see the Jim Stafford show.  We both enjoyed the show (to our surprise).  One afternoon we had a tour of Dogwood Canyon.  It is a sort of private wildlife preserve that was very impressive.  We rode a wagon along a creek filled with visible trout (it was crystal clear) and through an area where buffalo and elk were out in the open.  In a sense, they were the observers and we were the mammals inside a protected area (the wagon).  Some of them came over very close to check us out.  They were huge!   On the afternoon for recreational activities, a few of us rented a pontoon boat and toured the lake on our own. 

Then there was the last evening’s reception and banquet.  We were treated like royalty to a multi-course meal in a banquet room that had the look of an Elizabethan castle banquet room.  There were gourmet appetizers, a lavish meal, each course accompanied by the appropriate libations. 

Dr. John accomplished the goal of giving us a refreshing moment of being affirmed and appreciated for who we were and what we were doing.  We felt valued.  The sessions brought attention to our self-care, physically and spiritually, and sent us away with tools for incorporating better habits into our patterns of living.  Mary Ann and I certainly gained from it.  Our life together was challenging with the Parkinson’s taking its toll on us.  That week lifted our spirits and brought a wonderful respite from the press of daily struggles.  I am very grateful to Dr. John and the Grace Place Retreats for caring enough to commit time an energy and resources to such a nurturing ministry.  It has provided a memory worth keeping.   

 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, 2010

The Bed and Breakfast Period

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Therapeutic Activities, Uncategorized | Tags: , , , , |
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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.

 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 10, 2010

We Chose to Live!

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , |
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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.

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 6, 2010

“We Just Lost Wendy.”

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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. 

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 4, 2010

Singleness of Purpose

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There was never any doubt.  Use all the resources at our disposal to intersect with peoples’ lives in a way that brings healing — healing at the very core of their being, where their lives connect with the One Who breathes life into them and loves them powerfully enough to make them new every day, up to and including their last day.

The task was to assess the resources and become the catalyst for the energies of many gifted people combining to fulfill that purpose.  All the pieces were in place.  Pastor John before me had seen to that.  He steered the congregation through the years of national controversy, kept eyes clearly on the purpose.  He affirmed the strengths of those he served, encouraged them to grow and build ministries.  When it came time to let go of folks so that another location could serve still more people with the same singleness of purpose in a mission congregation, it happened with his blessing.  He led the way as the room made by those who left was filled again by others.  He led the congregation through a major building program that released a dimension of the worshiping community that had been limited by space.  A large open area provided space for people to connect and engage with one another, build each other up as they sought out those who were not yet connected with the healing power. 

My Call was to build on the groundwork that had been laid.  Pastor John had health issues that led him to conclude that it was time for someone else to build on what he had accomplished in almost thirty years of ministry.  It was a joy to follow someone so much respected.  It helps the person who follows, when there is a respect for the role.  The elements of the task had been made clear to me before I came: build a Staff to meet the needs of a congregation of that size, build on the relational style of ministry that the building project made possible, build the financial base so that the number of lives touched with healing could increase. 

As the years went by, we increased the options for worship from two morning services to three morning servics and one evening service.  Education time expanded from one session to two on Sunday morning, and soon after, a thriving Wednesday education program.  We moved from two Lead Staff to four Lead Staff.  The Support Staff of Sharon and Carolyn provided the infrastructure of the place, solid and competent and committed to the same singleness of purpose.  Linda M added remarkable gifts to the mix.  Rebecca could do anything and do it well.  Linda L. expanded the music ministry to the extent that it exceeded any reasonable expectations for choir, vocal and instrumental ensembles made up of Volunteers.  The average attendance grew from 450 in 1995 or 1996 to 650 in the year 2002.  While I am grateful to have been the Senior Pastor during that time, I do not take responsibility for the growth.  Hopefully, my ministry helped rather than hindered growth, but many other circumstances played into it.  Pastor John had left a healthy congregation of people who were willing take leadership, who said “Why not?” when new ideas emerged.  When I arrived, Director of Christian Education Jim was doing a yeoman’s job of keeping the congregation healthy.  He was recognized as one of the best in the nation serving in the role of DCE.  There was a state of the art Youth ministry.  Director of Children’s Ministry Marilyn moved into a full time position providing consistently high quality programming, bringing out the best in Volunteers.  There was a state of the art Children’s Ministry.  Pastor Nate brought a smile and a level of competence that impressed all of us from the moment he arrived.  He shaped the Contemporary worship and the small group ministry of the congregation.  Administrator Chris had such a remarkable combination of skills that it was almost scary.   Pastor Nate was followed by Pastor Dave who brought his gifts to the same singleminded purpose.  DCE Audrey came after Jim left, bringing with her a presence and a competence unparalleled anywhere in the nation.  Young added her Worship and Music leadership to the life of the congregation.  After Chris left, Don brought with him to the Administrative position the respect of everyone in the congregation, leadership in many arenas and the wisdom to handle all of it with grace, as well as a work ethic beyond belief. 

Three congregations grew in our effectiveness working together to provide a full, Kindergarten through Eighth Grade Parochial School.  Music and Sports and Academics were done exceedingly well, with the message of God’s healing love in Christ laced through it all.  Early childhood in a program connected with the school as well as a program at the church thrived.   

I could never have imagined that I would have the privilege of serving in such a remarkable place.  It has been a remarkable place not on account of anything other than that singleness of purpose.  The resource of the building was multiplied by using space more than once a week, for multiple purposes.  The Staff actually functioned as a team, not just in name.  We all stayed on the same page and supported one another, not simply working independently each in our silo, but working together to seek the common goal of bringing that deep healing to people very much in need of it. 

There were certainly struggles along the way.  Nothing is easy to do.  We were not afraid of the struggles.  We jumped right in and worked through whatever it was.  We always came out stronger on the other side.  We tended to deal with things rather than let them fester and wait until they boiled over.  I suppose I may just want to have been a part of an effective ministry, but by the Grace of God, it appeared to work. 

The next post on this blog will describe the morning that changed a nation, a morning that included a deeply personal loss to that congregation. 

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 1, 2010

Finally, a Neurologist Who Understands!

Posted by PeterT under Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , |
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We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s.  KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away.   We could hardly believe it. 

Mary Ann’s symptoms had worsened as the medication regimen set up in the hospital in Tulsa before we moved to Kansas simply could not handle them.  In the very first appointment with the KU Med Parkinson’s Department Neurologist, Dr. Koller, he assessed her situation and added a medicine called Permax.  Permax is dopamine agonist. It works by stimulating dopamine receptors in the brain.  It makes the basic medicine, Sinamet, more effective. 

Within one month, the time it took to titrate the Permax to its therapeutic dose, Mary Ann’s symptoms were reduced to being barely noticeable.  That level of functionality remained for almost four years.  It was as close to a miracle as we have experienced. 

In addition, a group of ladies in the congregation welcomed Mary Ann and took a special interest in her welfare.  She developed friendships that ultimately grew beyond the fact that she was the wife of the Pastor.  Connie, wife of Pastor John who had retired from that congregation was also someone who chose not to be defined simply by the role.  She had set a good pattern for Mary Ann to follow. 

I found much comfort in seeing Mary Ann develop those friendships and experience new relationships.  She became much less intensely private and finally admitted that it was true when I told her “they like you better than me.”  She had always in the past contended that the church folks were only connected to her through my ministry.   That had changed with the folks at the congregation I was serving here in Kansas.  Also she realized that she had friends from former congregations who remained friends with her long after we had left those parishes.  They were truly her friends.  In spite of the Parkinson’s, the dozen or so years here before I retired seemed to be some of the best for her in some ways.   

We had found a townhome in a shared maintenance subdivision that was the right size (less than half the size of our home in OKC) with everything on one floor.   It had come on the market the day before.  We got in the first offer at full list price.  The realtor realized that we were very fortunate to get into a maintenance free area at that price.  It turned out to be a very wise choice.

Since Mary Ann could no longer work, eventually there was a small amount of disability income that she was awarded.  It helped us alter the interior of the home so that it was more user-friendly for Mary Ann.  Friends enlarged doorways for us.  A contractor who was a member of the congregation built a roll-in shower and extended the bathroom a bit to allow it to accommodate a wheelchair comfortably in anticipation of that need arising.

We replaced the carpet with one that did not resist her feet moving when they shuffled.  It was a firm enough weave to allow a wheelchair or walker to move easily.  Parishioners did the labor on finishing the downstairs so that live-in help could stay there if that was needed.  There were aesthetically pleasing grab bars that look like and can be used as towel racks placed strategically in the bathrooms, along with tall stools. 

We found a couple of portable electronic doorbell systems that we put together so that there were four buttons spread throughout the places where Mary Ann spent her time.  She could buzz me whenever she needed help.  All the various tools provided an environment that was comfortable and welcoming.  We made a very functional living environment for ourselves — with the help of a lot of parishioners.  We are in debt to all of them for what they have done to help us and care for us. 

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 28, 2010

Here We Go Again!

Posted by PeterT under Daily Challenges, Family, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , |
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We had just finished making some major changes to our home, knocking out a wall, putting in a new floor, decorating it creatively.  Mary Ann’s sense of color and elegant simplicity was reflected in the results.

Realizing what was coming with Mary Ann’s condition, I had concluded that I would finish out my ministry in OKC and care for Mary Ann there.  The parish was a comfortable fit for me on account of the warmth and graciousness of the people.   The congregation’s place in the polity of the church and my views were a good match.

Then came the contact from Kansas.  It came without warning.  My attitude was that I did not refuse an overture before there was a formal request (Call, in our jargon) to come and serve there.  My understanding of the process was that if it was from God, it would be foolish to sabotage the process.  If it was not, that would become clear soon enough.

There was a phone interview.  Rather than the on site interview that usually followed as the next step, there was a formal Call to come and serve the congregation in East Central Kansas (between KState and KU — of great significance in Kansas).

It was the end of 1995, Christmas coming.  The decision could not be processed meaningfully in the intensity of that season of the year.  I asked for time to think; it was granted.

There are no definitive steps that carry a person to an obvious decision.  The process includes all sorts of elements, including family considerations.  The center of the process, however, is discerning which direction the One in charge of such things is tugging.

Of course the various practical elements needed to be identified and weighed as to their significant.  There were pros and cons to be listed.  I have never found that list to provide a clear answer to the question, which way should I go.  The congregation in Kansas was twice the size with the same size staff we had in OKC.  I had not served in a larger congregation although I did grow up in one that size.  There was a school.  The congregation I served on my Internship (Vicarage) had a school.  We had chosen to send our children to Parochial Schools and valued their experiences there.  The Kansas congregation knew of Mary Ann’s situation but seemed not to hesitate in spite of that awareness.  The Kansas congregation was only a little more than an hour from KU Med Center, the only place we had found anyone who seemed to be capable of handling Mary Ann’s complex version of Early Onset Parkinson’s.  Our children by that time were done with college, so they would not be impacted one way or another by our staying or going.

The ministry in Oklahoma City had been intense, culminating in the OKC Bombing and the loss of Member Lee.  We had just begun a very successful midweek program called Logos.  We had a new and very talented Director of Christian Education, Chris.  We had variety in worship, with wonderful musicians for both traditional and contemporary liturgies.  The Early Childhood programs were thriving.  I had grown close to the membership especially through so many opportunities for doing Pastoral Care.  Actually, I had grown close to some of the Youth, who made a poignant “good-bye Pastor Pete” video that touched my heart.  There was some frustration that the congregation was not growing, but slowly declining.  I was concerned that what I brought to the congregation seemed not to be changing that pattern, even though we had a thriving ministry.

It was a very difficult decision, but finally it seemed as if rather than looking at concluding my ministry in OKC, there was a tugging to the Kansas congregation.  The fit there was also very good.  It felt as if I had been in training over my career up to that point for precisely what the Kansas congregation was asking me to do.

It was right at that point that Mary Ann took a turn for the worse and ended up in the inpatient program in Tulsa, as the new Neurologist tried to find the right combination of medications.

For Mary Ann, the move back to Kansas seemed to have a little of the feel of coming home.  We had both fallen in love with Kansas City.  It felt good to be close again.

There was one dynamic in particular that also made living only a little over an hour away from Kansas City seem like coming home.  When we first moved to Kansas City in 1972 to serve the parish there, we connected with a group of folks who had babies the same year.  Three other couples had boy babies, as well as having an older girl.  They had known one another from college and before.  One couple went to school together as children.  That group graciously included us and ultimately we felt almost like family.  While we were in OKC we vacationed together with that KC Crew in Texas (when I was able to reveal to them Mary Ann’s Parkinson’s diagnosis).  We had gone on a cruise in the Caribbean with one of the couples.  We celebrated birthdays together.

That group was expanded by a number of folks from that congregation with whom we had developed a friendship that continued after we left Kansas City, a friendship that transcended the role as Pastor.  There is a whole community of folks from there whom we value, with whom we have a loving and caring relationship.  Mary Ann was deeply loved by many.  Serving the new parish, we were close enough to allow those relationships to continue and to grow.

Mary Ann’s health, as well as the weight of a large congregation has not allowed the freedom to return to OKC to celebrate those relationships.  Since Mary Ann’s and my families are in Northern Illinois, any time and energy for travel took us north rather than south.  Travel was never easy and got harder as the years went by.  It is my hope that I will now be able to renew and celebrate the connection to so many people I value who were in the congregation when I was serving it there.  I still remember the tears streaming down my cheeks the last Sunday I served Communion to them, saying each name as my emotions would allow.  The organist, Shelbie, was playing her improvisation on “When in our Music God is Glorified” and leading the congregation in singing that hymn during that time.

Life has brought many separations.  The feelings of pain that come with those separations are signs of the deep value and meaning of the relationships that emerged.  On that account I embrace the pain and celebrate it.

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 26, 2010

Roman Nose Rescue

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , |
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It was called Roman Nose State Park, named after an Indian Chief who had a Roman nose. I didn’t make that up.  Below you will find a bio on Henry Roman Nose.

I call it a rescue.  That is probably a little dramatic, but there is some truth in it.  Just days after I arrived in OKC to begin serving the parish in a suburb, the funerals started.  A number of the leading members of the congregation during my first few weeks there died.  The intense Pastoral care began.  That congregation taught me about Christian community, actually caring for others.  I did funerals for older adults, teen agers, babies, some via natural causes, some accidents, some violent deaths.  I still cherish a Pastoral stole given to me by a family who lost little Hillary just before she was due.

Doing Pastoral Care demands being on call 24/7 year round.  It was the most taxing and the most satisfying of the ministries in my portfolio.  One year there were a cluster of four funerals and a wedding in the span of two weeks including Christmas and New Year’s Day (the Groom chose that day so that he could remember their anniversary).  Without the addition of those Pastoral Care tasks, the Christmas season stretches most Pastors right up to the limit of their strength and stamina.

The combination of work demands and concern for what Mary Ann had to deal with took a toll.  Here is where Roman Nose comes into the picture.  One October, a Pastors’ Conference was approaching.  In the Oklahoma District the clergy were generally a pretty relaxed and congenial crew.  There would be time to relax and enjoy the Park, Roman Nose State Park.  The need for Pastoral Care intervened as a family lost a Loved One.  My hope was always to provide a healing presence to the degree possible.

Realizing that I would miss the break at the conference, I called to see if I could still get the group rate and just go on a Personal Retreat during the two days following the Conference.  The congregation Leadership fully supported that option.  I spent two days walking and reading and sitting and climbing and sitting and walking and reading all over the hills and valleys and bluffs of Roman Nose State Park.  I climbed over fences and through tangled brush in gullies.  I checked out the “healing tree” inside a protective fenced area, a place sacred to the Cheyenne who had lived there.

The place was a place of healing for me.  I can still picture the view as I sat at the very top of one of the taller hills, overlooking two small lakes.  A powerful Oklahoma wind was blowing in my face.  The sun was bright, the sky was crystal clear, the air crisp and fresh.  I felt what I would come to feel many times thereafter as I continued to go on Personal Retreats, relishing the solitude.  I felt whole, an intentional creation of a Someone who was providing me at that moment with the breath of life.  There was no distance between me and that Someone.

I had found great strength in Spiritual Formation activities during the years in the Kansas City area.  The Rescue at Roman Nose opened a new chapter in that Spiritual Formation.

Then came an experience that drew John and I together, finding strength in a regular time of Spiritual partnering and prayer as he ministered to his wife Sherrie through the last leg of her journey here.  I talked about Mary Ann and my journey and he talked about his and Sherrie’s.  The strength and courage of Sherrie became a source of strength for an entire congregation.  When I visited her, there would be a circle of three or four, maybe six or eight people in their living room.  She gave infinitely more than she received from all of us who gathered.  My ministry was profoundly impacted by Sherrie and John.

I can’t remember how I found out about it, but I am grateful that I did.  When we began taking Youth on Confirmation Retreats, DCE John and I took them a place called St. Francis of the Woods.  I have described it in great detail in earlier posts.  It has become a place of respite and Spiritual Renewal for me.  When I first went on a Personal Retreat there, the suggested contribution for a day and night’s stay in a two bedroom fully furnished cabin was $6.  There would be a loaf of home made bread waiting each time I arrived for a retreat.

Most of the times I went, I stayed two nights and walked for part of one day, a full day and part of a third day.  I read and walked and sat and did all the things I had done at Roman Nose.  The Orthodox Chapel, the woods and fields, 500 acres of working farm provided a rich environment for Spiritual Renewal.  Each time went I encountered that same healing recognition of being the intentional creation of Someone who chooses that I exist.

During my last two years in ministry in the OKC area, I attended two Spiritual Formation Groups (one each year) that followed the Shalem format.  The series was led by a local Pastor and Counselor who had been trained in the approach.  It involved a time of silent meditation, a time of journaling, and time for each person to share as they felt appropriate.

The Oklahoma years were an important time in providing a lab for learning to do Pastoral Care in a meaningful way, and providing a pattern of Spiritual Formation that provided the resources necessary to deal with the Bombing and Lee’s death as well as all that life had yet in store for Mary Ann and me.

Addendum:

Chief Roman Nose lived in this rugged canyon from 1887 until he died there in 1917. He was born in 1856 and given the name Woquini meaning “Hook Nose”. He grew to manhood within a hostile environment involving many Cheyenne raiding parties. In 1875 all warring Cheyennes returned to the agency at Darlington. Here he was arrested and sent to Ft. Marion in St. Augustine, Florida where he learned to speak, read and write the English language. He was then moved to an Institute in Virginia. Here he accepted the Christian faith and was baptized Henry Caruthers Roman Nose. His name Henry came from Richard Henry Pratt, the commander of the fort in St. Augustine. His name Caruthers came from Mrs. Horace Caruthers, his devoted teacher and friend in Florida. He learned tinsmith at a boarding school in Pennsylvania before returning to his homeland in 1881. Roman Nose discovered much had changed during the six years he had been away. Traditional Indian ways were almost nonexistent. White domination permeated all aspects of Indian life. Slowly he became disillusioned with what the whites offered. Roman Nose eventually spurned the white society. He left the agency and took his family to live in what is now Roman Nose State Park.

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 22, 2010

Life with Parkinson’s in OKC

Posted by PeterT under Daily Challenges, Information on Parkinson's, Life History, Meaningful Caregiving | Tags: , , , , , , , |
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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.

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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