August 23, 2010

World’s Fattest Cat

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , |
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Maybe not, but darn close.  One of Mary Ann’s challenges after the stroke was negotiating the utensils she ate with.  Getting food on to the fork or spoon and where is was supposed to go was not an easy thing.  How much we take for granted.  We don’t give a second thought to the matter of getting food into our mouth unless we are using chop sticks or trying to eat peas.  For Mary Ann, just eating a few bits of food could be a major challenge. 

To help with the problem, I got a couple of thick plastic plates from Munn’s Medical Supply.  The plates were called Inner Lip Plates (a trademarked name).  They were just that, plates with about a half inch high lip around the center part of the plate.  They provided an edge tall enough to push the food against it allowing the fork or spoon to get under it without pushing it off on to the table. 

After a year or two of using those plates, it dawned on me that we ought to be able to get plates that we could all use when we ate together with the Kids here.  We had on occasion purchased pieces of pottery from Jepson pottery that had an outlet about 45 minutes away.  His studio was only an hour or so away from us in the other direction. 

We had gone for an outing a couple of times and stopped at his Studio.  Actually, we discovered where it was located when we used the GPS on one of our ice cream runs to Emporia (over an hour away) and we drove right by Harveyville, Kansas on the way.  When we were at the studio, I saw some chili bowls that seemed a practical alternative when Mary Ann was eating soup or ice cream.  The sides seemed to be shaped in a way that might make it easier for her.  She picked out some colors that were very nice, she was very talented in the use of color. 

The Fat Cat actually was the fattest cat by far that I have ever seen in my life.  It owned the floor of the Jepson Studio.  It was friendly and not at all hesitant to engage anyone willing to scratch an ear or pet his gigantic back.  I think the answer was something like 27 pounds when I asked how much he weighed. 

We headed to the Jepson Studio again, this time with one of the plastic plates to use as a template.  He made a ceramic plate with the lip, in the colors Mary Ann had chosen.  It was just the ticket.  He made five more so that we could have six adults using the same plates, with no “special” plate for Mary Ann.  They are beautiful.  He made some high sided bowls that work even better than the chili bowls.  The plates and bowls were heavy enough that we did not need to use the piece of non-slip Dycem to keep her plate from sliding around. 

I have written about this in an earlier post.  I include it here as I review the various outings we took, adding quality to our days in spite of the limitations of the Parkinson’s. 

We enjoyed the trips out to Harveyville, but certainly liked best arriving at the final destination at Braum’s in Emporia where we had Pecan Caramel Fudge Sundaes.  Other times we picked up Friend and Thursday Volunteer Jeanne (once including Volunteer Coordinator/Friend Mary) to head out for a ride that took us to Harveyville and then through the Flint Hills to Alma.  A walk up ice cream shop had opened there after a while, so there was extra motivation to go that direction. 

One way or another, we were determined to get out of the house and so as much as we could while we could.  Mary Ann needed to eat plenty of calories, especially after she began losing weight last summer.  Whatever health issues might be associated with ice cream, they were trumped by the need for a little pleasure in a life that did not offer many. 

 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 21, 2010

A Ten Hour Trip in Three Minutes

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , |
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Our travels took us first to Greenville, South Carolina when Lisa moved there, then met Denis and they married.  Needless to say, those trips were taken on a plane.  When they moved to Louisville, Kentucky, we could drive there.  It was at least ten hours for us to make the trip, but we could do it.  There was Interstate from within blocks of our house here to within blocks of their house there.  By that time we had dealt with the life-threatening pneumonia after the plane trip to Tucson, so we gave up on traveling by air. 

Then something remarkable happened that shortened the ten hour trip to three minutes.  It went something like this: Denis said to Lisa, “Why don’t we move to Topeka to help out your parents for a couple of years until your Dad retires.”  I don’t know if those were the exact words, but that was the gist of it.  Lisa called.   Mary Ann was ready for them to come.  I wanted them to be sure not to disrupt their lives and careers without thinking it through carefully.  Our goal in raising our children was that they have the best life possible.  They thought about it and did it.  It was their choice to make.  What a gift it was to us. 

Within weeks, Lisa, Denis, Abigail and Ashlyn were in our downstairs, heading out regularly to look at houses.  They found one three minutes away.   Denis looked for work locally, while continuing to work for his employer in Louisville, traveling some, doing much of his work at the computer.   Denis did so well from here in Kansas that his boss wondered if he shouldn’t move here.  The job continued all two years. 

During that time Lisa and the girls came to the house before I left for work two days of the week.  She took over scheduling the weekday Volunteers for the other days.  She and the girls would take Mary Ann to their house until late afternoon when I joined the family for supper at their home.  After supper, I took Mary Ann back to our house, where often there was another Volunteer who had  been scheduled by Mary for the time I was at an evening meeting.  Of course, there were many other times that Mary Ann would stay with Lisa and the girls or they would come to the house.   Between Mary, who scheduled evenings and weekends (weddings, retreats), Edie who scheduled Sunday mornings (after an early shift by a paid home companion from an agency), Jeanne who came on Thursdays, and Lisa dealing with daytimes, I was able to continue to fulfill my responsibilities as the Senior Pastor of a large and very active congregation.  Lisa’s presence in town, with help from Jeanne and Mary, even allowed me to once or twice a year to have a three day overnight retreat at St. Francis of the Woods Spiritual Renewal Center in Northern Oklahoma. 

Son Micah, Becky and Chloe had moved from three hours away to one hour away not many years before this.   He came over, especially when there was a major Saturday commitment that took me from the house.  During those two years, Mary Ann had the joy of all her Children and Grandchildren nearby.  She spent much time with Lisa and the girls because of my work schedule.  Lisa would often include her in craft activities and food preparation.  Even with all the limitations, Mary Ann had a good quality of life for most of her years. 

Needless to say, it was a sad day when around the time of my retirement, Denis, Lisa and the girls moved back to the Louisville.  The agreement at Denis’s work had been for the time away to be two years only.  Denis also has a huge family (he is the youngest of ten children) who are all clustered very near Louisville.   Lisa, Denis and the girls have a wonderful community of support there. 

We returned to making trips to Louisville for as long as we could travel.  After a while the stairs in their house were too much for Mary Ann to handle, so the last time we visited, we stayed in an extended stay motel.  That worked well.  The last trip there was less than a year ago.  I will say more about that and some other travels in the next posts on this blog site.   

 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 18, 2010

31 Second Grade Girls Need to Use the Bathroom!

Posted by PeterT under Daily Challenges, Family, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , |
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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

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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 8, 2010

Mary Ann: The Energizer Bunny!

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

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.”

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

 

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