September 12, 2010

No More Secrets — Open Door Policy

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , |
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When the Parkinson’s was first diagnosed, Mary Ann insisted on complete secrecy.  No family (even parents and siblings) could know, no friends, certainly no parishioners — only the Kids and I were to privy to the diagnosis.  That insistence continued for five years.  She allowed a couple of exceptions for me so that I would have somewhere to go to process what we were going through.  Actually, I don’t remember if their Mom gave Lisa and Micah permission to share with anyone.  They may comment on that. 

Mary Ann had always been an extremely private person.  She didn’t think her personal life was anyone else’s business.  After she was diagnosed, she did not want people to be looking at her as if there was something wrong with her.  She certainly did not want people feeling sorry for her and treating her as a sick person.  I have shared before how hard that five years was on all of us. 

Finally, the secret could no longer be kept since there were too many outward signs of the disease.  When we moved here in 1996 Mary Ann’s Parkinson’s was public information among the Leadership of the congregation.  The secret was out from the first conversation by phone with the Call Committee.  In fact, by that time, Mary Ann’s Parkinson’s was in the form that I filled out for the file in the District office, the form that was sent to the congregation as soon as my name was put on their list of Candidates. 

It is here that the story of one gift that came on account of the Parkinson’s begins.  Mary Ann received some special attention from a group of ladies in the congregation.  She was welcomed in a way that made her feel accepted and included immediately.  I did not see all the dynamics of that inclusion, but I was thrilled at its effect on Mary Ann.  She quickly developed a group of friends in the congregation.  While my being the Pastor brought us to the place and provided the setting, that group became her very own friends, not acquaintances of the Pastor’s Wife. 

Before going any further, I have to say that Mary Ann had developed connections when we were in the early years in Kansas City.  She often claimed (falsely) that people were friends with her because I was the Pastor.  The truth is, I was the more boring one and she was always the more interesting personality of the two of us.  I am not particularly thrilled with that assessment, but it is just the way it was. 

In the parish here, the Parkinson’s created a need.  The need was for help.  When Margaret began and Carol took over the task of scheduling, the Volunteers began coming.  At first it was an adjustment, especially for Mary Ann, to have people coming into the house and staying with her.  First of all, her combination of strength of will and denial, caused her to resist any admission of the need for people to be there.  She seemed to manage to fall in a way that did not do damage to her, so she was not convinced of the need.  While watching the knives waving this way and that from the dyskinesias when she was preparing food, terror entered the heart of the watcher.  She was convinced that she would not slice herself. 

Since many of the first Volunteers were already friends, she tolerated the lack of privacy surprisingly well.  In fact it shocked me that she did not fight harder against the idea.  As the number of Volunteers expanded, new friendships were added.  Since often there was some need being met in another room when the next Volunteer arrived, the custom was to announce her arrival and just walk in. 

The result was that our house had an open door policy.  It was almost comical some Wednesdays when Bath Aide Zandra was here, Kristie had come to clean, it was crossover time when two Volunteers were here, one arriving and the other getting ready to leave, and the Spiritual Formation Group (four of us) were lingering for a moment of conversation before leaving after our meeting.  Rather than feeling as if folks were intruding into our lives, it was a pleasant gathering of friendly people. 

One gift that came was that Mary Ann opened herself to all sorts of relationships.  She had a wealth of friends and knew that they were her friends, not simply members of the congregation of which I was Pastor.  I cannot know what would have happened without the Parkinson’s, but it is clear that from its presence in our lives, the gift of openness to relationships grew.   

As always, we certainly would not have chosen the mechanism, but there were some consequences of its presence that brought blessing to our lives.

 

September 10, 2010

Let’s Make a Deal.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , |
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That, Thomas Merton suggests, is the model of love that has predominated in our culture.  I have needs, you have needs, let’s make a deal.  We put ourselves on the market until the deal is made.  Then, even once the deal is made, there is often still an eye out for a better deal. 

Mary Ann taught me what it means to love someone.  That is one of the gifts we received through the addition of Parkinson’s to our family circle.  Of course we would never have chosen the Parkinson’s as the textbook, but we were grateful for the learning.  The feelings that drew us together were intense and exciting and overwhelming, at least to me — I cannot speak for Mary Ann.  They are not what constitute love.  The feelings that first draw us to the one we love we are convinced are pure and selfless.  We would do anything for her/him.  Like it or not, those feelings are about us, me.  We love the feelings we have when we are first in love.  We are in love with love. 

The truth is, those feelings are the way God has wired us so that we will be drawn to one another.  They help create the setting in which love can grow.  Love is not a deal in which we get what we need or want.  Merton says: “But the plain truth is this: love is not a matter of getting what you want.  Quite the contrary.  The insistence on always having what you want, on always being satisfied on always being fulfilled, makes love impossible.  To love you have to climb out of the cradle, where everyting is “getting,” and grow up to the maturity of giving, without concern for getting anything special in return  Love is not a deal, it is a sacrifice. 

As feisty as Mary Ann was, as strong-willed, she understood how to give the kind of love that involves some self-sacrifice.  It took the challenges created by the Parkinson’s to teach me how to give love meaningfully.  It is very easy to fall into the illusion that a gesture at a birthday or anniversary or Valentine’s Day is what love is about, saying I love you every once in a while is enough.  We are expressing the feelings we have for the one we love.  Love certainly includes feelings, but the feelings are not the love.  They are part of what drives it.  They are a natural consequence of love lived.  It is the doing of love, the living of love, acts of love that nurture the feelings, not the other way around. 

In our toughest times, demanding her willingness to allow me into the most basic and personal dimensions of her daily living and my willingness to do whatever was needed, we grew the closest, the love grew the most.  We didn’t just talk about it, or make lovely and romantic gestures as if that was the substance of our love, we did it.  When I helped her off the bed into the wheelchair, there might be a lingering embrace as we moved in tandem.  We were by no means always sweet and tender with one another.  We were real people, ordinary people, flawed people, making the best of a bad situation.  I learned the most because I had the farthest to travel to learn it.  But I did learn how to love, really love.  Mary Ann and the Parkinson’s taught me.  I am so sorry she had to suffer through the onslaught of the Parkinson’s.  I am not sorry for the gift we received, a love far beyond anything we could have imagined 48 years ago when we first fell in love and over 44 years ago when we promised to love one another until death would part us. 

Merton again: “When people are truly in love, they experience far more than just a mutual need for each other’s company and consolation.  In their relation with each other they become different people:  they are more than their everyday selves, more alive, more understanding, more enduring, and seemingly more endowed.  They are made over into new beings.  They are transformed by the power of their love.”

It is that kind of love that God is.  God is the source, the Cross is the delivery system, our circumstances are simply the setting.

 

September 7, 2010

Why Mary Ann?

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , |
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Pastor Mike began by barging right into that question.   It has to be asked.   That issue stirred in Mike’s gut as he prepared for his message at Mary Ann’s funeral here.  I started the Memorial message in Aurora that way also.  Mike immediately reviewed the common answers, all seeming to diminish the sheer horror of what she went through.  The popular answers sometimes make God seem very arbitrary and callous to human pain — as if He were just playing with us, or teaching us lessons. 

“Jesus wept.”  Remember that passage, the shortest verse in the Bible?  “My God, my God, why have you forsaken me!”  Apparently, God understands human pain fully, experientially.  Jesus’ tears and His scream at God were not pretense.  What Mary Ann went through cannot be diminished by any of the answers we give to that question, “why.” 

The question is a search for whom to blame.  Some suggest that everything that happens is God’s will.  If that were the case, the Biblical concept of Sin would not exist.  Things happen that do not please God.  That is what the Cross was about, addressing the painful reality that God’s will is not done.  The Good News is that the pain and suffering that comes to good and bad alike, do not have to be the last word.  The Cross has trumped it.

For Mary Ann and me, that meant that we did not have to waste our precious days arguing with God, blaming God, obsessed with answering the question, “why.”  Instead we could draw strength from the One who stole from the pain and suffering its power to destroy us.  God has the last word.  That word is life.  In spite of the horror of what she was going through, we could engage life fully. 

Because we had access to a quality of life that transcends the struggles, that has no arbitrary limit placed on it by death, it is possible now to look back and celebrate the gifts that came in spite of and even on account of the struggles Mary Ann went through. 

I was convinced when we were going through our days. and I am still convinced that we were living life with an intensity and awareness and quality that exceeded any other time in our lives.  Nothing we did was trivial.   It was about human survival.  Lots of time was spent dealing with the most basic of human needs.  It was as if daily life ceased to be background music that we barely noticed as the hours went by.  Life became the music and we were the instrumentalists.  We were not watching life go by, we were living it.  What a profound gift! 

One reason that I am now so intent on living every day fully and with meaning, engaging life actively as a participant rather than a spectator is that we lived the last almost twenty-four years of our lives doing something of fundamental value, beyond measure.  At one of our recent Grief Support group meetings a couple of us who had done full time care of our Loved Ones observed that it was very difficult for us to find something worth doing now that the care-giving was done, something that measured up to what we had had the privilege of doing with our Spouses for months or years before they died. 

The gift that was given to us is a vivid awareness of the value of every moment of life, every day that is being given to us, when it is being given.  Mary Ann had always understood better than I, that the moment we are in is the one we need to experience fully.  I was  a slow learner, but in the end, I caught on.  I lament how often I hesitated to join in the life-filled moment’s activity.  There was always something else more important coming next.  Then life would be full.  Mary Ann and the harsh onslaught of the Parkinson’s taught me, gave me a gift that I am only now unwrapping fully — the Present. 

Enough for now.  There is more to come.

 

August 31, 2010

Mary Ann’s Last Hurrah! Our Last Attempt at Traveling.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , |
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Less than a year ago, Sunday, October 25th, we got into the van and headed out on our last adventure traveling together.  Our first stop was the 60th birthday party of friend John in the Oklahoma City area.  I had not given any indication that we might be coming, so it was a complete surprise.  He had not seen Mary Ann in fourteen years.  We stayed for a few hours, had a great time, and then headed for a motel that was on the way to our next stop.

That stop was a three night, four day stay at what I have no doubt is one of the very best Bed and Breakfast’s in the nation.  It has been featured in Midwest Living and easily measures up to the PR on it.  The name is Lookout Point, Lakeside Inn, located in Hot Springs, Arkansas.  (www.lookoutpointinn.com)  I have described it more than once in earlier posts. 

There are twelve rooms and a condo from which to choose.  Every room has a balcony or patio overlooking a quiet bay of Lake Hamilton.  There is a secuded feel to it because of how it is situated at the edge of the bay.  The gardens are unbelievable, lush, full of color in both spring and fall, with a large fountain feeding a stream and waterfalls that run through the gardens down to the lake.  One of the rooms is fully handicapped accessible.  We had stayed there a time or two before this. 

The breakfast is always a gourmet meal and the 4pm wine, cheese and freshly baked goods are always a treat, especially on Chocolate Wednesday.  There is original art work everywhere.  Hot Springs is one of the top ranked small cities in the nation in the fine arts.  Owners, Ray and Kristie are gracious hosts.  Kristie is an Ordained Pastor in the United Methodist Church who remains active doing weddings and retreats among other things.  The library there includes a section on Spiritual Formation.  By the way, the library, a separate reading room with a fireplace and a huge sunroom, along with the dining room and large patio eating area fill out the areas available for relaxation and renewal. 

Mary Ann was doing well during our time there.  We got out for ice cream at least once.  We toured some of the first class Art Galleries in the downtown area.  We drove up a winding road right in town, a road that took us up to an overlook providing a breathtaking view extending many miles.  Our last evening was spent sitting in a protected area of the outdoor patio enjoying a gentle rain. 

On our previous trip to Lookout Point, Mary Ann decided that we should head to a place she thought was nearby at which people can search for diamonds and keep what they find.  It was very hot when we were there last.  Mary Ann used the wheel chair almost exclusively.  I was picturing trying to dig around in the hot sun while at the same time having to move the wheel chair through gravel.  When Kristie told us how far away it was, I was much relieved that it would be too far to manage. 

Unfortunately, Kristie mentioned an alternative.  It was a quartz mine in easy driving distance.  It was not long before Mary Ann was sitting in her wheel chair next to a huge mound of mud, while I dug out promising hunks for her to look at and trying to find quartz crystals.  Mary Ann baked in the sun and I sweated in the mud until we managed to find a few little crystals and one big one.  Finally, Mary Ann said she needed to get out of the sun and we called our quartz crystal mining operation to an end.  We brought back a bag of chunks of mud that have crystals in them.  That was almost two years ago, and the bag of hardened hunks of mud is still in the garage waiting to be cleaned. 

On this trip, gratefully,  Mary Ann did not ask to go to the quartz mine.  I think she had baked long enough the last time.  The weather would not have allowed it anyway this time.  It was just a good trip, even with the rain.  We both enjoyed  it in spite of the physical challenges.

On the way back home, we stopped overnight in Eureka Springs.  By the time we arrived at the motel there, the gentle rain had become not so gentle, just about washing Arkansas away.  It poured longer and harder than I can ever remember experiencing before.  In the morning, we discovered that the breakfast that came with the room was being served in a separate building in the lower level.  There was no elevator and a huge flight of cement stairs between us and the food.  I went down to check on the breakfast to see if it would be worth the effort to try to get Mary Ann to it.  There was a very large dining area with long tables laden with all sorts of  breakfast foods, including hot out of the oven Quiches of various kinds. 

It was too good a layout to just try to bring up a couple of morsels to the motel room.  We decided to  try to get Mary Ann down the stairs and into the dining room.  She stood up at the top of the first section of stairs while I moved the wheelchair to the first landing.  Then I went back up and held her tightly as we moved down the stairs.  Remember, people with Parkinson’s can negotiate stairs better than level areas.  The problem, of course, was the issue of the Orthostatic Hypotension that caused her to faint after a time of standing or walking.  Since the last visit to my Brother’s home, Mary Ann had been walking without fainting.  We had increased a medicine (Midodrine) that helped keep her blood pressure up, but often way above safe levels. 

We made the first landing, where she sat for a bit.  Then she stood up, I carried the wheelchair to the bottom of the next section of stairs, came back up and held her tightly again as we completed the descent.  We both ate well, but I kept thinking about how foolish it might have been to come down the steps, since there would have to be a return trip.  Finally, we were the last, and the lady in charge needed to close things up.  While we would have made it back up those stairs one way or another, the lady in charge took us through the kitchen and out another door to the bottom of a steep drive for delivery trucks. 

The drive was so steep it was almost impossible for me to keep my footing and push the chair up to the top.  God is good!  A delivery person arrived just at that time.  Between the two of us, we managed to push her to the top of the drive.  When it came to food, there was not much that would stop us. 

We headed back home.  Mary Ann continued to do well.  That evening, October 30, Mary Ann was fine.  We got up the next morning and she seemed all right.  Later in the day, after she had a long nap, we headed out in the car.  I stopped for coffee.  When I got back to the car, she was not feeling well.  I gave her a nitro pill and headed for the next stop at the store while the pill had a chance to work.  After I got out of the store, she still did not feel well.  She described the feeling as a heaviness in her chest.  That was all I needed to hear.  We stopped at the house to get a couple of things, and I took her right to the Emergency Room.  As suspected, it was congestive heart failure. 

She recieved wonderful care, but the decline was dramatic.  She was there only a few days, but she never regained the ground she lost.  It was the beginning of the last leg of her journey here, our time together.  That journey is recounted in great detail in the posts written almost every day from then until the end.  I am not ready or able to review those months in detail yet. 

We did the best with what we had.  Mary Ann squeezed the most she could out of every day.  She never gave up until she decided it was time to leave.  Then she just stopped eating food and drinking any liquids.  For 23.5 years she pushed to the very edge of the limits the Parkinson’s put on her and then stepped over those limits, beyond what could reasonably be expected of her.  I did everything I could think of and was able to do to provide the best care, the best quality of life within my power to give.   I think we both dealt with what came our way, yes imperfectly, but with dignity and courage, living every day with meaning and purpose.  The strength to do so did not come from us, but the One who made us and never gave up on us.  The One who sits at table with Mary Ann now.   I miss her more than words can say.

 

August 25, 2010

She said, “Let’s be Honest, We’re Bored Silly!”

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
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“How is retirement going?”  the Pastor asked as we were leaving after worshiping at the evening service at  a Lutheran Church in Kansas City a few months into retirement.  I told him that it seemed to be going pretty well, better than I had expected it to be going.  When we got in the car after that interaction, Mary Ann said, “Let’s be honest.  This is not working.  We are both bored silly!” 

First of all, it was a shock to me that so many words came out so clearly.  Mary Ann was never very forthcoming with conversation and especially by that time in the disease process.  She just blurted it out.  By that time I had begun to feel as if things actually were going pretty well.  What I inferred (rightly or wrongly) from what she said was that it was not working for her and she was bored silly.  In fairness, she may have been assuming that I was bored with our situation after moving from many hours away from home working at my job to being at the house pretty much all day long every day. 

It certainly was boring for her.  She couldn’t do any of the things she had done in the past for entertainment other than watch television.  We had been heading out in the car very often to do one thing or the other so that we would not be cloistered in the house, but apparently that was not doing the job.  Since we were together all the time, there was no news to share that the other didn’t already know. 

At first, it sort of hurt my feelings that having just retired early to do full time care of Mary Ann, there seemed to be no appreciation.   For one thing, I needed to accept the fact that I could not fix the situation — I could not do enough to replace all that she was missing.  One thought that came to mind  was trying to increase the visits from Volunteers so that Mary Ann would have someone other than me to talk with (listen to) more often during the week. 

It happened that there were enough of the working folks who could only Volunteer evenings that Scheduler Mary was able to accommodate that need.  We added two evenings a week as options when Volunteers were available.  The Volunteers brought with them their presence and their experiences and their stories.  Sometimes (especially on NCIS days) there was a lot of just sitting together and watching television.  Often Volunteers shared what was going on at work or in their family or extended family, thereby enlarging Mary Ann’s world. 

Sometimes a Volunteer (daytime or evening) would read to her from a novel they brought out each time she visited.  There were occasional outings by Volunteers who happened to be willing and physically able to help Mary Ann in and out of the car as well as handling the wheelchair.  There were trips to Ensley Gardens, a world class garden on the other side of town.  Volunteers would sometimes do food preparation, bringing Mary Ann into the kitchen with them.  In earlier years, Mary Ann had often challenged Volunteers to a game of Scrabble.  She played well and showed no mercy. 

I suppose the greatest challenge was trying to keep Mary Ann’s environment a stimulating one for her.  I felt inadequate to the task.  I didn’t have the creativity or the stamina to do it myself, but with the help of the Volunteers, she had a reasonably good quality of life within the limits placed by the Parkinson’s Disease.  Until the last few months, we got out as often as I could think of  something to do that we could manage, if only to the Library or the grocery store.  Right up until the last hospitalization last October 31st, we were often on the road.  We had just returned from our last major trip the day before, October 30th. 

Descriptions of the last two major trips with come in subsequent 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 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 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 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.

 

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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