September 14, 2010

Mary Ann’s Gift to a Congregation

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , |
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The package was pretty ugly — Parkinson’s Disease, but the gift was beautiful.  Actually, God gave the gift.  Actually the gift was already there, Mary Ann’s Parkinson’s provided a tool for opening the package, pulling out the gift and letting people see it. 

Sometimes harsh judgments are made about churches and church folks.  There are the caricatures of people who attend church regularly as hypocrites and self-righteous, harsh, judgmental and unloving people.  Of course all those things are true to a certain extent, just as they are true of the general population, whether they happen to go to church or not. 

What actually has been so in my experience with congregations, ones I have served in forty years of ministry and many I have heard about from fellow clergy is exactly the opposite.  I have seen true community in action in my years in the ministry.  By true community, I mean people who are connected in a way that frees them to express that connection in action — people who help one another. 

Community was expressed in a former congregation by surrounding a handicapped member with support in every way, functioning as family for her.  When the bombing in Oklahoma City took one of the members of that congregation, her husband was surrounded with loving and caring actions.  When the bombing happened, I saw first hand an entire city express community, as crime ceased for a time, people came together to support one another, doing anything and everything they could to help those suffering, to support the ones who were doing the hands on rescue work.

The congregation I served the last twelve and a half years in my role as Pastor of a congregation had always expressed community in one way or another.  People visited and cared for those who were going through difficult times, especially due to health or aging.  The gift that came with Mary Ann’s Parkinson’s was an opportunity, an opportunity to go public with those expressions of community. 

Mary Ann’s circumstances provided some very clearly identifiable needs.  The needs were concrete.  I could not continue to serve as Pastor of the congregation without those needs being filled.  The response was a natural one for people who understood and lived in community with one another, quietly going about the business of supporting one another in times of need.  My vantage point may have skewed my view of reality, but it seemed to me that Mary Ann’s and my needs, so public, and the response to them, helped crystallize the self-image of the congregation.  What had always been so gained a higher profile and became visible.   That visibility became a witness to the poeple in the congregation and others who learned about it. 

I think the truth of the matter is that people in community with one another find much satisfaction in helping each other if they can figure out what to do that will actually help.  People surrounded our household with the basic needs of companionship for Mary Ann with all that demanded in terms of help with personal needs and whatever came up.  There was sometimes food brought over, grocery shopping done when we were homebound or Mary Ann was hospitalized.  There were sometimes basic household needs covered, chores done, ironing done.  Margaret, Carol (single-handedly for over six years), Mary, Edie, Daughter Lisa, all who coordinated  clusters of Volunteers, gave them instructions on what to do, answered their questions.  A free online scheduler just for that purpose helped organize times and tasks.  It is available at no charge to any individual who needs it: www.lotsahelpinghands.com

The specific gift Mary Ann gave the congregation was opening herself to allowing people into her life to help her.  Community can’t be experienced fully without people’s willingness to allow themselves to become vulnerable to others.  There is a risk when allowing people to help.  Will you become indebted to them?  How will you pay them back?  If you don’t pay them back, will they somehow own a little piece of you?  We simply had no choice.  There was so much help that there was no way we could ever repay all the people.  We occasionally made small symbolic efforts and saying thank you.  Mary Ann enjoyed doing an open house every once in a while, Volunteers helping with it.  She sometimes made or designed token gifts intended to say thank you.  There was just no way to do enough.  We simply had to allow the help with no possibility of ever repaying or saying enough thank you’s. 

The good news is that people helped because they chose to do so.  They helped because they have been wired by their Creator to do so.  They helped because there was meaning and satisfaction and fulfillment in doing so.  By helping, they actually had a part in the Pastoral ministry to the congregation.   Because they were doing what they were doing I could do what I was Called to do as my part in the community. 

Mary Ann’s Parkinson’s freed the true community that already existed to float to the surface and become more visible, defining the congregation in its own eyes and the eyes of those who heard about it.   

By making these observations about the gifts that came into our lives and the lives of many others on account of the Parkinson’s, I am in no way lessening the horror of what Mary Ann went through.  We would not wish that struggle on anyone.  It was not a good thing.  It was a very ugly disease that stole from Mary Ann everything she had enjoyed doing with her hands and her sharp, creative mind.  In spite of that, God brought some good gifts to her, to me, to a congregation and to our family.  More about that in later posts.

 

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.

 

September 2, 2010

Enrollment in Hospice Brings Many Last Good-bye’s

Posted by PeterT under Daily Challenges, Family, Hospice, Life History, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , |
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In a former post I reflected on the power of the word “Hospice.”  When the neurologist suggested it, we pursued that option.  It fit our intentions for how we would travel the last leg of our journey together.  Enrolling in Hospice and then seeing her looking almost comatose one Sunday morning after an increase in the Seroquel (in an attempt to manage the hallucinations) combined to finally break the dam on the tears, a dam that had been holding them back for years.  I sat in the car at the Lake on that cold morning, listening to Celtic Woman Lisa Kelly sing, weeping loudly and long.  

It had finally sunk in.  There was a part of me that somehow thought we would just keep death at bay for years to come.  Mary Ann had bounced back from so many hits, any one of which would have taken a person with less grit and strength of will.  That morning, the denial was breeched.  That denial had allowed us to live a fairly normal existence in very difficult circumstances.  The truth is that Mary Ann never let go of the denial until she chose to stop eating and drinking.  I returned to that denial, comforting myself with the knowledge that some in the Lewy Body Dementia Spouse Caregivers online support group had been in hospice for as many as three years (maybe longer).   My denial didn’t begin to crumble again until the same time as Mary Ann’s.  Of course, I knew intellectually what was afoot, but my gut was not influenced by what I knew in my mind. 

Sending out the word that Mary Ann was now enrolled in Hospice, had the effect of moving friends to come and spend time with her.  Some of our Kansas City Crew of close friends came by and spent the better part of a day.  We have decades of history together, and stories to tell from that history.  As always we had a good time together. 

Friends Trudy and Coleman with whom we shared a similar history, came by and spent hours with us.  Trudy and Mary Ann had developed a special connection over the years.  It was a comforting few hours.  Mary Ann surprised us with her sharpness at one point when she remembered a name that the rest of us could not bring to mind.

Niece Diana and her Daughter Rachel came by from Northern Illinois for a couple of days.  When we were married, Diana was old enough to be a bridesmaid in our wedding.  That visit was especially meaningful to Mary Ann since geography and circumstances had made it hard for her to keep those family connections active.  Mary Ann could no longer write letters; she could not manage the computer to email; her voice was not strong enough nor did the words flow freely enough for her to talk on the phone.  That visit sort of filled an empty place that had developed in her life since travel had become so difficult for us, preventing much family contact.

Then there was the visit of the Three Friends from the North, Joy, Terry and Cherri.  That was the most wonderful gift she could have received before her journey here ended.  I have written often about them and the raucous times when the four of them got together.  It was no different this time.  They have hung out together since they were all in about the Fifth or Sixth Grade.  The old feisty Mary Ann emerged as the stories flew by.  It was a marvel to see. 

All those visits provided a fitting conclusion to Mary Ann’s life here.  There were many Volunteers who enjoyed time with her in the final months.  Those relationships had come to be very meaningful to her.  Then when the end finally came, all of us in her immediate family surrounded her, ministering to her and expressing our love for her.  While none of us would have chosen for her to leave so soon, the last leg of the trip was filled with good and satisfying times.  Her departure was peaceful, and I have no doubt her arrival at her next destination was filled with joy and wonder and happy reunions. 

In spite of the onslaught of the Parkinson’s and the other physical assaults on Mary Ann, in spite of the struggles we both had trying to negotiate all that was thrown our way, there are some gifts that came to us and those around us.  In fact some of those gifts came because of what we went through.  In subsequent posts I will describe some of those gifts.  I described them in the words that I shared at Mary Ann’s Memorial Service in Northern Illinois.  I need to describe them again and celebrate them.

 

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 27, 2010

A Miracle: She Started Walking Again.

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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It was a little less than a year ago that we headed off for a major trip again.  This one was to Kentucky to visit Daughter Lisa, Denis, Abigail and Ashlyn.  When we had done it in one day, it usually took us about eleven hours to get there.  This time, we stopped at a motel at about the halfway point.  We got plentyof rest, had a leisurely morning, and headed on to Louisville around noon.  Mornings always were extended by the time it took for each step in preparation for getting ready to go anywhere.  It was just a part of our reality. 

On other occasions we had stayed in the downstairs at Lisa’s.  Mary Ann’s Orthostatic Hypotension made that a challenge.  When she stood, her blood pressure would drop making her susceptible to fainting.  It was almost comical to see us help Mary Ann up the stairs.  One odd characteristic of Parkinson’s is that while feet may freeze on the level, stairs are no problem to negotiate.  The challenge was to get her up the stairs before the low blood pressure no longer provided an adequate blood supply to her brain to keep her from fainting. With one of us beside her and one in back, we raced up the stairs to a waiting chair.  On some of our visits, every time we arrived at the chair, she would faint.  On some visits she had less difficulty with it.  There was nothing we could come up with that explained why some times were better than others.

By this time last year, the OH was bad enough that it was no longer an option to stay in the downstairs.  We chose to stay in an extended stay motel.  It worked out well.  We took whatever time we needed in the morning at the motel, and ended up at Lisa’s house around noon.  We spent time with the family as long as Mary Ann’s stamina held out, and then headed back to the motel. 

We headed out in the car with the family, often to visit Huber’s winery and garden produce market and bakery (and ice cream parlor) in Southern Indiana near Denis’s family, with whom we visited.  Usually there was a trip to a restaurant.  There was lots of time watching Abigail and Ashlyn doing a variety of things.  There were many hugs, lots of pictures drawn and colored.  We had a good visit.

When we left, rather than coming straight home, we made the relatively short drive to Columbus, Indiana, to visit Brother Dick, Dee and the family.  Dick is a retired Pastor, fourteen years my senior.  We are almost from different generations, but have come to know and love each other as the years have gone by, as has been so with Dave, Gayle and Tish, our other siblings. 

I have described the setting at Dick and Dee’s place a couple of times before.  They live on a five acre plot with trees and ponds and gardens everywhere.  There are bees that provide honey, fish to be caught, vegetables to be picked from the garden and either eaten right away or canned to be eaten later.  Freshly baked bread and home made granola are mainstays.  There are birds constantly at the feeders attached to the rail or sitting on the deck right outside the floor to ceiling windows. 

We enjoyed a wonderful meal.  Then came the miracle.  Mary Ann had declined to the extent that walking more than a few steps had pretty much ceased to be an option — we thought.  When she tried to walk, many times the blood pressure would drop and so would she.  When we arrived at Dick and Dee’s, it was a little challenging to get the wheel chair where it needed to be.  Mary Ann just got up and walked the length of a long hall to the living room.  Then when we looked around the house, she walked and did not fall.  Later, we went over to see the magnificent house their Daughter Jill (our Niece) and her husband had built to house their three boys, by then in junior high and high school.  The house was perfectly outfitted for the boys having friends over to hang out together. 

Dick drove Mary Ann over in the golf cart he and Dee use to get around on the acreage.  We didn’t take the wheel chair.  Mary Ann toured the main floor of that huge house on foot, never falling once.  I could hardly believe what I was seeing.  After spending the night in a nearby motel, we headed back home the next day.  This time we made  the trip in one day.  For some reason, going home always seemed to go faster.  Part of that sensation was due to the fact that we crossed a time zone creating the illusion that we had taken less time. 

After we got home, the walking continued for weeks.  Before we left, I would jump up every time Mary Ann got up so that I would be ready to catch her before she fell.  I would, of course, try to convince her not to get up without warning me so that I could come and help.  After we returned, I relaxed and stopped jumping up when she stood.  That change made our days much less stressful.  That miracle made our last fall together a pleasant one. 

In the next post on this sight I will describe the subsequent trip to a Bed & Breakfast in Hot Springs, Arkansas, the one that would be our last trip. 

 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 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 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.

 

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