Help from Others

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November 8, 2010

“Blessed Are Those Who Mourn….”

Posted by PeterT under Daily Challenges, Family, Help from Others, Uncategorized | Tags: , , , , , , |
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I guess I feel pretty blessed.  This has been “All Saints’ Day” with the tradition of reading the names aloud in the service.  Mary Ann’s name was not read.  None of the names were.  There was a list in the Service Bulletin. but no reading.   I am sure her name was read in the congregation I served the last twelve years of my ministry, but I was not at home and could not attend that service. 

I am currently in Kentucky visiting Daughter Lisa, Denis and Granddaughters.  I knew that Lisa had requested that Mary Ann’s name be included on All Saints’ Sunday here, and my experience in the past concerning the tradition resulted in the expectation that it would be read aloud.  I felt emotionally vulnerable and expected to be impacted by the reading.  While I was not sure I was ready to hear it, I was certainly disappointed when it I did not hear it. 

I really like how the worship is conducted here in Lisa and Denis’s congregation. The music is wonderful.  Pianist Todd has improvisational skills combined with an obvious reverence that results in a welcoming tone throughout the service.  I like the Pastor, appreciate the preaching.  I just missed the reading of the names aloud.  It was a sad morning in that regard.  On the other side of it, Granddaughter Ashlyn was in a hugging mode.  She kept her Grandpa close in church.  She was sitting next to me and sang out clearly on the songs.  She and Granddaughter Abigail have perfect intonation when they sing.   Both Ashlyn and Abigail drew pictures for me during church.  I realize that I need to focus on life now, but the grieving and remembering are still an important part of my reality.

I remembered one All Saints’ Day when after the service a parent asked why their daughter who had died early that year was not included.  I was horrified that it had not gotten in since I had done the funeral.  I was able to discover the reason it wasn’t automatically on the list to be read.  The pattern for doing statistics for our national church body demands a certain way of recording folks.  The usual process used to obtain the names for the list did not work in her case.  It should have been caught and included.  I apologized, but it couldn’t undo the damage.  I now understand more fully the impact of not hearing read the name of someone loved deeply and lost in death. 

It is now Monday evening and I have returned home.  The feelings of sadness hung around yesterday (Sunday) and throughout most of the day today as I traveled.  It is always hard to say goodbye when coming to the end of a visit with family, especially the Kids and Grandkids.  The sadness is, of course, missing Mary Ann.  Lot’s of things brought her to mind.  It is always interesting to analyze the path from some random thought through the mental twists and turns that lead to from whatever the first thought was to missing Mary Ann. 

The sadness is also just feeling sorry for myself.  I have loved solitude for so long that it is hard to admit how much I don’t like being alone now.  Mary Ann was not at all verbal, especially in the last few years.   She did, however, have a strong presence.  She was in the car when we traveled, with needs that had to be met.  She was at home when I came home from wherever.  Her needs filled our lives with activity.  I was by myself in the car for nine or ten hours.  I came home to an empty house.  It is hard to make sense of this new reality, to find meaning and purpose in life without someone else with whom to share that life.  I recognize how pitiful this sounds, since there are people by the tens of millions who live by themselves and have fulfilling and meaningful lives.   I will get there eventually.  There are lots of times when I am on course to wholeness.  There are just times like these when the sadness hangs on for a while. 

Tomorrow is a very full day.  Hopefully, there will be little time for the sadness.   Focusing on immediate tasks and the needs of others helps diminish the power of the sadness, allowing joy to return.

 

October 14, 2010

Needed Help, But Never Needy

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , |
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As the Parkinson’s took away Mary Ann’s ability to do so many things, she needed my help and that of the Volunteers to do fulfill the basic human needs.  The doors had to be widened for walker and wheelchair (thanks to the KC Crew of friends).  The carpet was replaced with something firm enough to allow the walker and the wheelchair to roll.  We got adjustable beds to help with movement.  The bathroom was remodeled to provide a roll-in shower.  Grab bars were added to the bathrooms, tall toilet stools installed.  There was a shower chair and then a bedside commode as time went by.  A portable ramp was purchased for use when needed.  A rolling Hoyer Lift was purchased for times I might not be able to get her up off the floor. 

We purchased special dinner plates for those with limited dexterity, then had ceramic ones made by a local potter.  We were given a set of large handled silverware, easier to grab hold of.  Bath Aide Zandra was engaged to come and give her showers twice a week.  Debbie from Home Instead came early Sunday morning for the last few years I was still working. 

Volunteers by the dozens (she called them her Angels) came many hours a week to help her with her personal needs, as well as keep her company.  I helped her turn in bed and go to the bathroom or use the bedside commode multiple time a night for many years.  I or the Volunteers helped her get dressed, move around the house.  I fed her sometimes at first and later all the time.  One way or another, I obtained or prepared food for her, sometimes Volunteers provided it. 

Mary Ann needed my help and the help of the Volunteers.  She was never needy.  To put it bluntly, she needed my help, but never needed me.  That sounds like it could be a bad thing.  It was not.  She loved me;  she chose to marry me, I cannot be anything but honored by that.  She did not need me.  She was always a complete person without needing anyone else to complete her.  Given the pain I have felt at her loss, I suspect I was the more needy one.  When I think about it, sometimes when I caught sight of the fact that she didn’t need me, I wondered if she actually loved me as much as I loved her.  It was not that she didn’t love me completely, it was that although she loved me, she didn’t need me. 

Realizing that was sometimes a little scary.  How could I count on someone who didn’t need me to actually love me?  I would be so much more secure if I had some leverage.  If I had something of value that she needed so that she would have to love me, then I could be sure never to lose her.   That thinking is almost like feeling as if I needed to hold her hostage, to have some control on her to make sure she stayed.  How could someone just love me, choose me?  I grew up with the same lack of self-confidence that often comes especially with adolescence. 

I did not actually live in fear that she would leave.  We had chosen one another and made a public declaration that we had done so.  We promised faithfulness to one another.  We kept our promise.  It is nothing out of the ordinary.  At the Hospice Grief Support Group meetings, around the table are folks, some of whom were married for sixty or more years.  The Kansas City crew of friends have all been married way over forty years.  Many of the people to whom I have served over the forty years of ministry have been married for multiple decades.  One couple made over 75 years of marriage.  Since Mary Ann died after we were married for 44.5 years, I have been married the shortest time in our family of five siblings.  Our parents were married 59 years before Dad died. 

She wasn’t needy.  She didn’t need me to make her whole.  She loved me, chose me and committed her life to me as I did mine to her.  Yes, she came to need my help, but she was never needy.  It was an honor that she chose me and loved me.  It was an honor that she allowed me to help her.  I could not have asked for a more privileged life with her.  I am so sorry that she had to suffer so many indignities and infirmities.  That is the source of my pain and sadness.   She never lost her strength of character — and she was a character!

It has been exactly four months to the day today.  That dawned on me when I signed in at the Support Group this afternoon and saw that the person who signed in before me had written today’s date.  I no longer have the privilege of caring for her, but my loss is her gain.  She is whole again, no longer in need of my help.  She is completely immersed in the unconditional love of the One who gave, who gives her life – now free to live that life without the limits of the Parkinson’s.

 

September 22, 2010

First Look at Grave Marker

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
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I had not felt well mid-morning today, so I ended up bailing on lessons and staying in.  Later after feeling a little better, I finally just needed to get out.  I headed over to church to Parish Nurse Margaret’s Wednesday Blood Pressure Clinic.  My BP was fine, but as I was driving there, I glanced over at the cemetary toward the spot where Mary Ann’s ashes are buried to see if there was any indication that the Marker had been placed.  It appeared it might be there. 

On the way back I debated about it but decided to go ahead and stop by to see if it actually was there.  It was.  The Granite Marker has a Cross and a vine on it (as in the Vine and the Branches in the Gospel of John).  Then our last name is in large letters in the center at the top.  Below it are both Mary Ann’s and my names with the year of birth next to them.  Mary Ann’s, of course, also has the year of her death. 

I am not really sure how it felt.  I realize that doesn’t make much sense, but my feelings were just not clear.  I was a little apprehensive about how my gut would react when I saw it.   There was a feeling of heaviness, maybe the weight of the loss.  There was not any particular sense of her presence there since we were all there at the moment she left the planet.  The stone is a solid, unmoving reminder that she has died.  My name is there on that stone, a clear declaration of my own mortality. 

I am writing this account on The Caregiver Calling site since a portion of the grieving is the loss of the role of Caregiver and the one about whom and for whom I cared much of my and her lives.   I said in the last post on this site that I would write some thoughts for Caregivers as they do their task.  Many of those thoughts have implications for most of us in our regular daily lives.  It is also true that at some time during our lives most of us will be in a Caregiving role.

The first thought about caregiving is some thing that friend Charlie emailed to me when I first announced that I would be retiring to take care of Mary Ann full time.  He cares for his wife Marlene who has had a form of ALS for very many years.  Some time earlier, he had retired to very part time work to be with her.   He referred to doing that kind of caregiving as a privilege. 

To be a Caregiver truly is a privilege.  Saying that is not just a way to frame the opportunity so that it sounds more palatable.  It is an honor to have the chance to make a significant difference in someone’s life.  So much of what we do is about bartering, I’ll do this for you and you can do that for me.  Lots of couples live independent lives, each taking care of him/herself, sharing space and maybe kids.  Even when the relationship is close and the marriage healthy, there is only so much we can do to show that love to one another.   

When a debilitating illness or something similar arises so does the opportunity to give what is truly needed.  Mary Ann needed my help.  In yesterday’s Hospice Grief Support Group,  the Leader asked me what would have happened to Mary Ann if I had not been there and cared for her.  In answering I remembered something that Daughter Lisa said to me very many years ago, when we were talking about how to get some help.  Lisa had been an Administrator at a CCRC (multi-layered facility for Independent Living, Assisted Living, Health Center, Dementia Building).   She said, “Dad, Mom would not qualify for Assisted Living.”  She said that to help me understand just how much care I had been providing and how much was needed.  Volunteers from church were filling in while I was away from the house doing my job as Pastor.  Without my care she would have spent many years in a Nursing Home setting.

I had the privilege of providing personal one on one care for her until the day she died here at home.  When I was serving as a Pastor, I could make a tiny difference in the lives of many people.  As a full time Caregiver, I could make a huge difference in the life of one person.  By giving me that privilege, Mary Ann made a profound difference in my life — in addition to giving me so many years of her life as my wife, Mother of our children. 

We kept our marriage vows to one another, “in sickness and in health.”  To have had the chance to fulfill that promise would not have been our choice, but having that chance filled our lives with meaning.   We experienced the worst and the best of times.  Sometimes the best was to be found right in the midst of the worst.  It really was an honor and a privilege to care for Mary Ann.  It was a gift to me that she allowed me to do so.

 

September 16, 2010

“But Mary Ann, I’m Doing the Lord’s Work!”

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , |
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Whatever else I did or didn’t do, I knew enough never to say that!  I never said it for one thing, because it would be silly to claim I was doing the Lord’s work if I was not fulfilling my Call as Husband and Father.  Being a Husband and a Father is doing the Lord’s work.  Working for the church is just the way I chose to live out my Vocation, no more or less important than anyone else’s Vocation.  Every Christian is Called to live his/her Christianity in every dimension of their life and work. 

Another reason for not saying those words, “But Mary Ann, I’m Doing the Lord’s Work,” is that, assuming they were spoken to suggest my stuff was more important than her stuff, the Mizel wit would cut me down to size with a sharp blade. There was no room for pretense with Mary Ann.  I was her husband, she was my wife.  My job happened to be to serve as a Pastor of a congregation.  She kept me from becoming self-important.  The result was that I was more genuine in the way I did Ministry.  My relationship with people was more real on account of pretense being an unacceptable option. 

That is a gift Mary Ann gave me that impacted my work.  The battle with Parkinson’s had a powerful impact on the way I did ministry and how that ministry was received.   Certainly, there was an impact on my time and energy.  I had to delegate, accept help, find efficient ways to accomplish the ministry so that the Congregation got from me the job they had Called me to do.  Being up multiple times during the night, pretty much every night, for the last eight or so years in the Ministry, had an impact.  The Leadership of the Congregation insisted on my taking care of myself to keep functioning effectively.  The Staff helped in every way possible.  

One gift was that we had to function as a team, each helping the other be as effective as possible.  Members seemed more willing to take on tasks, realizing that the help was very much needed.  As time went by, the challenge of the Parkinson’s resulted in a structure at work that could remain functional and healthy even when Mary Ann was in the hospital and I needed to be there full time day and night.  That actually turned out to be a strength as we dealt with vacant Staff positions at various times during those years. 

I am inferring from observations mostly and occasional comments, another gift our situation gave to my ministry.  There was an authenticity when I was preaching and doing Pastoral Care that seemed to come from the awareness that we were living through very difficult times.  Whether or not others perceived it, I felt freer to talk more boldly about people dealing with challenges since what I said (at least in my mind) could not be easily dismissed as shallow platitudes.  Even if no one else was aware of it, I felt more deeply than in years past the weight of what message of the day had to say to real life situations. 

The place it seemed to me to make the most difference was in hospital visitations and counseling situations.  Those who were suffering from medical problems seemed to talk with me and listen to me as someone having a common experience with which we were both struggling, both finding strength from our faith.  Again, there was an authenticity in our communication that was rooted in the fact that we were all in the same sort of circumstances.  The words I came to say spoke to me as well as to them.  Those who were struggling with painful relationship issues or bouts of depression, could not easily dismiss my counsel, since it came from personal experience in dealing with issues that could be depressing and destroy a relationship.  It was not easy for people to just feel sorry for themselves in front of me and tell me that I didn’t understand what they were going through. 

Of course, I also learned to be far more understanding when folks were going through tough times struggling to survive.  Having seen the boundaries of my capacity to cope with our situation, I could empathize with those living on the edge.  I knew what it felt like.  I knew what it was like to need help and be forced to accept that I could not make it without reaching out to others, accepting their help. 

Now that the Parkinson’s and its allies have done their worst and taken Mary Ann from life here, from those who knew her and loved her, from our Children and Grandchildren, from me, there is another gift that has come.  It is a tough one to accept, but I have no choice.  I now understand just how hard it is to lose a Spouse after decades of marriage.  I understand what it feels like to have a heart broken by losing the one who filled life with meaning and purpose, the one the Lord called me to love and care for these many years.

I also know more clearly than ever that there is healing and new life for her that is now more than she has ever known before.  I  know, not just intellectually, but experientially that because she has new life, I am free to live again, to start a new life.  I am free to incorporate into my life the impact she has had on me in the 48 years I have loved her, along with the unconditional love of a Lord who refuses to give up on me, plus the impact of so many who have touched my life in the years in the Ministry — I am free to say yes to the Call to Live.   Only a Lord who brought Resurrection out of suffering and death could bring out of twenty-three and a half years of battling a disease, so many good gifts.

 

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

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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.

 

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. 

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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.

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August 21, 2010

A Ten Hour Trip in Three Minutes

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

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

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

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

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

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

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

 If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

August 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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