The Caregiver Calling

The last dozen years could have been spent cloistered at home, a prisoner to Parkinson’s.  We chose instead to live to the limits of our physical ability, maybe a little beyond.  It was Mary Ann’s resilience and our resolve that allowed a quality of life that was satisfying and fulfilling. 

In 1999, the Kansas City Crew, including the two of us decided that a trip to Alaska was in order.  It was John and Carol’s 35th Wedding Anniversary.  Gary knew someone who had been a travel agent and still had access to the last minute cheaper fares on the Princess Cruise Line.  Marlene was impacted by ALS as Mary Ann was by the Parkinson’s.  We just did it.  It was a wonderful, memorable trip.  We flew to Anchorage, enjoyed a Farmers’ Market there, drove to a lodge outside of Denali, where we sat on a deck in the bright sunshine at 11pm.  We bussed through Denali, seeing the spectacular sights, Mt. McKinley, Moose, Dahl Sheep and Bear Scat.  That is as close as we got to spotting a Grizzly Bear — okay with me.

There was the obligatory stop at Talkeetna.  We walked the street and marveled at the size of the flowers.  We made one stop that provided a scene that doubled us over in laughter.  There was a huge statue of a Grizzly Bear.  From the back, his stance looked exactly like a huge guy standing there relieving himself.  There is a picture of the four of us (the guys) from the back as we lined up on either side of that bear and mimiced his stance.  No, I am not going to post that picture.  There are former parishioners who read this blog.  The KC Crew threatened to send a copy to the church when the pictures came back. 

We drove to Seward and boarded the ship.  Glacier Bay was breathtaking.  The aqua blue eminating from the cracks, the snapping of the glacier as it moved, the rumble of the calving, a seal sitting on an ice floe, a bright day with a crisp chill in the air made that part of the trip the most vivid in my memory.  We traveled the train the gold miners used at Skagway, the White Pass Excursion Train.  It is impossible to describe the expansiveness of the views.  Everything in Alaska is huge! 

We saw the Mendenhall Glacier, already then having retreated a mile or two from the observation building that at one time was at the edge of the glacier.  We ate our fill of grilled salmon fillets covered with a sweet brown sugar glaze.  There was fresh Haibut — who knew it could have so much flavor when fresh from the ocean. 

The Cruise Ship, as always, fed us huge gourmet meals multiple times a day.  One of the KC Crew is fluent in Spanish, since she is from Puerto Rico.  At one of our first dinners, Maria spoke in Spanish with one of our waiters.  It was not long before it was clear what she had said.   That meal and every meal after that ended with my receiving a large chocolate dessert, at least one, no matter what else was served as the regular dessert. 

Charlie and Marlene, Mary Ann and I hung together since on account of the wheel chairs, we moved at about the same pace.  The ship was accommodating, and most of the places we wanted to see were accessible. 

Near the end of the trip we watched the Eagles in great numbers hanging around the salmon canneries in Ketchikan.  We ended the trip, sitting at a restaurant on Puget Sound enjoying one of the best views of the trip.  We made some wonderful memories as we ventured to Alaska and back. 

That was our biggest and most dramatic adventure during the Parkinson’s years.  There were many smaller trips sprinkled throughout the last ten or twelve years.  I will spend some time in the next post or two describing some of them.  I need to savor the good times we had.  Thoughts of how debilitated Mary Ann became can be overwhelming at times.  Remembering the ventures out somehow seem to provide a bit of salve for the still open wound created by her death.  It helps to remember that we made the best of a difficult situation and chose not to allow the Parkinson’s to rule.

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That January, Mary Ann could simply no longer care for herself.  I didn’t know what to do.  I needed to work to support us (60-70 hours per week as a Pastor).  We couldn’t afford that many hours of paid help.  It would cost more than my salary. The options simply weren’t there.

Then Margaret came to the rescue.  Margaret was (still is) the Parish Nurse at the congregation I was then serving.  She just started phoning people and before I knew it, there were Volunteers from the church staying with Mary Ann when I was away from the house at work.

After it became clear that she could not do the scheduling task and still continue her work as Parish Nurse, Carol stepped in.  For over six years, Carol scheduled Volunteers for weekdays while I was at work, evenings while I attended meetings and did Counseling, Friday evenings and Saturdays for weddings and retreats, Sunday mornings (I had paid help for the early morning hours), even emergency Calls when there was a serious illness or a death.  At one point there were at least 65 different Volunteers.  Some days had as many as five different people filling two or three hour slots.  I have never figured out how one person could manage all that.  I have nominated Carol for Sainthood.

By February, we had gotten back to KU Med Center, the Parkinson’s Clinic. They had transitioned to a new Neurologist, Dr. Pahwa.  He was able to put together a new regimen of meds that allowed Mary Ann to return to a significantly higher level of functionality.  The bathroom needs and the falling would still not allow her to stay by herself for any length of time.

After a year or so, we entered the two years from Hell.  Mary Ann had often complained of heartburn, since she was taking so many pills (I think 30-40).  At least that is what I thought.  It has always been hard for me to accept that I didn’t pick up sooner on the possibility that it might have been more than heartburn.

On June 30 of 2003, Mary Ann was admitted to the hospital through Emergency with a case of Congestive Heart Failure that came within a hair’s breadth of putting her on a Ventilator.  It was discovered that she had had a number of silent heart attacks.  Two of the three main arteries on her heart were completely blocked.  The surgeon was able to stent a branch of one of the arteries, but that was all.  She had another MI (heart attack) while in the hospital.

Mary Ann always moved into a hospital psychosis when hospitalized, hallucinations, agitation, inability to sleep, trying to get out of bed, pulling at tubes.  I stayed all night every night since the Parkinson’s meds were so complex, the various shift changes made it necessary for me to track what was going on.  The staff needed my help to manage her reactions, day and night.  I had to be there when the various doctors came to check on her or report the results of the endless tests and procedures.

By the end of those eight days, after an entire night of Mary Ann repeating “help me” over and over again, for the second time in my adult life, I broke down in tears.  Gratefully, Son Micah was there to hold me.  When she was released and came home, it was one of the lowest times in our life together.  Everywhere I turned to come up with a solution to how we could go on came up empty — except for Carol and the Volunteers.  They are the only reason I was able to continue in the ministry and we were able to survive.

Almost exactly one month later, she was back in the hospital with another MI and another unsuccessful attempt and getting through one of the blockages.  It was a shorter stay.  She came home again.

For a while after that she was doing better.  We returned to a reasonable quality of life.  It would take more than a little heart trouble to stop Mary Ann.  After a year and a half we even risked going on a week long trip by plane from Kansas to Tucson, Arizona for a retreat for older adults.  We had decided that we were not going to just sit at home and feel sorry for ourselves.  We chose to live as fully as possible given the circumstances.

I still blame the air quality on the plane.  Mary Ann was fine when we left the Kansas City airport but had some congestion when we arrived in Tucson.  By then we were using a wheelchair most of the time.  We joined in the activities, got to visit a wildlife center outside of Tucson.  As the week wore on, she was having some labored breathing.  It was March 10 of 2005. I called an ambulance to take her to the nearest hospital.  On the way, the dyskinetic movements that come with the Parkinson’s medicine were so bad that the tech in the back with her could not keep an IV in her arm.  Mary Ann was flailing around and almost flying off the gurney.

They sedated her when we got to the Emergency Room.  Then they took an X-ray.  When the ER doctor returned he said that all he could see what white where her lungs were supposed to be.  By that time she was completely unresponsive.  When I asked if I should call our children to fly into Tucson, he said yes.  The ER nurse confirmed that — so I did.  I will never forget the feelings I had as I sat alone in that ER room, knowing no one there, having been told she might not survive the night.  Mary Ann had been taken for some other test.  I am now living what I feared that night.

The Kids came, Lisa with baby Ashlyn in tow.  Mary Ann was so agitated that even with me there, they provided a hospital sitter to be in the room also.  Four days later, Mary Ann and I were on a plane home.  She had bounced back from that flirtation with death.

Within one day of a month later, the Ambulance came to out house in Kansas to take her to the hospital again.  She had had a stroke. It was April 9 of 2005. At first her speech was gone and her right arm was virtually useless.  It was not a bleed or a large clot, but a cluster stroke, plaque from her carotid artery broken into tiny pieces, lodged in a cluster in one part of her brain.  With a few weeks in the hospital, rehab, followed by outpatient therapy, she regained almost everything.  She was left with some spatial issues that reduced the control of her right hand making feeding herself more of an issue.

Mary Ann refused to give up.  We continued to have a reasonably good quality of existence in spite of the limitations.  The Volunteers and Mary Ann’s strength of will, kept our life on course.  Also by that time I had come to know a great deal about the diseases that had assaulted her and the medications used to treat them.  I was able to make helpful recommendations to the doctors and monitor her condition daily.  I think my advocacy for her with the medical professionals helped the quality of her life, until finally in the last weeks, nothing I did could stop the inevitable.

Before that inevitable day two months ago came, there was more of life to be lived.  That will come next.

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I think it was around 3am when the phone rang.  It was Roger.  Then he said it, “We just lost Wendy.”  All I could say was “What?!”  She was only in her 30’s with three young boys.  There had been no warning — heart related.  Wendy was uniquely gifted.  She could do many things and all of them well.  She was in the thick of the life of the congregation.  She taught part time at the Parochial school sponsored by our congregation and two others. 

I, of course, went to the hospital for a while to provide some support for Roger.  First thing in the morning I went to the school to help in any way I could with the Staff and Students.  The boys went to school there (the older two).   I remember as I was walking out of the office at the school, someone said something about a plane hitting a building in New York City.  I thought little of it since our attention was on what had happened here, on that September 11, 2001 morning.

I think it is fair to describe the next few days as surreal.  It was hard to get our minds around what was happening.  The magnitude of the 9-11 terrorist attack and the intensity of the grief over the loss of Wendy converged on our congregation.  It was hard to pull apart the various elements of what we were feeling.  One compounded the other.  In some odd, irrational way, it almost seemed as if Wendy had been one of the casualties of the attack. 

We had a service that evening to provide a place for people to come together in the face a national tragedy.  The experience in Oklahoma City after the bombing there helped inform what we did in response to 9-11.  Again, I urged that contacts be made with the homebound who were only seeing the television and not the world outside their house, the one that was still standing.  There were resources for families and children and teachers in the education programs at church as well as at the school.

Wendy’s funeral filled the church upstairs and downstairs.  In the face of two tragedies of such significance, the message of the church became clearer and more important.  The year that the congregation reached an average attendance of 650, was the calendar year following 9-11. 

It was during those years that Mary Ann had a dramatic decline.  After four years of controlled symptoms, our Medical Insurance carrier insisted that we switch from the KU Med Center clinic to a new local Neurologist if we expected them to cover her visits.  The new Neurologist had spent time training with the KU Clinic.  She was caring and competent.  She tried her best, but Mary Ann’s expression of Parkinson’s demanded more than she was able to give.   Oddly, the doctor admitted to Mary Ann at one point that she suspected she might have Parkinson’s herself.   By January of that year, Mary Ann was no longer able even to feed herself.  I think that was also in 2001. 

We decided that we would go back to KU Med Center even if we had to pay out of network costs.  The local Neurologist at the very same time wrote a referral to KU Med Center, realizing that she did could not find the right mix of meds to deal with Mary Ann’s symptoms.  Also at that moment, the Medical Insurance changed, again allowing the use of KU Med Center’s Parkinson’s clinic.

Mary Ann was not only unable to feed herself at that time, but she could not manage the bathroom without help.  She also struggled to keep from falling.  She could not be at home by herself.  I had a full time 60-70 hour per week job.  I was to young to be able to survive were I to retire.  We did not have enough income to be able to add paid Caregivers to cover the hours I worked.  The options dissipated like the morning dew when the sun comes out. 

After all the obvious options were gone, a new one emerged.   That is for the next post to this blog. 

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

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

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

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

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

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

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

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

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We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s.  KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away.   We could hardly believe it. 

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

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

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

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

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

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

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

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

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