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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