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.

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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Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City.  Some of it may have been her unwillingness to accept that it was so.  Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.

It was very difficult to keep that information in since it had such a powerful presence in our lives.  Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly.  Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives.  If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.

The secret became especially difficult to keep when the symptoms began to become more visible.  She would not let me tell our best friends from KC with whom we even vacationed at times.  I can remember the evening she gave me permission to tell them.  We were vacationing together in New Braunfels, Texas.  Mary Ann stayed at the condo since she was tired.  The rest of us went to a Beer Garden in nearby Gruene.  We sat together at a table and I finally told them what they already knew, that she was sick.  I told them it was Parkinson’s.

It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was.  All of them were loving and caring to us as we tried to deal with it.

Mary Ann had worked with a couple of Temp Agencies when we first arrived.  After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency.  She worked something short of full time for the next six years there.  The people she worked with became her friends and support group.

Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster.  There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends.  I took Fridays off and tried to keep up with the house cleaning.  I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.

We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times.  The people in Oklahoma are some of the most gracious folks we have met.  The attitude there seems to be that people are accepted until they prove themselves unacceptable.  Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.

Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge.  We never found one!  We started with a fellow who was pleasant to talk with.  He prescribed the basic beginning dose of the standard medication, Sinamet.  It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk.  He asked if we thought the dosage should be changed in any way (yes, he asked us).

Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City.  They have a Parkinson’s Clinic with a national reputation.  We would drive up there, at first without telling anyone why we were going to KC.  As a result, we had access to the latest and best information about Parkinson’s treatments.  It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.

We looked until we found another Neurologist in OKC.  That was our worst experience.  He is the one who came into the exam room without ever looking at either of us.  He sat at a little table just inside the door, looking down at the chart.  When he talked to us, he never looked up.  It was actually very weird.  By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years.  It worked reasonably well, as is usual in the first stages of Parkinson’s.

The last time we went to him was more than I could tolerate.  He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body.  When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head.  By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet.  If the symptoms improve, it is most likely to be Parkinson’s.  Even I knew that.

By this time, Mary Ann’s symptoms were becoming more obvious.  After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem.  Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight.  Mary Ann never had tremors, the fast movements in a hand or fingers.  Tremors are often a symptom of Parkinson’s, but not always.  She did have the dyskinesias that come from many years of using the Sinamet.

One time when she was at work, she just slipped off her desk chair on account of those movements.  She hit her side on the corner of a two drawer file and broke some small ribs.  There was nothing other than pain medication that could be done until they just healed on their own.  Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.

After the horrible experience with the last Neurologist, we were at a loss as to what to do.  Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program.  It was brand new.  A local Neurologist was developing a team approach.  We applied and Mary Ann, of course, qualified.

She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her.  Tulsa is 90 miles from OKC.  I was doing full time ministry, trying to go back and forth.  Mary Ann hated being there, and I hated having her there.  What was especially frustrating was seeing how haphazard the treatment was.  Pills were often not given at the scheduled times. (the doctor’s schedule).  The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness.  Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet  competed with its absorption and reduced its effectiveness.  That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial.  I mentioned that the Neurologist in charge of the program.  She did not consider it an issue of any importance.

The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet.  A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements.  That was Mary Ann’s most difficult problem.

Mary Ann just could not stand staying there the whole three weeks.  She managed two weeks.  When she returned to OKC, it was apparent that she would not be able to handle returning to work.  She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.

During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives.  We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.

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I have tried to write about our experience honestly.  To do so has required my revealing the harsh realities of painfully ordinary people.  I could try to create the illusion that we are a saintly household above all the weaknesses and failures and missteps that plague regular folks.  I could try, but this blog is not fiction.  It is too much work to make up stuff and keep it all straight.

I got up this morning after a night of watching her, feeling for her pulse, putting my hand on her chest to be sure she is breathing, getting up and putting my ear next to her mouth to be sure I could hear the breath going in and out.  I was tired and grumpy and angry.  Why does she have to be so stubborn?  Why can’t she just let go?  What a jerk I am to be angry at someone who has suffered so for so long and is now in the throes of dying!  I just can’t stand seeing her weak and vulnerable and in pain.  She would hate it!  She is a proud and strong-willed person, not about to be found to be weak.  I am not angry at her.  I am scared and sad and in pain with absolutely no one to blame.

I suppose I could waste a lot of time and energy being angry at God, but pain and suffering are not God’s idea.  God often gets the blame for the bad stuff (usually perpetrated by people doing the opposite of what He has asked us to do).  God more rarely gets credit for bothering to give us the breath of life and everything we just assume is our right, belongs to us.  I can’t waste my limited stamina being angry with the only One who can actually help both Mary Ann and me as we pass through this transition in our lives.

I wish I could cry, but I think the tears are waiting until this is over.  Every day seems like an entire lifetime.  This morning I was grumpy and angry.  I went to the computer to find that one of the other two in our online Lewy Body Dementia Spouses group at the same stage we are in lost her husband finally this morning.  Here is what I wrote to her:

Doris,
My thoughts are with you.  We are still in that time that has extended beyond the fear of the end to a longing for it to be over.  Rest now from your and Philip’s winding, uphill, exhausting and exciting journey to this point.  I wish you well as you take the best of what Philip has brought into your life, discover who you will become now that he is not with you here, and find joy and fulfillment when finally the pain finds a quiet place to remain as your own adventure continues.
Peter

Somehow reflecting on her loss, helped me regain a bit of perspective.  My anger and grumpiness are just a function of feeling utterly helpless, struggling to accept something I don’t want to accept, already missing horribly someone who has been in the center of my life for decades.  Yes, we could irritate the Hell out of each other sometimes, but that is precisely because we matter so much to each other.

The lifetime lived today included treating sores (none open yet), inserting Tylenol suppositories, cleaning and turning bones stretched with bruised skin over them, administering Morphine before the three times of turning to lessen the pain revealed by her grimacing as we worked on her.

The lifetime lived today included good friend and former co-worker Jim and Joanna, hugs and conversation and prayer.  A full, hot meal appeared at the door, delivered by Shari, member of our little Spiritual Formation group that meets for a couple of hours weekly.  Good Buddy Jimmy came by bearing a gift and concern for us.

Today’s lifetime included moments with Granddaughter Chloe, lots of words and acts of support for one another between Daughter Lisa, Son Micah, Daughter-in-Law Becky.  Today included the return of Son-in-Law Denis and Granddaughters, Abigail (who now wants to be called Abby) and Ashlyn, both full of energy and grateful to be in Mom’s arms again after being gone so long.

In today’s lifetime our downstairs bedroom and family room have become a campground.  It is very good that our small town home has three full bathrooms now that we have finished the downstairs and many people in it.

During this lifetime, the one lived today, fatigue has been a constant presence.  The consensus was that it would be good for me to go into the bedroom with Mary Ann, shut the door and just rest. Grumpy Grandpa is not their favorite family member.  I did so at least three times in this lifetime, today.  It helped.  Nothing can remove the tired with which I woke up, but it helped.

Lifetimes include sunshine and storms.  Today began with rumbling thunder, and moments ago the power went off for a moment, turning off the computer and the oxygen machine.  Needless to say, both are working again.

This day’s lifetime will now continue into the night.  At least intellectually, I have determined that it is not necessary for us to be awake and with Mary Ann at the moment of her death.  We love her and she knows it.  We have cared for her and doted on her for days.  Micah asked Lisa how long she has been here.  It has been eleven days that this watch has been going on.  It actually started two days earlier. We would love to have the privilege of surrounding her at that moment.  It is, however, not necessary for me to try to stay awake all night checking her breathing.  While I know that intellectually, we will see if knowing that has even a shred of influence on my insides and my actions.

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.

That was the question Son Micah asked.  He had not been with us at the time Hospice Social Worker Kristin answered some of those questions.  In forty years of ministry, I have become painfully aware of the process.

We will call Hospice.  The Nurse will come and make the declaration.  We will have all the time we want with the part of Mary Ann we can see, though life has left for another place.  The Nurse will call the Funeral Home to come and take pick her up to begin preparing her for the service.

We will begin going down the list of folks to notify.  I will not put anything on Facebook or the Blog until we have connected with as many as possible of those whom we intend to notify by phone or email.

When the funeral home vehicle arrives, we will send with them the dress, a picture to help them in their holy task of preparing her for viewing.  Once the Funeral Home folks have left, we will conclude the contacting, and try to begin processing what has happened.

We will set an appointment with a Funeral Director for the next day.  There will be an obituary to work out.  We will go over the plans we made many years ago.  Since we have those plans in place, we will not need to go to the casket room and make all sorts of decisions. They are already made.  We will need to write a check for the opening of the grave site into which the ashes will be placed the day after the service here.

One of the things I did today was work out a proposal for the flow of the service, the hymns and readings.  That job is normally left to the Pastor who will do the service.  Pastors are trained to do that, equipped to do that and experienced in doing it.  Since I served as a Pastor for forty years, Pr. Jim is willing for me to have input.  I finalized the hymns we prefer and did what I have done hundreds of times before.  I put them all together into a traditional Lutheran Funeral Service — admittedly, one with a little more music than usual.

It felt good to put that service together.  It did not feel good that the service will be for Mary Ann.  I couldn’t bring myself to actually write her name into the proposal I sent to Pr. Jim and Director of worship Young.  It just felt good to do something, something I know how to do.  Everything else is so completely out of my control, many of the things I am doing with Mary Ann are new to me, we don’t know from one moment to the next what will happen — it just felt good to accomplish something I am actually equipped to do.

We are all getting tired.  Sleep is tough to come by.  I get up at various times during the night to put my hand on Mary Ann to see if she is still breathing.  I wake up in the wee hours of the morning and just lie there, thinking and trying to doze a little.  The kids downstairs sleep fitfully, listening for my footsteps — reassured when they hear them and there is no pounding on the floor for them to come up.  Actually, I will also push the button Mary Ann used to push to get my attention when she needed me.  It is an electronic battery operated wireless doorbell system.

When I went out to run a couple of quick errands late this afternoon, Mary Ann’s breathing acted up, there were some odd and distressing movements, so the kids called and I came back quickly.  I appreciated that they called right away.  She seemed to settle down, but her breathing continues to be very shallow and a little less steady than it has been.  Otherwise, we remain in a holding pattern.  We keep hoping she will let go. It clearly is harder and harder on her when we move and shift her to avoid the bed sores.

Nurse Emily came and delivered some more briefs and adhesive pads for the red spots to keep them from becoming open sores if possible.  She reassured us that we are doing a good job of caring for Mary Ann.  When I asked about it, she said that when we see her in pain, it is better to give her the low dose more often than increase the dose.

I spend a lot of time talking with Mary Ann when I go in to be with her. I have talked about how fulfilling our life together has been.  Whatever we have done, we have been given the gift of wonderful children who have married good people, and produced beautiful, vibrant, healthy Grandchildren, filled with potential.  We could hardly ask for more.   It seemed odd when I realized that I fell in love with her shortly after I turned 19.  I am 67 now.  When I mentioned that to my Daughter, Lisa said she couldn’t remember back to when she was nineteen.  Mary Ann and I have had a lifetime together.  I have said that I have no regrets.  As I think about it, I do regret that we didn’t hug more.  She is too fragile for me to do it, but I just want to hug the stuffings out of her.  (There are no stuffings left to hug out of her — she is skin and bones.)

Don and Edie (and Son Zach) came by to drop off some orange sweet rolls — very tasty.  Don and Zach spent a little time with me talking about how to deal with the pump problem in the waterfall, the Calcium buildup.  Later, Volunteer Coordinator Mary brought by a Tuna Casserole, some of which we enjoyed for supper, along with leftovers from last night’s dinner.

In the evening, I ventured out for the fifteen minutes it takes to get a cup of coffee at PT’s and return home.  One of the owners, the one who travels to visit the locales and the farmers all over the world from whom they buy the coffee beans was there.  Jeff has a wonderful and caring relationship with all those with whom he works to provide the best coffee possible.  I have interacted with him on occasion since we arrived here in 1996.  He handed me his card and told me to call him if we need coffee brought to the house tomorrow.  He would arrange for it or do it himself.  Home delivery is not one of the services coffee shops provide.

Terry, one of Mary Ann’s three friends from childhood phoned this morning to check on her and wish her well.  All three of them and so many others have been checking on her, sending their love, and including her and the rest of our family in their prayers. This is a humbling experience for us — one we, of course, would never have chosen.  It is the capstone of Mary Ann’s life and an experience after which I will never be the same, hopefully a better person for it.

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The Family has hunkered down now.  Daughter Lisa from Kentucky will stay for the duration with Denis and the girls coming when the time is right.  Son, Micah, Daughter-in-Law, Becky, and Granddaughter from an hour away (the Kansas City area), are now also camping out in the downstairs tonight.  We need to be close to one another and close to Mary Ann.

Of course we cannot know when Mary Ann will let go and head off for the next leg of her journey, or more appropriately said, the destination.  Her breathing is very shallow.  Last night I got up three or four times and went over to touch her chest to determine if she was still breathing.  We want her to stay longer and at the same time to just quietly breathe her last breath without distress.

Her condition seems fragile.  It is getting harder to find a position that does not put her weight on one of the red spots that have been threatening to transition into bed sores.  Hospice Aide Sonya came and managed to give her a bed bath, wash and blow dry her hair.  She was, of course, completely unresponsive during that activity.  Her fever was not very high this morning, but enough to warrant giving her a Tylenol suppository.  This evening her temperature seemed to the touch to be back to normal, so we did not give her the Tylenol.  We have only given her two of the lowest recommended doses of Morphine, since she has seemed comfortable most of the time today.

While there still appears to be none of the expected mottling of the skin, she seems fragile enough to die at any time.  It is getting harder to compartmentalize my thinking and feeling.  The kids seem to share that problem.  We go about our business as if we are accomplishing something, doing various tasks, talking with folks on the phone and those who came by today.  Then we walk into that room and look at the person we love and can’t bear the thought of losing from our lives here on earth, and the pain wells up, ready to break open.  It is hard to maintain the boundaries between the compartments in our lives.  When I am doing other things, outside that room, thoughts of doing whatever it is with her gone from here breach the boundary between the compartments.

There have been moments when pleasing gestures and gifts have lifted our spirits.  Last evening, Neighbor Harlene brought over food to us, so that we would have dinner tonight.  We already started on the chocolate chip cookies last night.  Later today, Janet and Joe, former parishioners, brought over some supper.  Both meals could be prepared with portions for tonight and tomorrow and portions to go in the freezer for later times.  I will appreciate having nourishment readily available after things settle.

Pr. Jim came by to spend some time.  I shared thoughts about funeral plans and he was very willing to help us have a service meaningful to us as well as any who gather with us.  We have the chance of having two wonderful vocalists sing at the service Carol and Kristen.  Carol has been a part of the congregation for many years, directing the choir for a large portion of those years, singing solos often.  Kristen (Carol’s voice student for many years) is based in Boston (has sung with the Boston Pops), sings professionally, and has as wonderful a soprano voice as I have ever heard.  Those plans are still in the works.  We will see what finally is possible.  We will talk with the Director of Worship about hymns and special music. In our tradition we are free to use joyful music rather than dirges at funerals.  We leave with a sense of victory rather than defeat.

Sister Gayle, Niece Diana and Friend Joy have agreed to team up to handle the logistics of a memorial gathering in Northern Illinois for all those who would not be able to travel here for the service.  The plan is that it will include food, memory sharing and a short worship service in an informal setting.

Then, at one point today, the doorbell rang and there was delivered a small vase of flowers, yellow roses, yellow alsternaria and white daisy mums.  Both Mary Ann and I enjoy having cut flowers in the house. We just love flowers outside or inside.  That vase of flowers perked our spirits.  Gretchen, who sent them, was in the first Confirmation class when I arrived in 1996 at the church from which I retired as Sr. Pastor two years ago.  She is soon to complete her thesis as Dr. Gretchen.

A foam wedge was delivered this afternoon to help keep Mary Ann in a position that avoids putting more pressure on the red spots that are threatening to provide serious discomfort.  We are putting Tegaderm patches on the red spots.  They are an almost transparent thin plastic patch that has just enough cushioning to give the skin a chance to heal when red spots appear.  If any of the spots transition to open sores, the Hospice Nurse will come and put a dressing on them.

I have taken a number of breaks from writing to go in and check on Mary Ann’s breathing.  I have thought about what it feels like to be in this time that some readers of this post have called sacred.  Pr. Jim noted a sense of peace when he has visited.  It is a time of very complex dynamics.  There is hardly a more sacred time than the last moments of life.  Death certainly is what helps define life. Someone observed that there is absolutely no difference in the amount of matter, the weight, the chemical composition of a body before and immediately after death.  There is one difference.  Life is gone.  Life does not have material substance, but look at the difference it makes.

These moments of transition certainly are sacred.  There is peace.  There is pain. The one does not diminish the other. Is it peaceful pain or painful peace.  At any rate, they are folded together into one sacred time in our lives, Mary Ann’s, the Kids and Grandkids, and mine.

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She mouthed the answer, “Yeah,” but she may as well have shouted it from the rooftops.  I responded, “Thank for the best gift you could ever have given me.”  She has not moved her mouth in response to anyone or anything in about a day and a half.

Her eyes have been closed most of the time.  One eye has opened on occasion, but with little evidence there was much consciousness behind it.  When I came in to be with her for a bit this time, both eyes were open.  I wasn’t absolutely sure she actually seeing me until she mouthed her response.

Her fever is stable at the moment, only a degree and a half above normal.  It has been at that level all afternoon and evening.  We will still use a Tylenol Suppository tonight to try to keep it from rising by morning.

Today was a typically busy Wednesday, in spite of what is going on here.  The Spiritual Formation group met on the deck.  I realized again just how important that two hours weekly is for helping me keep my perspective and my spiritual focus.

During that time Volunteer Elaine came and read to Mary Ann.  Shortly before the end of the group meeting, Bath Aide Zandra came.  We figured out that she had been coming to see Mary Ann twice a week for almost eight years.  No wonder she has shed some tears.  Zandra did a thorough job on Mary Ann’s bed bath, hair washing, as well as changing the bed with Mary Ann in it.  It was good that Lisa came in since she is experienced and could lend a hand.

Hospice Social Worker Kristin came by for a while.  It was helpful to have her knowledge and experience available as we talked through what is going on here.  She confirmed what I already knew, that when death comes, the Hospice Nurse will make the necessary phone calls to get all the basic tasks accomplished so that the family can focus on their notification calls.

Landscaper Sheila came by to work on the garden and waterfall, doing clean up, adding a couple of things needed.  As a gift, she put some Petunias in a huge pot on the ground at the edge of the deck.

Marilyn, a member of the Lead Staff at the church from which I retired, stopped by to spend a few minutes with Mary Ann and some time with the rest of us.  She shared a reading and prayer with us, providing some words of reassurance about the Lord’s presence with us no matter how stormy our life may be at the moment.

Pastor Mike, who will preach at Mary Ann’s funeral (why doesn’t that get any easier to say), stopped by to spend a few moments with Mary Ann, and share some time with us.  We reminisced a while since our history together goes back to 1972.  He listened to stories about Mary Ann.

Then friend Jeanne came by to spend a little time with Mary Ann.  It was a difficult time for her.  Pastor Mike was still there, so we talked together about how hard it is to handle what is going on here.

I have to say, we started out with the refrain that we don’t like this, and as time goes by we are not liking it more and more.  That is an awkward way of saying it, but you catch my drift.  It is more and more painful to go into the bedroom and look at her pretty face, immobile and helpless — at the very same time it is more and more painful to be outside of the room and not with her.

I am glad to be able to feel that pain.  I don’t want it, but it is reassuring evidence that I am still alive and still care and not in denial.  It has always struck me that when someone has a paralyzed limb, one way to check whether or not it is healing is to stick a pin in it.  If the owner of that limb jumps in pain, the arm or leg is alive — healed.

Those who have been where we are, but for a much longer time, have often commented that after a while, they just can’t feel anything any more.  They go numb.  Good news brings little joy; bad news brings little pain.  They have to insulate themselves from their own feelings.  The ups and downs have worn them down.

We are still able to feel the pain.  I can assure you it is more than a pin prick.  Because we can still feel the pain, we still get to feel the love.

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As Bath Aide Zandra was leaving this morning, I caught out of the corner of my eye that she gave Daughter Lisa a lingering hug.  When she left, Lisa said that she was in tears.  Mary Ann has such a presence that it doesn’t take long for her have impact on people.  Zandra has come to help Mary Ann with her shower, wash her hair and get her dressed in the morning twice a week for maybe four years now.  Zandra was absolutely shocked when she came last Wednesday and saw how much Mary Ann had declined in just a week.

It is probably good that I didn’t see it.  I am beginning to feel as if my intentional denial is only a thin veneer.  I am not ready to allow the dull pain to break open.  I suspect that the illusion that I actually have anything much to say about when and where it breaks is only that, an illusion.  Enough of that!

Then there is Freda’s food.  Lisa was putting some clothes in the dryer.  As she walked out of the laundry room, I was standing in the doorway to the kitchen.  The door to the garage was between us.  As I was standing there, I was eating some of the Chicken Tetrazzini that Tamara had brought the other day.  I said to Lisa, “You know, I think we are running out of food.  I need to get to the store and pick up something.”  Lisa said that she certainly could cook something.

Seconds after Lisa finished that sentence, the door to the garage opened between us, and Lisa’s Husband, Denis, who had been sweeping out the garage, said, someone is here with food.  Neighbor Freda walked in with a bucket of beef and noodles, a package of salad, a loaf of bread and a freshly baked chocolate cake, announcing, “I brought supper.”  It’s all in the timing.

Today there was resolution to some minor annoyances that in our circumstances have seemed like adding insult to injury.

On Friday, I got the summons from the County Courthouse to jury duty.  Today, I picked up the note from the doctor excusing me from serving and got the form and the letter ready to put in the mail tomorrow.

There had been a leak at our gas meter we had reported a couple of weeks ago.  I called today to check on when they would come to repair it.  The truck came this afternoon, dug up a section of our new landscaping, and put in a new meter.

Yesterday, the waterfall stopped running.  Today, Brad came, pulled out the pump, covered with calcium deposits, took it with him, and later returned with a new one.  He had to talk long and hard to convince the vendor to honor the three year warranty.  Since Brad’s Dad has also been diagnosed with Parkinson’s, he has always been very good to us.  Actually, what he told the vendor was that he could not bring himself to charge this customer for a new pump and if he had to he would pay for it himself. Brad said he would come back in two or three weeks to add some stone to cover places where the liner is exposed.  He also will search from some bird friendly chemical to keep the calcium from building up again.

Today my mind has wandered a variety of places.  First of all, my gut keeps reminding me just how much I do not like what is happening to Mary Ann.  I won’t try to describe that feeling.  It is too big for words.

As I was driving out to run some errands a couple of thoughts wandered through.  One is how much of a relief it is not to be dealing with decisions on medications, how much to give and when, what to give and what to remove.  There was always the sense of responsibility for Mary Ann’s survival weighing on me, as if that depended on my making the right decisions.  I know I did not have that much power, but it did make a difference what we did and when.  There were good choices and bad choices to be made.  Those choices are no longer mine to make.  In that regard, it feels as if a heavy weight has been lifted from my shoulders, only to be replaced by a heavy pain in my gut.

Then, just for a moment, as I was driving from the Wild Bird place where I got some more peanuts in the shell for the birds favorite feeder to the Barnes and Noble to look for a reading light so that I could be in the bedroom with Mary Ann reading without having to turn on a light that might disturb here — just for a moment, I had a flash of being out running an errand by myself, without have Mary Ann at home to return to.  It was almost more than I could tolerate.  Have I mentioned how much I don’t like this???

On a more positive note, it continues to be a marvel how many people here and in other places are praying for us.  One of the images used by some of the New Testament writers, is that of myriads of people cheering from the stands.  The imagery comes from the sporting events of the time.  We feel as if there are many people cheering us on as we are in the home stretch, winded and in pain, buoyed by the good will of so many.

Mary Ann has seemed very comfortable today.  We were concerned about the possibility of sores starting, but there were only a couple of red spots.  Bath Aide Zandra confirmed that her skin looked very good.  Nurse Emily came by and confirmed that Mary Ann is still not in need of changing to the special bed and mattress.  She also said that Mary Ann is probably much more comfortable in her own bed than she would be in a hospital bed if one was brought in.  We can get one within a couple of hours if it is needed.

Hospice Chaplain Ed came over for a while.  Again, that is more just a chance for two pastors to chew the fat, as they say, than anything else.

Mary Ann did not eat anything today, but she did drink some water.  She has had her eyes closed almost all day.  One eye opened for a bit when the girls (our 5 and 7 year old Granddaughters) sat on my bed next to Mary Ann and read her some books.  Mary Ann said “okay,” when Nurse Emily told her she would be back tomorrow.  When we changed Mary Ann tonight, there was very little redness in a couple of places.

It felt good to see her comfortable today.  Somehow that helps make dull pain more bearable.

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What will she wear, what songs will be sung, what passages read.  We talked about some of those things years ago when we filled out forms for a Pre-need plan at the local funeral home.  The major decisions are already made.

I have to admit that it is painful even to talk about such things.  It was fine to do so many years ago — not now.  I am refusing to allow it to sink in and touch my gut.  The pain is there, but it is an aching now.  I have tasted it enough to know that the pain will sharpen and overwhelm when it breaks open.  Certainly I will survive as have tens of millions before me.

Friends Mike and Judy came over to spend time with us today.  As always it was a good and meaningful time.  Mary Ann connected with their presence and appreciated it.  Since Mike is the Pastor who will preach at the funeral when it comes, we needed to talk some about that.

Later, Pastor Jim, who followed me as Senior Pastor of the congregation I served for a dozen years, came over to celebrate Holy Communion with us.  There were enough of us to feel like a congregation.  Pastor Jim provided a meaningful ministry through a service of Scripture, prayer and song.  With three Pastors, two Spouses of Pastors and one Daughter of a Pastor, we surprised Jim by knowing the words to the songs (multiple stanzas) by heart.  He didn’t have to sing solo.  We were a choir.

One of the songs we sang is “Beautiful Savior.”  Both Mary Ann and I grew up in the same congregation in Aurora, Illinois.  Every Sunday worship through all the years we were growing up ended with “Beautiful Savior.”  As we gathered around Mary Ann’s bed and worshiped, sang and shared the bread and wine of Holy Communion, there was a peace about what is happening.  Mary Ann was a part of it even if she was not able to sing out loud with us.

With that said, as Son Micah commented later when he arrived, “this is hard.”  It hurts.  It just hurts.

Mary Ann seemed to have a comfortable day.  Last night, I was up a few times to listen for her breathing.  I tried to move her a little to minimize the pressure sore problem.  This morning when Lisa and I changed her, she did not show much evidence of the first stage of pressure sores — just one red spot on her ankle.  It was a relief to me that she seemed to fare well last night.  She does not move at all other than a foot moving a bit once in a while.  That is a formula for bedsores.

One happy surprise was that while Lisa and I were rolling Mary Ann this way and that to change her and check her, it just caught our funny bone.  We started laughing and so did Mary Ann.  It was not audible, but had it been, it would have been a belly laugh.

Lisa headed off for church and a local Art Fair.  I read a bit, then started a new book, titled Broken Open, by Elizabeth Lesser.  It is subtitled “How difficult Times Can Help Us Grow.”  How is that for timely.  It was recommended by the online Lewy Body Dementia Spouses group.

I decided to move into the bedroom to read, just so that I could be with Mary Ann.  It was a pleasant experience.  She seemed comfortable.  I asked how she was doing and she responded audibly that she was okay.  We just had some quiet interaction.  I gave her some water.   I realized just how wonderful it is to be able to spend this time in our lives together at home.

Later in the day, Son-in-Law Denis, arrived to provide Lisa with support and help with the girls.  Denis and the girls will be going back to Louisville on Tuesday.  Son, Micah and Granddaughter Chloe arrived at about the same time as Denis.  This was around the time Mike, Judy and Pastor Jim left.

Lisa and I changed Mary Ann again, examined her for red spots and turned her.  It was disappointing to see some red areas, indicating the potential of pressure sores beginning.  I plan to phone the Hospice Nurse tomorrow about the possibility of a hospital bed with the self adjusting air mattress on it to help avoid the worsening of those spots.

One annoying element in the day was the waterfall simply stopping.  It just stopped.  No one did anything to it.  It just stopped.  I was able to get hold of Brad (through his wife since they were driving) who promised to come after his work tomorrow afternoon to work on it.  Brad installed the pondless waterfall.  I certainly realize just how important a role that addition to our home is now that it is not working.  We built the sun room so that we could see the waterfall!

While Mary Ann is, of course, very vulnerable, and anything could happen at any time, she still seems fairly strong.   She ate a small dish of ice cream this afternoon while lying in bed. The Orthostatic hypotension has been so bad that it is pretty much impossible to sit her up for more that a moment.  Her blood pressure drops and so does she.

We continue to take things as they come, grateful for what we have, hoping for a peaceful release when the time comes.

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The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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