November 8, 2010

“Blessed Are Those Who Mourn….”

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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.

 

July 4, 2010

Teach High School — Me??

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Fr. John told me about a Principal friend who was looking for a teacher in the religion department of a large Lutheran high school (800-900 students) back in Ft. Wayne, Indiana.

By that time I could read Hebrew, Greek, Latin and German.  I certainly knew theology after 8 years of college and Seminary.  I had been trained in preaching sermons.  I had the equivalent of at least an undergraduate degree in Psychology and had had supervised Counseling classes. I could read the Bible in the original languages and analyze passages effectively to discover the meaning for today.

There was a catch.  I had no idea how to teach.  I had had a one term required class in teaching methods but nothing more.  At least it was not the parish.   I would have a chance to get to the heart of the message with kids at an important time in their faith development.  Having just come through the crisis of faith, I could talk candidly about faith struggles.

I took a class in Education Psychology at Washington University in St. Louis during their summer term.  I agreed to give the teaching job a try.   It seemed such a waste to give up on the ministry completely.  I was Ordained on August 17, 1969 at Our Saviour Lutheran Church in Aurora, Illinois (the church in which both Mary Ann and I grew up).

We packed up Lisa and rushed to Ft. Wayne so that I could get to faculty meetings and prepare to start teaching.  Remember the part about not knowing how to teach?  There is more.  I would be teaching three different courses, titled, Old Testament (Freshman Religion), New Testament (Sophomore Religion), and Doctrine and Life (Senior Religion).  There was no text book nor any curriculum for any of the three courses.  Not only had I not been taught how to teach, I had not been taught how to write a curriculum, let alone do so on the fly with the kids sitting in front of me.

I walked into five different classrooms each day, with nothing but the titles of the three courses.  There sat in front of me, 30 to 39 students in a required religion class.  Almost all of the kids came from Lutheran Elementary schools.  They had had religion classes since they were in Kindergarten.  They did not want to be there! I was scared spitless, but of course could not let the kids know.

Teaching is not as much about having knowledge as it is knowing how to communicate that knowledge effectively.  I knew that I needed to talk about the message without using the church words they had heard when they were seven.  The minute I tried the traditional church words, their eyes glazed over. I had no tools to use to construct lesson plans and structure assessment instruments.

While this so far is all about me, the impact on Mary Ann was clear, especially three years later. This part of our story is complicated and dramatic. It turned out to be a volatile time in life for both of us.

I tried to challenge the kids thinking, to make the message personal, to frame it in language they had not used before.  While the head of the Religion Department, Earl, was a very good fellow, who had set up the room I used for a Seminar style of teaching.  He did not have the time to mentor me, help with curriculum.  I had to do this entirely on my own with absolutely no training as to how to do it. He left after my first year there.

What happened as time went by, was that I began to develop good relationships with the students.  I listened to them, treated them with respect.  As an Ordained Pastor my vows expicitly bound me to confidentiality.  It was safe to talk with me.  The time between classes became the most valuable time for kids to come in and see me.  I became friends with most successful students and the least successful students and those in between.   It was a little like going through high school again, only this time I was popular.

There were challenges of course, this was 1969 and following years.  Someone came in after taking a pill in the bathroom that she thought was bad LSD.  Someone came in and announced that she had just gotten “knocked up.”  There was a lot of Boone’s Farm Apple wine and Strawberry Hill consumed in the restrooms.  There were parent problems, relationship problems.

When I led chapels I tried to be as straight and clear as I could be.  Chapels were a challenge since all 800-900 sat on one side of the gym on the bleachers, sometimes dropping hymnals from to the floor under the bleachers.  One time I put together a Communion Service with the kids help.  There were altar coverings that the Art Department had tie-dyed.  There was Communion bread that had been baked in the Home Economics department.  the Music Department provided a small band, a vocal ensemble, soloists, doing popular songs that had words compatible with the message of the day.  “Spirit in the Sky” was a song that was used.  In our tradition, the Passing of the Peace was relatively new (returned from the New Testament worship customs).  The service was a veritable happening.  The kids sat on the floor instead of the bleachers.  When the service was over, the Principal had to get on the loud speaker to get the kids to go back to classes.

Not everyone was pleased with my style.  The Principal that hired me that first summer left by the fall to serve as Superintendent of the Lutheran Schools in Chicago.  The new Principal was not so comfortable with the relational approach that I used.  I caught wind of the discomfort of some, and picked five faculty I thought might be unhappy with my style.  I met with them one on one.  Four said they thought I was doing fine.  The fifth blamed me for every social evil including the Pastor of her congregation who had not been very helpful when her Dad died.

It was April of my third year of teaching that it happened.  More tomorrow.

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.

 

June 28, 2010

“I Hear It Was a Rush Job”

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An older cousin of mine came through the greeting line downstairs where the reception was being held after the wedding. Once she said it, she realized what she had said, but my classmates standing next to me had a great time with it. I immediately responded, well, we have been going together for three and a half years and engaged for six months — and I almost said, and she is not pregnant.  The Cousin was talking about the short amount of time we had to do the preparations for the wedding with only a few weeks from October to December.  I always wondered how many of the wedding attendees were surprised when that first baby didn’ t come until over three and a half years later.

The wedding itself was as beautiful as any, even though it was done on a very low budget.  We were old enough that we didn’t really expect our parents to provide lots of money for it.  Mary Ann’s parents did take care of the reception.  It was a cake and punch reception in the downstairs of the church.  The cake was baked by a sister-in-law who was a phenomenal baker.  She made wedding cakes out of her home as  a small business.  That was her wedding present to us.  Mary Ann’s Mother was an excellent seamstress. She made the wedding dress, and (I think) the bridesmaid’s dresses.  Since it was Christmas the Bridesmaid’s dresses were red velvet.  Since we couldn’t afford flowers, they held white muffs.  The church was decorated for Christmas with trees and lights.  We did provide a couple of flower arrangements (or somebody did), as well as the flowers Mary Ann held.

Instead of a photograper, one of our friends just took slides of the wedding.  We did rent tuxes, at $5 each.  I think that was the going rate during those years.  We decided that there would be no family members in the wedding other than Mary Ann’s Niece Diana.  At thirteen she was the oldest of all the Nephews and Nieces and especially close to Mary Ann.  Since we were both the youngest in our families with a total of seven older siblings, all married and with children, we knew we could not ask some and not others — so we just asked none of them.  Anyway, if Mary Ann’s brothers had been in the wedding, who knows what those Mizel boys would have pulled.

After the wedding and reception, we packed up our stuff, including all the presents and headed off for our exotic honeymoon.  It was the Joliet Inn, a very ordinary motel in Joliet, Illinois, although it did have a Honeymoon Suite — a room with a four poster bed, otherwise like any other room.  Joliet was about an hour from Aurora.  We decided to go crazy and instead of driving all the way to St. Louis (only about a five hour drive) we stopped at the Lamplighter Inn in Springfield, Illinois, another very ordinary motel, possessing no honeymoon suite.  That was the extent of our exotic honeymoon. (…but just wait)

Mary Ann had insisted on taking the presents back with us unopened so that she could take her time opening them in our first apartment in St. Louis.  She got some grief from a few folks who wanted to see that ritual.

There we were, Mary Ann, me, the presents and the cockroaches.  Somewhere I have the picture of Mary Ann in her bra and girdle (it was the 60’s) standing on a chair, while I crushed a cockroach with her shoe.  It was so big, at first we thought it was a mouse.  The cockroach was fully as long as the heal on her loafer, the weapon of choice. It was a first floor apartment in an old, but stately looking building.  We were just about the only Gentiles in the building.  There was a Mezuzah on the doorframe from the last owner. A Mezuzah is a little container with a tiny scroll in it with what is called the Shema, written in Hebrew.  I still have it somewhere.

The was good news and bad news about being in a first floor apartment.  It was easier to carry things into, and it was cooler in the summer than the third floor apartments.  The bad news is that all the cockroaches living in the basement had easy access and could be heard running around the kitchen during the night.  Getting up at night and turning on a light in the kitchen was a pretty frightening experience.

We were located in an especially beautiful area of St. Louis, just off Wydown boulevard. One of the prettiest pictures we have of Mary Ann is of her face in the middle of a flowering Crabapple in full bloom in the wide median of the bouldevard. Just north of us were huge homes of the very wealthy.  There was a nice Jewish deli and grocery near the apartment, which for some reason did not have a pound of bacon when I went there to get it. I wonder what that was about??  The Velvet Creme Ice Cream store was not far, so we were all right in that regard.

About two weeks after we were married, I came home from Clark Peeper Office supplies where I worked part time all three of the Seminary years we were in St. Louis, and I knew immediately when I saw her face what had happened.  There were tears streaming down her cheeks.  The phone call had come telling her that her Dad just died.  He had been suffering from Nephritis (Kidney Disease) for some time, and was very weak but determined to walk her down the aisle at the wedding.

That was a terribly difficult time for everyone, especially all the Mizel family.  Mary Ann was very close to her Dad.  She and her Mom were just enough alike that they were sometimes at odds with one another.  While Mary Ann could never seem to please her Mom, she was the apple of her Dad’s eye.  It was hard for Mary Ann to deal with that so far away from the rest of the family.

Getting married was very good for my grades.  They shot up to what I had been accustomed to getting almost immediately.  I remember that the first summer we were married was very lonely.  Since there were almost no other married students staying in St. Louis for the summer, and we knew no one else.  We spent many a lonely Friday evening wishing we had friends to do things with.

That summer also included one of the best experiences we had in our years with each other. It turned out to be the honeymoon of our dreams.  More about that tomorrow.

Today began with an early walk again.  It is encouraging that I was able to actually appreciate the beauty of the cool morning, the clouds, the birds.  Each morning that I have walked, there have been some moments without pain, moments that at least suggest the possibility of some level of healing some time in the future.

I came back to do the usual morning chores, providing a bit of order to my day.  I ran to the bank for a moment, but otherwise worked on thank you notes.  It is a slow process, but satisfying.  It draws me into a sense of community and belonging as I think about the people in the stands who have been cheering us on especially during the last years of our journey together.

Eddie came, picked me up, and we headed to the Red Lobster for lunch.  Eddie lost his wife to Alzheimer’s many years ago.  He is now very happily married again to a favorite of Mary Ann and me, Carol.  Eddie has been helpful to me whenever we have talked.  He has questions that help me process what we have been through as I try to respond and make sense of it.  The common experience makes it far easier to trust and be open about what went on and how each of us dealt with it.

I returned to meet with a furnace installer to arrange for an upgrade to a high efficiency unit with a segback thermostat.  That will be installed about a month from now.  The afternoon and evening has again brought with it more of the painful moments.  I have chosen to try to keep from winding down into the deep sadness that has a steady presence in me.  It was a little difficult to keep the sadness at baywhen looking at pictures that helped me remember some of the details of the wedding.  That was so long ago.  Both Mary Ann and I have commented that we had the sensation that we were looking over our own shoulders watching ourselves go through the motions at the wedding.

For now, I hope to get to bed a little early and get to sleep.  The mornings are better and the evenings worse, so my goal is to shorten the evenings and lengthen the mornings.

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.

 

June 27, 2010

“One Foot in Front of the Other”

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Tough day.  Sunday afternoons — I knew it, I remembered from when I was at college missing Mary Ann on Sunday afternoons.  I found out today, that apparently what I am going through has some similarity to turning 13.  I went to a musical titled “13” this afternoon.  It was written by kids and performed by kids.  It was a wonderful distraction until I realized that what the kids were saying at the end fit not only the crazy change that comes at 13, but a change that has come with the end of one life as I have known it, and the beginning of a future about which I have no clue.  Here are some excerpts from the lyrics of a couple of songs that came at the climax:

If that’s what it is
Then that’s what it is
You’re probably right to just forget it
Lets face it you’ve worked so hard and now you’re scarred
And free of any hope
I guess you should mope
Forget what you’ve planned
Hey, I understand

If that’s what it is
Then that’s what it is
Though that’s not the way I choose to see it
I have my own view that works with all these jerks and unenlightened fools
I make my own rules, I do what I can
If I hit the wall then maybe its all a part of the plan
Tomorrow will come, today will be gone
And so I put one foot in front of the other
One foot in front of the other
And just keep walking on [from “If That’s What It Is”]

Day turns, today turns, today turns, today turns, today turns, today
And I’m a little bit older
A little bit faster
A little bit closer
A little bit
Day turns, today turns, today turns, today turns, today
And the sky goes blue
And the sky goes black
And no matter what you do
You can’t go back
You go day into day into day [from “A Little More Homework”]

The message hit home since I am exceedingly vulnerable a the moment.  The main character is a Jewish boy preparing for his Bar Mitzvah.  God plays a role in his thinking.  The message is not unlike the core of the message of the Christian Gospel.

The pain reached a new level of intensity for a while this afternoon.  The harsh reality that what is, is, and I can’t change it keeps trumping all my attempts at doing all the proper things to get through these days.  No matter what I do to make it better, it doesn’t get better.  That is exactly what I have to come to terms with.  I have to do this to make my way through it to the freedom to live with joy again.  And yes, that will mean just putting one foot in front of the other.

The morning went well.  I did make it to the 8am worship service.  I did spend time talking with folks I have known for many years and come to love.  I hung around as long as I could, but finally, I had to head home again.  Then I did the usual chores, fed the birds, watered lots of plantings around the house, did a couple of thank yous, read and responded to a couple of emails.

I was grateful to have the option of the musical available.  Being alone would not have been a good thing.  I sat behind the parents of one of the actors, all who are members of the church I served for so many years.  I enjoyed talking with them and watching Caitlyn sing and dance.

The kids did a great job in every respect.  As the climax came and brought resolution and discovery, what I heard seeped into what I am experiencing.  I was able to keep from revealing in any way what I was feeling, but it took every ounce of my resolve to accomplish that.

After leaving there, I did not want to go home to that damnable empty house — even with it’s waterfall (for which I continue to be very grateful).  I drove over to the local university Art Gallery, to discover that it had closed ten minutes earlier.  I just got gasoline, a coffee refill and headed home.

There was a phone message from a former parishioner and friend who has been through what I have just gone through.  After supper, I phoned him and had a very helpful conversation.  He is coming over in a couple of days for me to do some venting with someone who understands without my needing to try to explain the intensity of what is going on.

At various times through email or phone calls, three lunches and an afternoon coffee are now on the calendar in the next three days.  I am grateful for all the help that is being offered and am not too proud to accept it.  It is hard to have been a Caregiver in both the Ministry at churches for forty years and with Mary Ann for most of the the twenty-three years of her illness, and now be in the role of accepting help from others.  I have felt it a privilege in the past to have people let me into their lives to minister to them.  Now I get to give others that same privilege.

A theme in the song “A Little More Homework” is:

If you stand here behind me
And you call me a man
And you’re counting on me to come through
You should know that I’ll give you the best that I can
But we all have a little more homework to do

I certainly have a lot to learn.  I have a lot of homework to do, like it or not — and I don’t!!  I would like to claim that I am going through this so intensely because I have chosen to learn from it.  That would be a lie.  I am going through it so intensely because I have no choice.  It is what it is.  I hope to find new levels of understanding through this experience.  In some odd way, the pain is a gift from God, to break open my heart so that He and those I care about will have greater access.  Now, I am just longing for healing.

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.

 

June 26, 2010

Where’s the Beep?

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Her name was Clara.  She starred in one of the great commercials of the last century.  It was a Wendy’s commercial.  Clara was 81 at the time.  She had a strong, harsh, manly voice.  She stood at the fast food counter a few steps back from it and in as loud a voice as she could muster (which was very loud) she asked, “Where’s the Beef?”  Wendy’s was, of course, making the point that they had more beef in their burgers than those other fast food places.

Where’s the Beep?? That is my question.  I would give almost anything to hear that beep again.  In the last weeks, maybe even months, Mary Ann could no longer manage to get the button pushed.  How I wish she would beep for me to come and help again.  I would give almost anything but not having her back to endure what she endured toward the end.

Not long before she died, I complained of all the beeps in our house.  Her pill timers at one point both went off one every two hours and one every four hours.  I used to see if I could push them at the exact same moment when setting them to see if I could get them to go off at the same time when the four hour and two hour times coincided.  I could sometimes do it.  I was so proud.

Then, of course, there is the microwave that beeps when it is done; the stove timer than beeps when the food is done; the oven beeps when it has finished preheating; the washer beeps when it is done; the dryer beeps four times, then later cycles a couple of times and beeps four times again.

Then there was the button.  There were actually four buttons placed in different locations, the living room by her chair, the bedroom by her bed, each of the two bathrooms within reach of the toilet stool.  There was one receiver that made two different electronic doorbell sounds depending on which button was pushed.  She was to push the button if she needed me.  It was a way for me to be out of sight doing something else while she was doing whatever.  The buttons provided me a bit of freedom.  When I heard the doorbell sound, I could come and help her so that she wouldn’t fall.

When the kids were all here, we were doing load after load of clothes.  The washer and dryer were going constantly.  After I commented on how tired I was of all the beeping, Micah turned off the beepers on the washer and dryer.  At one point after everything was over, I said that I never wanted to hear a beeping sound again.  I have now turned the washer and dryer beepers back on, and I wish, how I wish the doorbell sound would bring me back to her side.  Today, Micah took the buttons and the doorbells, along with the lift, the commode, the transfer chair, a shower chair, the support handles that were around the toilet stools, the ramp, the hair washing basin, and the ramps so that they can end up helping others (Craig’s List, Freecycle).

Every once in a while when I looked at the end coming from a distance, I wondered if I might get over her loss too quickly.  What was I thinking????  My usual pattern has been to live in the present.  I have never wanted to go back, once I have taken a step forward.  Not now.  I can see that this seems likely to take a very long time.  I remember often hearing people say that they had trouble when they would come upon something belonging to the Spouse who had died.  I empathized with them, agreed with them than it was a hard thing, assured them that it was very normal.  While I meant what I said, I didn’t appreciate just how powerful those little reminders would be for me.  Today I was getting rid of some old T-shirts to make room for some new ones.  The first two I grabbed were ones that we had split down the back when we could no longer move her around to put a shirt on over her head.  It is painful right now just telling you about it.

There is a bit of a pattern that I have observed in how the last few days have been going.  The first third of the day is more okay than not okay.  I usually am fairly busy doing things.  The middle third of the day has okay and not okay woven together in equal parts.  The last third of the day is more not okay than okay.  The pain is there most of the time, sometimes almost overwhelming.  These are not clean segments.  Any time of the day I can be okay, then not okay, then okay, then not okay again.  Right now “not okay” holds the strongest position.  I long for the day when “okay” will assume the place of prominence.  As I said last night, at the moment that day is nowhere in sight.

This morning I got up very early and left the house by 6:30am to walk at Cedarcrest. When I got home I showered and headed off for the Farmers’ Market.  What a busy place.  It must be two or three times the size it was the last time we went a couple of years ago.  There are food vendors, craft vendors as well as the vendors selling fresh produce.  I bought beets (with the greens), a freshly baked scone, a bottle of BBQ Sauce (Uncle Sunny’s), a breakfast burrito, five pounds of local honey, and a small vase of flowers (now that the funeral flowers are gone). The bright flowers lifted my spirit a bit.

I took all those things home and then went back out to Penney’s to pick up some shorts, T-shirts and short-sleeved dress shirts.  The shorts are Lisa’s suggestion.  She made the point that it was no wonder I was hot since I always wore jeans, hiking boots, a T-shirt and a casual shirt over it.  See, I can listen.  (You should see those shorts with the hiking boots — not really, I switched to tennis shoes.)

The dress shirts seem to me to signal one of the changes in my pattern of life.  I got them so that I could dress more appropriately for morning worship services.  When I was caring for Mary Ann, I didn’t care much what I looked like.  The Evening Service is “come as you are.”   I had a single center of my activity and purpose in life – taking care of Mary Ann.  Now I am being forced to look again at who I am and what I am about.  One thing is for certain, I need to be with people.  The morning worship services allow more interaction time with people who after so many years have become like family.

I made a another trip to the grocery store for something I missed yesterday.  I noticed that I am also now needing to engage people in conversation.  I noticed an accent in the speech of one of a couple of folks I ran into three or four times in the store.  She was from Germany.  I could practice the one sentence in German that I know.  It is the one that says that my Mother was born in Germany.  When I engage people in conversation, strangers or otherwise, I feel better.  They may be annoyed, but I feel better.

I worked some more on Thank You notes, then Micah came over to pick up the items from the garage.  We talked about a variety of things, but some of our conversation was processing candidly what we are experiencing and how we are trying to deal with it.  It was very helpful to me.

This evening Don and Edie had invited me for dinner.  As always, it was a great dinner with lots of good conversation.  All the activities today helped provide some normality.  The undercurrent and plenty often bubbling to the surface of the pain remained, but it helped to be pulled away from it so much of the day.  It still hurts as much as ever.  A good day doesn’t fix what I am going through.  It is not fixable.  A good day is still better than a bad one!

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.

 

June 25, 2010

Nowhere to Hide from the Pain

Posted by PeterT under Daily Challenges, Family, Help from Others, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , |
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This is way harder than I ever imagined it could be.  I have counseled people, comforted people, ministered to people who have been in this kind of pain.  I thought I understood, felt their pain.  I had no idea just how much it hurt.  I saw it in their eyes, felt it in their tears, heard it in their voices.  I had no idea the intensity of the pain I was seeing.

Friend John from KC called to check on me.  I told him that I was grieving appropriately, keeping my reactions in check, only having allowed one evening of tears.  Daughter Lisa called to check on me.  I was writing thank you notes at the time she called, listening to a CD of Mozart (a gift to Mary Ann from Young).  Just as Lisa phoned, the piece of music that had started playing was a vocal solo with a voice much like Kristen’s (who sang at the funeral), singing Laudate Dominum, the very piece Kristen sang.  I did not react other than in my gut, but that reaction was painful.

If I were counseling myself, I would tell me that it is way too soon to expect any diminishing of the pain.  In fact as everyone, including me has said, it gets harder after the initial flurry of activity comes to an end.  I would tell me that.  I would be right.  So, what difference does it make to tell me that.  It still hurts like hell.

I now appreciate just how courageous all those people are who have gone through this and survived to live again.  Now I understand.  I can only hope that I will find similar courage.  I am confident that I will be fine, come to life again.  I just don’t have that time in sight yet.

I am currently planning on writing two posts tonight.  This one is about my struggle.  I just could not sit down and start writing about Mary Ann’s and my history together (the second post I plan to write tonight).  I needed to release some pain in words.  I can assure you, if you have not yet tired of it, you will soon tire of me whining about how much this hurts.  Almost everyone I have counseled during times like this has commented on how hard it is to find people willing to listen after a while.  People just tire of hearing the same sad story of how much it hurts.  If they don’t actually say it (sometimes they do), they are thinking, “when is he/she going to get over this, they have been whining too long.”  The problem is, it still does hurt, long after everyone else thinks it shouldn’t any more, that he/she should be getting on with life.

The harsh reality is, no amount of talking, thinking, praying, meditating, writing, crying, walking or eating ice cream is going to take the pain away.  It will have to run its course and find a tolerable spot to live in me as life goes on.

At this point, too much quiet, alone time, as much as I have relished it in the past does not seem to be a good idea.  I suspect I am more in need of social interaction than solitude.  In social settings a holy hypocrisy takes over.  It calls me to be better than I feel, to be okay even if I am not.  I don’t feel okay, but if I wait until I feel okay to re-enter life and function normally, it will be a long time in coming.

I got up early this morning and went to Cedar Crest again to walk a couple of miles.  It was a cool morning, blue sky with whispy white clouds, some with little puffs in rows.  The birds were singing again, Meadow Larks, Robins, Blue Jays, Red Winged Blackbirds, a Great Blue Heron and more that I didn’t recognize.  What appeared to be a Green Heron flew over at one point.  They are far less  common than the others.

I did some chores, changed the linens on my bed, washed them along with the few things I had in the hamper.  I am going to have trouble getting enough for a load of wash and filling the dishwasher full enough to justify running it.  I fed watered plants and fed the birds.  The routine tasks help give me a sense of accomplishment, however insignificant tasks are.

I made a necessary trip to the grocery store.  It felt strange to be pushing only the grocery cart instead of pushing the wheel chair with one hand and pulling the cart with the other.  I bought nothing frivolous, but it came to $75.  What does one person need with $75 worth of groceries.

Even though I have only done a small percentage of the thank you notes, I am glad to have gotten started.  As I suspected, that is a therapeutic activity, if sometimes a little sad as memories are triggered.

Writing about the intensity of the pain has helped take the edge off.  Now I am ready to write some more about Mary Ann’s and my life together.

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.

 

June 23, 2010

“The Day the Dam Broke”

Posted by PeterT under Daily Challenges, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , |
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It is the name of a movie and what happened at our (my) house last night.  I set the stage in a way that would allow it to happen.  I needed for it to happen.  It changes nothing.  It just needed to get out.

After finishing writing last night, I did a few chores and then got out the box of letters I wrote Mary Ann.  I put on the CD that had brought me to tears months ago when we first realized it was time to call in Hospice.  I read a few of the letters.  Actually, the letters did not tap my emotions.  They are pretty boring.  I ramble on about Greek tests and singing groups and learning recitativs for someone who couldn’t sing the solos at the last minute.  Each letter so far, and I am sure all of them, end with declarations of love in as many different ways as I could figure out to say them.  I have read eight of the letters so far.  Understand, for three years, except for summers when we could see each other, I wrote her a letter every night.  (No wonder I have gotten into this blogging every night business.)

Remember, I was nineteen or twenty years old and very much in love.  They sound like something from a bad romantic movie.  The only redeeming element is that I really meant what I was saying: “I don’t know how to tell you just how much I love you and miss you.  I can hardly believe it myself.  I love you.”  Then another: “Even if you didn’t love me — I love you enough for both of us.”  I will spare you any more for now.

It was not the letters. Certainly the music lowered my defenses and helped me let go of my control.  I just pulled down a picture of the two of us from a year or two or three ago.  It is the one that was cropped for the obituary.  I looked and I remembered the indignity of it all.  I remembered what she endured looking from the outside in rather than from inside the struggle.  I could not tolerate the thought that she is gone.  I spoke out loud because I couldn’t not speak.  In a moment of self-pity, I asked “Why did you give her to me to love and then take her away.”  I was angry — not out of control angry, just angry.  “It’s not fair that she should have had to suffer so — she did nothing to deserve it.”

Please understand, I realize that God doesn’t like death and sickness any more than we do.  I realize that God understands death from the inside out and the outside in.  God didn’t wish for Mary Ann to suffer, for me to be in pain with her.  What God did was hang in there with us through it all, never letting go of us.  Understand also that God’s relationship with us is strong enough and intimate enough to allow anger to be a part of it.  I needed to be angry at that moment.  Read the Psalms some time and see just how many are laments spewing anger at the unfairness of life.  Pastor Mike addressed this matter at the funeral.

Noisy tears flowed.  The dam broke.  Every time I looked at her face and remembered, the tears flowed.  In an earlier post, I mentioned that I used to count how many times I had cried in my adult life.  The first time was after I got the phone call that my Dad had died.  I was 42 years old.  Until last January, I had not yet run out of fingers on one hand to count the times.  I have stopped counting and will never do so again.

I guess there was some part of me that still thought it was a sign of weakness for a man to cry.  I knew before and I know still more certainly now that crying, actually letting the pain in far enough to feel it, is an act of courage that is demanded if wholeness and healing will come.  Running away from it or pretending it isn’t there or encrusting it in some sort protective casing is hardly the path to strength of character and the ability to endure whatever comes.

There was an interesting coincidence at our Spiritual Formation group this morning.  The lesson in our discussion booklet for this morning was entirely devoted to the need to let go, to die, before we can rise to new life.  The last of the four discussion questions printed at the end of the readings was, “What role does the reality of death and the deaths of those you love play in your life?”  Talk about timing.

Today was a busy Wednesday, as they often have been for some reason.  It started with the Spiritual Formation Group on the deck.  While that was going on Landscaper Sheila was doing her final maintenance of the landscaping she put in this spring.  She will return in the fall to do some clean up and prepare it for winter.  I am on my own for the rest of the summer.  Those plantings are in great jeopardy!

In the mid-morning, Dave came over to get a couple of death certificates and obtain the signatures needed on a variety of forms for the financial issues following a death.  Then Kristie came over to do the monthly house cleaning.  Now the house is not only empty but empty and clean.

I did some overdue posting in the computer check register while she cleaned.  It will take a while to get my bearings in that arena.  Everything seems to be on course.  I have configured the online emails from the Caregiving Spouses of those with Lewy Body Dementia so that I have to go to the web site to read them.  As a result, the hours I have spent checking emails have pretty much been eliminated.  I just can’t read those emails at the moment.  It takes me right back to something from which I need a break for now.

I had leftovers from the funeral dinner for lunch and dinner.  Next I will start on all the containers that Lisa put in the freezer when food was coming in faster than we could eat it. It should be many weeks before it is necessary for me to exercise my culinary skills.

I decided it would be best to get out of the house for a while, so I made a quick run to pick up a couple of things.  One is a zippered cover for a pillow.  No amount of soaking in Oxy Clean or spraying with Spray and Wash is able to get the stains out.  Mary Ann was taking Plavix and Aspirin to thin her blood because of her stroke.  Often her gums or nose would bleed a little during the night.  The pillow is certainly clean, and now it looks that way also.

The house is becoming very neat and orderly and boring.  I still hope to at least get my office, which is a complete shambles, cleaned up.  That happening would be right up there with the Miracle of the Loaves and Fishes.  Actually, I suppose my problem is that I have the twelve baskets of leftovers and nowhere to put them.

Here are the ideas that I have seen so far for the title of a new blog to replace this one: newlifeemerging.com; calltocontemplation.com; buildingnewlife.com; next chapter; life after retirement; thecontinuinglife.com; my journey continues; life’s journey continues; a new role begins; continuing life’s pathway; making new memories — remembering the old; progressive pathways; pathways of personal progression; day by day; heading home; homeward bound; faith journal; moving on; stepping stones (to healing).

By the way, whatever it is, it needs to be in the .com format and checked with a site like godaddy.com to see if it is available or already in use.

Well, this day has come to an end.  As I mentioned to Son Micah, the challenge is to manage the pause and stop button on the video running in my mind of Mary Ann’s most difficult days including the last one, so that there will be minimal flooding from the broken dam.  Today was better.

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.

 

June 16, 2010

Shedding Signs of Parkinson’s Presence

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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I just couldn’t stop and go to bed.  I needed, I NEEDED, to empty the bedroom of everything I could find that reminded me of what we have been through with the Parkinson’s .  Gratefully, the Hospice folks had taken all the medicine bottles and the items they brought that were of no further use to us now that Mary Ann is free of the damned disease.  It did its worst, and she still won.  She has let go of it so that it has no power over her any longer.  She has a life that is as free as a butterfly, a favorite image of hers, especially in the early years.

I am not about to let the Parkinson’s Disease and the Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) remain the dominant feature of our lives any more.  Pretending it never happened would be silly and deny who we became as we faced it down and refused to let it steal from us meaning and joy and fulfillment.  With that said, I don’t have to allow it to come along any longer on my journey, just as she no longer has its company in her new life.

For both of us, we now are living life after Parkinson’s.  I stripped the bed and put on fresh bedding.  At this point, I don’t even remember all the things I threw away — nothing that needed to be kept any longer.  Finally, I went to bed.  It was a fitful sleep, up a couple of times, now for no good reason.  This morning beginning at about 4:30am, my mind started working.  Every time I thought of something that I needed to do, I got up headed down the hall to my office, wrote it down and came back to bed.  I did that four or five times between then and a little before 7am.

Today has included lots of tasks.  Throughout the day, I have been reading comments on this blog and on Facebook that have provided comfort and the recognition that we are not going through this alone.  We have welcomed more food and enjoyed eating part or most of much of it, while freezing for later what we cannot consume now.  There are some really fine cooks in our circle of support.  I was able to get a much needed freely given haircut from friend and former parishioner Doug this afternoon.  Marikay’s Volunteering with Mary Ann was doing her hair there at their shop.

Son Micah wrote the obituary for us this morning so that we could take it with us to meet with Pat the Funeral Director working with us.  As I mentioned in last night’s post we were treated more like friends than clients as we went through all the necessary steps.  Having made the arrangements in advance seven years ago, it was a relatively painless process.  It still took a couple of hours to go through all the paperwork that is required.  The web site with Mary Ann’s obituary is http://www.penwellgabeltopeka.com.  Enter Mary Ann Tremain in the search box and then when her name comes up, click on her name to see the obituary.  I think the link we provided on Facebook will take you right to it in one step. Having done the pre-need plan at the cemetery, that visit was only a few minutes.

We stopped at church for a while.  The Staff there was a sort of family for the over twelve years I served there.  They listened as I shared the daily struggles.  They provided a wonderful, nurturing community.  We dropped off what has turned out to be an elegantly done, indescribably beautiful book mark that will serve as a thank you to those who have volunteered in any way to help Mary Ann over the years.

The main reason for stopping at the church was to talk about the music with Young, the Director of Worship and the Organist.  She led us to the balcony and sat down at the console to play some of what she will use as processional and recessional music as well as a hymn prelude and accompaniment.  I have absolutely no defense mechanisms capable of deflecting the power of a full organ playing music that simply soars heavenward.  It is not sweet and gentle or somber and sad.  It is energizing and thrilling and victorious.  I simply melted.  Each time she stopped and asked if that was all right, I could only nod, yes.  I could not talk.  I am in real trouble as far as trying to keep my composure on Thursday is concerned.

Later in the afternoon, I was by myself with some time to fill between the cemetery trip and the haircut.  I stopped at Lowe’s to look for some much needed deck chairs and a hose caddy.  I wandered into Barnes and Noble just to spend time before going for the haircut.  I got scared, especially when I walked around Barnes and Noble.  Everything that has given me purpose for my lifetime up to now has ended.  I have completed a career, I am done living with and caring for Mary Ann.  She is even what I have written about, her care the content of the blog.  I got scared about what I will do when the funeral and memorial up north are over, the house is in order and the thank you cards written.  Will I be wandering about aimlessly, a pathetic old man with no where to go and nothing to do.  It just scared me for a moment.

With that said, I will be fine.  Very many other people who lose a spouse after retiring have exactly the same problem.  “What do I do now?”  Gratefully, there will be time to think about that later.  Right now, there is a lot that will be going on in the next couple of weeks.

When I returned home after the haircut, Son Micah had orchestrated the removal of some of the bigger items in the house because of the Parkinson’s. I had shared with him earlier my need to rid the place of all the signs that it was ever present.  They took up the protective mesh from the ceramic tile floor in the bathroom.  We put it down after Mary Ann did some real damage in a fall.  They took up the matting for the same purpose in the garage.  The rolling shower chair, the wheel chair in the car, the support handles around the toilet stools were all removed to the garage for the moment.

Yes, part of it is that I need time to forget the horrible sight of Mary Ann suffering so much at the end.  I need not to remain immersed in remembering and focusing on the caregiving tasks of the last decade.  I need to remember Mary Ann, the person, “a force to be reckoned with” someone said, and a wonderful, exciting life’s partner.  Yes, we have been shaped by responding to the challenge; we have grown.  At the same time, we are far more than the disease.  I want to remember the “more.”

Now that she is gone, I have nothing to write about.  While I try to decide whether to just stop writing, I will describe and reflect on what is going on during these first  transitional days.  I will write a post or two on the beginnings and development of our life together.  There is a huge hole filled with pain right now.  I need to remember, reconstruct the memory of that life, lift the fog of the Parkinson’s so that the wonder of it will reappear.  I expect what I write to be boring and self-serving, but that is just the way it is.  I started writing these posts each night to find the perspective I needed to survive, to make some sense out of something that makes no sense.  I hoped they would help anyone in similar circumstances who happened upon the blog.  I have been blown away by how many have become a part of our journey in the past couple of years and especially the past few weeks.

As little as I could predict about what we would encounter day by day as we fought the Parkinson’s and the Dementia, I know even less now about what will come next.  Mary Ann is experiencing a spectacular new beginning beyond our knowing.  I am also experiencing a new beginning.  As cliche as it is to say it, today actually is the first day in the rest of my life. So far I am not liking it very well, but given time, that will change.

Plans are now final.  The Mary Ann’s funeral will be at 11:30am on Thursday at the church with a visitation at the funeral home tomorrow evening from 6pm to 8pm.  She will lie in state there from 2pm on tomorrow.  We will have private family time with her at noon. She will lie in state at church an hour before the funeral.  There will be a meal afterward at church to which we hope as many as can attend will come.  On Friday we will have a very short inurnment service with mostly family at the graveside.

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.

 

June 2, 2010

Almost No Food in Four Days!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  It is time to sleep.

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.

 

May 30, 2010

Losing Ground?

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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I am just not sure how to assess the day, but I am sure I don’t like it.  The signs pointed to the hallucinations firing up last night.  She was restless at first.  The hallucinations fired up between 3am and 4:30am.  Then she slept for a while.

She did try to get up early, but when I took her to the bathroom, she fainted.  I had to put her back into bed and she slept for a while.  There has been a pattern that has played itself out all day.  When she is lying down, she has often been talking apparently about or to the hallucinations.  I described that before. She often has her eyes open when she lying there talking.

When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her.  She simply could/would not respond.  I had to put her back into bed since there was really no other option.

She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly.  Once this evening when the words she used were recognizable, they did not match what she wanted.  She said she needed to cook a meal, when it became clear that she intended to say a drink of water.

[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty.  I fed her a few spoons of yogurt before she just didn’t take any more.  I found out shortly thereafter that the last bites had not been swallowed.  As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid.  Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it.  This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.

The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself.  To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable.  That has been continuing for many days now with no sign of improvement.

All of this is becoming a very old story to those of you who read these posts regularly.  What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines.  It seems that every few days something worsens.  The changes seem too rapid to me to be a normal part of the disease process.  In my mind the evidence still points to medication issues for the rapidity of the decline.  The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results.  The same med can produce opposite results in different patients.

I may simply be in denial and the rapid changes may just be a function of the disease.  As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.

Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds.  Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations.  Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving.  It is not so much life threatening as it is that our system here at the house is being threatened.

One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house.  Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again.  When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche.  This morning while Elaine was making her Quiche for us, Tamara brought two more.  Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day.  I ended up eating a couple of pieces of one and one piece of another by the time the day was over.  They all appear to have home made crusts.  They are wonderful.  One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.

I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.

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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