Daily Challenges


There were eight of us.  Mary Ann left and there were seven.  Now there are six.  Today Marlene ended her journey here with us.  The eight of us met in 1972 when we moved to Prairie Village, Kansas, and a male child was born in each household.  Each of us also had an older girl.  We spent the next fifteen years in the same congregation with lots of folks who became friends.  Three couples had pretty much grown up together and all became fast friends at college.  As time went by, Mary Ann and I were sort of adopted into the group.  A couple of times we vacationed together, even after we had move to Oklahoma City.  The relationship continued through the nine years in Oklahoma and the last fifteen years here.   

While Charlie and their Daughter and Son and families are the hardest hit and own the grief at Marlene’s departure, we were close enough, like family, that the place where the grief and sadness live in me has stirred.  Bad planning on my part combined with Friday afternoon traffic resulted in my missing the time at the hospital when the life support was removed.  I did make it to the house to spend just a few minutes with Charlie, his Daughter and Son-in-Law.

Marlene and Charlie went to Mayo Clinic fourteen years ago and heard the diagnosis and prognosis, “Go home and get relationships in order, make peace with God.  Marlene will live two to five years before the ALS takes her.”  That was fourteen years ago!  She died today.  Charlie and I observed today that we both had married people with powerful strength of will.  From our vantage point it sometimes seemed like stubbornness.  Both of them defied the odds and lived with dignity far beyond reason given the ravages of their diseases. 

A little over two years ago, I decided to retire to take care of Mary Ann full time.  In the letter to the Congregation, I quoted an email Charlie sent me when I first announced my decision.  About two years earlier, Charlie had retired to part time work to take care of Marlene.  Charlie wrote:

“I’m pleased to hear that you have reached your decision. The decision you faced was not “if” but “when”. Now that you have come to the conclusion that June 30 will be the date, you will have time to acclimate and I’m confident that over time you will become more comfortable with your decision to put family first. Keep in mind that serving as a full time caretaker for Mary Ann is not only a duty, but an honor – no one else knows her as well as you and no one else could do a better job. We pray that you will find your new role fulfilling.” 

As Charlie predicted, I did find that role fulfilling.  It was truly an honor.   I have no doubt that it is so for Charlie, as it is for me, we would chose to do it again without a moment’s hesitation. 

I discovered decades ago that when a loss comes, it is compounded by any earlier significant losses.  The losses accumulate.  As I drove over in hopes of making it to the hospital in time, the feelings stirred and the deep sadness was exposed.  At some level, I will be dealing with my own grief as Charlie and his family deal with theirs. 

All of us who have known Marlene recognize what  a remarkable person she has been.  Not only did she deal with her disease without complaint, but she continued to focus on others.  She always voiced much concern for Mary Ann and me in any interaction.  She turned away from herself and toward others.  As Charlie noted in our conversation, it is probably one reason that she stayed so strong so long. 

Mary Ann and Marlene shared a perception of their respective realities.  Neither of them accepted the fact that they were sick.  They lived as if there was nothing wrong with them.  Now they are both done with their battle here.  They are fine.  We are not.

Monday morning will be the funeral.  It will be a hard day for all of us.

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This afternoon, I went to see Manheim Steamroller’s Christmas Tour performance at the Performing Arts Center here in town.  The Season of Thanksgiving/Christmas/New Years’s is already beginning.  The Christmas Music is arranged in accord with their usual stylized form of light jazz/New Age music. 

It is the first Christmas activity in the new configuration of this season of the year, without Mary Ann.  I already don’t like it, but that is just the way it is.  The performance made use of every imagineable sort of sound that can be produced by both unplugged and electronic instruments.  The volume was powerful but not painful.  The visuals on the screen behind the performers sometimes included actors and dancers dressed in period costumes providing a visual story to go along with the music being played.  Sometimes it was hard to tell what were previously recorded sounds and what was coming from the people on the stage.  They were perfectly coordinated. 

Since music has the ability to bypass my defenses, for a time it was pretty emotional.  I let the feelings have there way, but they never broke through to water running down my face — close , but not quite.  I can tell that this season will just not be very easy to negotiate.  I remember that it was already pretty tough last Christmas.  In fact, since retirement, there has been a part of me that just wished we could skip December and go right into January. 

It was helpful that after the concert there was a gathering of the folks from the Hospice Grief Support Group at the home of one of the members.  While we did not talk about the challenges of dealing with the holidays since it was just a social get-together, being around folks who are in similar circumstances was comforting.  Going to an empty house after the concert would have been pretty difficult.  

Before the Parkinson’s moved into the later stages, Mary Ann was a master at doing Christmas.  She had to learn to manage without much help from me since it was the busiest time of the year as a Pastor.  She started buying gifts some time early in September.  By the middle of November, she already had a full complement of gifts.  In fact, sometimes she would forget all that she had gotten and keep getting presents after there were already plenty in the closet.  Every once in a while, we had to do an inventory of presents to be sure that the numbers and size balanced out for each of the Kids and Grandchildren. 

I was a spoiled sport relative to outdoor decorations.  She would have loved them, but I just never could get into it since there was so much going on at work (at least that was my excuse).  She always did a nice job decorating the inside of the house.  Her Christmas quilt was always hung in our bedroom, replacing the one with the basket pattern in each block.  The Manger Scene came out with the wise men placed away from the manger until Epiphany came. 

We would often get a Charlie Brown Christmas tree (the Kids always made fun of the trees we picked out).  In early years we went out and cut it down.  Then later we got trees from a Christmas Tree lot (still Charlie Brown trees).  Only in recent years did we finally get an artificial Christmas Tree.  Then came the ornaments, an eclectic variety.  Some years there was a theme in terms of color, but most often there was a wonderful variety of styles and sizes and shapes.  There is the sleigh that my Grandfather made — the cards go in that. 

She loved Christmas so much.  Last year was difficult since she had started the decline.  We were pretty limited in what we could do.  We did manage to get the tree up.  I don’t know yet what I will do this year.  It is hard to imagine bringing the tree up from the storage room, putting it together and decorating it.  I can understand why those who have lost a Loved One struggle so at this time of the year.  So much of what usually is done seems sort of pointless.  The center of the season, the core message remains powerful and meaningful.  The decorations are pretty, but they are not the center.  

The goal will be to focus on the unconditional love of our Creator and the new life offered through the One who joined us in our human journey bringing hope in the face of whatever comes.

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.

It is hard to know where you are if you have no map.  Actually, there is no map.  More correctly, there are maps, but none of them can tell me where I am.  There are all sorts of descriptions of how the grieving process goes.  Some of them, most of them are useful in helping find a vocabulary for talking about grief.  None of them provides an accurate map of where the grief is going, when junctions come, what ways to go when they do, what the destination looks like and where the one grieving is in relationship to it, whatever it looks like. 

There are studies that reveal what people have said about how they feel at certain points in their grief journeys.  No matter how many studies are done, or how large the pool of subjects is, there is no way to predict how any particular person will move through the grieving process.  The studies can provide the average time for this or that, the way the average person who is grieving experiences each step in the process.  Have you ever noticed how unusual it is for the high temperature and the low temperature for a given day to perfectly match the average temps for that day?  It would be pretty remarkable to find someone exactly average in height, weight, hair color, eye color, were all the residents of the US to be included in the pool from which the averages were detemined. 

The grief process is unique to each particular person who is grieving.  The last few days have been puzzling.  There have been times I have felt very good, a whole person again.  There have been times I have felt very much alone, not whole at all, missing Mary Ann terribly.  I remember when Mary Ann and I were trying to manage all the challenges of medications and side effects, the roller coaster ride of daily, hourly, changes.  It became clear that Mary Ann was living right on the margin between being functional and being non-functional.  It took very little to slip from one to the other.   The grieving process, especially early on, is very much like that.  Grief and healing are the shoulders on either side of the road.  It doesn’t take much to drift on to one shoulder or the other.

One of the challenges of caregiving was figuring out where we were in our journey.  We knew where it ultimately would lead, but there were no markers telling us where we were in relationship to that destination.  That was part of the reason that we lived in denial.  It wasn’t so much denial as it was having no clear roadsigns telling us how far we had to go yet. 

If you read the posts that I wrote during the last year and a half of the battle with Mary Ann’s Parkinson’s and the Parkinson’s Disease Dementia you will see three words or phrases used very often.  One is “Margin” as described above.  Another is “Threshhold,” and the third is “New Normal.”  Those words fit how we lived during the toughest years, and they fit the process of going through the grief.

As we walked that narrow margin between functionality and the lack of functionality, there were theshholds that we crossed from one level to another, most often to less functionality.  When that happened, we would have to locate the new normal.  The difficulty in dealing with crossing a threshhold to the new normal is that there was no map showing us where we were on the road.  There were no signs, no markers revealing that a threshhold was coming or that we were crossing it.  The only way we could tell if a threshhold had been crossed was if we looked back long enough to conclude that there would be no return to the former functionality.  We could only identify the threshhold after we crossed it.  Once we recognized it had been crossed, we could get on with the task of identifying and accepting the new normal.  Once that was done, we could then focus our time on accommodating to that new normal — functioning as well as possible in our new location, new normal.

This weekend has brought those three words and phrases into this journey of healing that I am on.  I am moving along a narrow margin bounded by grief and healing.  There seem to have been some threshholds traversed along the way.  I could not see them coming; they were not obvious when I was crossing them.   There were no markers or signs that said, this is where you are.  I have identified after the fact, transitions from one level of functionality to another.  My code language for good health is “wholeness.”  I don’t really know what that destination looks like or if it is even a destination rather than a way to think about the journey. 

It is hard to identify a new normal, in this journey toward healing.  There are no reference points.  Studies can describe pieces of the truth about such a journey, but no one is average enough to fit the descriptions perfectly.  I have to say, that looking back from where I am now, it seems to me that the journey I am on is one of healing.  Healing is seldom free from pain.  I have first hand knowledge of that truth as the saddle sore (my riding trophy) heals slowly.  The pain of grief remains readily accessible.  It is now no longer disabling pain, but pain nonetheless. 

Those of you who read this need to know that what I reveal here about the grief does not shape how I function when I am with other people.  Whenever, whatever threshholds have been crossed, the normal in which I am now living allows me to enjoy other people, laugh and celebrate, enjoy the uniqueness of friends, acquaintances and strangers.  The grief is near, but I remain on the journey to healing.

When taking care of a Loved One who is declining, there sometimes comes a point at which there is a transition from Husband or Wife, Mother or Father, Son or Daughter, to “patient.”  A sort of clinical distance emerges and the tasks are carefully and responsibly and compassionately done with gentle concern.  That clinical distance helps the Caregiver keep from getting lost in the emotions, disabled by his/her own feelings.

Up to the very end, I never ceased to be her husband first and foremost.  There was never any clinical distance.  Mary Ann was never a patient to me.  She was my wife.  The way I kept from being disabled by my feelings was to live in what I have recently described as intentional denial.  There was never any waning of the intimate romantic feelings as she became more disabled.  In fact, if anything, they grew stronger as our battle with the disease got tougher.  Certainly we had all the usual times of irritation and snipping at one another.  That comes with longevity in a marriage.  It means nothing other than that the relationship is secure enough to provide the freedom to be grumpy with one another at times. 

What I will describe next will sound as if it is at odds with what I just said in the previous paragraphs.   What I said above and what I say next are both the truth, even if it seems impossible for that to be so.

After I retired to take care of Mary Ann, I struggled to find a way to feel a sense of accomplishment each day.  When I was working there were all sorts of external signs that I was doing something worth doing, something that had meaning and purpose — a job.  When I retired, everything that had confirmed that I had a job ceased.  One day I had a job as the Senior Pastor of a large congregation with a staff for which I was responsible.  The next day, I was at home with Mary Ann, helping her just as I had been the time I was at home and not at work before I retired.    

There was no tangible evidence that I had worth.  Constant care was needed, so I was working more and harder than when I was actively serving the parish.  There was no paycheck, nor were there people telling me that I was doing a good job.  It took some months and some mental gymnastics (and reflecting on the matter in dozens of posts on this blog site) for me to realize that what I was doing with Mary Ann was not only as important, but more important than what I had been doing when I was working for pay. 

The result of that realization was that the caregiving I was doing became my job.  I came to treat it as an important job, each task needing to be done well, taking all the attention and skill I could muster.  I needed to become expert at it, doing it in a way that reflected back to me a sense of accomplishment. 

Caring for Mary Ann became my job.  When that transition came, I felt as if I was freely chosing the job.  There was no reason for resentment since what I was doing was my profession.

Caring for Mary Ann became my job, but Mary Ann never ceased to be or to feel like my wife.  I was her husband and she was my wife.  I do not deny that what I have just said makes very little sense.  All I can say is that is exactly the way I felt.  For the last two years especially, when I retired to do full time care, Mary Ann was my wife and caring for her was my career. 

I can’t explain to you how it worked, why it worked.  It just did.  I am grateful that it did.  Mary Ann never had to suffer the indignity of being my patient.  I didn’t have to give her up until she died.  I got to have my Beloved Wife with me every minute of our marriage.  The result of doing it that way meant that when she died, it hit very hard.  We did not ease into it.  I did not get accustomed her leaving before she actually left.  It has been excruciatingly painful, but I am not sorry that we did it that way.  Even knowing the depth of the pain, I would do it no differently were we to have to do it again (God Forbid!!!)  Yes, I would try to be kinder more of the time, more understanding, less grumpy, more affectionate, but I would not change the way we approached our relationship. 

I was her Husband and I was her Caregiver.   She was my wife and taking care of her was my job.  While thinking about it that way helped me feel worthwhile, the truth is, caring for her was exactly what it meant to be her husband.  We loved each other romantically, in spirit, in words and in actions.  As devastating as it has been to lose her from here, I feel full of deep joy that we got to experience that kind of love.

That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

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

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

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

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

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

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

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

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

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