January 13, 2010

Eye Problems Emerge

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It was an odd night.  Mary Ann struggled with the hallucinations and restlessness again last night.  I was up late working on last night’s blog post. After settling, she slept reasonably well.  I got up this morning to get her ready for Bible Study.  Her need to sleep trumped her will to get to Bible Study.  It was clear that she would not be able to get up.

I had showered and cleaned up in preparation for getting her ready to go.  When it was clear that she would not be going, I laid back down on the bed, since I had accumulated a need for sleep also.  It was not until almost noon that I woke up.  She got up about forty-five minutes later.  As I was getting dressed she asked if we could use the Visine again this morning.  She had not yet opened her eyes, which is not unusual for her — one of the collection of problems that come with the Parkinson’s and the medications used to treat it.

When she lay down for me to put the Visine on her eyes I saw it.  There was a swelling about the size of a small marble, more accurately, the size of a garbanzo bean (how is that for descriptive) in the corner of her right eye next to her nose.  It looked as if a tear duct might be clogged.

Mary Ann has had problems for a long time with her eyes.  She has had the struggle to open them frequently.  They have on occasion started watering profusely.  It has not been unusual for her to ask for the Visine.  In recent weeks sometimes there has been a large quantity of matter at the edge of her eyelids, usually her right eye.

Today’s swelling precipitated the call to the Ophthalmologist (an Eye Doctor with an MD).  At first the call was a little uncomfortable.  The receptionist seemed almost annoyed that I was calling about an appointment.  She tried to get us to go to our Primary Care Physician or Optometrist first.  I made the point that we would just end up back with the Ophthalmologist.  I had explained what was going on with Mary Ann, and finally she said she would try to talk with the Dr.’s nurse.  Gratefully, when she returned, there were a couple of options for tomorrow.  We will see the Doctor at 2pm.  I was puzzled that from the moment the call began the tone of the receptionist seemed to suggest that I had no business calling to get an appointment. I have met the doctor before, years ago when I had a cyst on an eyelid removed.  She seemed very pleasant and very competent.

This afternoon we had another appointment with Stacey about the remodel.  She brought some great options for window coverings for the new sunroom, and a book of samples of cork flooring for that new space.  The look of the cork, its durability, the warm feel of it, its ease of installation and its ability to cushion a fall have all combined to convince me that the cork is the way to go.  One thing drawing me to it also is that it is not one thing pretending to be another.  Ceramic tile would hurt Mary Ann if she fell.  The laminates look great, but still try to look like something they are not.  There is more deciding to do, but we seem to be progressing.

In reflecting in last night’s post on my retirement and the grief work that needs to be done as I let go of a life-long career and identity, I concluded the post this way:  “I now serve here at my house.  The need here is clear.”   The grief work that is going on at this point in my journey involves letting go of what has been.  It also includes making the transition to what my life is about now.  I suspect that transition is not yet complete.  One of the reasons writing these posts is so helpful is that doing so provides me the opportunity to gain a better understanding of what is going on in my own heart and mind as we tackle the Parkinson’s and its consequences in our lives.  Sometimes my mind is in one place and my gut in another in acceptance, feelings of fulfillment, and finding meaning in what we are doing her together.

The journey goes on, the processing of each experience is another step in that journey.  Just as is so at this time of the year in the thawing streets of this city in Kansas, there are a lot of potholes to be negotiated.

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.

 

January 9, 2010

The best laid plans have aft gang aglay

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The following post was written on Thursday, January 7, 2009, but not published until Friday, January 8, due to Internet problems:

The best laid plans sometimes go astray. Feeling out of sorts yesterday, I went to bed early in hopes of a good night’s sleep providing an ointment to salve my sore spirit. Demon Lewy Body Dementia (doesn’t the word dementia derive from the word demon) had other plans.

Mary Ann simply could not sleep – for the entire night. I was involved with her needs in some way, two to three times an hour. There were the commode trips. There were two snacks, some drinks of water. There were lots of times sitting on the side of the bed, needing to be situated again when lying back down. She usually can’t handle the covers without help.

There was a long interaction in the middle of the night when she wanted to go out into the Living Room to sit and try to read. The problems with that idea are many. First, when she is up, she still needs help often with the same needs she has during the day. Then, the prospect of sitting up at night for a long period of time, then sleeping during the day risks shifting nights and days, making our system almost impossible for both of us. Those of you who have raised little ones have probably experienced the time when the tiny ones seemed to switch nights and days, making your lives pretty tough for a while.

After wanting to get out of bed multiple times throughout the night, when it got to be seven in the morning, she needed to get up. As usual after a bad night, she took her meds, had breakfast, and in an hour or so ended up back in bed sleeping soundly. I am of course wide awake and writing this. It is my understanding that trying to compensate for lack of sleep at night by napping during the day does not actually help, in fact just makes the sleep deprivation problem worse. It is harder to get to sleep then at night. That and my general inability to nap during the day results in my staying up rather than napping while she is napping. The general wisdom is to go to bed at the same time and get up at the same time each day. The general wisdom does not take into account multiple times up during the night in between those two times.

Of course, the lack of sleep is increasing the problem with hallucinations. There were the people in the house again last night. This morning there were a variety of things she saw outside the windows, and in the house things that needed to be picked up, tiny chains in her hands. There was one of those interactions in which she was talking as if it was just an ordinary matter while saying things that made no sense at all. About half way through lunch, she started to get up. I asked what she was going to do. She said she was going to get her Pepsi. The cup of Pepsi was sitting at the top of her plate with the can in back of it, just as it is for every lunch.

On the other hand, she asked if this is the day Stacey would be back to talk about the blinds and painting the interior of the house. She remembered that correctly. Then she suggested that we paint the interior a light blue, just a touch of blue. Because so often the lucid moments come, I try to work hard at tracking when her words are not computing for me. Sometimes a different word will come in place of the one intended. Yesterday when she suggested we adopt the cat she was seeing with her “magic eyes” (her words for the hallucinations when she accepts that they are hallucinations), she said maybe that cat could be “adapted.”  It took a moment for me to catch what she meant.

In spite of the difficult night, at the moment, I am feeling better today than yesterday. Maybe it is that adrenalin is playing a bigger role in sustaining alertness today. I just took a break from writing while Mary Ann is napping to do a bit of shoveling outside so that I can get to the birdseed. I have fed and watered the birds. It is invigorating outside since the wind chill is between twenty and thirty degrees below zero and the new three or four inches of snow is blowing around. The air temperature is predicted to reach a high of five degrees above zero and a low of eight below tonight, follow by a low of twelve below tomorrow night. Needless to say, we will not be going out with Mary Ann in the wheelchair today or tomorrow. The most we could do is head out in the van and have Mary Ann stay in the running van while I run into the store. There are a number of things on the list, but none that we can’t survive without.

The toughest thing today so far is that the telephone land line is out, eliminating out DSL access to the Internet. I certainly do feel disconnected to the outside world. I forgot just how much time I spend connecting with others through email and the Worldwide Web. For being pretty much technologically illiterate, I sure depend on the technology a lot.

Right now, my interaction with the outside world, is enjoying watching the dozens of birds that are enjoying the fare I have provided for them. We did end up going out in this weather. I discovered that we needed to return some videos. We went to the grocery and I ran in to get the items. She decided that she wanted take out Chinese from the grocery in spite of the fact that I had a roast, potatoes, onions and carrots cooking in the crock pot. It frustrates me that Mary Ann so often will not eat what I cook, even when it is something she used to eat and enjoy. I decided it was not worth arguing with her, since my goal is that she have plenty of nourishment. She ate the Chinese and I had the roast and veggies.

The above was written yesterday on a Word Processor since the Internet was not available.  The really bad night was the night before last.  Last night I went to bed even earlier.   Until about 12:30am, Mary Ann was disturbed by vivid hallucinations.  There were the people again.  The little girl was there.  She was confused about the time.  At one point while lying in bed she said our Daughter, Lisa, was on the phone.  She had no phone. 

After she finally went to sleep, she slept the night.  I got up at 7:30am to get ready for the phone line repair person who was due between 8am and 12pm, but came at about 1:30pm.  Mary Ann slept in until after 9am.  After the commode trip, she went right back to bed.  She was barely awake for the commode trip.  She slept until almost noon.  I think it helped some since so far today the hallucinations have not been as many and as vivid. 

The cold continues, so we stayed put today.  It will be even colder tomorrow so I suspect we will do the same. 

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.

 

January 7, 2010

Just Out of Sorts Today

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She looked over toward the walker leaning against the rail around the steps to the downstars.  She said she saw a cat.  Then she said maybe we should adopt it. 

At first I responded with the usual, “we don’t need the hassle of taking care of a cat.”  Then a little while later it dawned on me that there was a more appropriate response.  I told her that it would be fine with me if we adopted the cat she saw.  I don’t remember the exact wording, but it was something like “nice try.”  I added that it would be perfect since there would be no food to buy or litter box to clean.

There was another time that she was talking about something that I could not follow.  The hallucinations were not as constant as they were two days ago, but they were more present today than yesterday.  Yesterday especially, it was hard see her struggling so to track.  She wanted to make a list.  I got her a note pad and a pen.  She did write something about birthday cards.  (I have been trying to remember at the right time to phone one of my Brothers, whose birthday was January 3.)  There were a couple of scribbles after that, but when I offered to help in the writing, she got the sort of look that seemed to say, I have important things to write on the list, but I can’t get them into my mind. 

At those moments she is so helpless, and I am helpless to make any real difference.  So much of the time she has no words, then when they do come, she gets lost in what she was trying to say.  Sometimes what she says makes no sense, and she realizes it in mid sentence.  Other times she remembers things accurately and is right on with what she is saying. 

Maybe that is part of the reason.  Maybe it is the weather and the prospect of being homebound again for a few days.  Maybe I am just tired from the lack of an uninterrupted night’s sleep.  Maybe it is just getting tired of the constant demands of the task.  Maybe it is guilt over what I am not doing that I should be doing or the lack of patience with her.  Maybe it is the short days and long nights at this time of the year (Seasonal Affective Disorder).  I have just  felt out of sorts today.  I think Mary Ann has too.  I asked her if she was feeling goopy (technical medical term) or depressed.  I thought her lower lip was revealing that it might be so.  Her words did not confirm it.  She did decide to take a nap, indicating that she was tired.  It is hard to be sure about the lower lip sticking out as a non-verbal sign of sadness since that is one of the facial changes often brought on by Parkinson. 

Whatever is going on today in both of us, she is in bed and I am going to try to get to bed early tonight.  Maybe some extra sleep will help. 

By the way, those who read this blog and happen to be members of the parish from which I retired, let me clarify that my faith remains strong.  I have no doubt of the Lord’s love for me.   My future is certain and my purpose clear.  Even the Lord Himself experienced times he felt overwhelmed and needed to get away.  He got angry.  He cried.  He felt pain.  He expressed feelings of abandonment on the Cross.  It is a comfort to me that I don’t have to be afraid of my feelings however up or down they may be.  In fact my faith frees me not to run away from them.  I can own up to them, lean into them, experience them fully and move through them to the other side.  My relationship with the Lord is not sustained by my feelings one way or the other.  My relationship with the Lord is sustained by the Lord. 

I do not ask of those who read this blog that you share my faith.  I hope that what you read in these posts is helpful to you whatever your spirituality or lack thereof.  I share my faith on occasion because it is for me the key to my survival and the power that fills my life with meaning in the face of circumstances that seem bent on stealing our lives from us. 

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

 

January 4, 2010

Eagle Watching Respite

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I could hardly believe my eyes, but there they were.  Trees filled with American Bald Eagles and some Ospreys.  I counted.  There were between eighteen and twenty of them spread out in four different trees.  It was breath-taking.

They were gathered for a lunch of fish and fowl.  They were gathered not far from the spillway of a very large lake.  When the water comes through the spillway into the river, it brings with it fish.  The Eagles were fishing.  There were as many as four of them in the air at a time, dipping down to try to grab a fish.

There were also around 150 ducks of mixed variety gathered on the water in that same area.  The ducks were aware that they could make the banquet table just as easily as the fish.  It was actually comical to watch — probably not funny to the ducks.  When an Eagle got too close to one of the duck, the duck would do just that, duck.  It would pop underwater for a moment.

I was captivated with the scene for as much as an hour and a half while a Volunteer was at the house with Mary Ann.  This was not actually a day to be out and about.  We got a few inches of dry snow on top of the nine inches we got during the Christmas Eve blizzard.  It has been cold enough that all the snow is still here.  The streets melted some, but dry snow on top of refrozen melting ice made for some treacherous driving.

As I drove out to the lake and back, there were eight to ten cars in the median or off to the side in the ditch.  Many of the cars still had people in them.  When I left, I had intended on going to a couple of my favorite spots by the lake to check for birds.  I was dressed to be able to get out and walk if I chose to do so.  As I traveled there, it became clear that there would be a risk in getting off the main road on to areas that had not yet been cleared.  While a four-wheel drive vehicle would have made it more possible to get to those spots, there was something else that dominated my thinking.

Were I to slide off into a spot I could not get out of, there would be a long wait for help.  There were no other cars in on the roads around the lake.  I was making new tracks in some of the roads I was already traveling.  If I were tied up for any length of time waiting for help, it would complicate the day for Mary Ann and the Volunteer.  Any risks I take are not just about me.  They are about Mary Ann.  She cannot be by herself.  If I am not available to be with her, it would be no small task to keep her secure.  Gratefully, Mary (who schedules the Volunteers) would make phone calls until she found Volunteers to stay with Mary Ann.   Bad roads also impact Volunteers.  They are not necessarily able to get out with ease themselves.

As a result of those concerns, I was extremely cautious.  I found a spot on the road across the dam.  There is a great view from the top of the dam.  The spot was right above the spillway.  Snow was falling lightly, the sun was just a light spot in the clouds.  With the snow covering the ground it was very bright.  The panorama of frozen snow-covered lake on one side and the expansive view of the landscape through the lightly falling snow the other side was as beautiful as it was peaceful.

I listened to music as the car ran to keep me comfortable, and I watched the scene below.  The last of the music was some Russian Orthodox liturgical music.  It was as if I was in a bright white cathedral filled with the presence of God.  After so many days contained by the four walls of a small townhome, it was a wonderfully refreshing respite.

Mary Ann seemed to do pretty well today.  We watched the Kansas City Chiefs win, a rare treat.  Mary Ann went to bed fairly early, but she has been watching television while lying in bed for about two and a half hours now.  There is no sign of her going to sleep yet.

We chose to stay in tonight.  The weather is predicted to continue to be far colder than usual here.  The combination of the snow cover and temperatures heading to below zero later in the week are testing our mettle.  Our Northern Illinois roots help us from being completely intimidated, but what the wheel chair adds to the complexity of getting in and out of a car and in and out of parking lots and in and out of sometimes heavy and/or awkward doors with threshholds that can provide barriers others would never notice, all makes us think twice about going out in cold and snowy weather.

At least it looks pretty outside!

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.

 

January 1, 2010

New Year’s Eve 2009 – Party On!

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It is 9:00pm on December 31, 2009, and I am sitting here at the computer with the last of the Asti Spumanti sitting next to me.  We partied wildly eating crackers and chex mix until we could eat no more – four crackers and one handful after another (that is two handfuls) of chex mix.  We drank that half-bottle of Martini-Rossi Asti Spumanti until there was no more to drink (other than the glass sitting next to me now).  If I slur my words while keying in this post, you will know why.  Mary Ann has crashed – well, she is lying in bed watching the Mentalist.  I think she likes the blond guy.

We toasted the new year shortly after 8pm. That means we celebrated the New Year with South Georgia & The South Sandwich Islands.  I suspect that South Georgia is not the one with Savannah in it.  In a moment of madness (probably not the Asti Spumonti, the glass is still sitting there), I emailed South Georgia and The South Sandwich Islands to wish them well in 2010.  By the way, the contact page on their web site said they would not send souvenirs nor can people fly there.  Visiting can only be done by cruise ship.

This was not Mary Ann’s best day in terms of alertness.  She seemed to have difficulty connecting with any attempts at communicating verbally.  It took a very long time to determine what would be acceptable for lunch.  We got Glory Days’ pizza slices for her. She napped for a couple of hours late this afternoon and woke thinking it was morning.  Later in the evening she seemed to begin to become a little more alert.  She is having trouble going to sleep and commented that she slept too much today.

This afternoon, just as she lay down for the nap, I got a phone call asking if I might stop by the hospital to visit a young couple whose baby came about five weeks early.  The couple are some of my favorite people.  They have been ministered to very effectively by the Deacons at the congregation. The couple have been on the roller coaster ride that comes with all the unknowns in such a situation.  Everything seems to be on course for a healthy little one to be heading home in a couple of weeks or so, but it is always a scary ride, especially the first few days.  I was affirmed that my visit was requested.  I made sure all was in order with the parish, since retired pastors need to handle any ministry to former members very carefully so that all is done appropriately.

It felt good to be in that role again, if only for a short time. The nature of my role here with Mary Ann does not readily accommodate such ministry activities.  That has been good for the new Pastor (currently out of town), giving him a chance to do what he was called to do.  I was able to leave the house and head to the hospital for a time, since the baby’s Grandmother is one of Mary Ann’s Volunteers.  She was, of course, willing to stay at the house with Mary Ann (who slept during the time I was gone).

While writing this post, a greeting came through Facebook from one of the Youth in my first congregation, the one I began serving in 1972.  Sara is no longer a Youth, but I will not venture a guess at her age.  She is taller than I am and could hurt me.  Actually, one of the other Youth from those years just turned 50!  How is that for scary!

In my remembering the Teen and Young Adult years in the online Ignatian retreat I am doing, I made reference in last night’s post to the volatile years at the high school at which I taught.  Those three years came just before the move to the parish in Prairie Village, Kansas (the Kansas City area).

I had come to the high school from the Seminary, having become completely disillusioned with the institutional church.  I had concluded that it was not reasonable to expect the institutional church made up of flawed human beings to be any better place than any other human institution.  It turned out to be a very healthy discovery.  Ultimately, I came to appreciate the one major difference between the institutional church and most other institutions, the freedom to speak openly without censure the heart of the message revealed in Scripture in all its powerful transformational truth.

In that last very long sentence (I had four years of Latin in high school – blame Cicero) I used the word “Ultimately.”  There was much that filled the space between the beginning of the disillusionment of the institutional church and that “ultimately” healthy understanding of it. The students at Concordia Lutheran High School touched my life powerfully in those three years.  There came a transformation of my faith from one filled with pain and struggle to one filled with hope and joy.

The Cliff Notes version is this:  I came to teach with no preparation in how to teach.  I had a lot of information in my head, but no training in how to communicate that information to high school students in a classroom.  The courses I taught had only titles, no textbooks, no curriculum.  The titles were Old Testament (Freshman Religion), New Testament (Sophomore Religion), and Doctrine and Life (Senior Religion).  The students had been in required religion classes since Kindergarten.  You understand my dilemma.  The moment I quoted a Bible passage or used the religious code words they had heard for ten or twelve years by then, their eyes glazed over.

I chose to avoid the jargon and teach the message behind the jargon.  The relationship and the trust that grew between the kids and me was something I could not have anticipated.  When the inevitable time came that the Principal called me into the office to tell me that my contract would not be renewed for the next year (the Friday after the Tuesday we had put Earnest money down on a house, with Mary Ann four months pregnant with our second child), the response of the students was more meaningful to me than there are words to say.  Without doing anything improper (no sit-ins) they came to my defense.

In the end, I was offered a contract for the next year.  By that time I had received a Call to serve the parish in Prairie Village.  I realized that at CLHS I would be a lightning rod and a scapegoat for the administration.  I also accepted the fact that my abilities fit the parish better than the classroom.  Those young people touched me deeply with the intensity of their faith, their understanding of Christian community, their courage, and their willingness to put themselves on the line for me.  I will never forget them.

The years working with Youth in the Kansas City area nurtured what had begun at the high school in Ft. Wayne.  The immediacy of the presence of God in the lives of young people is a marvel to behold.  During those years, I got to be an accessible Adult who said all the same things their parents were saying to them with the advantage of my not being their parent.  I gained far more than I gave those young people.

What emerged as my purpose in relating to young people who came through so quickly and headed on with their lives, going off to work or college, was to have a positive impact, however small it might be, on their faith, their understanding of themselves and their ability to relate to others.

Over the years, that understanding of my purpose has expanded.  None of us can control, shape, manipulate anyone else into becoming who we have decided he/she should be.  Whether it is Mary Ann, our Children, our Grandchildren, the people we serve in whatever job we have, for me the ministry to so many I came to care about, our role is have as positive an impact as possible on them as they come through our lives and we theirs. The times I have heard from people whose lives intersected mine in the past often lift my spirit.

I just went in and gave Mary Ann a New Year’s kiss as the fireworks are announcing that the New Year has just begun here also, after beginning four hours ago in South Georgia and The South Sandwich Islands.  I think it is time to bring this post to an end.

Happy New Year!  May you keep your hopes and dreams alive in 2010!

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.

 

December 31, 2009

Wednesday’s Open Door Policy

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Shortly before 7:30am, Duane dropped off Eva at the house so that she could spend a couple of hours with Mary Ann.  Then came Shari and Edie for the Spiritual Formation Group that meets on the deck or in the downstairs family room.  Since the deck is covered with snow, it was, of course, a downstairs morning.  All is well whichever place as long as the coffee is made. 

A little later, Zandra came to give Mary Ann her shower and wash and dry her hair.  About an hour after they all had left, Kristie came to do the once a month cleaning of the house. 

Actually, we have an open door policy most of the time.  We have been very private people, especially Mary Ann.  All that changed in the last decade.  Since getting to the door is not always an option when someone rings the bell,  those who have come regularly to spend time with Mary Ann know that they may just need to walk in, if no one answers the door.  They walk in and announce themselves so that we will know that they have arrived.  We have become quite accustomed to the open door policy. 

While we did not get out today, the many visitors provided an antidote to any sense of isolation in our little cabin.  No cabin fever today.

Mary Ann did nap for a couple of hours during the day.  That allowed me to get some things done at the computer.  I did not spend time on the online retreat until she went to bed tonight. 

These two days looking at mental snapshots of events during the Teen/Young Adult years has again been thought provoking.  The Spiritual Formation Group discussion blended with the matter of receiving gifts from experiences, good or bad. 

I thought about last night’s post and the role singing played in my life.  While the high school and college years provided much affirmation as I participated in leadership roles, sometimes doing solo work as well as singing in ensembles, it was different at the Seminary.  Music  was still a dominant feature.  There was a three week choir tour that took us (Mary Ann and me) to England, Holland, Germany, Austria, Switzerland and Belgium.  There were powerful, moving worship experiences singing in the chant choir and performing Bach’s St. John Passion. 

My ego was taken down a few notches in the Seminary Years.  Illusions about my ability were shattered as I stood next to a tenor who had a Master’s Degree in Vocal Music from Indiana University.  I realized that I had been measuring my ability against non-music majors.  Louie provided a needed perspective. 

My injured ego came with me as I continued to sing in the Chant Choir at the Seminary, and the Cantata Choir that included people from the city.    The gift that came from those years was a more realistic view of my abilities.  While the truth can be painful, it is better to make friends with the truth than spend much time with pretense.  Another gift was an appreciation of being a part of something greater than one person.  It became less about me and more about the music and its impact on those listening. 

That shift in focus seems to me to have helped in the transition from a high profile role as Senior Pastor of a large and vibrant congregation, to a lower profile role of being the full time Caregiver to someone who needs that care, someone to whom I am fully committed.  

Those years included the joy that December 18, 1965, when Mary Ann and I were married in our home congregation in Northern, Illinois.  We had both had finals at our respective schools in St. Louis the Friday before the Saturday we were married in Aurora, Illinois, outside of Chicago. 

Those years included the death of Mary Ann’s Dad, just two or three weeks after the wedding.  He had walked Mary Ann down the aisle. 

The Seminary years included a year at a church doing an Internship, called a Vicarage.  It was the 60’s, including the three assasinations.  I became disillusioned with the institutional church.  I refused to accept a Call to a parish on the day my classmates all received theirs a few weeks before graduation.  Those were dark days.  I didn’t know what to tell Mary Ann, since I didn’t know what to do.  Lisa was due to be born about a month after graduation. 

Lisa was born on the Fourth of July in 1969.  She brought light to those dark days.  I can remember holding her as we watched the moon landing, wondering what it would be in store for her as we moved into the space age.  I remember her Baptism in the Seminary Tower’s Baptismal font, with water from the Jordan that John Damm had added before doing the Baptism. 

Out of that time emerged an opportunity to teach at Concordia Lutheran High School in Ft. Wayne, Indiana (where I had spent two of my college years and my Internship).  It was a school of some 900 students.  There were some volatile times there, which will be for a future post. 

Those years were a roller coaster of experience in most every way.  They provided a lifetime worth of highs and lows.  And the ride was just beginning.   The gift from those years came in the form of the recognition that most anything could happen, and with the Lord’s help, we would survive.  Little did we know then, just how important that learning would be. 

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.

 

December 30, 2009

Second Day of Escape from Cabin

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We got out of the house again today!  It just feels good to be out in the van running errands after so long stuck inside.  There was no nap again today.  I certainly hope in spite of that, there is more sleeping tonight than there was last night.  It was snack time at 3:15am. 

We ran errands and ended up at the grocery again today.   Mary Ann likes being at the store.  It seems to be one of the most engaging and entertaining activities for her.  It frustrates her that she is no longer the chief of food preparation and pantry stocking. 

Lunch was left over chinese from yesterday.   Supper was Chicken Tetrazini that was brought to us from church by the Parish Nurse for the freezer.  I cooked some fresh broccoli to add a veggie.  The Tetrazini tasted wonderful to both of us.  I am always fearful that anything from the freezer will not spark Mary Ann’s interest, but she loved this meal too. 

The Parish Nurse program at the church from which I retired has been one of the strongest ministries.  It is so strong because Margaret has made it so with God’s help.  She visits folks who are homebound regularly, taking vegetables from Glenn’s and her vegetable garden, flowers from their flower garden, leaves from their Maple tree in the fall, CD’s of the last Sunday’s church service, and from the church freezer she brings food that has been designated for use by the Parish Nurse.   The sense of community and support from church is vivid for those who receive her ministry and the ministry of those who assist her. 

Since there was no nap today, it helped that a Volunteer was scheduled for two and a half hours this evening.  I got out for a coffee refill.  I got to the liquor store to buy a half bottle of Asti Spumonti so that we can tie one on Thursday evening, New Year’s Eve.  That will happen when we eat cheese and crackers and toast the New Year at about 8:00pm.  It will be the New Year somewhere on the planet by then.  The worst part of it is that every year we do that, we have of the half bottle left to sit in the fridge for a while.   I guess we are not the rowdiest partiers around. 

The time the Volunteer was here gave me a chance to focus attention on the online Ignatian Retreat I have started.  This week’s activity is remembering the mental snapshots of those events from the past that impacted our formation.  This evening began the Teen and Young Adult reminiscences. 

Many of them related to the choirs I was in.  I perceived myself to be a non-entity in social terms at the large schools I attended.  I was utterly shocked when my name was suggested for President of the 104 member Sophomore Choir.  I got to serve as President and Student Conductor or four more choirs through high school and college before entering the Seminary.  Singing was at the very center of my life from Junior High through the end of the Seminary (8 years post high school).  Music has had a sustaining and nurturing presence in my life for all the years since.  It feeds my spirit in a way that allows me to continue doing what I am doing now. 

One of my most vivid memories is of the night when I was about fourteen years old that I decided to go in the ministry.  It was a very spiritual experience.   There was not magic nor were there voices from above, just some powerful mental conversation that seemed to reveal the Lord’s leading to the decision.  I am always suspect when someone says the Lord told them to do something.  It seems often to be an attempt to use the Lord to make people agree with something the person has decided is so.   The decision to go into the ministry was tested and reconsidered as other career options moved to center stage, one in Physics and the other in Choral Music. 

That memory confirms for me a decision-making process that, at least in terms of major decisions, has seemed to leave me completely secure in whatever I have chosen to do.  I have never regretted a major decision or second-guessed it.  Whether right or wrong I have given myself completely to whatever has followed each of those major choices.  I have not lost energy because I wondered if I was doing the right thing.  I may have lost energy for other reasons, but not because I doubted the choice I had made.  That has been the key to dealing with the challenges that come with full time Caregiving.  As those of you who read these posts know well, I have plenty of times of frustration with my role and my own limitations, but I do not question the decision to choose the role. 

The time in life that is the focus of today and tomorrow is the time during which Mary Ann and I met and, three and a half years later, married.  I had endured the typical rejection by the first couple of Junior High crushes.  I will say it certainly did not feel typical.  I met Mary Ann (having known her name since we grew up in the same church) the summer after my first year in college. 

Romantic love is, of course, very selfish.  I fell in love and found that a gaping hole in my insides was filled by that relationship.  I can only speak for my own feelings on the matter.  I do not actually know much about Mary Ann’s feelings at that time, or since then for that matter, since she holds her feelings close to the vest, as they say.   While we have had the usual ups and downs, the relationship has remained secure for these many years.  I feel no less in love with her than I did forty-four years ago.  Even the waste management duties have not changed that.  If anything, the feelings are deeper and more fully developed than when we began our life together.  The struggles of these last few years have drawn us closer.  All of that does not preclude our getting grumpy with each other, or our resenting each other when things are not going well for us.   It just puts the problem times into perspective as just a part of a strong and healthy relationship. 

The online retreat is providing lots of fodder for the task of finding meaning in the circumstances in which I am living as a Caregiver.  Finding  meaning in the Caregiving tranforms frustrating days into fulfilling days.

 

December 29, 2009

Escape Cabin! Plan Sunroom Addition.

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I asked Mary Ann if she wanted to go out to lunch.  A ridiculous question, since she always wants to go out.  The sun was bright.  The temperature headed for a balmy 33 degrees.  All but the major thoroughfares were still in pretty bad shape, but it was doable.

We ate at Perkins, then headed for some errands.  Excluding a pit stop at the house, we were out from 11:15am to about 4:30pm.  I guess we had a lot of pent up need for running errands.

We had an appointment this afternoon that related to obtaining the means to accomplish a project here at the house.  While we have limited resources, there is a need to do whatever we are able to do to make our environment as pleasant and stimulating and nurturing as possible.  Most of the days we have left together will be spent here at home.  It is reasonable to expect our freedom to get out to diminish as time goes by.

We have a wonderful, calming pondless waterfall that has been installed in our back yard.  There are probably thirty or more trees surrounding the area behind the house.  There is a secluded feel to the space.  The problem is that we can’t see any of it from inside the house.  We have to go out on to the back deck to enjoy it.

Town homes are close to one another and often have very limited window space.  One reason we chose this home was that it had more natural light coming in that most of them, but it still is very limited.

Before we added the deck, there was a small patio under a portion of the roof in the back corner of the house.  When we built the deck, it included that patio area and extended into the back yard.  We are going to enclose the area under the overhang so that it will become a sun room.  The interior walls will be removed other than a column to support headers that keep the roof properly supported.  There will be a six foot by nine foot area added to the interior space.  There will be sliding glass doors flanked by windows the same size as each panel in the sliding glass doors.  There will be light!! By the way, yes, there will be Vertical Blinds to provide privacy at night.

Through those glass doors and windows we will be able to see the waterfall and plantings.  I will be able to see the birds that come to the twelve to fifteen bird feeders clustered around the deck.  Mary Ann is just not comfortable spending time outdoors. This way she will be able to enjoy the waterfall and back yard from inside the house.

I won’t deny that this project, along with the waterfall, is an attempt to satisfy my need to enjoy the outdoors.  We are here inside this small living space all day long every day much of the time.  This project will bring the outside in so that our cabin fever might be diminished even when we are homebound.

This afternoon the commitments were made.  The project should begin some time early in February.  Who was it that said his goal in retirement was to spend his children’s inheritance?  Sorry, Kids!

Since we were out for most of the day, there were no nap times.  What is odd is that while Mary Ann has slept pretty well the last couple of nights, having had one or two long naps during the day, she seems unable to get to sleep tonight.  There has been almost constant motion in the bedroom.

Since there were no naps, I have not had any time to spend with the online Ignatian retreat today.  Mary Ann did get in bed early tonight, even though without sleeping.  When she first laid down, I read an email that included a link to a YouTube video of the Taizé community singing in worship.  That link took me to a treasure trove of Taizé music with video or slides.  I spent the next hour trying to listen and watch.  That music touches me deeply at a Spiritual level.

I used the word “trying” in describing that experience, since Mary Ann’s movements caused me to hop up every few minutes.  In between times helping her with the television remote or adjusting the covers or using the commode or having a drink of water, I watched the monitor wondering what was coming next.  I found the conflict between the deep feelings I was experiencing through the meditative music and the constant attending to Mary Ann to be almost unbearable.

It is just a part of the Caregiving task for anyone who is attending to another’s personal needs.  What is so difficult is that the person in need becomes the constant center of attention, with no opportunity to just relax and focus on something else.  Any other focus needs never to draw attention completely away from what she is thinking or feeling or needing or doing or considering doing.  The pieces of Taizé music are anywhere from two to five minutes long.  I was not able to listen to even one of them all the way through without at least one trip to help Mary Ann.  This time after she goes to bed is the time I count on to disengage a bit and focus on something to stimulate my mind.  I have been up and down more that a dozen times while trying to write this post.  It is at times like this that the task of full time caregiving feels the heaviest.

I will head back to the bedroom now in hopes that there will be some sleeping that will follow.  The odds are not good for that happening.

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.


 

December 28, 2009

Shoveling Snow and Scraping Ice

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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Another day in the cabin.  I thought we would try the Evening Service at church tonight, but King Colon, a high blood pressure headache, and an unwillingness to tackle the cold and the wheelchair on ice and snow while trying to get into church all combined to change our minds. 

Today was a better day.  One reason was that I made a pot of strong coffee to feed my caffeine addiction.  Yesterday, some stomach discomfort interfered with the coffee intake.  Another reason the day went better was that we had a morning visitation.   It was nothing supernatural, but it was uplifting.  Don, Edie and Daughter Gretchen surprised us with a visit.  They were bearing gifts, Gretchen’s soup (very tasty and very filling), cookies from church (made by the Deacon who preached and his family), and some other cookies, bundt cake and muffins.  The food and the conversation helped stimulate a more positive atmosphere in our cabin. 

The other reason the day was a bit better was that I got outside, shoveled snow and scraped ice, stimulating my brain with endorphins.  Having grown up in Northern Illinois, I am not unfamiliar with such things.  Actually, I have an unpublished goal of having the first completely cleared and dry (down to the cement) driveway in the subdivision.  I was disappointed that I did not find the energy to get it done right away, but the wind and blowing snow made it almost impossible.

The Homes Association had used a bobcat to clear the worst of the snow from the drive, but there was a layer that was packed down by the treads of the bobcat, and then blowing snow added a couple of inches more.   At least looking from my drive, it appeared that no one else was down to cement either yet this morning. 

I began shoveling.  Some of the drifts at the edge of the driveway were pretty tall.  I paced myself as I worked on the drive.  Every time I lost my footing for a bit, I thought about the consequences of my falling and cracking my head.  Then, of course, the thought of all those older men who had heart attacks while shoveling snow came to mind.  When the next door neighbor came out for a moment on the way to her car, she encouraged me to leave the task for the sun to accomplish in coming days.  I assured her that I would be careful.  I told her that if I was foolish enough to over-exert and had a heart attack, my children would summarily finish the job, all the while asking me what I thought I was doing out there shoveling snow.  They are fully aware of the challenge of dealing with their Mom’s illness if anything were to happen to me.  They would not hesitate for a moment to do whatever is necessary, but given their own obligations to spouse and children, it would be a challenge of monumental proportions. 

After shoveling the snow, there was, of course a layer of ice to be dealt with.  I am very proud of my method for dealing with an ice covered driveway.  First, I have an ice scraper just like the one we used regularly when I was growing up in Aurora, Illinois.  It is the perfect tool for loosening the ice so that it can easily be removed.  Second, I have the secret knowledge.  Removing ice has nothing to do with temperature.  It is all about color!  More accurately, it is about dark color.  

Even on a cloudy day, there is a certain amount of sunlight that reaches the surface of the earth.  White repels it.  Dark absorbs it.  My goal is to get rid of as much pure white surface as possible and reveal or add as much dark surface as possible.  The snow is shoveled down to the top of the ice. The ice is dark.  The scraper is used to wherever there is an edge that it can be forced under without too much effort.  Then comes the kitty litter, the cheapest available.  It is sprinkled liberally over any ice remaining on the drive.  The sunlight warms the dark particles and they work their way through the ice.  The sunlight also warms the cement under the ice so that the ice does not stick to it.  Then scraping again and again whatever has been loosened, clears the cement with relatively little effort. 

Some ice remains, but it has kitty litter on it.  The sun and the wind should melt and evaporate what is left tomorrow in short order.  Understand, we have the advantage of the drive being fully exposed to the sun since it faces south and it is not shaded by trees. 

Added advantages to using kitty litter are that when it first goes on, it provides traction, reducing the likelihood of slipping, and it does no harm to the grass when the snow melts (at least I don’t think so).  The one negative is that it clings to shoes and tracks into the house when the shoes come in.  The trade off is worth it. 

I am continuing the online retreat.  Mary Ann napped twice today.  I used the time for the shoveling and scraping, but there was enough to do some more thinking about and recording of childhood experiences and their impact on my formation.  The mental snapshots of various moments in my childhood have elicited strong feelings, some pleasant and some very unsettling.  I witnessed a worker killed by the walls of a sewer repair ditch falling in on him.  There was a murder/suicide across the street.  A kitten was run over as I watched — another put down.  There was talk about our oldest brother who died on Christmas Eve when he was five years old.  His appendix had burst.  I simply could not ignore the concept of death.  My Rheumatic Fever shaped my self image as a buddy played a game of tag with me in which my touching anyone would give them Polio.  I sat out of gym classes and games at recess time. 

Those experiences forced me to come to terms with death fairly early in life.  My faith was powerfully reassuring.  I suppose the Rheumatic Fever experience gave me a certain level of compassion for the sick and those who feel themselves to be on the outside looking in.  A variety of experiences during those years produced feelings of guilt whether deserved or not.  It is a clear understanding of the Grace of God that emerged early on as I processed those experiences.

By the same token, there are wonderful memories of hours spent outside with the bugs and birds and tadpoles and weeds and grass and sunshine and puffy clouds and rain and wind.  There is no doubt that those experiences have programmed me to find peace and joy and satisfaction in the natural world. 

What I learned from those early experiences has certainly helped shape who I have become.  Mary Ann has not really been very forthcoming with stories of her early years.  Most of what I know about those years has come from listening to her talk with her three friends from Fifth Grade on.  I have little doubt the best stories about those years have been told outside of my hearing. 

So far, two days into the online retreat, I am glad to be doing it.  There have been two short Scripture readings so far.  Both have been very instructive in the process.  If you are interested, the following link will take you to the home page.  There can be found a link to the “Online Retreat.” http://onlineministries.creighton.edu/CollaborativeMinistry/online.html

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.

 

December 27, 2009

Day After Blue Christmas

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We are still pretty much snowed in.  Actually, the street and driveway have been clear enough to get out.  The main streets are passable according to the television weather folks, but many of the side streets are not   If we did try to get out, I am not sure what we would do and why.  Mobility in a wheel chair is pretty much compromised when there is snow and ice involved, even when shoveled.

We did not venture out today and may not do so tomorrow, although we will try to get to the Evening Service at church.  I am grateful for some meatloaf from the freezer brought by Maureen some time ago.  A couple of baked potatoes and half of a small head of cabbage rounded out supper.   There should be enough leftovers for tomorrow.  There is still cold meat and cheese from a Christmas gift brought over by former members — good people.  As always, I could eat for months on what we have in the freezer, but Mary Ann would starve. 

I am afraid the time here in the house together without break is wearing thin.  Today was an NCIS Marathon on television.  I like the program and find the characters entertaining, at least I did for the first few hours.  I wander back and forth to and from the computer and the kitchen, doing whatever chores there are to get away from the television. 

Finally, I moved to the kitchen to write some thank you notes and watch some news.  Mary Ann popped up and ended up on the Living Room floor.  She did not hurt herself.  As the grumpiness sets in, I found myself resenting the unwillingness to push the button next to her so that I could get there to help.  The video/audio monitor I use keep her in sight when not by her side  was by the computer.   I should have brought it into the kitchen, but I was not going to be in there long.  Taking the monitor from room to room through the day as I go back and forth and plugging it in so that I can see her just doesn’t seem very workable to me. 

I could be more assertive in insisting that the television be adjusted to my taste, but when she is not engaged in what is on television, she is up heading to one place or another, demanding my jumping up to be at her side.  It is far less difficult for me, if whatever is on TV captures her interest. 

It would have seemed reasonable to ask Mary Ann to help with the thank you notes to involve her in something other than watching television.  It is hard for both of us, but especially Mary Ann to accept how much she has lost.  Last year, I tried including her in the Christmas Card preparation.  She simply could not do any part of the task without utter frustration.  Finally, she tried putting the stamps on the cards.  She could not manage to get the self-stick stamps off the backing and then on the envelop anywhere near the spot they need to be.  She just gave up in frustration. 

It is hard to think about how much she has lost after being so talented in so many areas.  It is clearly very painful to her.  I think that what is hardest for her is the sheer boredom of not having things to do that she is able to do.  I am often disappointed in myself that I do not engage her more in trying to do things that mitigate her boredom.  I am so busy trying to entertain myself in between just doing the basic caregiving tasks, that I can’ t seem to bring myself to add more that might entertain her.   I am certainly not proud of that gaping flaw in my caregiving. 

During her nap today I began doing an online Spirituality Retreat using the Ignatian model.  There are different materials for each of thirty-four weeks.  It is provided by Creighton University.  I do not have a very good track record for keeping at such a discipline, especially in my current role.  I am hoping by attaching the retreat activities to Mary Ann’s daytime naps, I might find it doable on a continuing basis. 

The approach is to fold the central focus of that week into all the daily activities so that ultimately, it is running in the background of the retreatant’s mind no matter what he/she is doing at any given moment. 

The first week’s focus is on going through a picture album of the retreatant’s life using the mind’s eye.  The first couple of days focus on childhood, the second couple of days on teen through young adult years and the third couple of days the retreatant’s adult life.  The goal is not just to remember, but to tap the feelings associated with those events and look for learnings that came from them, gifts that both the good events and the bad ones left behind. 

I have some free software called iDaily Diary that I use for journaling on occasion.  There I will record reflections on the pictures that come to mind.  I may share bits and pieces if they are not too private and they relate in some way to the role of Caregiver. 

Enough for now.  It is late, and Mary Ann has been getting up pretty early the last few days.  I can feel the tiredness spreading through my mind and body.  Let’s hope for a good night of 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.

 

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