December 2009


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.

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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.

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.


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.

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.

A church in our area had a Blue Christmas.service scheduled this season. The church I served as Senior Pastor until I retired has had a couple of Blue Christmas services the two years before this one.  The holiday season is tough on folks whose situation does not match the wonderful loving family scenes portrayed in movies, television programs and the feel good stories that come at this time of the year.

There is, of course, nothing wrong with all the happy endings and sentimental stories that fill the media at Christmas time.  What is wrong for some is that what they see is not what they experience, or have any realistic hope of experiencing.

This Christmas Day did not seem very celebrative.  Mary Ann admitted on the phone with our Daughter to being sad.  I guess in that sense, we had a taste of what it means to have a Blue Christmas.  Before anyone who reads this gets concerned, we had a great family Christmas celebration last Sunday.  Our visiting children had to return home a little sooner than planned to avoid being trapped by the weather.

We were alone today.  We were trapped in the house yesterday and today due to the blowing snow, providing large drifts and sometimes impassable streets.  We will probably be here tomorrow also.  I had a bowl of cereal and Mary Ann a left over half-sandwich from yesterday for lunch.  She had frozen pizza tonight and I had the last of some leftovers.  Not much of a Christmas Day celebration.  We do have lots of snacks and sweets to satisfy our need for munchies and our sweet tooth.

There was great music available on the radio, but Mary Ann’s electronic medium of choice is the television.  I listened to some meaningful (to me) worship music while she was napping.  Music does not seem to hold her interest at this point.  There was very little on television that both fit her taste and lifted our spirits.  It was mostly silliness or violence.

I can understand why the expectation of intense joy and warm feelings can make it a very tough time of the year when the reality is so far from the expectations.  Reality is not so simple.  It is far more complex than just all warmth and happiness or all struggle and pain. It is most often a measure each mixed together to produce life as it really is.  The challenge is to keep it all in perspective, enjoy the wonderful moments, deal with the not so wonderful moments, and accept the value of each in creating the history of our lives.  Our past has shaped us and our choices as they continue to come day by day form us into who we are becoming. This Blue Christmas is just one day in the journey.

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.

When I stepped out on the deck a short time ago, the snow squeaked when I walked.  I have seldom heard that squeak since I headed off to college in the fall of 1961.  Actually, I did have opportunity to hear that squeaking for my undergraduate years, since they were spent going to school in Milwaukee, Wisconsin and Northern Indiana.

The wind is howling through the trees.  The snow is blowing.  There is potential for over a foot of snow by morning and gusts of wind up to 50 miles an hour.  I felt an odd sort of nostalgia when I stood out there listening to the wind and feeling the cold and snow on my face.  I have no wish to live in a cold climate again.  When I step outside, I come back in right a way to enjoy the warmth.  Nonetheless, there are flashbacks to a time when I played endlessly in the snow, built snow forts, went sledding down every hill I could find in flat Northern, Illinois.

The Kentucky Crew, Daughter Lisa, Denis, and little Abigail and Ashlyn, headed off this morning to avoid the blizzard.  Otherwise they would have missed Denis’s family gathering and maybe a workday or two depending on travel conditions after the blizzard.  There is always a bit of separation sadness when the kids leave.  My Mother, even when we were older adults and she was in her 80’s, said that when we left after a visit, she would get in the car and go somewhere, maybe invite someone to meet her for lunch, to mitigate the sadness in the pit of her stomach.

I am almost glad for the blizzard.  It is distracting enough to take our mind off the time of separation sadness.  I am not glad for the timing of the blizzard.  We have missed out on every Celebration of Christmas in a corporate worship setting this year.  I am hoping to find something on the television or computer to help provide at least the illusion of worshiping in a corporate setting.

The changes in plans caused by the weather, something outside of our control, brings to mind a thread of discussion in the online group made up of Caregiving Spouses of those with some form of Lewy Body Dementia.  One of the members included the following quotation.

“The carrying out of a vocation differed from the actions dictated by reason or inclination. … The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice.” Simone Weil.

The quotation was made in the context of reflecting on the acceptance of the Caregiving Role, immersion in it, and thoughtful wonderings about the prospect of having choice again should we outlive our Loved Ones.

The responses that followed included some blunt rejections of accepting the loss of choice and giving up other dimensions of the Caregiver’s life.  That thread has been very thought provoking.  I have written lots of words in earlier posts on this.  It was good for me to think again about what I am doing, the way I have chosen to do it, why I am doing it, and its impact on my quality of life.  I recognize that what I am doing as I reflect is very self-centered, but my reason for doing this blog is to help other Caregivers make sense of what they are doing.

Mary Ann’s needs are basic and constant.  It is not her choice that she have those needs.  They are just a fact of her life, and on that account, as her husband, my life.  Those needs do not leave much in the way of choice.  If I don’t respond to a need, there are consequences for her and consequences for me.

As in the quotation, there is not a lot of stress resulting from being conflicted about what to do from one moment to the next.  I simply respond as effectively as possible to the needs that arise.  There are few choices to be made.  What is at issue, at least for some of the respondents online is the struggle with giving up choice.

As I think about my circumstances, what has given me comfort and peace in living as a Caregiver, with few choices, is the reality that I have chosen this role.  There were other alternatives with varying degrees of difficulty in making them a reality.  I chose this role.  As I have said many times before, I chose it for my own benefit as well as Mary Ann’s benefit.  It does need to benefit her to accomplish the very thing that gives me satisfaction and creates meaning in my life, but when all is said and done, I am doing it for me.  I love her, I promised to live that love whatever came, I want to do things that help me feel good about myself.

I am also convinced that the quality of life does not depend so much on externals.  If we were traveling the globe together, we would be happy sometimes, sad other times, angry sometimes and at peace other times.  I am not so foolish as to suggest that people who are in horrible circumstances should buck up and be happy.  Even with our challenges, there are way more frightening realities out there.  I don’t know how I would feel or what I would say if things were worse than they are.  All I can say is that at the moment, I am convinced that I have as good a quality of life as I would have doing much of anything else, including playing all the time (which sounds boring to me).

There is one dimension to my situation that raises a question for me.  When I get up in the morning and look at our clear schedule, instead of longing for things to fill the day, I celebrate that I am not overwhelmed with too much to do.  For 40 years in the ministry, my average work week ranged from 60 to 70 hours.  I was on call (sickness, marriage and personal counseling, deaths) 24/7 to anywhere from a thousand to three or four thousand people when adding together members and their immediate circle of relatives and friends.  In the last years, while I did not take a directive approach, I was ultimately impacted and responsible for and responsible to a fairly large paid staff and a huge staff of volunteers.  Again, I did not relate directly to all of them, but by virtue of the role lived with the consequences of their choices.  The vast majority of time I had the joy of benefiting from their good choices.  That was not always the case.

In the last few years before I retired, Mary Ann’s needs consituted a full time job all the hours there was not a Volunteer with her.  There were regularly sleepless nights and always nights of interrupted sleep.  The job of Senior Pastor in a comparatively large congregation was exceedingly demanding in terms of time and personal stamina.

What I am wondering is if I might still be resting up from what had become an overwhelming load.  Even small tasks now can bring an almost PTSD sort of flashback to feeling overwhelmed.  Maybe I am settling in to having one focus of need since it is such a relief not to have loads of needs coming from numbers of directions.

One thing about the circumstances we are in, and the loss of choice in what I do minute by minute and hour by hour, is that I do not feel like a victim.  The circumstances are just that, objective realities that we must deal with.  Everyone has circumstances.  They just differ from one another.  These are ours.

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