June 2009

Someone recently wrote a vivid description of how she anticipated a social gathering going.  She lost her husband about a year and a half ago.  The pain is still almost overwhelming.  She is anticipating going to the social gathering and pretending to be fine.  She would act the part, bantering with the others there, appreciating what each other is wearing.  All the while she would be feeling the pain of that loss, trying not to reveal it. 

Why pretend?  Well, who would be interested in hearing her whine about it?  She should be over it, right?  It has been long enough to stop grieving, let go of the pain and enjoy life again?  If she didn’t pretend, if she let it all come out in that public setting, she would soon become a social pariah.

First of all, there is an absolute lie out there that anyone who has lost a spouse or a child knows is a lie.  The lie is that after a year, a person ought to be over the loss, be done grieving and be able to get on with life no longer disabled by the pain of that loss.  Sometimes acquaintances begin to get impatient with a person’s grieving just months after the loss. 

It just doesn’t work that way!  Grieving is so complex as not to allow any template defining its time frame and boundaries.  No one can decide for someone else how to grieve or how long to grieve.  Yes, grieving can turn into a pathology.  But sometimes one person’s pathology is another’s path to acceptance and good health.  Most of those who allowed me into their lives at a time of deep pain over a loss have needed reassurance more than diagnosis.  They needed to be reassured that it is all right for them to feel the pain, to be okay and then relapse, to cry too much or too little in the judgment of friends and acquaintances.  They needed to be allowed to keep their defensive denial in place as long as they needed it until they were ready to let the full force of the loss finally hit them. 

Those who had gone through a painful loss, needed a place to talk it through, a place where they had permission to go over the same territory over and over again until the intensity began to diminish.   They needed a place where there was no need to pretend. 

What became clear to me in four decades of ministry to people in pain is that while each is convinced that he/she is surrounded with people who are doing fine, while he/she is not, he/she is surrounded with others who are doing the very same thing.  When we are in pain, we look at others who appear to be normal, happy, well-adjusted, but are pretending just as we are. 

Those of us who are doing full time caregiving, whose world is filled with never ending responsibility for someone else’s well-being can decide that no one out there understands.  We can begin to isolate ourselves and then conclude that no one cares about us.  If they cared they would pay more attention to us.  The truth is, we are surrounded by others who are looking at us longing for a bit of our attention, a word of interest in their situation, maybe thinking we would not understand since we are normal, happy and well-adjusted.

When I looked out over the congregation in a worship service, it often struck me that people with similar problems might be sitting near one another with absolutely no clue that they were both in almost the same situation. 

The way to find the strength to deal with our own pain, is to turn away from it long enough to see someone else’s struggle and try to make a difference.  Allowing others to shed their pretenses with us, not only helps them find the strength to deal with their pain but puts our pain in perspective and allows the possibility of our pain becoming more bearable.  

When we open ourselves to see and hear the stories of other people’s struggles, we find that we are not alone, there are others who understand.  Not only that, we are challenged to live meaningfully with our problems.  Seeing and hearing other people tell us their stories takes from us our excuses for allowing the problem to rule our lives and interfere with finding joy and meaning in life. 

No we are not okay.  We are in pain.  We have suffered a loss.  We are just putting on a front.  No one else understands or cares.  They are all okay.  Sorry — not true!  Most of us have a load of pain to carry.  Most of us are not at all okay.  Maybe it is time to stop pretending we are the only ones hurting. Maybe it is time to actually pay attention to someone else, listen to them without explaining why our suffering is greater than theirs.  Maybe by removing the pretense we can support one another, draw strength from one another and steal from our pain the power to separate and isolate and rule our lives. 

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.

Her name is Kim.  Everyone should have the chance to know someone like Kim some time in their lives.  Kim is a vivacious mother of two school-aged boys.  The boys are both gifted, caring, thoughtful beyond their years, the sort any parents would be proud to call their own.  She is wife to a good man who cares deeply for her.  I suppose that description suggests that Kim has a picture perfect life.  Oddly, she would probably tell you that is precisely the life she has, picture perfect. 

Kim’s life took a dramatic turn only months ago.  An unexplained pain that turned out to be unrelated to the Cancer led to tests which led ultimately to a diagnosis of Breast Cancer.   As you might guess, that summary hardly contains all the dynamics of the journey from pain to diagnosis. 

Because of family history, Cancer in the lives of Kim’s Mother and Grandmother, Kim realized that she needed an aggressive treatment response to her diagnosis.  She has had the double Mastectomy and will have a hysterectomy.   The good news is that the surgery has gone well, and chemotherapy is not necessary since it would have minimal effect on the statistical risk of recurrence. 

The word Cancer has the power to bring the strongest to their knees.  At first mention of the word, thoughts move immediately to the worst possible outcome.  From the very first word of the diagnosis, Kim has not broken stride as she moved through each step into her and her family’s new perspective on life. 

In almost forty years of ministry, I have watched people travel the path of dealing with a life threatening diagnosis.  No matter how bravely the people receiving the diagnosis respond, those who love them are shaken to the core.  It is cliche to say it, but it is true.  It is often harder for those who love someone going through a devastating illness and the resulting pain, than it is for the person with the pain. 

There is a sense of helplessness for those who watch and care deeply for someone with a life threatening disease.  Those with the disease sometimes come to acceptance before those who love them.  It happened that way so often for those to whom I ministered over the years, that one of the first conversations we had when I visited was the one about just how much they would be called on to help others come to terms with what was happening to them 

Back to Kim.  Kim has a deep faith that provides her with a sense of security and the freedom to face what is happening each step along the way.  As a result, she can talk and reason and process each option without panic or pretense.  She has talked openly with the boys who share her faith.  Nothing is off the table in terms of talking about the facts of her situation and what each in the family is going through.  Kim, her husband and the boys have all through these past few months expanded their capacity to understand life in all its depth and breadth. 

While Kim appreciates fully what has happened in their lives, she is profoundly grateful for the good gifts this problem has given her and her family.  Of all things she feels privileged.  If I remember our conversation correctly, that is precisely the word she used — privileged.   

I can testify, that not all those who have gone through what Kim is going through (or some other problem like it) have felt privileged.  I have watched some become bitter, fall into despair, lash out at God and anyone else within reach, feel so sorry for themselves that the world shrinks to become solely about them and their struggles. 

Kim is not one of them.  In what could have destroyed her and her family she has found gifts of deep and lasting value.   Faith has revealed itself more powerfully, the quality of relationships grown.  She has become for others a bright beacon of reflected light — reflected because the brightness comes from the unconditional love of a God whom she knows well, revealed in the person of Jesus Christ.  While those who read this blog need not share the faith that is the source of strength for Kim and for me, it is nonetheless our understanding of truth.  We cannot describe our experience without  reference to that faith.  If Kim were to agree that her life is picture perfect, it would not be because there is no pain, no fear, no struggling, but because there is a beauty that has become more visible than ever, the beauty of life with meaning, life well-lived, relationships that are real and deep, and hope that cannot be snuffed out. 

Almost five years ago, I did the funeral for a man named Tom.  Tom had a pain in his leg.  Two years later he died of the Cancer that had spread beyond the reach of the treatments available.  While it was hard for his wife to hear him say it, not long before he died he said that the last two years had been the most meaningful time in his life.  He found gifts that opened him to life more fully than ever, life with his wife and children.  Tom touched hundreds of lives as he traveled those last two years.  Tom drew strength from the same faith.

I have written before in the post on this blog some of the gifts that have been given to us in these twenty-two years with Parkinson’s traveling with us.  I would not presume to speak for Mary Ann on this matter.  I have seen pe0ple cluster around and come to know her and respect her and love her as friend — people who came at first to help her, and were ultimately helped by being with her.  She has revealed to all who know her and know of her, great courage and strength and endurance as she has taken so many hits and gotten up again after each.

I have learned more about what it means to love than I suspect I ever would have without the struggles we have encountered.  I cannot know what life would have been without the struggles, but I am grateful for what I have been taught by them.  Our Children and their spouses have revealed to us great strength of character, wisdom, love drawn out by the struggles they have helped us through.  Mary Ann and I have the joy of seeing three Granddaughters reveal a deep love and concern and caring that has been given the chance to be expressed in age appropriate ways. 

Kim would not have chosen the Cancer.   Tom would not have chosen to leave so soon.  Neither Mary Ann nor I would have chosen the Parkinson’s, but all of us have been given gifts of a value too great to be measured.  We have been privileged to find a quality, a meaning in life that cannot be learned from a book or a lecture or a DVD or a blog. 

Problems sometimes give good gifts!  For those of you who are midstream in the struggles, look for the gifts, open them, play with them.  They are more valuable than can be measured.

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.

I tried again tonight.  I am resorting to chemical warfare, natural, organic, but nonetheless chemical warfare.  The weapons: blood meal and Cayenne pepper.  I am determined to have sweet potato vines growing in the large pot on the deck, and the squirrels are determined that it will not be so. 

When we first moved in there were no squirrels.  I longed for them.  When the first one came, I fed it.  Now there are a cluster of them.  I still feed them.  That makes it even more annoying.  The ungrateful buggers.  I have taken care of them day in and day out and this is my thanks — eating my sweet potato vines?

That is not all.  I planted some Salvia in the barrel — four plants.  I caught one eating a salad of Salvia leaves.  More than that, chewing off the stems at the surface of the dirt.  If that is not enough, later I caught the squrrel as he was chewing off the Salvia plants that were still in the flats, awaiting transplantation to small circle of plants in front of the house.  I managed to salvage four plants for the front.  They are still growing a week later.  The squirrels seem not to venture into the front yard. 

I have a theory about the squirrels specifically choosing to eat the Salvia.  I mentioned my plight in the Wednesday morning group that meets on the deck.  One member remembered her daughter mentioning that kids sometimes smoke Salvia to get high.  Apparently a strain of Salvia is a hallucinogen.  I decided that the squirrels are partying on my Salvia!  I haven’t noticed any unusual behavior, but then who knows what  behavior is normal for a squirrel.  Actually, the strain of Salvia kids have smoked has been illegal in Kansas for the last few years. 

I have now been assured by two people that blood meal will repel squirrels  and by another person that the vines will absorb the Cayenne pepper — one bite sending the squirrel screaming in agony.  For some reason the movie Caddyshack, Bill Murray and Gophers just popped into my mind. 

With Mary Ann supervising, in the last week or so, I have planted three large pots on the deck, an area behind the house, a barrel near the front door, a small area in front of the house and will soon plant a vining Petunia on a berm next to the house.  There is very little rhyme or reason to the plants and flowers picked and only limited aesthetic value, but at least they are planted. 

Since our circumstances tie us to the house much of the time, it seems worth the effort to work at creating a nurturing environment.  Flowers and plants are a part of  creating that environment. 

One of the activities that creates interest at home for me is creating a friendly presence for the birds.  There are eleven feeders of one sort or another attached in some way to our little deck.  In addition there are a couple of ground feeding areas in the back yard near a tree behind the deck.  There is a heated bird bath attached to the rail.  I have just hung a new little meal worm feeder outside my office window at the front of the house.  I am still in the process of waiting in hopes that a neighborhood wren will discover it.  We have a speaker in the dining room that picks up bird sounds from the deck area through a microphone just outside the window. 

We have planted trees in the back to provide shade and cover for the birds and squirrels and aesthetic variety.  The wildlife that has wandered through includes a couple of Mallard Ducks who regularly come by to eat, a possum seen once foraging in the feeding areas under the tree, last night a brazen Raccoon stopped by to climb on the deck and munch seed from one of the bird feeders.  I have seen his paw prints more than once in the bottom of the birdbath.  Rabbits hang out under the deck and often join the others at the feeding areas. 

We live in a maintenance free cluster of townhomes with multiple subdivisions in all directions.  We have created such a welcoming space for wildlife because I find their presence to be nurturing to my mental health.  Mary Ann enjoys it some, but mostly just tolerates my penchant for feeding the fauna.   

Next week ABC Ponds will begin work on the pondless waterfall that will be constructed behind the deck.  What precipitated the idea was the need to deal with a problem with standing water behind the houses in our area.  Sump pumps cycle constantly emptying into the area.  The clay will not absorb rain water when comes.  What will be created is essentially a manmade wetland with a deep reservoire filled with natural filtering material, covered with perennial native marginal plants.  The water will be pumped from the base of the well to the waterfall.  Kansas State University has been using this process in recent years to deal with run off. 

The environment I have sought to create is not just a novelty.  It is an essential element in my survival here.  The television provides entertainment for Mary Ann.  I watch my share of it but find it to frustrate my sense of well-being rather than nurture it. 

Many a day we are not able to set foot off the property due to the complexities of Mary Ann’s physical needs.  There need to be nurturing elements in our environment. 

Inside the house are paintings, a metal wall sculpture, antiques, crystal and china and ceramics to add quality and variety to the interior of our home.  A few  years ago I commissioned two members of the congregation, a cabinet maker and an artist to create a small worship center that sits in my office, providing a focal point for meditation.  We have a sound system in the living room that provides a good quality of sound for the occasional time after Mary Ann is in bed for just listening to music that feeds my spirit. 

If I will be a healthy and able Caregiver for Mary Ann, there needs to be regular access to that which nourishes my well-being.  I am then better able to provide for her as nurturing and safe and healthy an environment as possible.  Rather than allowing the four walls of our little living space to be confining and boring, empty of the richness we both need to maintain our emotional health, we have committed our time and resources to creating a nurturing space in which we can live meaningfully. 

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.

I cleaned the kitchen floor two days ago.  I got out the Swiffer WetJet with the little button on the handle that squirts some cleaning liquid on the floor to be wiped with the pad at the end of the mop handle.  It is not rocket science.  I didn’t break a sweat.  The floor looked nice afterward. 

I have an earned doctorate; at one time I could read with limited proficiency five languages (English, of course, plus Latin, Greek, Hebrew and German).  At this point I can barely handle English.  I will not bore you with the details of the work that I have done in my career.  Suffice it to say, I could complain that cleaning the kitchen floor with our Swiffer WetJet was hardly important enough to be very satisfying. 

There was something satisfying about sweeping the dirt off the floor (I tracked in some dirt earlier in the day), then squirting and rubbing until the spots were removed.  My days are mostly filled with pretty simple and mundane tasks.  I get Mary Ann to the bathroom, to the table, bring her pills and juice and yogurt and Cheerios or Special K or Cinnamon Toast or a banana or a granola bar for breakfast.  I clean out the commode from the night before, make the beds, get Mary Ann dressed, maybe wash her hair.  I put wash in the washer, switch it to the dryer, fold it and put it away.  I fill the dishwasher, run it and then empty it. 

There are very simple meals to be made for lunch and for supper.   We sometimes head out to get something to eat at one of our regular spots.  I feed the birds and read emails while Mary Ann watches television.  I suspect I will not be nominated for one of the Nobel prizes for notable accomplishments in household care.

The role of Caregiver does not bring with it great public recognition, although the article Linda wrote on our situation did give us a moment of notariety in our local paper.    Each of the things I do during the day seems to have little importance, little value in the grand scheme of things. 

Within the history of the spiritual journeys of leaders in many religious traditions, there is a certain approach to doing each task, important or not by external standards, in a way that recognizes its inherent value.  The Rule of St. Benedict provides great attention to detail. urging all to work at menial tasks no matter their status.  Celtic Spirituality emphasizes focusing full attention single-mindedly on the task at hand, no matter what it is. 

I was in a committee meeting one evening.  The group was a fairly congenial crew, at least most of the time.  We were gathered to evaluate candidates for an opening at the Elementary school sponsored by three congregations.  I am not sure what triggered the interaction, but somehow the matter of the need to multi-task came up.  One of the women in the group immediately said that recent studies of the brain had revealed that women’s brains were hardwired for multi-tasking, and men’s brains were not.  Now I have no idea of the validity of the information.  I did however have a wonderfully annoying reply.  I said that may be true, but men do one thing at a time and do it well.  After the laughter subsided we went on with the meeting.  I still don’t know what was so funny about that.  Actually, I couldn’t even complete the sentence about men doing one thing at a time and doing it well since I was laughing so hard myself. 

There is something to be said for doing one thing at a time and doing it well.  Another way to say it is that it is good to focus full attention on the task at hand, to immerse yourself in it, heart and soul, to avoid distractions as much as possible. 

It seems as if much of what we do is done as quickly as possible to get on to the next thing or the really important stuff.  There is a sense in which we simply miss a good portion of the life we are living day by day, in anticipation of what will come later in the day or tomorrow or later in the week. 

Rather than measuring the importance of each task by what importance it has to others, or how much value it has in the marketplace,  how about paying attention to the task itself.   A priest named Ed Hayes has written some great tools for learning to pay attention to every task, big or little.  A couple of his books are Pray All Ways and Secular Sanctity. 

Whether a person has a spiritual understanding of reality or not, being present with each task while doing it provides an opportunity to recognize the importance, value, meaning, purpose of even the simplest of activities.  It is calming and satisfying to do one thing at a time and do it well, or do it with intentionality. 

When I listen to music, I usually do not use it as accompaniment for something else.  I listen to it.  The music sometimes becomes very powerful in touching me deeply when it could not if I was doing something else at the same time.  When I wash Mary Ann’s hair, it gets my full attention.  When I make the beds, the doing of it creates a feeling of order to my day.  Feeding the birds provides a meaningful intersection with a world outstide the walls of our house. 

Being present with whatever we are doing does not demand searching for some sort of deep meaning.  I suspect in the world of sports it is sort of like being in the game.  

The speed with which life comes hardly seems to allow the possibility of doing one thing at a time, being fully engaged in a single task.  I think it is fair to ask the question, does multitasking actually get more done, or does it just get less done on each of more things?  How much safer would the roads be if drivers did one thing, drive the car.  How many fewer errors in operating rooms would there be if the doctors, nurses, technicians all gave exclusive attention to what they are there to do.   

Rather than treating the simple daily tasks as throw-aways of little value, engage each one fully, experiencing every dimension of it, soaking in the sounds and smells and sights and textures and maybe even tastes.  Rather than measuring its importance by some external standard, allow its inherrant value to emerge, from the inside of the task. 

Do each task as if it is important.  It will become so, and with it meaning and purpose and value will be added to each day.  Caregivers’ lives are filled with mundane tasks, mundane, but important. 

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.

The extension ladder is old and not very stable.  The years of very little exercise have stiffened this sixty-six year old body so that moving up and down a ladder is not such an easy task any more. Lifting the ladder off the hooks in the garage tested my wheelchair lifting muscles.  Then there was the matter of moving the ladder every few minutes along the gutter so that I could climb up with my bucket, hook it on a rung and grab handfuls of smelly rotted little seeds from the neighbor’s trees.

I am not much of a ladder person.  Heights are just not my thing.  I suppose I am sort of acrophobic.  I don’t mind riding in an airplane, although recent news events may change my opinion on that.  On Youth trips to a beautiful camp fifty miles northwest of Colorado Springs called Lutheran Valley Retreat, I joined in the climb up Cedar Mountain.  I still remember my first time.  I was terrified.  As a pastor and counsellor on the trip, more than ten years older than the oldest of the Youth, I was too embarrassed to admit it.  The way I got through the climb that first year was to convince myself that if thirteen year old people could climb it, at thirty, I ought to be able to climb it.  I decided that in spite of my insides being less sure of it, I was safe.

Other than the year the lightning almost got us, I felt safe from then on.  After the first year I was a seasoned pro, climbing with bravado.  Still, if I am not completely confident that I am secure, heights are very unsettling to my insides.  I will not walk to the edge of a very tall building to look out windows if they are floor to ceiling.  Vertigo sets in.

As I was climbing up the ladder to clean out the gutters yesterday afternoon, the issue of my safety came to mind.  The ladder sometimes slipped at the top toward one side or the other as I climbed up.  I started thinking about what I would do if it fell, where I would land, what way to jump if it started going.  It was not a particularly scary thought to me, just a matter of fact analysis of the situation.

As I was analyzing the dynamics of falling, it popped into my mind that hurting myself would not just be a matter of getting fixed whatever broke, arm, shoulder, knee, or something worse.   What about Mary Ann.  She needs me to do the most basic daily tasks with her or for her. Hurting myself would hurt her.  She counts on me. If I were to do something stupid, our ability to maintain our little world would be gone, at least for a time.  She would certainly be mightily irritated with me.

The way I responded to that realization was to become very methodical about setting the feet of the ladder, making sure it was flat against the gutters.  I stepped up the ladder more slowly.  I caefully hung the bucket for the sludge.  Thinking about my responsibilty to Mary Ann as Caregiver translated to more care of myself.  

What happens to me is not just about me.  Those of you who have children are likely to have come to the realization that the choices you make do not just affect you.  Riding a bike without a helmet, ignoring the seat belt, driving twenty miles over the speed limit (under ten is okay, right?), smoking like a chimney, whatever puts you at a significant health risk is more than an issue of your freedom to do as you please.  It is no longer just about you. 

There is also a frustrating flip side to the matter of keeping safe for the sake of our care receiver.  What would be fair, if fairness were an option, is for the one for whom we are caring to have the same concern for keeping safe.  It would seem fair for the Care Receiver to avoid taking risks so that their Caregiver would not have an even tougher time trying to deal with the consequences of their risk-taking gone bad. 

I hesitate to bring this one up again, but it is one of the most difficult areas in our relationship as Care partners.  It seems that one of us in this partnership is intent on taking risks no matter how likely the risk is to produce more work for the Caregiver.   The truth is, there is no thoughtful intent to make work for the Caregiver by taking unnecessary risks.  The kind of thinking that would be needed for that intent is no longer available.  The risky actions are just the reflex actions of a mind and body with the simple need for the freedom to move at will and do the same things that have always been done.  There is no fully conscious awareness that the disease process has taken away some freedoms. 

Nonetheless, it is very difficult to watch a Loved One assert that independance without regard for the consequences to herself or her Caregiver.  It is just part of the reality within which we live now that Parkinson’s and Parkinson’s Disease Dementia have joined us in our journey.  Fairness is irrelevant to matter of safety. I need to keep myself safe so that I can continue to care for her.  She is free to do whatever she can no matter the risk. 

Nobody said life is fair.  If it was fair, she wouldn’t have to deal with the ravages of the Parkinson’s in the first place.  It is not fair, it just is.

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.

Should we go to the Neighborhood Brunch or shouldn’t we?  It took at least three days to get the decision made.  The way I finally figured out whether Mary Ann wanted to go or at least was willing to go, was by jumping up to help her when she got up from her chair and headed out to the kitchen.  She was looking for the recipe for the Blueberry French Toast that has always been a hit at the Brunch and wherever else we have taken it.  She finally signaled her wishes by her actions.  it was 5pm in the afternoon of the day before the Brunch.  We had only a few of the necessary ingredients in the house.

Getting decisions made is an unbelievably difficult challenge in our household.  We have regularly played the “What do you want to do?” game.  We almost always played that game when it was time to go out to eat. It is a miracle that we ever actually got to a restaurant and ate.  The process of deciding where to eat always went the same way unless some external circumstances led both of us to the same idea immediately.  If it was time to eat and we happened to be near Bobo’s Diner, the decision was easy – still is.  The vast majority of times it went this way, I began listing every restaurant that I could think of until I named one that brought to Mary Ann’s mind a particular menu item for which she was in the mood. Sometimes that went on so long I started heading home out of frustration.

Some things have changed as the disease process has taken its toll on Mary Ann.  The Parkinson’s has softened her voice and slowed the mental process, making it difficult to respond to questions.  The Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) has stolen even more decision-making ability.  Sometimes it is almost impossible for Mary Ann to get hold of what she is thinking.

Imagine trying to play the “What do you want to do?” game when the person being asked that question has absolutely no answer, no idea how to answer.  Please understand, that does not mean there has been any change in the wanting of certain things.   It is just next to impossible for them to locate that want, name it, and get the words out of their mouth.

As with most of us who are doing full time caregiving, much of the time I can read Mary Ann like a book.  I may very well have enabled her lack of responsiveness by figuring out what she wants without her having to say anything out loud.  We have been at this relationship for well over four decades.  I can usually figure out what she wants by analyzing the circumstances at a given moment and remembering what she has wanted a thousand other times in those circumstances.

Making a decision on anything other than routine matters where circumstances can easily be read is often a protracted and painful process.  I asked about the Neighborhood Brunch occasionally for a couple of weeks.  There was no reply, nor were there any non-verbals that gave a clue as to her wishes.

I suppose the question could be asked of me, why bother to include Mary Ann in the choosing.  Why not just make the decision and go with it.  For one thing, that is not how I function. Ask those poor folks who worked with me in a Team Ministry.  Being inclusive of everyone in the process of making a decision at work often makes for a better decsion and more likelihood that all the participants will be on board when it comes time to act on the decision.  On the other side of it, I know there were times when we processed things too long and everyone wished as the Senior Pastor, I would just make the decision so that everyone could get on with doing what we were talking about.  As I often admitted, I just wanted to work it out so that I wouldn’t get the blame if the decision turned out to be flawed.

Why include Mary Ann in the decision-making?  She deserves to have something to say about her own life.  Because of the Parkinson’s and the cluster of additional health issues, she has had stolen from her any shred of control of her own life.  She has always been strong-willed, so running roughshod over her wishes would not work.  She would figure out a way to stand up for herself, even if she might take a passive-aggressive approach.

I work very hard at trying to give her the chance to decide what we will do.  I usually try to guess what she wants and then frame the question about what to do by saying “would you like to [insert what I have guessed she wants to do].”  I often have to follow it with “just say yes or no?”

As the Satuday of the Brunch got closer, I became more specific about the options.  If we went to the Brunch it would mean having the hassle of making the Blueberry French Toast, but then we would have the valuable social interaction.  I probably said it in a way that would have revealed to the attentive that I was not much interested in the task of making the BFT.  For the last two days before, I tried the “do you want to go, yes or no?” approach a number of times.  There was no response, nor where there any non-verbals I could read.

By Friday afternoon, I was specific that if we were going to go, we would need to go to the store soon.  The recipe demands that the BFT sit overnight before baking.  Still there was no response.  I don’t remember how long after that attempt at getting a response she got up with that restlessness that indicates there is something she intends to do other than the usual.  It only took me seconds to put two and two together.  She was looking for the recipe.  We were going.

I have to admit that there is a part of me that resents that she had not given any indication sooner and that her decision meant I would need to get us to the store, come home, make the Blueberry French Toast while trying to include Mary Ann in the process of making it (harder than doing it myself).  I dreaded the fact that I would need to get up at least two hours earlier than usual to get myself cleaned up, get the dish out of the fridge to stand for thirty minutes, cook it covered for thirty minutes, uncovered for another thirty minutes, make the blueberry sauce that needed to be cooked just the right length so that it could be poured over the casserole just before serving it.  During that same time Mary Ann needed to be aroused, dressed and fed so that we could make it to the Brunch on time.

When all was said and done, the Brunch went well, the Blueberry French Toast was a hit (the huge pan came home completely empty) and we enjoyed the morning.

Making decisions is terribly difficult to do, but Mary Ann deserves to be a part of them.  As frustrating as the process can be, it is important that Caregivers and Care-receivers make decisions together.

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

Added bonus:

12 slices white bread
2 8oz. cream cheese
l c blueberries / 12 eggs /2 c. milk
1/3 c. maple syrup

Sauce: l c. sugar l c. water
2 T cornstarch l c. blueberries
l T butter

Cut bread into l inch pieces. PLACE 1/2 in buttered 13 x 9 baking dish. Cut cream cheese into l inch cubes. Place over bread. Top with berries and rest of bread. Beat eggs. Add milk and syrup. Pour over bread mixture and chill overnight. Remove from fridge 30 minutes before baking. Cover and bake at 350 for 30 minutes.. UNCOVER and
bake for 30 minutes or until set.
SAUCE: in a saucepan combine sugar, butter, and cornstarch add water. BOIL for 3 minutes over med. heat stirring constantly. STIR IN BERRIES and reduce heat. Simmer for 8-10 minutes. Pour over French toast before serving

Mary Ann Tremain
Faith Lutheran Cookbook 6/25/02

Mary Ann and I have now had our fifteen minutes of fame.  The article on our situation, with picture and all, was published  in our local paper yesterday morning.  The fame has already faded.  Oh well.  Who wants to be plagued by the paparazzi anyway. 

At various times during the day today, I stopped by the computer to read  posts on the spouses of those with Lewy Body Dementia online support group.  Since there is an expectation of confidentiality in that group, I will use no names. 

One member of the group wrote a very graphic and painful post, venting a level of frustration she feared would shock all of us.  She revealed a depth of pain that is almost beyond description.  What drove her to write was not just a passing moment of feeling sorry for herself.  It is hard to imagine anyone going through the impossible dynamics of her circumstances and surviving. 

What is more frightening is that no one was shocked at her shocking vent.  They understood.  She just put into words feelings that many in the group experience.  What is frightening about it is that it revealed just how much pain there is out there.  What is frightening about it is that those of us who are not yet experiencing the later stages of the dementia in our spouses have that level of pain to look forward to. 

One of my first thoughts was thanksgiving that Mary Ann has a comparatively mild level of dementia at this point in its progression.  We have a quality of life that would be the envy of many who are immersed in the worst of the dementia.  We can get out to eat — maybe a little messiness, but the job gets done.  Mary Ann’s memory is still better than mine.  That is pretty scary!   Since she is lighter than I am; I can still provide the physical help needed to get basic needs met.  Our communication is limited, but it still happens.  We can travel, with some difficulty, but we can do it.  Mary Ann’s needs are still within the range of our friends who volunteer to spend time with her while I do other things.  Most nights she sleeps reasonably well. 

As I have revealed in some of these posts, we have frustrating challenges that push us to the limit.  We live in a narrow margin of functionality.  We are one fall away from the end of being able to manage here at home.  Any compromise to my health could destroy our system here with one another.  None of the other options out there is acceptable to either of us.  One or the other of them might become necessary, but they are still not acceptable. 

While the difficulty of our situation does not measure up to so many others’ situations, venting frustrations is still a necessary safety valve.  Those of us to do the caregiving and those who receive it need to release some pressure once in a while to stay sane! 

I am convinced that it is healthier to name the pain we are in once in a while, to admit to ourselves and whomever we trust enough to do so, that we just can’t handle it any more.  It is far healthier to vent than it is to try somehow to sustain the illusion that we are fine when we are not always fine.  We may want everyone to think we are noble, self-giving, saints who just love caring for our Loved One every moment of every day.   The price we will pay for maintaining that fiction will at some point be a psychic meltdown — probably a physical one too. 

The challenge is to find ways to vent our frustrations without hurting ourselves or anyone else.  One of the best ways seems to me to be just what the person in our online group did when she wrote out all those thoughts that seemed to her to be so horrible.   Another way to vent effectively would be to have a trusted friend or cluster of friends who can listen to some ranting and raving without getting upset with you, or worse yet, telling you that it isn’t as bad as you think. 

Some work out their frustrations in other ways.  The occasional, “oh fiddlesticks” or “gee willikers” spoken with great gusto can release a little tension.  Just make sure that the grandchildren are not within earshot.   One of my vents of choice is to string together a long, loud and involved rational explanation as to why what just happened should not have happened.  My kids just loved those lectures.  They would often say, “Dad, can we hear that lecture again, it would be so good for us.”

I have said this in former posts.  Taking the time to process what we are going through and writing about it in this blog has provided a surprisingly powerful mechanism for working out my frustrations.  Maybe it is as simple as talking the frustrations to death.  (And  you wonder why my posts are so long.)

There is a piece of reality that frees me to take off the rose-colored glasses, look past any illusions about my goodness, or strength of character, and expose the nastiness in me, the ugly character flaws.  I understand the One who made me to love me so powerfully that my nastiness, character flaws, even my doubts and anger are not strong enough to ward it off.  I can vent to my heart’s content and remain safe and secure, able to get on with life in a meaningful way after the safety valve has released some pressure. 

For those of you who do not share my understanding of reality, the same is so.  Setting aside the pretense and the illusions and facing down the harsh realities of who and what we are, provides us with a sort of reality therapy that allows us to get through the worst times and come out able to live meaningfully in the face of terrible circumstances. 

Caregivers need to vent frustrations.  Just don’t hurt yourself or anyone else when you do the venting!

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.

She suggested it!  “Let’s go to Braum’s for ice cream.”  Understand, the closest Braum’s is in Emporia, Kansas, an hour’s drive on the Interstate.  We usually take more scenic roads resulting in closer to an hour and a half drive time. 

Noble husband that I am, I will make the sacrifice, drive us to Braum’s, and out of the goodness of my heart join her in eating a two scoop Hot Fudge Sundae topped with salted pecans, real whipped cream and a cherry on top.  Sometimes I surprise myself with my generosity. 

Here is the rub.  When Mary Ann suggested going, it was too late in the day and storms were coming.  Thinking through that sort of information and making a decision demands using what is referred to as the Executive Function of the brain.  The mild Parkinson’ s Disease Dementia that has recently been added to the Parkinson’s Disease has dimished that particular function. 

The plan then was to go the next day.   As the next day progressed a combination of intestinal activity and fainting (Orthostatic Hypotension) flipped the nap switch in her.  I say it that way because the fainting spells sometimes drain from her the capacity to be up and about.  When the nap switch flips, it is sometimes a challenge to get her to the bed and settled there.  She may crumple to the floor wherever she is when the need for a nap hits. 

The next day included an evening activity, the Parkinson’s Support Group.  There was no moving fast enough to get the trip in before the meeting.  The day after that (yesterday) we planned to go again.  The day was completely clear other than the outing to Braum’s.  The weather was spectacular.   It didn’t happen.  It was a nap that filled the time we were going to use to make the trip.  This time it was not that the nap switch flipped, but it was the need that comes more and more often. 

Parkinson’s Disease Dementia is a Dementia with Lewy Bodies.  It patterns itself differently than Alzheimer’s Dementia.  There is a different part of the brain affected.  One of the symptoms of the progression of the disease is daytime sleeping.  Some days there have been two naps.  The usual length of a nap is two to two and a half hours.  We never know when the need will arise.

Yesterday there was no trip to Braum’s.  Today, I was determined it would happen.  I planned to add another stop along the way.  I thought phoning a friend of Mary Ann’s to come along would make the trip more enjoyable.  Jeanne and Mary Ann enjoy each other, she helps when Mary Ann needs to use a public bathroom, and since Mary Ann is barely verbal, Jeanne adds to the conversation when we travel.   She was not able to join us for the trip, but I was still determined to go. 

Again, the day was beautiful.   We ate some lunch at home.  I made some surprisingly tasty chicken salad.  Those who have read many of the posts on this blog appreciate what a remarkable accomplishment it is when I make a meal, especially one that is fit for human consumption. 

Almost immediately following lunch, the nap need arose.  By the time Mary Ann awoke, the trip to Braum’s was again out of the question.

Why bother to plan anything?

I am a planner.  I get in my mind how the day will go, what needs to be done, and varying from that plan upsets my equilibrium.  The role of full time Caregiver has resulted in the dismantling  of my daily structure. 

Caregivers respond, they do not work a predetermined plan.  Mary Ann’s needs come when they come.  She cannot fill them herself.  That is my job.   The challenge is trying to figure out how to keep from going crazy since as a Caregiver, I have very little to say about what I will be doing and when I will be doing it. 

For eighteen years of my almost forty years in ministry before I retired, I worked with Youth.  The first three years in the ministry I taught religion classes and served as a Pastoral Counselor at a large parochial high school of some 900 students.  For the next fifteen years, working with Youth in a congregation was a major part of my portfolio.  When leading Youth activities and classes and retreats, I learned quickly that there needed to be a detailed plan in place but along with that plan a willingness to throw the plan out completely if circumstances demanded it.   

That is exactly the sort of planning needed to be the primary Caregiver for someone who needs help with most everything they do — without the Caregiver going crazy.  My goal from the day I retired has been to have options immediately available so that if Mary Ann’s needs eliminated whatever we had planned, something else could be substituted. 

What that means most of the time is that I need lots of small tasks that can be done here at the house while Mary Ann is napping, or interested in a televsion program.  The hardest part of adapting to this new pattern has been gaining the ability to let go of plans I have in my mind without becoming resentful and grumpy.  In that regard, I am still a work in progress. 

Today, when Mary Ann woke up, instead of heading for Braum’s an hour away, we went to the Baskin and Robbins on the other side of town, drove by the beautiful Ensley Gardens and came home.  A Hot Fudge Sundae made with Nutty Coconut ice cream with chopped nuts, whipped cream and a cherry on top goes a long way in calming the ruffled feathers of a planner whose plans have just been frustrated. 

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.

How would you like to have a nickel-sized hole drilled in your skull and a wire threaded through your brain from the top of your head to the bottom of your brain, right at the brain stem?  That is where your brain meets your spinal cord.  How would you like to have that procedure done while you are awake?  And then how about having a second surgery just like it five weeks later?

Tonight at our Parkinson’s Disease Support Group meeting, there were a number of people present who have done just that.  They have had the Deep Brain Stimulation Surgery to help control the symptoms of their Parkinson’s Disease.  Their willingness to seek out such a surgery should give us a clue as to just how hard it is to live with Parkinson’s Disease.  The surgery does not cure the disease, it just sets the clock back a while so that the person living with Parkinson’s returns to a quality of life they had before the medications side effects began to outweigh its benefits.  Ideally they gain four to six hours of fairly normal mobility.

A technical description of the surgery can be found on the Kansas University Medical Center’s web site:  “To treat Parkinson’s disease, DBS [Deep Brain Stimulation] delivers controlled electrical stimulation, most commonly through bilaterally implanted electrodes, to targeted cells in the subthalamic nucleus (STN) or internal globus pallidus.”

Tonight Dr. Jules Nazzaro, the Neurosurgeon who does the surgeries talked with the group in detail about how he does the surgery.  He then spent a great deal of time answering questions.  There were some in the group who were considering the surgery, one very anxious to have it done as soon as possible.  One of those present who had the surgery a year ago, when asked how it went, got up and walked around the room.  There was no obvious evidence that he had Parkinson’s.  Before the surgery he fell about a dozen times a day, had a hand tremor, was taking well over twenty pills a day to help give him some mobility.  He is now taking only four pills a day and will soon reduce that to two.  After a time those pills create at least as many symptoms as they control.  Reducing medication is one of the most thrilling of the results of DBS.

There is a rigorous evaluation about three days in length to determine if a patient with Parkinson’s is likely to benefit from the surgery.  First of all, the person needs to have what is called idiopathic Parkinson’s rather than some form of Parkinsonism.  Parkinsonism is some other pathology that produces Parkison’s-like symptoms.  Because of the time spent working in the brain itself, those for whom the disease has progressed to the point that there are memory problems are vulnerable to those problems worsening. There are a variety of criteria for qualifying for the surgery.

Dr. Nazzaro is part of a team including Neurologist, Rajesh Pahwa, who happens to be Mary Ann’s Neurologist.  Dr. Pahwa is the one who determines whether or not a person is a good candidate for the surgery.  He prescribes and manages the complex regimen of medications that control Parkinson’s.  Dr. Pahwa is a master at finding just the right formula of pills to match each Parkinson’s paticnt’s unique needs.  When the medication options have finally been exhausted, but the patient is still healthy enough to go through it, Dr. Pahwa finally recommends considering the surgery.

It was a number of years ago that he suggested the surgery for Mary Ann.  She was just not interested.  At that time, I had mixed feelings about it.  I wanted her to have it, but I was not willing to try to influence her decision.  For one thing, selfishly, I didn’t want to have any responsibility for the decision if something went wrong.  As is obvious, there are risks to the surgery.  A second consideration is the importance of the attitude of the patient undergoing the surgery.  The patient her/himself has to make the decision and be committed to the recovery.

Actually, the two surgeries putting the lead deep into the brain are two of four surgeries.  There are two additional outpatient surgeries to thread a wire from each of the two leads under the skin into the chest area and insert the two generators.  The generators are turned on and off by a magnet.  The generators stimulate  specific areas of cells, actually to reduce their activity.  The missing dopamine that causes the Parkinson’s is what usually controls those areas.  One of those areas produces tremors if not properly controlled and the other produces immobility if not properly controlled. At least that is my understanding after attending so many Parkinson’s Symposia.

As an aside, Michael J. Fox has had what is called a Pallidotomy.  In that surgery a permanent lesion is made on the Globus Pallidus to reduce its activity and help control the movement difficulties that come with Parkinson’s.  One advantage of the DBS surgery is that it can be reversed.  There is no permanent damage to the brain should some more effective treatment come along (or a cure!).  If I understand correctly, controlling the two areas has a better track record for reducing symptoms and the need for medication.

At this point in the progression of the disease, along with the other major health problems that have joined the assault on Mary Ann’s body, she is no longer a good candidate for the DBS.

The surgery is recommended now earlier rather than later in the disease process.  It is a quality of life issue.  I have often heard people say that they finally had their back surgery or knee or hip replacement surgery when the pain was worse than their apprehensions about the surgery. The same is so for DBS surgery.  When finally the symptoms of the Parkinson’s itself and the side effects of the medication are  frustrating enough, the DBS surgery offers hope for a better quality of life.  There are not guarantees that come with the surgery, but the track record is very good.

University of Kansas Medical Center did the first DBS surgery, and Drs. Pahwa and Nazzaro are among the very best in the nation.  For those who are suffering the effects of Parkinson’s Disease, if the time is right, DBS surgery offers hope.

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.

She was taking so many pills, it just seemed as if the problem was acid reflux.  Looking back, it now seems so obvious.  Her chest would start hurting when we walked very far.  It often seemed to hurt when she had strong dyskinetic movements, the ones that come with years of taking the main Parkinson’s med, Sinamet.  The movements are the ones that Michael J. Fox often has.  I can even remember once hearing her say as we were walking back from the mailbox, I think I am having a heart attack.  The pain always seemed to subside after a bit.  There were so many aches and pains that were attributable to some aspect of the Parkinson’s that I just didn’t put two and two together. I take some comfort in realizing that neither did our General Practitioner or our Neurologist or our Endocrinologist or our gastroenterologist put two and two together.  As many medical tests as Mary Ann had had in more than a decade of the Parkinson’s no one spotted it.

When finally one night she had a heaviness in her chest and she went to the Emergency Room, the process began that revealed she had blocked arteries. She truly had had some silent heart attacks.

It seems so obvious now as I look back.  I think what happened is that the one already diagnosed major degenerative disease, Parkinson’s, took up so much space in my perception of our reality, that there wasn’t room for another health issue.

I remember when ministering to parishioners before I retired how difficult it was for people to handle multiple problems at once.  Some seemed to feel that if there was one health issue or other major problem in theier lives they had reached their quota for problems.  If a second and third major problem joined the first, it was an affront to fairness. How could it be?  The one problem was enough.  How could another problem and then one more be added?

Our journey has taught me in no uncertain terms that having one major problem does lessen the likelihood of having another.  Mary Ann has the Parkinson’s, high blood pressure problems, low blood pressure problems, low thyroid — she has had congestive heart failure, a major life-threatening pneumonia, four spots of skin Cancer removed. Some health problems actually make a person more susceptible to certain other problems.  When that is the case, the doctors and the Caregiver watch out for symptoms of those problems.

It is when a health issue emerges that is not related to the main diagnosis that it can slip in unnoticed.  Just because Mary Ann has Parkinson’s does not mean she cannot have some other health problem.

The same single focus can cloud the perception of Caregiver’s and doctors when the patient is elderly.  New symptoms are dismissed as a consequence of getting older.

What brought this topic to mind was the trip to the Dermatologist to have the stitches removed from the surgery on Mary Ann’s latest Basal Cell Skin Cancer.  I asked the doctor to look at a couple of other tiny spots just to be sure.  They are no problem.  We did, however, make a routine appointment for six months down the line.  I will continue to watch for spots on her skin that look suspicious.

The Parkinson’s needs not to cloud our perception or lessen our vigilance for other problems.  Mary Ann has her annual Mammogram.  She has a periodic Colonoscopy.  Blood tests check her thyroid activity, urine tests check her kidney function, her blood sugar level is checked along with her cholesterol. She has gotten the Pneumonia shot and will get the booster in another couple of years.  She routinely gets the flu shot.  She has gotten the shot to help prevent Shingles.  Her eyes are checked for Glaucoma, Macular Degeneration, and cataracts.  She has had a bone scan for Osteoporosis.

There are no rules concerning how many or how few health issues one person may have.  Things just happen.  Problems come when they come.  It is not a matter of fairness or lack of fairness.

Whether a chronic illness has joined your household or not, there needs to be the same amount of vigilance.  We all need to do whatever is reasonable and affordable to check for and help prevent the onset of the common diseases that come to many as the years go by.

I now look at and listen to Mary Ann more attentlvely and no longer assume that whatever the pain, it must just be the Parkinson’s.  There is no quota for the number of problems one person can experience.  Caregivers who understand that will give better care.

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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