I am not sure I should be writing a post at the moment.  Maybe later in the day will be better.  At the moment she is napping, and I am able to be at the computer to write.  Last night’s post was almost euphoric after the great trip in the country.  I mentioned before closing that Mary Ann was restless.  She was up every few minutes until about 4am.  Then she insisted on getting up at 8:30am after three or four times up to use the commode between the 4am and 8:30am.

The needs began immediately.  As always, after a sleepless night the hallucinations have been almost constant, resulting it lots of time spent trying to pick up and throw away threads.  At one point as she was sitting at the table preparing to take meds and eat, she asked what the pink mesh was about.  She was convinced that she had it in her hands.

When she has had such a night and gets up early and stays up, there is oddly a great deal of lucidity intertwined with the hallucinations.  She is sometimes almost adversarial.  The restlessness has continued throughout the day up to the nap.  She has been popping up without warning almost constantly.  If I am out of sight for a moment, it is almost a certainty that she will get up.  That means even walking out of the room to get something for her won’t work.

I have asked in every way I know that she let me carry cups and glasses of liquid, since balance and fainting are issues.  Gratefully, it was water and not Pepsi in the cup when she went down, and, gratefully, she was not hurt.  Then there is the button by the toilet stool.  As always I asked that she push it before getting up to avoid falling in the bathroom.  I asked very slowly and carefully waiting to hear her agree to do so, out loud — which she did.  By the time I came back to check, she was half way across the bathroom with her slacks gathered around her ankles.

Last night and today provided a picture of how our lives are now being lived.  Mary Ann’s wants and needs at any given moment in the twenty-four hours of each day determine what I do and when I do it, no matter what my needs are or how I feel.  I have chosen this role, so whining about it is pretty futile.

What increases the level of frustration on a day like today is that there is no one with whom to be angry, no one to blame.  While I am not always shy about letting my feelings be clear, most of the time I do what needs to be done without complaint, and even try to be nurturing when I do it.  It is not Mary Ann’s fault that we are in this situation.  I am not a saint, but it is not my fault either.  Problems like this are not God’s idea of a good time.  God gets blamed for all sorts of things that were not part of the original plan, while often getting no credit for the wonder of life.  God doesn’t play games with folks.  Circumstances like ours happen to good people and bad people and people like us who have both good stuff and bad stuff in us.

I am grateful for yesterday, for a good day, some pleasure for both of us.  I am frustrated today, and struggling to keep it all in perspective.  Writing this post helps give some definition to the day that allows it to begin simply to be a challenging day, not a symbol of our entire life.  There is always tomorrow.

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

For those following Mary Ann’s battle with fainting, while I had hope that the higher dose of the medicine that raises her blood pressure to reduce the problem was working, it hasn’t done so well yet.  The fainting continued yesterday.  Today, there was very little fainting.   We will take this a day at a time, and hope that the medicine begins to improve the quality of life.

Speaking of life, there have been a number of interactions on the Lewy Body Dementia spouses online group about quality of life issues.  There are so many brave souls there who have been caring for spouses much more challenging than Mary Ann.

In a post on that group’s site, I mentioned that I had re-framed my life so that I now understand my job to be the care of Mary Ann.  I don’t mean that in a way that makes any less of our being husband and wife.  It is a way for me to think about the tasks I do that gives them meaning and purpose, rather than seeing those tasks as an interference with my life.

There were a number of responses from folks that seemed to struggle with that idea.  They also commit themselves to caring for their Loved One.  Some do better with that care by thinking about the life they hope to lead after their Loved One is gone.  That provides hope that gets them through the tough time.

There were some who observed that whatever our reasons for doing what we are doing in caring for those with a Lewy Body Dementia, we will finally in the end, lose.  This journey will end badly.  In that group we all give one another permission to share our frustrations openly without judgment.  We need a place to do that, especially those who are in the most difficult times in the progression of the disease.

With that said, no matter how devastating and hopeless the situation is, it is, finally, the life we have.  What will or will not be so at some unknown future time, while it can provide some sort of light at the end of the tunnel, is not yet the life we are living.  It may or may not come to be so, but it is not so now.  We are left to try to figure out how to do the best we can with what is so right now.

My intention is to use every resource at our disposal, to fill our lives with meaning and satisfaction.  I am not willing to let meaningful living wait until some future time that may or may not come.

Whether it is a good or bad approach to life, there are lots of things I might have liked to do that I have let go of as options.  They may never be options.  I can feel sad about that, mad about that, fight the unfairness of it all.   In fact I may need to give myself permission to have all those feelings.  Finally, for me, there is neither the time nor the energy to give now to things that may or may not come.  The life we have right now needs our full attention.

Most of the things I am not now doing, singing, traveling, going on spiritual formation retreats, going on bird watching outings, doing part time ministry, volunteering, attending music events, all offer lots of possibilities for entertaining, satisfying experiences.  They are not, however, in and of themselves, the means for bringing fulfillment into my life.  The are the context in which meaning can be found.  Meaning is what we do with the life we have, how we view it, what we take from the context.  Obviously some contexts are harder to live through, than others, some have more pain included, some take more effort to find the meaning, but the life we are living is the one we have.  If there will be meaning and purpose, it needs to be found in that life, not the one we wish we had.

In the sense that it is a certainty that sooner or later death will come, yes, the journey will end badly.  In that same sense, it is true for all of us.  Eventually, we will die, so will those we love.  Today I preached at the funeral of a friend who died at the age of 93, after living a life filled with obstacles to overcome, a life filled with wonderful, poignant, entertaining stories.  Life does end in death.  That is just the way it is.

No matter what our circumstances that end is still awaiting.  Either we accept it and live meaningfully in spite of it, or we allow the fear of death to overwhelm us and steal the joy from the moment we are in.

We happen to have a perspective on life that allows that there is something more than meets the eye.  We understand there to be a Someone with whom we are in relationship, a Someone who provides love and security not bound by finite limis.

With that perspective, we can concentrate on living the life we have as it comes day by day without despair if is doesn’t happen to be the life we would have chosen.

We would not have chosen the life we have, but it is our life.  Each day brings with it challenges, joys, sorrows, relationship struggles and satisfactions, and the opportunity for finding meaning in what we are doing.  Again, it may not be the life we would have chosen, but it is the one we have, the one we will live to the fullest.

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.

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.

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.

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.

Are you as tired as I am of hearing “nowhere does it say that life is fair?”  As painful as it is to admit it, those words are true.  The harsh truth of it is, bad things happen to people, both the good and the bad.  Good things happen to the bad as well as the good people. 

Those of us who are dealing with a devastating illness that holds no promise of improving, can get pretty angry and very bitter.  When we do, we begin the search for someone or something to blame.  If we can find a genetic source, we blame those who provided the gene pool from which our Loved One came.  We can search the Internet and the journals and all the information we can locate to see if there is some environmental factor.  Then we look for whoever may have put the toxin in the environment. 

Sometimes we search for something we or our Loved One has done, some lifestyle cause.  If we  happen to believe in God, when all else fails, we blame God.  Oddly, if we do not believe in God, we use the terrible, unfair, devastating disease to prove that God doesn’t exist.  When we are at a complete loss to explain why whatever it is has come into our lives, we often cease to be rational at all.  It is God’s fault and we will punish God by not believing in God.  If we do not or have never had a religious dimension to our life, we are just angry at the meaninglessness that is intruding into our short stay on this planet. 

What I will say next sounds silly, stupid, shallow, and without any value in helping us cope.  Stuff happens!  You have seen the bumper sticker with more crude language.  Stuff happens!  Whether you happen to have a theology or no theology, faith in something or in nothing, stuff happens. 

If you are convinced there is nothing that exists other than what we can see, measure, or extrapolate from what we can see or measure, then having Parkinson’s or ALS or Diabetes or MS or Lewy Body Dementia or Alzheimers, or Huntington’s or whatever comes is just a fluke of nature, with no meaning. 

If you believe in God, however you define or confine that God, finally, the same is so.  Any God powerful enough, of such  magnitude as to be able to bring a universe of immeasurable size into being, containing powerful forces that could snuff us out in a millisecond – however personal that God may be to you, there is no way to begin to have the perspective of such a God to actually find an explanation that fits into our little minds. 

We cannot answer the question why!  It is a waste of precious time and energy.  We can find our way to the most intelligent human on earth, the most sophisticated computer, the most trusted theologian, the wisest guru, and we will not find the answer to the question, “Why, why me, why us?”

Here is what we can do.  We can look and listen, think and read, talk and ponder all the dynamics of what we are experienceing and do two things: One, learn something.  Don’t waste the pain, the struggle.   Learn something from it.  Two, use every ounce of creativity and information available to do things that use absolutely to the fullest everything you and your Loved One are still able to do — while you can do it.  Put those two things together, and you just might make some discoveries that add to the quality of your life. 

Battle the truth of your situation as if it should not be true, cannot be true, must not be true, and bitterness, cynicism will fill your days and  your relationships; the capacity to find joy and meaning in life will disappear. 

After the hospital stay precepitated by Mary Ann’s congestive heart failure, and the heart attacks and angioplasty and stent, followed by another stay for heart problems, followed by the life threatening pneumonia, followed by the stroke, followed by the Dementia, all emerging after years of battling the Parkinson’s, it dawned on me, that I never really felt that it was unfair that so many things came, one after another.  Fair is not a reasonable expectation.  Just because one thing happened to us, did not mean that we were any more or less likely to experience any other problem (except those of course that are a direct consequence of some current debility). 

No one is punishing us.  We are no better or worse than anyone else.  Things happen.  For us, when they happen, they become opportunities to learn, create solutions, develop mechanisms for finding meaning and fulfillment in what is so.  It is just so.  We can’t explain it or understand it or change it.  We can, however, choose to live in spite of it. 

I wonder what battles you have fought trying to come to terms with what is going on in your life as you deal with what has come your way.   Who do you blame?  At whom do  you scream when you are at your wit’s end?  Where do you turn to try to make sense of what your are going through?