He was just a teenager having fun.  He just didn’t know how shallow it was.  He did exactly the wrong thing, tucked his chin down and dove in.  That was twenty-five years ago.  He was eighteen years old when it happened.

By now he doesn’t really consider the life he might have had, who he might have been had that day so long ago gone differently.  He is who he is, and he doesn’t dwell on what might have been.

We attended our local Parkinson’s Disease Support Group meeting last evening.  Rod Kelley was the speaker.  He was in a manual wheelchair, with very limited use of his hands.  He drove to the meeting and spoke with honesty and confidence.  While his was the result of a diving injury (shattered C6), his journey contained elements that resonated with those gathered there.

Rod spoke of the wonderful cocoon of support that surrounded him after the accident and his return after many weeks of rehabilitation.  He was accepted back into his circle of friends.  If anything it was expanded as people came out to join in the project of helping him.

As time went by and others moved on with their lives, the reality of what was lost sunk in as he attempted to make a new life for himself, forced to take a different path from the one he was on before the accident.  At that point a bout of depression set in.  It was some straight truth from his Mother that broke through to the heart of his will to live life to the fullest refusing to be defeated by his uncooperative limbs.

What struck me as I listened to him was that the key to his choosing life was a simple acceptance of himself just as he was.  That acceptance freed him to grow and challenge the limitations.

He shared that often his speaking engagements are with Children and Youth.  Having worked with Youth for almost half of my ministry, I remember just how those I served struggled to find self-acceptance.  Many were terrified of not being accepted by others to whom they gave the power to determine their value.  Most sought to discover exactly what to say and do, what to wear, how to wear their hair, with whom to be seen, so that they would not become the object of derision, or worse yet, simply a cipher.

Rod’s message of finding self-acceptance in the body of a Quadriplegic seems to me to have potential for freeing those who see themselves as unacceptable for any reason.

Mary Ann has had to find a way to accept her value having lost many of the abilities that had provided a sense of worth.  In her case, the Parkinson’s provided the challenge to her self-acceptance.  She seems to have done remarkably well at moving through her days with a certain confidence about who she is.

When I retired, I began a journey toward a new understanding of myself that did not revolve around my profession.  The journey toward self-acceptance is not over.

Each of us as we move from one time to another in our lives, leave behind certain abilities, relationships, untraveled paths.  We all need to find the way to some level of self-acceptance to be free to live.

The courage of a Quadriplegic informs all of us as uncooperative limbs cease to define his worth and value.  He is what he is.  Knowing that, he has become more than he could have imagined.

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.

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.

As a retired Pastor, I can’t tell you how many times I heard someone say to me that they had no use for churches since church folks are a bunch of hypocrites.   It is certainly true, churches are full of hypocrites, but so is every other place that has people in it.  I am here to suggest that being a hypocrite isn’t necessarily all bad. 

This post is not about churches, it is about Caregivers.  I am convinced that the only way to be an effective Caregiver is to be a hypocrite. 

First of all, there is certainly hypocrisy that is unhealthy.  Debilitating  hypocrisy is the creation of a false image of yourself.  It is the pretense that you are something you are not.  That sort of hypocrisy gets in the way of honest communication.  It hinders growth.  It promotes a kind of denial that blocks the ability to see the truth. 

I have what seems to me to be a fairly realistic view of people.  I expect people to act in their own interest.  As a result, I am often suspect when someone presents himself or herself as a wonderful, selfless, noble bearer of goodness, caring only for the welfare of others.  Let me add immediately that while I am suspect, I do not rule out the possibility that some are exactly that self-giving and noble.  I just don’t expect it.  Most of us are not. 

Those of us who are Caregivers have probably heard others wonder out loud how we do it.  Sometimes we are embarrassed by people affirming our goodness.  I think it is a good thing to accept those words of affirmation, and appreciate that we may very well be doing a good thing.  The problem comes when we begin to believe that we are just plain wonderful and noble.  The problem comes when we allow a false image of ourselves to develop.  That is a kind of hypocrisy that is destructive.  It hinders growth because it is not real.

Caregivers care about ourselves.  There is self-interest folded into our caregiving.  I guess I need to speak for myself rather than for all Caregivers.  The rest of you are probably more noble than am I.  I love Mary Ann.  It makes me feel good to take care of her.  I get more out of it than she does.  I want other people to respect me.  I care about my image with others.  There is a self-serving element to what I do to care for Mary Ann.  I find meaning in doing the care.  I want to have meaning in my life.  This task offers me the opportunity to find that meaning. 

Then there is the harsh truth that I am not always very nice.  I get grumpy.  I sometimes say things that do not build her up but rather simply vent my frustrations.  There will come a post at a later time on Caregiver’s guilt.  In the matter of hypocrisy, it is far healthier to be painfully honest with ourselves as Caregivers, without creating some false image of who we are and what we are doing.

Then what on earth can be good about hypocrisy when caring for someone else who needs your help?  The etymology of the word is helpful.  It has to do with actors and acting.  If I remember correctly from all those years of Greek, the word’s roots are in the use of masks in the pretense of acting.  How can acting be a good thing when caring for someone who needs your care? 

Good hypocrisy is acting in a way that is good and caring and loving and kind, even when you don’t feel good and caring and loving and kind.  Good hypocrisy is not waiting until your insides are spontaneously producing good behavior but instead, just going ahead and doing the good behavior. 

If I were to wait until I am pure and good and wonderful and noble before doing good things for Mary Ann, there would not be very many good things done.  Good hypocrisy is refusing to allow grumpiness and resentment and frustration to decide every behavior.  Good hypocrisy is choosing good when you don’t feel like being good. 

It is very tempting to use the respected trait of honesty as excuse for bad behavior.  “I was just being honest with you when I said those harsh words!”  “It would be hypocritical of me to be kind to you when I don’t feel like it!”

When counseling with couples about to be married, one of the things that seemed to me to be important to say concerned the nature of commitment, duty to one another.    My counsel was to treat each other in a loving and caring and affirming way during those times in their marriage when they did not like each other.   I was convinced that unless they learned to do that, a marriage of any length was unlikely.  The good news is that when they got through one of those times in their relationship, their relationship would be stronger than ever, stronger than it could have been without going through that time.  Mary Ann and I have been married well over forty-three years now.   We have had a pretty normal life together.  There have been times we were enthralled with each other and times we didn’t much like each other.  We chose to love each other anyway (one of our favorite phrases).

The wonder of it is that when we choose good behavior in our caregiving even when we don’t feel like it, we can actually be changed by the good behavior we have chosen.   Just as good behavior can emerge from good feelings, good feelings can emerge from good behavior. 

Maybe hypocrisy isn’t always a bad thing.  Being honest enough to admit to ourselves our selfish motives and unloving feelings frees us to face them down and refuse to let them rule.  Having the courage to be good when we don’t feel like being good allows us to grow into more than we could have been otherwise. 

It seems to me that good health for Caregivers demands enough honesty to face the reality of our own selfish motives and resentments and less than noble thoughts.  Healthy caregiving demands the courage to face all that and still do the right thing, still act with kindness and concern and gentleness.

Maybe a little hypocrisy can be a good thing. 

 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 made it!!!  Last evening we returned from Kentucky traveling 10.5 hours — under overcast skies dropping periodic showers on us as we traveled — all 10.5 hours.  Then, two miles from our home, the sun broke through.   Traveling can be wonderful, thrilling, entertaining, full of comfort with family that is loved very much, and still, coming home feels good. 

Then there was the mail to be opened.  Two pieces of mail in particular dampened my enthusiasm to be home more than the showers had dampened our travel that day.   Both were Caregiver irritants.  The first was another in the seemingly endless array of medical insurance claims denied because someone had a wrong code or a wrong insurance ID number or hadn’t communicated information in the left hand to the right hand or because this Caregiver didn’t get the right information to the right person at the right time.

The second piece of mail that dampened my spirits was what appeared to be a summons for Mary Ann to serve on a jury.  The form to be filled out looked as if someone had printed some sort of printer test page with bar codes and fonts both tiny and bold. 

Now, I am a reasonably intelligent person.  I graduated eighth out of three hundred twenty-five in my high school class.  I tied one other student with the highest numbers on my college entrance exams.  I got a 31 composite score on my ACT and a 34 (out of 36) on the quantitative portion of the test.  I spent eight years in college and seminary, learning to read Hebrew, Greek, Latin and German.  I went back to school and got a Doctor of Ministry degree after ten years of working.  Why am I so intimidated by health insurance forms and jury summons and keeping track of pills in their little plastic holders and making sure that prescriptions are obtained or renewed before the pills run out. 

Why is it that little things seem to have so much power to ruffle my feathers.  So the person who got my order for two pieces of white meat sent me home with a thigh and a wing instead of a breast and a wing.  I actually called and complained (got a free meal out of it).  Things that are of no account in the grand scheme of the universe seem so huge and frustrating.  I have dealt with tough issues hundreds of times over the years, helped families through major crises, worked through substantial budgets, been through crises myself more than once.  Why should I now be undone by chocolate squished in Mary Ann’s hands and on clothes that can easily be Spray and Washed. 

Whether it is verifiable scientifically or not, I am convinced that people have just so much coping capability.   As Caregivers, we live in a chaotic world in which things can change in moments.  We have absolutely nothing to say about what happens to us.  We can do everything it makes sense to do so that there will be a certain outcome.  We actually have no say in what outcome results.  Every time something happens that throws that truth in our face, every time events take an unforseen turn, we are forced to use up some of our coping skills. 

Any of us who have been caring for a Loved One for some time understands that we have pretty much nothing to say about what happens.  Parkinson’s in particular is unpredictable in how it will present itself and how it will proceed.  Lewy Body Dementia is especially insidious in that dramatic changes can take place for the better or for the worse (mostly the worse) at any time, at any pace.  Other diseases have different patterns but no less power to use up a Caregiver’s coping ability. 

So, what can we do in the face of the harsh reality that we are out of control, we are completely powerless to order our world?  We live in total chaos. 

If it is little things that can now undo us, since we have used up all our coping ability on the big things, how about trying to beat this powerlessness at its own game?  If little things can undo us, why not use little things to create some semblance of order in our lives?  Why not create little pockets of control in our lives to suggest to our insides that we actually can survive the chaos — we can refuse to give it the power to unravel us completely.

Here is how I fight the chaos, the feelings of powerlessness.  This will sound stupid and silly, but it helps me survive.  I clean the commode every morning.  I make the beds and fold the corners so that they will not trip Mary Ann when she walks around the foot of the bed.  I fold the chuk that was under the commode, move the clean commode to the foot of my bed.  I roll the lift from the living room where it spends the night into the bedroom to the foot of my bed.  I get Mary Ann’s pills which, every Saturday, I put in the little compartments in which they always go.  I set the pill timers.  I change Mary Ann’s night time pad (like Depends) for a day time pad (each holds a different quantity of liquid).  I get her dressed, velcro shoes for when we are out, making bathroom changes of pads go more quickly.  And so it goes. 

If we can’t control the big things, we can control some things.  When people came in struggling with mild depression (I referred those in deep depression), one suggestion I made was to make a list of just two or three simple things that they could easily do, tiny things.  I suggested making the list and checking off those silly little items when they were done.  Depression seems to come when we have the sensation that we are powerless to do anything about our situation.  My goal was to help them re-train their thinking, their gut, so that some small sense of control returned.

Most people who talked with me about problems that were overwhelming them heard the same suggestion.  Make a list of all the pieces of the problem that seems so overwhelming — usually there were multiple problems converging.  Then take the list and divide it into two lists. In one column, put the things you don’t have the power to control or change.  In the other column list the things that you can actually affect in some way.   The first list for those whose view of reality gives this weight, is the prayer list.  For those who don’t find that a meaningful option, it is the list of things to take off your plate of things to do.  Any energy spent on them is wasted.  If you had the power to change them you would have long ago.  Let them go! 

The second list is the “to do” list.  Take all the time and energy that has been wasted on things over which you have no control, get off your butt and do one of the things on the second list.  If it is too big to do, do something, anything, any part of the thing that is too big. 

Yes, I am a list maker.  Yes, I have put something on the list after I did it so that I could check it off.  Do whatever works for you to help you find some level of control in the face of things over which you have no control. 

Caregivers feel powerless because we are powerless — but not completely powerless.  Our job is to figure out what we can and can’t do, then do what we can and let go of what we can’t.  What is surpising to me is how often it turns out that the little things I could actually do did make a difference — more difference than I thought possible.  

 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 comment on a post I wrote a couple of nights ago raised an issue that is significant for many Caregivers who are doing full time caregiving all day long every day.  The writer mentioned that she often uses the time after her Loved One goes to bed to try communicate with others, since the opportunity for adult conversation is limited.

For many of us conversation that was a routine part of our daily lives with our Loved One and with others has pretty much ceased.  Especially those caring for someone with a form of Dementia find it tough to converse meaningfully.  A number of recent emails from others who are caring for spouses with Dementia have included reflections on the challenge of dealing with the lack of meaningful conversation and the loneliness that sometimes settles in.

Until I retired a number of months ago, I was active in a profession that involved lots of meetings, visiting with people, counseling folks struggling with problems, speaking in front of groups, and many hours each day communicating electronically (email).  All of that came to a halt pretty much the day I retired.  Emails ceased, phone calls stopped, meetings ended, there were no more visits to be made, no more speaking in front of groups.

Now there is one person stuck with me twenty-four hours a day, seven days a week, someone who has never really been a talker and now after twenty-two years of Parkinson’s has taken its toll finds great difficulty getting thoughts into words and sustaining conversation.  She has struggled with the challenge of having me there constantly, so I can hardly complain.  She tired long ago of listening to my voice as it drones on and on.

One comment in an email I read tonight provided an image of the Caregiver in need of communication.  She mentioned that when she was at the dentist getting her teeth cleaned, every time the Hygienist took her hands out of her mouth she started talking immediately, not stopping until the instruments were back in her mouth.

I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.

Anyone who reads this blog has certainly noticed the length of the posts.  When I write I imagine that there are people actually reading this with whom I am having conversation.

Living in a world of silence other than the sound of the television, can certainly produce a deep sense of loneliness.  I suspect there are lonely Caregivers by the tens of thousands out there.  It seems to me very likely that lots of them, probably a majority, are not computer users who have the option of going online and relating to others regularly. If the Caregivers are lonely, imagine how lonely and bored those who need the care must be.

There are no simple solutions to the loneliness and isolation, the boredom and lack of conversation that comes with the Caregiver and Carereceiver territory.  For me the battle with loneliness starts with developing a rich inner life that experiences each moment fully and fills my thoughts with wonderful images from my environment, from reading, from the lives of others I have encountered, from my own story, from a head filled with unfinished business, from intellectual and spiritual curiousity.

While I have never been a writer, the exercise of writing these posts is safisfying and fulfilling.  Reading emails and occasionally responding to those who are caring for spouses with Lewy Body Dementia is engaging.  When Volunteers come to stay with Mary Ann to give her a break from my constant presence, it takes me a long time to get out the door as I engage them in conversation.  I find myself on the phone with brothers and sisters more often than ever before in my life.  Trips to the coffee shop to get a cup of coffee take a little longer. When we attend the Parkinson’s Support Group meetings, I am not shy in speaking up.

Since I am not good at all at small talk, I know very little about sports and I am completely uninterested in debating politics, conversation just for the sake of talking is not all that satisfying.  I suppose I can talk about the weather with the best.  I do have a genuine interest in people’s stories, so given the opportunity, I will find out what you do and what you like and dislike about it, where you have lived, what challenges you have faced and how you are coping with them.  The problem when homebound by the Caregiving task, or the chronic illness, is that the opportunities for such meaningful conversations are limited.

While it helps, electronic communication is not fully satisfying to me since I thrive on the non-verbal elements of communication as well as the actual words themselves. Getting out of the house with the one for whom you are caring is worth the effort.  Go anywhere.  Do anything.  Put yourselves out there where the chance for human interaction and verbal interchange is possible.

Every job has its good points and its bad points.  The trick is to “accentuate the positive and eliminate the negative” as the lyrics to an old song say.  Celebrate what is good that the Caregiving experience brings into your life.  Refuse to give the negative more power than it is due in ruling, in defining your life. I know that is far easier said than done.

Caregiver loneliness — Are you?  What are you doing about it?  What works for you?

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.

As I traveled in the car coming back from my Renewal Retreat, I thought about how the transition back to my role as the full time Caregiver would go.  Having done retreats before, I knew that once I was in the door, there would be little chance to ease back into the demands.   Having realistic expectations about the transition back to Caregiving duties has helped me very much in the last years. 

It is actually unreasonable to expect the person who has been left at home to be anxious to celebrate the wonderful experience you have had away from him/her.  As Caregivers it is important for us to try to put ourselves in the place of our Carereceiver who does not have the luxury of going on a retreat and enjoying some solitude, doing things for the sake of renewal, things they can no longer do. 

Sometimes the very things we do to help maintain our equilibrium so that we can continue to be good Caregivers make our Loved One’s jealous.  How could it be otherwise.  We are the people closest to them.  We are the ones they depend on for all their needs.  They would love to be able to take care of themselves.  They would love to take some time to do the things that used to bring them joy.  They would love to get away on their own just to enjoy themselves.  They can’t any longer.  Our freedom, however limited we may feel it to be, can be for them a painful reminder of the freedom they have lost. 

As a result, sometimes Caregivers don’t hear the words of appreciation for all they do, words they would like to hear.  Sometimes Caregivers receive some passive aggressive indications that they are not appreciated.  Sometimes Caregivers feel as if their Loved Ones resent them instead of appreciate them.  Sometimes they do resent us, whether it is fair or not for them to do so.

I have taken over the kitchen duties from Mary Ann.  Her way of responding if anyone asks about cooking is to say, “Theywon’t let me in the kitchen any more.”  She says it with a tone that sounds blaming.  It is the way she expresses her frustration that she has lost one of her most meaningful activities, one from which she got lots a positive feedback and satisfaction.

When the Grandchilren come and visit, there are hugs and kisses for both Grandma and Grandpa, but I am the one who can respond to the Grandchilren, who can talk with them and read to them and play with them.  The attention they give me is hard for Mary Ann to see.  It is another reminder to her of what she has lost. 

When people visit for any reason, her words are few or barely audible due to the progression of the Parkinson’s Disease.  I am the one who engages in conversation.  She has always been the entertaining one who had the smart-aleck comments to make.   She still has that wicked sense of humor and will get you when you least expect it.  Those who know her well still enjoy her sense of humor.  Now, her thoughts don’t always translate into audible words quickly enough to keep up with many conversations.   Of course, she gets frustrated and a little jealous.   

Caregivers are the ones who are the most accessible when Carereceivers need to vent their frustrations.  Their limitations are highlighted by anything we do, especially anything that was in their territory before the chronic illness took its toll. 

We feel hurt that we are doing so much for them but are not appreciated adequately for it.   One of the tasks that comes with caring for someone we love is to allow them to express their frustration, yes, even at us.  We are only human, so it does hurt when it happens.  The real culprit here is the chronic disease, in our case, the Parkinson’s.  While resentment and hurt feelings are a part of the Caregiver/Carereceiver relationship, it is the third member of the relationship, the chronic disease that is the source of the frustrations. 

In our best moments, we can talk about the frustrations and the jealousies and the hurt feelings and the lost freedoms.  My goal in keeping my equilibrium in the face of what the Parkinson’s has tried to steal from us is to match expectations with reality.  If I am constantly expecting Mary Ann to behave in a way that caresses my ego as a noble Caregiver, when she does not, my feelings are hurt, I am disappointed, and even more frustrated by all the difficult tasks associated with that Caregiving.  When I remember what has been taken from her, how hard it is for her to accept that she cannot do almost all of the things that formerly brought her satisfaction, when I remember what she has lost, it is easier to accept the times her frustrations come my way. 

It isn’t fair, it is just what it is.   Yes, there are sometimes hurt feelings and misplaced frustrations.  It comes with the territory.   The goal is to recognize the real culprit and refuse to allow that culprit to damage our relationship.

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.

Let me begin by telling you that I am not feeling angry at the moment.  This is not a chance for me to vent about my frustrations.  What I want to do is say what is obvious to those of us in Caregiving roles — as well as those receiving the care.  We get angry!

When we get angry we have to figure out what to do with those angry feelings.  While I would like it to be so, I am not always calm and rational and thoughtful and caring and sweet and loving — I had better stop before I lose my supper.  Mary Ann and I are not always sweet to each other.  Gratefully, neither of us expresses our anger physically.   We don’t call each other nasty names.   We do get angry. 

We have to figure out what to do with the anger so that it does not alienate us from one another or eat holes in our insides.  We don’t happen to be sweet talkers.  I appreciate those for whom sweet words come easily — when those words are genuine.  We are not cutesy-pie or sweet-cheeks or honey bunny sort of folks.  We didn’t use baby talk with our children — maybe a little with our Grandchildren, but that’s different!  We don’t use sweet talk with one another. 

Actually, I like that we say what we want to say to each other with words that sound genuine.  There is a trust that emerges that we are being straight with each other.  We try to be thoughtful in what we say without using words that sound like empty flattery.  We can both be pretty grumpy.  That is just the way we really are, sometimes grumpy, sometimes loving and kind and happy and content. 

When anger comes there are some elements of dealing with that anger that are unique to a caregiving and receiving relationship.  It just isn’t fair to express anger at someone who is sick, who has been battling Parkinson’s Disease for twenty-two years, who has had stolen from her every ability that brought her creative satisfaction, someone who depends on you for almost everything.   But where then can it go?  How can it be expressed.

Then, how can Mary Ann express her anger at me when moments later she has to depend on me to get her a sip of water or more importantly a dish of ice cream?  How can she risk alienating the one person who is there for her pretty much twenty-four hours a day?  Where then can the anger go, how can it be expressed.

If you haven’t discovered this for yourself, let me tell you something important about long and committed relationships.  They contain within them the capacity to be angry with one another, be grumpy, express it, and not threaten the relationship.   We trust each other enough to admit and express our anger. 

There are, of course, some rules.  No hitting!!! No name calling.  No damage to the furniture, doors or walls.  There may be an enthusiastic shutting of a door.  There may even be some yelling.  My children and those I taught in Confirmation Classes can testify that this little body can produce sounds audible from quite a distance, startling when heard at close range.   

There is an element in the expression of anger in a relationship that is not always appreciated.  Expressing anger appropriately in a relationship can strengthen it.  The operative word is “appropriately.”  Admitting that you are angry about something creates a vulnerability.  I can remember in our early years of marriage, Mary Ann once  saying to me, “I just wish you would get angry with me.”  By the way, she has lived to regret ever saying that. 

In her own way, she was asking me to be honest with her and reveal myself more openly, be more fully present with her.  She was asking me to trust her with my anger, trust her with what lay in my insides. 

Here is where that insight relates to our relationship as Caregiver/Receiver.  Were I to refuse to let her see any of my anger, it would signal to her that I thought her to be too sick, to debilitated to handle an honest relationship.  If I were to be sweet and nice and never grumpy with her, she would suspect that I had somehow lost respect for her strength. 

If Mary Ann were to become docile and compliant, never grumpy, always appreciating whatever I said or did, eating leftovers without complaint, never becoming impatient with me, it would signal to me the loss of someone who has been a force to be reckoned with, a strong presence, the person I have loved for all these years. 

We are not just Caregiver and Carereceiver, we are husband and wife!

What helps in managing the anger that comes is reflecting on it long enough (after the first reactive moments) to determine what it is that is the actual cause of the anger.  More often than not, what we are actually angry at is the insidious nature of Parkinson’s.  The ups and downs, the unpredictability, the inability to make plans and keep them, the relentless direction of this rollercoaster ride, combine to create frustrations that bubble up when some evidence of Parkinson’s presence pops up (sometimes as suddenly as Jack does when the little door of the box opens). 

I seem to have little ability to change this pattern, and I am frustrated by that inability.  When Mary Ann falls, which can be multiple times in a day, I get angry and grumpy about whatever it is that put her in the position of falling.  When I reflect on those reactive feelings, it becomes apparent to me what is actually happening.  I am scared.  We have been to the emergency room with blood that refuses to coagulate.  I know that head injuries are what most often finally take folks with Parkinson’s.  I am upset that I didn’t anticipate it and figure out how to prevent it.  I am frustrated that the very same medications that keep her able to function throw her into dyskinetic movements that compromise her balance, that the disease process combined with side effects of meds can cause her blood pressure to lower resulting in fainting.  I am angry that she doesn’t think about all that and avoid situations that make falling likely.  I am angry that the disease has slowed the thinking process making that kind of rational behavior difficult to maintain.  I am angry that she has always had a stubborn streak that, while it is keeping her alive, it is at the same time driving me crazy.   And then she wonders why I am angry at her when she falls since she isn’t the one who chose the Parkinson’s and brought all the challenges into our lives.  She isn’t doing it on purpose.

What about anger?  Well, admit it, name it, express it in ways that hurt no one, then think about it.  Use the energy it produces to find ways to deal with the problems that trigger it.  Don’t waste the anger.  Use it constructively.   Don’t let the Parkinson’s, the chronic illness, rule your feelings, your personal and emotional well-being.   Respect each other enough to be open and honest, vulnerable to one another.     Allow the chronic illness to become only an objective part of the landscape in which you live and grow and love. 

Yes, I would like to hear what you do with your anger.  I would like to hear what tools you use to manage it, release it, diminish its power.

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.  Comments are appreciated.

When Mary Ann was diagnosed with Parkinson’s Disease, our daughter was a Senior in High School and our Son was in the Eighth Grade at a school in which that was the last year.  I had gone on ahead in February to begin a new job in a city about a six hour drive away.  Mary Ann and the kids stayed at home to finish the school year while I lived in the new city without them.

It was a phone call.  “The doctor says that I have Parkinson’s Disease.”  In that moment  our lives ended as they had been and a new life began.  It has been a time of discovery for Lisa and Micah.  All of us needed to incorporate this new reality into our lives in different ways, as bits and pieces of understanding of its impact revealed themselves to each of us.  Our experiences have been completely different.  I could no more describe the feelings that Lisa and Micah have had than I could Mary Ann’s feelings.  They alone know the journey they have been on.  I know only what I have seen and heard when they were still at home, and what I have seen and heard of them in the years from then until now.  They are thirty-six and thirty-nine now – both married and along with very well-chosen spouses, raising our granddaughters. 

For you whose family has come to know the presence of chronic illness, make no assumptions about how that presence is impacting anyone else in your family, especially the kids.  It is tempting to project our adult awareness of all the implications of the disease on to our children.   It is tempting to try to insulate them from what we know of the truth.  It is tempting to lean on them and use them for support that they are neither ready nor able to give.  It is tempting to loosen boundaries on their behavior to compensate for the pain their parent’s chronic illness brings into their lives.  It is tempting to allow the chronic illness to draw attention away from them and their needs as they grow. 

Let’s just admit the simple truth.  Parkinson’s joined our family.  We didn’t invite it in.  We had nothing to say about it.  It became part of the family.  Two of the choices we had were to pretend it hadn’t moved in, or make it the center of our world.  I suppose we did some of both, each of us in different ratios of pretense and dominance.  One thing we did (I hope this is the way the kids remember it) is to just deal with whatever came as it came.  One side note is that as her Mom’s illness progressed, Lisa’s career choice of nursing home administration emerged.  She has since chosen to move to a very fulfilling job of the full-time parenting of her two young children. 

The Parkinson’s did impact the kids lives.  Again, they alone know how it affected them.  We tried to be honest about what we knew.  We tried to be rational in making choices about how to live most effectively in light of the Parkinson’s presence in our household.  We wanted our children to see that rational behavior helps in the long run.  We certainly did not spend a lot of time wringing our hands and feeling sorry for ourselves as if our lives had been stolen from us. 

Our children have come to be exactly what any reasonable parent could hope for them to be.  They are self-sufficient but able to be vulnerable, to care about others.  They are intelligent and mature.  Their advice is trustworthy.  They are of impeccable character.  They make friends easily and are true to them.  Others are better off for knowing them and will admit it.  While I understand that Mary Ann and I are biased in our assessment of them, I would bet money, real money, that others who have no such bias and who know them would say the same.

How did the Parkinson’s affect who they have become?  I can’t know this, but I think it has added depth of understanding, wisdom, compassion and a concern for others to a degree that might have come at least more slowly otherwise.  Each of them has found a life’s partner who matches their integrity, compassion, wisdom and concern for others. 

Those of us who deal with chronic illness in our families can feel sorry for the burden it places on our children.  I happen to have worked with Youth for eighteen of my forty years at my job.  While I cannot claim to have conducted a properly constructed study of Youth trends, I can say that those I got to know well, those who had the most, who were given the most, who had the easiest road, also had the most trouble finding their way to happy, meaningful, and fulfilling lives. 

What some might conclude to be an obstacle to a healthy childhood and a joyful life, I understand to have brought health and the capacity to experience deep and lasting joy that cannot easily be snuffed out by problems.

I have concrete evidence of the strength of character that has been shaped in our children by Mary Ann’s Parkinson’s.  Two years before I was able to seriously consider retiring to be a full-time Care Partner for Mary Ann, our Son-in-Law said to our daughter, Lisa, “why don’t we move to your Mom and Dad’s town to help them out for a couple of years until your Dad can retire?”  They lived in a city ten hours from here.  They had a two year old and a four year old.  There were no job guarantees here.  They just did it.    I have no idea how we would have done it without them.

Our Son and Daughter-in-Law moved from three hours away to one hour away.  They have never said what role, if any, our situation played in that decision.  But here they are, close by and ready to do anything within their power to help us.  Micah has come and stayed the night with his Mom.  He has done things no Son should be asked to do for his Mother.  He has done them without hesitation or complaint. 

Our love for our children, our purpose as parents to free them to live full and meaningful lives, shaping their own destiny, makes it hard to accept choices they have made to accommodate our needs.  They have taught us that part of who they are, who they have chosen to be, what they want their children to see in them, is their willingness to choose compassion and concern — actions, not just words. 

What about the kids?  The Parkinson’s, a chronic illness, has brought to them more than it has taken from them.   I say that so boldly, not because they have said it to me, but because their lives testify to it. 

My heart aches for so many who have not had the experience we have had, whose children and/or stepchildren have brought them pain beyond description.  How do you manage to survive in spite of their unwillingness to help and for some their willigness to hurt you?  How have your children dealt with the presence of chronic illness in your family?  How have they been hurt; how have they grown?

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.  Comments are appreciated.

When I was little, before toys had been invented, my imagination was the primary source of entertainment.  With my imagination, in the living room, I could make a store of chairs with corn kernals and toilet paper rolls and all sorts of treasures that were laid out on each chair as the merchandise.  Yes, I have a bit of the entrepeneur in me.  I would sit on the floor in front of that little ivory colored table model radio off in a wonderful world of adventures, The Lone Ranger, Gang Busters, The Shadow, Sky King, Sargent Preston and his dog King, The Green Hornet, Superman.  

I cannot describe to you the magnitude of my disappointment when The Lone Ranger came to television.  Who was that skinny little man and his tiny horse who claimed to be the Lone Ranger and Silver?  No human actor could measure up to the Lone ranger of my imagination.  I liked the world of my imagination.  It was exciting, filled with possibilities not limited by the harsh realities of being a kid with Rheumatic Fever who wasn’t supposed to do anything that would break a sweat.  My brothers and sisters with whom I now enjoy a wonderful caring relationship in spite of the miles between us, my brothers and sisters were out of the house and on their way long before I headed off to college.  For all intents and purposes I was an only child, who spent lots of time in a world of my own making. 

I liked that world.  In that world I was whole and fulfilled.  In the other world, the one at school, with the other kids, the one in which I was measured by Dad’s expectations, teacher’s expectations, strata determined by others — most of whom came from far more affluent families than mine — in what some call the “real” world, I was not worthy of notice. 

You know, reality is not all it is cracked up to be.  Yes, I am short and chubby and forgetful and often given the Senior Discount without asking for it.  On the inside, I am snappy and hip and sharp and with it and young and sexy.  You wonder why I contend that denial is underrated? 

Let me tell you what I think Mary Ann feels about this denial business.  For the first five years after diagnosis Mary Ann refused to let me tell any but a couple of conficants that she had Parkinson’s.  In fact she was not convinced she had it.  If I were to press her on the matter, some twenty-two years later, I think she might just suggest that maybe she doesn’t really have Parkinson’s. 

When Mary Ann says, “they won’t let me in the kitchen any more,” I think she means, I could do it — I could chop those vegetables, wield sharp knives, and handle those hot pans just the way I did when “they let me in the kitchen to cook.”  (Yes, I am the “they.”) 

When Mary Ann hops out of that chair and heads off for whatever, I think in her mind, she does not have Parkinson’s, she will not faint due to having Orthostatic Hypotension (fainting due to low blood pressure — a mysterious combination of the disease process and side effects of meds).  

I am convinced that it is her denial that has kept her alive, fueled the feisty stubbornness that has brought her through heart attacks, clogged arteries, congestive heart failure, a life-threatening bout with pneumonia, a stroke.  As far as she is concerned there is nothing wrong with her but limitations put on her by a bunch of worry worts (most named Pete). 

Back to the Lone Ranger.  I liked the Lone Ranger of my imagination better than the one using an ordinary human actor, limited by reality.  While it frustrates me when I am trying to help Mary Ann stay safe, avoid trips to the hospital, keep alive, I think denial is a necessary tool for daily survival.

Let’s be straight about this.  Every time Mary Ann is in bed and very quiet, a little voice tells me to listen carefully to be sure she is still breathing — that she hasn’t died.  Every time she gets up to walk can be the last time.  She can faint or lose her balance and hit her head on something.  Head injuries are one of the most common causes of the death of someone with Parkinson’s.  Yes, this is part of our reality.  We have been to the emergency room.  I have had to call the children to come from other parts of the country, told that she might not survive the night.  We have been told twice that she was within a hair’s breadth of going on a ventilator.  Yes, Parkinson’s Disease Dementia (a Lewy Body Dementia) has begun and is likely to get worse until she does not recognize me or the children.  Yes, she may choke on her food (aspirate it into her lungs) and not survive.  Plaque might break loose from that rough surfaced lesion in her carotid artery.  A clot might form due to inadequate heart function — a clot that could take her in seconds. 

That is reality.  Is that how we should live, facing reality moment by moment, immersed in the truth?  Hell, no!  (Excuse my French, as they say — please don’t be offended if you happen to be French — Mary Ann is.)  The way to live is in denial!  Every day when we get up, we are as alive as anyone else.  We have things that need to be done that are shaped by our circumstances, but we are as alive as we were yesterday and as we expect to be tomorrow.  Don’t feel sorry for us or patronize us or suggest that our quality of life is any less than anyone else’s.  We love and feel and dream.  We are filled with the beauty of spring flowers and blue skies with puffy clouds.  We draw in the wonderful scents after a rain, we eat ice cream voraciously.  We cherish friends.

That is the reality in which we choose to live.  In our denial, we are not foolish.  We do what can be done to ready ourselves for things that are likely to come.  We have purchased our burial plots.  We have written down our preferences for funeral services.  We have chosen to live in a maintenance-free (hardly free) home.  We have enlarged doorways for wheelchair and walker.  We have purchased a lift for times I am unable to get her up.  We have checked out options for future care.  We have living wills and durable powers of attorney.  We are not stupid.  We acknowledge reality and deal with it.   We just choose not to live in it day by day. 

Give me the bigger than life Lone Ranger I saw in my mind’s eye, as I heard his booming voice with with my mind’s ear say, “Hi Yo Silver, Away.”

You can have Reality.  Mary Ann and I choose Denial.