May 11, 2009

Caregiver’s Identity: Who am I?

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Less than a year ago, I was Pastor Pete. Who am I now?

I liked being Pastor Pete.  In our tradition, as with most religious traditions, when a person is ordained into the ministry, it is for life.  I am still Pastor Pete.  There are a wealth of experiences folded into that identity.  I have been there when people have died, I have been there soon after people were born.  I have accompanied people through marriage problems, family crises.  I have ministered to people through a disaster, the Oklahoma City bombing.  I have done funerals for premature little ones the size of my hand.  I have done funerals for teenagers, young adults in their prime leaving children behind.  I have preached and done liturgies before hundreds.  I have gone through good times and painful times with congregations.  There is not enough space here to describe the variety of challenging and meaningful experiences that have shaped my identity as Pastor Pete.

That identity has not been my only identity, however.  Any who reads this post could list all sorts of identities they have had in their lifetime.  I have been a little boy, a son, a little brother, a kid whose identity was shaped by going to school, playing down at the swamp, jumping into piles of raked leaves, catching bugs, heading to the vacant lot for a game of Bounce or Fly, getting penicillin shots and taking those awful red penicillin pills, supposedly avoiding exertion on account of the Rheumatic Fever. That identity has come and gone.  I grew up and got well.

Then there was the identity as a singer.  That began when Mom claimed she heard me singing the melody of “We Three Kings” while I was lying in the crib at eight months of age after my brother had been practicing for singing at the Christmas Program that year.  I took voice lessons, sang in choirs, served as president and student conductor of five choirs from Junior High through graduating from college. I sang in a semi-professional choir earlier in my working years. That identity has come and gone.  I haven’t sung much for years.

I am a father.  We have two children.  There is an odd shift in identity that comes with children.  After children, I may have been Pastor Pete to some, Pete to others, but I became Dad to two, and Lisa and Micah’s Dad to many others.  It happens to most of us.  With children, our identity moves away from who we happen to be as an individual to who we are in relationship to someone else.  From the time the little ones head off for preschool and/or daycare, we become our children’s Dad or Mom.  Whenever we get full of ourselves in any other arena of life, coming home to children, going to school activities, getting them ready for bed or ready for school, feeding them, picking up after them, listening to their arguments with one another, dealing with behavior issues, serving in our role as parent will quickly burst our bubble and bring us back to reality. The role of parent has changed as our children have grown up, but I am still Dad and Mary Ann is still Mom.

There has been a new identity added to our reality in the last decade.  I am Grandpa.  Mary Ann is Grandma.  It is who we are now.  By the way, it is really cool!  That identity will stick with us from now on.

We all have multiple identities during our lifetime. While those identities all help shape us into the somebody we have become, some of them come and go.  Some of them stick.  The kid I was has come and gone but in some sense still lives in me.  My parents are both gone, but having been son to a Mom and a Dad still impacts how I think and feel.  I am still a little brother to four other people even though I am now sixty-six years old.  By the way, when those four are getting out of hand, I just observe that Mom and Dad kept trying until they got it right.  (You can imagine how far that gets me with them.)

Singing is still a part of who I am, even though I seldom do it.  It lives in my insides.  Music stimulates my soul and touches my heart.  I am a parent and take great comfort in the relationships with our two children.  I cherish my identity as Grandpa.

The identity as Pastor has molded and shaped my sense of self profoundly in the forty years of doing ministry.  While I am still by ordination a Pastor, I am not pastor to a congregation of people.  While being a pastor is part of who I am, my identity, it is no longer in a public setting.

There is an identity that became primary for me when Mary Ann and I married.  I am a husband, the husband of Mary Ann.  That identity has defined me for over forty-three years now.  Mary Ann and I have retained our individuality.  We have not disappeared into each other, but our lives are completely intertwined.

There is now a new identity born of necessity and grown into the center of who I am.  I am a Caregiver.  That identity cannot and should not be differentiated from my identity as husband. The Caregiving happens to be what being husband to Mary Ann includes at this time in our lives together.  When we commit to one another in marriage, it is not conditioned on health or wealth.  We marry a person, whatever that brings.  We don’t marry some ideal of what a husband or wife should be.  We marry a real person, who will grow and change with time and experience, as will we.  What comes, comes. I am now a husband and a Caregiver.

Who am I?  Am I what I do?  Am I a kid, a brother, a husband, a father, a Pastor, a Grandfather, a Caregiver, or am I something in addition to those things, something more than those things?  For me this is an exceedingly important matter. What sustains me is that I have an identity beyond what I do.

Let me say it plainly.  Mary Ann and I have no idea how long we will live.  No one does.  What if she dies before I do?  If my identity is solely husband and Caregiver, who will I be then?  Mary Ann has a very strong sense of herself.  She has a strong presence.  If I die before her, she will be Mary Ann.  She has never defined herself solely as a spouse.

My identity is rooted somewhere far beneath my various roles.  I am convinced that all of us need an identity that is not wrapped solely in one of the various roles we have had throughout our lifetime.  I am no longer a kid.  I don’t sing any more.  Our children are grown and on their own,  Our grandchildren do not live with us.  My brothers and sisters live six hundred miles from here.  I am no longer pastor of a congregation. If who I am is solely what I do, I am in a world of hurt.

For now, let me say this: The first answer to the question of who I am is, I am water and dirt.  I, like you, am made up of about 70 percent water and 30 percent dirt (carbon, minerals, etc.).  The final answer (as they say in The Millionaire) to the question who am I, lies in the answer to the question, Why am I a living, breathing, self-aware human somebody, rather than a fifty pound pile of dirt and a hundred and fifteen pound puddle of water?  My answer to that question will come in another post.  Stay tuned.

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.

 

April 18, 2009

Prolonged Grieving for Caregivers/Receivers

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Downstairs on a quilt rack is a queen-sized Sampler Quilt. A Sampler Quilt is a quilt made with many different patterns that serve as samples of traditional quilt blocks. That quilt was stitched entirely by hand — no machine quilting. The stitches are even and very, very tiny, the way quilt stitches are supposed to be. It took Mary Ann two years to transform pieces of fabric into a completed quilt. Parkinson’s has stolen from her the ability to handle a needle at all, let alone sew a quilt.

Those who have a progressive disease with no known cure are forced to watch their abilities, abilities that that helped define them as unique individuals, diminish until each one crosses a threshold that leaves them empty of that ability. Each loss is a little death. It is grieved just as if a piece of her/hiim has died. Each loss brings with it all the same stages that have been used to describe the grieving process that is experienced after losing a loved one.

Most of the times Mary Ann and I find ourselves in conflict it is because we disagree on the degree to which one of her abilities has diminished. She is convinced she hasn’t crossed the boundary that leaves that ability on the other side, out of reach. I am often more ready to find acceptance than she is when an ability is lost to her. While the conflicts are unsettling, seeing her fighting acceptance reassures me that she is still her feisty self. When I see her accept whatever loss it is, I feel a deep sadness that a little of her is lost.

Watching someone you love lose a bit of herself grieves the Caregiver. To put it in more dramatic terms, Caregivers watch their Loved Ones die a little at a time for however long the caregiving goes on. While that is a harsh way to speak of it, calling each loss a death helps put in motion the process that ultimately can lead to acceptance.

Please understand, there is no way to make this part of the life of a Caregiver and Carereceiver pleasant and fulfilling. What can happen is by accepting the loss, full attention can be given to the task of building a new reality that has new ways of finding meaning and fulfillment. That, of course, is far easier said than done.

As a Caregiver, I am tasked with finding new ways to live meaningfully, when old ones are no longer available. I cannot stop the progression of the disease, the process of decline, but I can look for places to stop along the way, places of significance and meaning, places that could not be discovered if still trapped in the grief.

As I was thinking about this today, it dawned on me that the chronically ill and their caregivers are not alone on this journey of loss and grief and the need for acceptance. Every one of us who has seen a gray hair or felt the sharp stab of some arthritis or seen wrinkles where the skin used to be smooth and taut, every one of us who has been defeated at our favorite sport by someone younger and more agile has some grieving to do.

Since we are all mortal and confronted by our mortality at every sign of aging, we all have the challenge of identifying what we have lost and moving through the grieving process to acceptance. Otherwise we will waste the time of life we are in trying to live in a time long gone. We will miss whatever opportunities lie embedded in the present, opportunities unavailable to us until now.

For those with Parkinson’s Disease or any other seriously debilitating disease, the pace of the loss is increased, the degree intensified. There is just more grieving to do and more acceptance to seek. The abilities in those with a progressive disease may diminish to the extent that it seems virtually impossible to find anything left for them to do.

In almost forty years of pastoring, I have been invited innumerable times into peoples’ lives at the death of someone they loved.  (Sometimes it was someone I loved too.)  Sometimes the death came at the end of a long life. Sometimes there was a protracted illness. Sometimes people stood watch as their loved ones died painfully.  Sometimes the death came so suddenly as to leave them breathless, having had no time to prepare or say goodbye.  No matter how it happens, a death must be grieved. It is not a matter of one being harder or easier to deal with, each must be grieved.

For those who are Caregivers for someone with a progressive disease for which there is no known cure, the grieving is spread over all the years of Caregiving.  There are times when the pace is measured by small steps and times when there are frightening leaps toward the inevitable end of the journey.  Grieving is an important process in the journey.  It gives us a chance to express a variety of emotions, to deny for a while whatever it is that has been lost, to spew out some anger, to spend time wondering what we could do to change it, to just feel bad about it for a while and finally to recognize it for what it is, another step we have taken as we travel along with each other and the disease.

When we move through grief in a healthy way, the accepance that comes frees us to be ready to see what possibilities lie in the present.  We are able to see them and judge their value by what is so in the present, not by a past that is no longer accessible.

It must be added that those of us who deal with Parkinson’s Disease, Parkinson’s Disease Dementia, Lewy Body Dementia and a number of diseases like them have the even more frustrating challenge of grieving the loss of one level of functionality, only to see it return for a time, then disappear, return again, all without any identifible pattern.  It is sort of like the weather in Kansas and Oklahoma.  If you don’t like it, just wait a bit, and it will change. One loss may be grieved many times.  There is joy when what has been lost returns and sadness when it leaves again.  We have the challenge of grieving the loss of consistency and the ability to make and realize plans based on the abilities that exist at the moment.  We have to develop the ability to turn on a dime and change directions based on what is so in each moment as it comes.  Our need is to come to acceptance that we are not on a train moving at a measured pace in a certain direction.  Our need is to accept that we are on a roller coaster with all the twists and turns, ups and downs, with no way of knowing when or where we will be next.  We know the destination for certain.  We just have no idea when that destination come and the roller coaster will stop.

In the meantime, the journey with Parkinson’s or any debilitating disease accompanying us demands that we learn to grieve effectively.  The grieving helps us find our way to acceptance so that we can live in the present, so that we can see and take advantage of whatever opportunities lie in the present as it really is.  The ability to grieve losses effectively frees us to live with meaning and purpose the life we have each day as it comes.  The day we are in is the only one we have for sure.  Grieving well frees us to live it to the full.

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.

 

April 17, 2009

Caregiver Guilt: Guilty or Not Guilty?

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Yes!!!

In yesterday’s post, I said this one was coming.  I have been thinking about it for a long time.  Those of us who have full responsiblity for another human being suffer from feelings of guilt.  We just do — and yes, sometimes we actually are guilty and sometimes we are not guilty. 

There is nothing in particular that triggered my thinking about this today.  It was a long and somewhat frustrating day.  The morning routine went fine, the one through which I declare that there is some shred of control left in our lives in spite of Parkinson’s Disease joining the family twenty-two years ago.  Then some repair work that was to be done at our house was sabotaged by the carelessness of the vendor’s service manager.   The resolution of that problem is not yet in sight. 

After that start to the day, my list, the list by which I seek to create some order out of our chaos simply didn’t accomplish its task.   It did not order my day.  I didn’t do it, much of any of it.  I looked at it often.  I did some self-talk trying to encourage doing enough to check off an item or two.  It just didn’t work — I just didn’t work.

One thing that did take control of the day was the activity of the alimentary canal of the one for whom I care, about whom I care.  She was up and down, in need of an elbow to steady her, or a task to be done throughout the day.  There were anywhere from moments to minutes between the needs — no more than minutes. 

With that said, I could have, should have accomplished more. 

The guilt that is part of a Caregiver’s world is a constant presence.  It does not really have to do with how good the care is, how well the Caregiver does at responding to the needs of the one for whom they are caring.  In fact, the better the care that is given, the greater the opportunity to feel guilty. 

Caregivers feel guilty for not doing enough, not doing all that they should do as well as they should do it.  The harder they try to be the perfect, nurturing, loving, kind, thoughtful, capable Caregiver, the farther behind that goal they fall.  

The problem is obvious.  There is more that should be done than can be done by any one human being!  There are no boundaries around all that should be done to help your Loved One have all that she/he needs to have the life she/he deserves.  It is impossible.  The Disease has joined the family.  Caregivers can’t fix that.  Mary Ann has Parkinson’s.  I can’t change that.  I cannot give her back the life she deserves.

Why do Caregivers then feel guilty?  Mary Ann has been to Physical Therapy, Occupational Therapy and Speech Therapy.  We have pages of exercises she should be doing.  There are games that should be played to keep her mind stimulated.  I should get her out more, find entertaining activities to keep her from being bored.  I should learn how to cook three good meals a day that are tasty and pleasing to her palate. 

Why do Caregiver’s feel guilty?  We aren’t always nice!  I get irritated!  I get irritated when she falls after making the same frustrating choice that has resulted in a fall hundreds of times  before (literally, in twenty-two years).  She doesn’t want to fall.  She has Parkinson’s Disease and Orthostatic Hypotension and the side effects of medicines, but she still wants and needs to get up and move.  I get angry at her when the Parkinson’s deserves the anger. 

Why do Caregivers feel guilty?  Yes I love her and am completely committed to her care, but I don’t like having my biggest needs trumped by her tiniest needs.  I am well.   She is sick.  I shouldn’t resent her for something she can’t control.   The truth be known, she is no more perfect than I am.  Because she has Parkinson’s does not make the things that used to be irritating any less irritating now.  I am hardly sweet and wonderful.  I am also just as irritating and frustrating to live with as ever.

It seems to me that one challenge for Caregivers is to separate the things of which we are guilty from the things of which we are not guilty. 

We are not guilty!  We cannot do all the things we should do.  That means we will not be doing a whole list of things we should be doing.  Every helpful suggestion for what we should be doing just moves the already impossible goal farther away.  Caregivers need to come to terms with a simple reality.  We are just people.  We have a life too.  It is actually healthy for us to set limits on how much we do so that we can continue to give good care. This is a marathon, not a sprint.   We cannot make up for all that the chronic illness has taken away from our Loved One.  We will soon become completely disabled if we try.  Feeling guilty about what we cannot actually accomplish is a waste of precious energy and a weight on our spirit that can’t be carried for long without breaking that spirit. 

We are guilty.  We actually do say things we should not have said.  We do blame our Loved Ones for things over which they have little or no control.  We really are imperfect.  We do fail to do things that we could have done to make a real difference.  We take out on our Loved Ones our frustrations with the Disease by our tone of voice or our unresponsiveness or whatever subtle tools we use to punish them.  It does us no good to do all sorts of mental gymnastics to try to justify our behavior.  It is a waste of time.  We are guilty! 

What can we do with the guilt we deserve?  We can’t undo what we have done that we should not have done, or not done that we should have done.  For some of us there lies within our spirituality the freedom to admit our guilt, face it boldly. without fear, and refuse to be disabled by it.  The kernal of truth that lies in the very center of the spiritual tradition that nourishes me is that the One who chooses that I exist, loves me unconditionally with love more powerful than all the things for which I rightly feel guilty.  That love is not weak and shallow and without consequences.  It is easy to feel guilty.  We can wallow in it, get depressed on account of it, and give up trying.  Unconditional love, mercy, forgiveness is much harder.  It implies the possibility of change.   It offers the freedom to change.  It removes the excuses we use to avoid growing. 

For those who do not have a particular spirituality or do not understand there to be a spiritual dimension to life, the issue is the same.  Feeling guilty is still a waste of time.  Naming the things we have done that are actually wrong, harmful, destructive is a healthy first step.  Our primitive brain elicits words and behaviors that frustrate our humanity.  We need to face that before we can choose behavior that nurtures our humanity.  The task is to identify and accept the truth about ourselves and choose behavior that allows us to grow and change and become more than we have been. 

However we define the nature of our humanity, whether in spiritual terms or otherwise, we can find meaning in our caregiving, nurture our humanity, grow in our ability to live full and complete lives even in the company of a chronic illness that seems to be hell-bent on destroying us and our Loved Ones. 

Caregivers, are we guilty or not guilty?  Yes!!!  With that clear, let’s get on with it.  We have things to do!

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.

 

April 11, 2009

Caregiver Decisions: Right or Wrong?

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Should I or shouldn’t I?  Decisions come at such a pace that often it is just impossible to give each one its due.  Sometimes little decisions accumulate, and before you have time to really think about it, the decision is made.  Which decision is the right one?  How can I be sure it’s right?

About a year and a half ago, I made a decision, a big one.  I decided it was time to end a very satisfying and stimulating and meaningful career of some forty years to do full time care for Mary Ann, twenty-two years into Parkinson’s Disease.  Was it the right decision?

While the decision was made and announced a year and a half ago, the actual event took place about ten months ago.  I haven’t yet had a full year’s cycle since the day that career came to a screeching halt.   If I had been burned out it would have been an easy call.  If I was tired of the people and the demands, retirement would have been the obvious choice.  If I felt the people I was serving were anxious for me leave the job (I have no doubt some were), it would hardly have been a decision at all.  There was warmth and affirmation voiced by enough to make me feel that I was appreciated.

The truth is, it was actually a decision!  Most choices we make, while we may call them decisions, are actually simply the logical next step along a path that is actually very clear.

The word decision has as part of its root the word translated “cut.”   An actual decision is a choice that demands cutting away something of value for the sake of something else of value.  Which is which is not always clear.  In fact, my use of the word “decision” demands that the choice is not clear — at least at first glance.

I made the actual decision to retire in approximately thirteen seconds, while sitting across from Mary Ann at McFarland’s Restaurant.  Does that sound cavalier, irresponsible?  I saw Mary Ann struggling to get food out of the dish to her mouth, finally giving up in frustration.  It is as if a switch in my mind flipped.  It was a switch of recognition that the time had come.  The time had come to give her my full attention instead of having to struggle for bits and pieces as I focused on my career away from her.

Understand, while the decision was made in thirteen seconds, the process leading up to it had gone on for years.  There were many pieces that were coming together to create the environment from which that decision emerged.  While I would be retiring a year early relative to Social Security, I was vested in my pension and would have a far smaller income stream but not much different from what would be available if I waited another year.  The shock of the lower income would be significant whatever the year I chose.  Another piece was that the number of Volunteers to stay with Mary Ann was diminishing at a fairly brisk pace.  My Daughter and Son-in-Law  needed to return to Kentucky, since the two year commitment they had made was up.  The employer in Kentucky was ready for the return of a valued employee closer to the home office.  Our Daughter had been our mainstay during those two years.

One of the significant pieces of the landscape in which the decision was made was the difficulty I was having doing my work justice with the roller coaster of demands that come with caregiving.  What insulated me from that dimension was a remarkable professional and support staff that, to put it bluntly, covered my tail!  There was a high quality of service provided the community in spite of my limitations.

I can remember saying many times that I would not be a good full time caregiver.  I had decided to work well past retirement age, using whatever resources were available to care for Mary Ann while I worked on.  Even when I began thinking about moving toward retirement, I did so with a deep terror that it would be a disaster for both Mary Ann and me.

In that thirteen seconds, it became crystal clear that I needed to have time with Mary Ann while she needed me most.  Actually, Mary Ann was not really so excited about the prospect of my being at home all the time.  She has a set of feelings of her own about my presence with her — but I am the one writing this post, so you will get it from my perspective.

While I would like to be seen as noble and compassionate and a dedicated husband, I did it more for me than for her.  I have a pretty realistic understanding of humanity.  Most of us do what benefits us.  I needed to stop working and come home to Mary Ann.  I needed it for selfish reasons.  First of all, I do love her in that deep way that includes romantic love and the kind that takes decades to build.  You can only understand it when you  have experienced it.  I made a choice that I could live with.  I care who I am and who I become.  Making that choice brought with it pain beyond description and a deep feeling of worth and value that cannot be stolen from me.

When a decision must be made, each option has good stuff and bad stuff in it.  If it were all one or the other it would not be a decision.  To make a real decison means losing the good stuff in the option to which you say no and gaining the bad stuff in the option to which you say yes.

This week I am feeling the pain of what I have lost.  At the same time, I celebrate what I have gained.  I have gained time with Mary Ann, including moments of frustration for both of us and moments of joy.  Yes, I am watching her slowly decline, but I am here to see it and have some small impact on how it goes.

In a sense, I have moved from a life that included external validation from a salary, from working in a public forum, from others whose lives I entered at some of their most important times, to a life focused on internal validation and the chance to be there for another human being (whether she likes it or not) in a meaningful way, one that makes a difference daily.

Did I make the right decision?  I have no doubts!  In fact, that thirteen seconds was so decisive as to have freed me not to waste a minute on regrets or second thoughts.  I am free to live each day to the full, whatever frustrations or joys it brings.  I get to do it with someone I love.

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.

 

April 4, 2009

Carereceiver’s Feelings about Caregivers

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , , , , |
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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.

 

April 2, 2009

Caregiver Self-Care: Renewal Retreat Results

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Early this evening I returned from two nights and three days at St. Francis of the Woods Center for Spiritual Renewal in Oklahoma.  As I had anticipated in my last post, the experience was at least as meaningful as I had expected it to be.  The five hour drive provided transition time, time to unwind, time for my mind to race through whatever it needed to process so that I could fully experience the time there engaging in each moment as it came. 

It takes time to disengage and let go of all the pressures and responsibilities of Caregiving and work, if you have other work in addition to Caregiving.  A three day Retreat allows time that needed time.  Knowing that Mary Ann was in capable hands during the time I would be gone was important to allowing the freedom to let go. 

For those who know our household, it is hardly necessary to add that the trip down included a stop at Braum’s for a two scoop hot fudge Sundae with lots of salted pecans, topped with whipped cream and a cherry.  Let’s be straight about this renewal business.  Ice cream (or whatever your favorite treat is) goes a long way toward nourishing the rest and renewal muscles. 

The retreat content was as described in my last post.  There was no agenda.  I needed time to be free to initiate activity as I felt the need.  When Caregiving, of necessity, Mary Ann’s needs take priority.  By contrast, on this Retreat, I decide what to do and when to do it. 

I walked outdoors for hours.  I walked slowly, savoring the sounds and sights and sensations as they came.  I engaged fully each moment.  I felt the warmth of the sun and the feel of the breeze early the first evening.  I watched and listened intently for birds especially.  I watched an Oklahoma storm develop and pass over.  During nine years living in Oklahoma City, both Mary Ann and I came to love watching those storms develop.  

When the storm started producing lightning, I had enough sense to head back to the cabin.  I knew that Mary Ann would be pretty irritated if I was struck by lightning and she was left to fend for herself.  In fact, if I were hit by lightning and did not survive, she might very well have me cremated and spread my ashes in a fabric store to languish there for an eternity.  Given the option, I would prefer fire and brimstone.  Needless to say, I moved to safety very quickly. 

The next day was chilly, but bright.  I walked again.  On occasion I stopped to sit on the camping stool tied to my backpack to read or just sit and look and listen.  I suppose I accumulated eight or so hours out in that beauty that day.  Today I walked again for a couple more hours, this time walking faster, covering the same territory as the last two days, looking for surprises. 

In the course of my time outside, as I looked up at a nest high in a tree with my binoculars, I was startled by two eyes staring back at me as a Long-Eared Owl sat on her nest.  I was examined by a couple of nearby wild turkeys to see if I was a threat.  Apparently they concluded that I was not.  I was checked out by five circling Turkey Vultures trying to determine if I would be a fitting afternoon snack.  In fact this morning three circled overhead and one got so close that I could actually hear his wings flapping.  After seeing a White-tail Deer run off in the woods, a buck that was still out of sight tried to intimidate me with his loud and threatening snorting.  There is more, but that is for another post for those who love to walk in nature. 

I have to say that while there was utter solitude most of the time I was on the Retreat, I never felt lonely, I never really felt alone.  In those settings I feel a fullness, a wholeness that is sometimes hard to feel when I am in more populated settings. 

When I was at the farthest point on my wanderings, sitting in a cluster of trees, turkeys nearby, I took out my cell phone and called Mary Ann.  She wasn’t home at that moment, but I left a message with a few words about where I was and what I was doing, letting her know that I was thinking of her and that I love her. 

There is something that has come to be so for me about solitude, meditation and the power of renewal imbedded in them.  If the experience draws me away from relationship, isolates me, separates me from those I love, it is not, in my eyes, an authentic experience.  While as full time Caregivers, we need time for breaks, moments of escape, that is not the purpose of a Renewal Retreat.  If my goal on the Retreat were just escape, it would make of what I do as a Caregiver bondage instead of a meaningful calling.  If escape is the primary purpose of the Retreat, it will not renew, but do the opposite, magnify the frustrations and make the return home a time of dread. 

The purpose of a Renewal Retreat is to find yourself to be whole, fulfilled, grounded and full of life, life that cannot be stolen from you by challenging circumstances.  The images and sounds and smells and feelings, the experiences can become a well from which draughts of refreshment can be drawn in a moment’s reflection even during a busy and even frustrating day of Caregiving. 

The motivation for a Renewal Retreat is not simply self-serving.  It is pretty tough to have a meaningful relationship with someone you claim to love whether they are in need of care or not, if you feel unfulfilled and empty.   Then relationships come to be about filling our unfulfilled needs.  Relationships come to be about getting instead of giving because we have nothing to give.  Ultimately, no one else can make us whole, give our lives meaning, fill our needs.  A Renewal Retreat as I experience it gives me a sense of fulness and meaning that helps me discover again who I am, so that I can respond to Mary Ann’s needs without losing myself.  I can be a better  Caregiver and a better husband — never even close to perfect, just better.

Just as a Post Sript, the retreat ended with a lunch that is provided weekly for the staff and those who are a part of the leadership at St. Francis.   Gratefully, guest retreatants are welcome to join them for lunch.  A more delightful crew would be hard to find.  I especially enjoyed the reflective time after lunch, processing spiritual renewal and learning from one another.   Renewed in solitude and in community — what a treat!

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.

 

March 24, 2009

Caregivers: What about the Kids?

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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.

 

March 23, 2009

Caregivers/Receivers Romance! (Rated PG45)

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In last night’s post I said I would do it.  Tonight I will keep that promise, or threat, depending on your perspective.  As I said last night, this is rated PG45 since that number exceeds the ages of our Daughter, Son and their spouses.  As Daughter-in-Law Becky once said when I was only hinting at something that could move into the forbidden area of parents intimate activity — “Too much information!!” 

Since I am old and by some measures (probably most measures) a little stodgy, there is no need to fear too much information.  In saying that, I have, of course, lost all those curiosity seekers who ended up here in hopes of finding something titillating.  I am not sure this old ticker could handle much titillation.  With that said, we old folks still have young folks living inside of us. 

I remember sitting in a movie once, I think it was one of the Grumpy Old Men movies of some years ago.  There was a scene in which Walter Matthau and Ann-Margaret kissed — right on the lips.  Everyone in the theater who was under thirty groaned audibly.  From right behind us I heard at an “Oh gross!” 

I do have to admit that the thought of kissing Walter Matthau full on the mouth is hardly appetizing.  Then again, Ann-Margaret is another story.  What the young among us probably don’t understand is that we old people think other old people are cute, sometimes downright good-looking. 

What is at issue for Caregivers and Carereceivers is how to keep romance alive when meals are often interrupted by bathroom duties and waste management is a routine activity, when arms and legs and stomachs have grown or the skin on them gathered into wrinkles.  How is it possible to get excited about one another when one is tired and annoyed by having to do everything for the other, and the other is tired and annoyed at being followed around and scolded every time there is some behavior the other one doesn’t appreciate? 

Now comes the real problem.  I have just asked the question.  How the heck am I supposed to answer it???? 

Let me start this way.  Mary Ann and I are in our mid-sixties.  When I look at her, I see the cutie whose engagement picture hangs on the wall of our bedroom.  Forty-four years has not stolen from me the feelings that drew me to her.  I would not presume to speak for her.  In fact, I might actually prefer not having her speak to this issue.  I can remember the feelings I had before we met, fell in love and married.  I remember the profound loneliness of being a young single fellow who sometimes felt deeply sad, not sure why.  Once Mary Ann entered my life, never again did those lonely, deeply sad feelings return.  While I don’t fear death, I do fear the return of those feelings, should she leave before me. 

How do Caregivers and Receivers experience romance?  First of all, we do!  Understand, romance is not just about body parts and orgasms and ejaculations.  In fact, those whose understanding of romantic love centers on the biological act of intercourse, have no hope of ever experiencing romance.  By the way, old people actually do know about the biology of conception.   Some of us have had children.  While I happen to have been a pastor at the time and am familiar with the Biblical account of the Virgin Birth, we had our children the usual way. 

I have read many emails from those who are caring for a spouse who has ceased to be the person they married.  They have only memories to draw on for those romantic feelings.  How can they find a way to express their love.   If love was just about body parts and couplings, there would only be sadness left for many. 

The marvel of it is, love, romantic love, has depth and awe and wonder that is only hinted at when people first fall in love.   My favorite movie of all time is no secret to those who know me well.  It is “The Man from Snowy River.”  I don’t know what lies deep in the recesses of my psyche that draws me to it, but I can tell you what I recoginize about it that draws me.  They are simple things.  I love the photography, the scenery.  That movie is the reason one of my dreams has been to visit Australia.  The scenes of running horses will take your breath away.  There are two central themes that draw me to it.  One is the coming of age of a young man who proved himself in spite of the odds against him.  I suppose a 5′ 6″ kid with who had Rheumatic Fever and was not at all popular might understandably enjoy that sort of theme.  The other central theme is the romance that grows between Jim and Jessica.  It is beautiful and touching even to a guy not much into chick flicks.

In the sequel, “Man from Snowy River Two,” the ending is, as with every such story.  Maybe not in so many words, but the ending is, and they lived happily ever after.  “Happily ever after” is what romance is about.  The “ever after” in happily ever after lasts through smelly socks, passing gas, spitting up babies, rebellious teenagers, unsuccessful recipes, stupid comments, throwing up, diahrrea, tragic events, bad mistakes, arguments, hurt feelings.   The love that creates and sustains a relationship after riding off into the sunset can endure waste management, food that lands on the lap and on the floor, caring for bedsores, seeing that blank look of no recognition in the eyes of the object of that love, because of the dementia, hearing harsh and unloving words from the mouth that you kissed in former years. 

That isn’ t pretend love.  It isn’t some poor substitute for the rolling and grunting of biological coupling (which, by the way, is great fun).  It is something that is in its own way, beautiful and meaningful and romantic and intimate beyond anything that could have been imagined when lips touched in that first kiss decades before. 

I will say this much that is specific and personal.  Once or twice a week, I have the job of washing and drying Mary Ann’s hair.  (The Bath Aid does it twice a week also.)  Mary Ann has great hair for which she often gets complements.  While the Parkinson’s has taken much from us, washing Mary Ann’s hair brings wonderful feelings of intimacy.  It is tactile and gentle and relaxing and warming.  Running my fingers through her hair as I dry it is my experience of “happily ever after.”   The other day, Mary Ann gave me a kiss on the neck as I was bent down pulling up the disposable underwear after using the commode.  (Too much information?)  Strangely, in a way, the Parkinson’s has brought more intimacy than it has taken away. 

I would like to think that  Jim and Jessica will grow old together — that their love will grow until they know what it is really like to live happily ever after.

Those of you who are in the throes of caring for a spouse whose chronic illness creates barriers in your relationship, I guess I would like to know what brings real romance into your lives.  How do you cope? 

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.

 

March 22, 2009

Caregivers: What about Death?

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I spent almost an hour this evening with someone whose family Hospice told is in his last twelve to twenty-four hours of life.  Before retiring last summer, my career had been to serve as what in my religious tradition is a called a pastor.  What I have to say in this post is not only for those who happen to have a spirituality like mine, or any spirituality for that matter. 

First, I have a belief system that is secure and unwavering.  There are tools at my disposal when spending time especially with the dying, tools that offer profound hope in the face of death.  I make no apology for having such a belief system.  I do not ask the readers of this blog to share that belief system or any belief system.  It is my hope that my reflections on death have implications for all of us as we finally have to face the inevitable.  We cannot make it go away.  As helpful as denial is in the day to day celebration of life in the face of chronic illness, death must be faced for there to be any real joy in life.  Otherwise we are left with a spectre hanging over us that steals the joy from our days. 

Doc and I talked about how hard it is to leave behind people who are loved deeply.  Who will take care of them?  When the time comes, both those giving the care and those receiving the care have to come to terms with the separation that comes with death. 

Let’s not tiptoe around this one.  I have heard the plight of folks much farther into the unbearable pain of caring for someone who no longer recognizes them, someone who can do nothing for him/herself, who cannot converse, who is for all intents and purposes gone with only a shell of their former self left.  I have felt their frustration as they talked about struggling to love what is left of someone they loved deeply before the Dementia took its toll.  

How can they not long for death to come and release their Loved One from their helplessness?  How can they not long for death to release them to live again if they see death to be transitional rather than terminal.  This one is hard for me to talk about since Mary Ann and I are still far from that point.  In fact, I am anxious to write a post on Caregivers’ Romance, which by the way will be rated PG 45.  It is rated that way to warn our children and their spouses who may put what I write in the category once named by our Daughter-in-Law, “too much information.” 

For tonight, it is death that is on my mind.  Is death friend or foe?  While my theology has clear language addressing that matter, the experience of folks with whom I have interacted over the years is not simply theological.  It is experiential.  When death comes in a sudden, tragic way, when the victim is young, death is the enemy.  When someone has lived fully for many decades, when someone has fought a terribly debilitating disease, death may very well be a welcomed friend. 

The truth is, of course, that death just is.  However we define it or describe how we feel about a particular death, it just is.  We have no say about whether or not it will come.  It will come.  How it comes, when it comes is worthy thoughtful reflection and discussion.  Whether or not any one of us will die is not up for discussion.  We will. 

 My goal with Doc was to help him find his way to peace.  The way to peace is to finally decide to let go.  Both Caregivers and Carereceivers have similar problems.  Neither wants to let the other go.  Each thinks that by hanging on to the other, they can change the inevitable.  Each thinks they can keep the other for them to love.  They can keep the love alive, just not the body. 

Until we come to terms with death, we cannot live meaningfully — sadness is unbearable, and joy is shallow and fleeting.  We experience little deaths every time there is a separation.  There are tearful goodbye’s at the doors of preschool classrooms and college dorms and weddings.  I remember my Mother commenting that when we returned home for a visit as an adult family, when we left, she had to get in the car, go out and do something.  It was hard to say goodbye even then. 

We don’t want to let go.  If we don’t, however, if we don’t let go of that little one trying to learn to walk, that little one will never learn to walk.  If we love our child, we have to let go.  Otherwise it is not love, it is ownership, possession.  It is about us, not the child. 

Yes, to let go at the time of death is an act of love.  It is an act of love for a Caregiver to finally say, “I love you, I will miss having you here, but it is okay for you to leave.  I will be okay.”   It is an act of love, a final beautiful gift to the Caregiver and those who want so badly to keep the one they love, it is a gift to say to them, I love you, I will miss you, but it is okay for me to leave leave you now.  You are free to live. 

For the dying whose capacity to communicate has long since gone, the words of love may not be there, but the person who lived in that body before the Dementia took him/her still leaves behind love from better times.  The care you have given, maybe long after romantic feelings have been snuffed out, carries within it, love from former times.  Death can free memories of better times to surface and overshadow the struggles and the pain and the hopelessness. 

Death by its very existence gives life its sweetness.  In his dying, Doc is touching his family in a way that has folded into it an intimacy that can be found nowhere else.  I have had the privilege of experiencing a moment of that deeply moving intimacy. 

Is death friend or foe?  Sometimes it can be a merciless foe.  Tonight, as it approaches, it is a wise and thoughtful friend – a gift ready to be opened.

 

March 21, 2009

Stuck Caregiving! What am I missing?

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We are now into the later stages of Parkinson’s and moving into Parkisonson’s Disease Dementia (a Lewy Body Dementia).  Traveling is tough.  We can’t really plan much of anything since we never know from one hour to the next whether Mary Ann will crash and fold for a couple of hours of napping, have a major intenstinal event, or need a trip to Baskin and Robbins, or Sonic, or DQ or Sheridan’s.  Getting very far from medical facilities that can handle the complexities of her convergence of medical problems, provides a strong disincentive to venturing very far. 

To a certain degree, we are trapped by the Parkinson’s.  The dream of that train trip across Canada appears to be left to the world of fantasy.  My dream of a log cabin in the country is not an option, although I doubt I would be willing to do the work necessary to take care of such a place anyway.  That trip to the Snowy Mountain region of Australia is out of the question. 

There are all those other retired folks who travel and dine out and go to shows and concerts.  We have never so much as seen the Grand Canyon.  Just watch cable television for a while and look at the beautiful, exciting places to go and things to do.  There will be no dinner-dances (gratefully, since I can’t dance).  There will be no treks into the woods or wetlands for rare bird sightings. 

What are you missing?  What are the things you planned to do before the Chronic Illness joined your family?  Are you going stir crazy looking at the four walls of your home, or the inside of your car as you make short local trips, or the waiting rooms of multiple labs and doctors offices?

I have to admit that at the moment, I do not have identifiable feelings of resentment about what I am missing.  I can only speak for myself on this.  I will not presume to speak for Mary Ann. 

We have had some adventures in our life together, however low key they may be.  We have toured England, the Netherlands, Austria, Switzerland, Belgium.  We have cruised the Virgin Islands and traveled to Denali in Alaska and cruised the coast to Vancouver.  We have skiied in Colorado.  There was also that trip to DesMoines — the notorious diversion from Colorado triggered by uncooperative children in the back of the station wagon. We have made it to see Santa Barbara and the Carolinas. 

All that is not to impress you with our travels.  For over forty-three years of marriage, that is nothing to brag about.  That is not the point.  The point is, as much as we were in awe of the beauty we saw, it did not give our life meaning and purpose.  What we saw was interesting greenery, colorful flowers, varied topography, beautiful structures.  Sometimes we stayed in rooms with nice looking decor, sometimes in very ordinary accommodations. 

When a Volunteer comes to stay with Mary Ann for a couple of hours, I sometimes head to a nearby lake with some of the most beautiful gardens imaginable, filled with ponds and waterfalls, colors dramatic enough to take my breath away.  I can head out to places where Eagles are nesting and water birds are migrating by the tens of thousands.  Within an hour and a half of here we can find restaurants as good as any anywhere and take in the occasional show.  When all the pieces fall in place, I can travel to a spot a few hours away and spend two or three days in utter solitude, hiking and reading, observing wildlife, feeling the warm sun and the soft breeze on my face, the rustle of the leaves, sunsets that fill me with wonder. 

Yes, I am missing wonders that are spread all over the world.  What I am not missing is the capacity to experience the marvel of all there is to see as the sun and the moon and the stars illuminate the part of the planet in which we live.  The topography (admittedly, pretty flat in this Midwestern location), the flowers, the birds, the trees, the wildlife, restaurants and stores and movie theaters are here to be experienced. 

More than that are people of all sorts, with stories to tell.  In fact, through the wonders of technology, I can interact wtih people from all over the world.  In our online group of Spouses of those with Lewy Body Dementia, there are people from New Zealand, from Italy, from Wales, from Canada, from all over the this country.  There are children and Grandchildren to be celebrated.

I guess I am just not sure I am missing anything so important that it needs to make me sad.  Sure, if circumstances allowed it, we would take that train trip across Canada or see the Grand Canyon, I would venture off to Australia, live in a log cabin in the country, but if none of that ever happens, I will not despair at all that I have missed in life.  Life has been full to the brim.  More than I ever thought to dream has come to be in one way or another. 

Again, I have to ask, what would you like to experience were it not for the commitment to Caregiving that shapes your life now and limits possibilities?  How does it make you feel no longer to have the option to realize those dreams as you had imagined them?  What do you do with those feelings?

 

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