June 24, 2009

Caregiver’s Plans for Deck Therapy!

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As they swung the pickaxe and wielded shovels trying to dig through the huge roots of a Bald Cypress Tree and the rock hard Kansas clay just below the roots, the heat index reached 111 degrees yesterday.  Three young men sweated and strained, pulling up water soaked sod to get to the roots and the clay. 

In this heat and at my age, it seems much better to watch others work than to join in the digging.  Today the work continued with more digging, with the addition of the job of bringing huge rocks from the truck in the street in front of the house to the back where they now lay until they find their way to their permanent place in what will be a waterfall, a pondless waterfall.  

They had a little walk-behind Bobcat to move the rocks, but the rocks had to be loaded into the bucket and carried from it.  The well is dug, the liner laid out.  Tomorrow the pump will be installed, the filter filled, the rocks arranged, and later, maybe the next day, the native plants put in place. 

There will then be a waterfall flowing into a manmade wetland to provide an aesthetically pleasing solution (hopefully) to an ugly problem with standing water fed by regularly cycling sump pumps of three houses, ours being the middle one.   

We have committed substantial personal resources to this project.  I cannot be sure that the days and weeks and months will confirm it, but my expectation is that the setting on our deck become more of a sanctuary than it already is. 

This little place where we live is our world most of the time.  We are not completely homebound, but we spend the vast majority of our days here.  To put it bluntly, my goal is to keep from going crazy.  I will do Mary Ann no good if I lose my bearings.  The spiritual grounding that provides me with stability is the primary source of equilibrium.  That grounding needs to be sustained.  We have been through enough to confirm that I am not invincible.  It would be stupid of me to think so.  No human is. 

I recognize the need to have times of respite to help keep balanced and maintain the ability to care for Mary Ann’s needs in a way that nurtures her as a whole, complex, vibrant somebody who happens to have Parkinson’s.  I need the respite to be husband rather than a grumpy and reluctant care provider.  

Mary Ann and I are more grateful than we can ever say for the Volunteers and Mary who schedules them.  We recognize Mary to be a very special gift from God to our household.  The Volunteers give both of us time away from each other.  That time away makes our time together better. 

Tonight, Mary Ann enjoyed the company of good friend Barb.  While Barb was with Mary Ann, I ran some errands and spent time in my favorite close by place of respite.  There I encountered the doe that has been there the last few times.  The two wild turkeys returned to feed for a bit.  The view was as good as ever.  The humidity in the air created layers of mist with varying density, giving depth to the plains that extended for miles in front of me.  I encountered a nice young man there, watering some new plantings.  He is the realtor, excited about the open house coming this weekend, an open  house with the purpose of seeking folks to buy the twenty-eight lots that will be filled with homes, thereby eliminating that place of respite. 

For me to be a good care partner to Mary Ann, there need to be accessible places of retreat and respite, places I can be while we are at home together and there is no Volunteer available.  My office with the computer and the worship center is a place of respite.  The A-V monitor allows me to be here while Mary Ann is in bed or in her transfer chair in the living room. 

The deck can be such a respite with a little planning.  It is possible to plug  the monitor into an outlet on the deck.  My hope is that the addition of the waterfall will increase the power of that setting in providing renewal and refreshment.  Without the need to have a Volunteer scheduled so that I can drive to some other place for respite, our little corner of the world can provide more of what is needed to keep our system healthy and functional. 

Meaningful Caregiving will not happen by accident.  Sometimes it takes pickaxes and shovels wielded in 111 degree heat index weather to help create what is needed to nurture the spirit and sustain mental stability so that meaning can be found day after day in the tasks of caring for someone loved deeply. 

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.

 

June 23, 2009

Pundit says Marriage is Obsolete. Caregiver Disagrees.

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Author Sandra Tsing Loh has now declared marriage to be obsolete.  She and her husband of twenty years both had affairs and are divorcing.  She has concluded that marriage is simply obsolete these days.  It was useful in the agrarian culture up until early in the 1900’s, since many hands were needed on the farm.  Marriage is no longer useful.  Studies of primitive humans reveal that the spark in a relationship is programmed to last about four years, long enough to have two babies up and out.

I am tempted to get on a soap box and with great self-righteousness rant against such silliness.  That would be far too easy.  I have counseled couples through some very tough times over the years.  Some worked through their problems and found a new relationship that had more resilience and strength an intimacy than before they struggled through whatever it was.  Some concluded that they needed to divorce and begin new lives.  There were money problems, affairs, trust issues, problems with alcohol misuse, abusive behavior.

I respect those who worked out their relationship, and I respect those who chose to divorce and begin new lives.  Does that sound unpastor-like?  Divorce is among the most painful experiences anyone can have judging from what people shared with me over the years.  It is frightening how many killings are done by estranged spouses.  When I moved to Oklahoma City five months ahead of Mary Ann and our children, who were finishing the school year, I was standing just inside the door of a Skaggs Drug Store returning a faulty alarm clock I had gotten the day before.   As I was standing at the counter, someone ran in and hid behind the counter where I was standing.  When the doors opened, I smelled the gun powder.  Fifty feet away from me, outside the door of the store, an estranged husband shot his ex-wife in the face.  After a time, I went out the door to leave and walked by the paramedics with her.  She died there in that spot.  The ex-husband was found at Lake Overholser about a mile and a half away.  He had taken his own life.

Having seen the level of pain that comes with it, I no longer judge those who have chosen the path of divorce.  Those who have experienced divorce are unlikely to recommend it as something to be sought after.

With that said, most of those who divorce do not then conclude that marriage is obsolete.  Apparently, almost 90% of those who divorce choose to remarry.  It appears that we are wired to marry.  I realize that sounds ridiculously obvious, but apparently it is not obvious to some.

Assuming that in our primitive brain the spark that brings a man and a woman together has a four year shelf life, the conclusion implicit in the author’s contention that marriage is obsolete is that there is no point it staying together once the spark has expired.  In fairness, I think she would say that it is no longer sensible to try to recreate the spark after many years of marriage.

I guess the author’s conclusion might be reasonable if the spark were all there is to marriage.  To use her metaphor, a spark is what gets the fire going.  It would be pretty hard to weather a cold winter if the heating system in the house never had more than a spark.

If we chose to live only by what lay in our primitive brain, the fight or flight impulse would preclude the possibility of living in peace with other human beings, at least other than those in our tribe.  What makes us human is the capacity to use our frontal lobes to reason out a better way to live.

If we chose never to move from the spark to that which the spark ignites, of course marriage would become obsolete. What the spark ignites is relationship.  The spark ignites feelings that grow into actions that produce newly discovered feelings that spark levels of trust and intimacy that could never be experienced if the spark were to remain the only measure of the value of marriage.

The spark needs to be in contact with some sort of combustible material or it will produce absolutely nothing but a tiny burst of light and heat lasting only a fraction of a second.  The combustible material is made up of promises and commitments that are lived out day by day in big ways and little ways.  The combustible material is not romantic gestures (although there is a lot to be said for them).  The combustible material is made up of time spent listening to one another, arguing with one another, forgiving one another, standing up to one another and giving in to one another.

Long marriages provide the possibility of a kind of relationship with a beauty and depth, that is far beyond the spark that brings couples together in the first place.  People who have not chosen to marry or are divorced or widowed, can also find deep and lasting relationships that grow out of the combustible material in their relationships with those who are closest to them.  Marriage, however, is certainly not obsolete as a meaningful and fulfilling way to live for as many years as life allows.

For Mary Ann and me, marriage is hardly obsolete.  It is what allows us survive in difficult circumstances.  We get to experience relationship that is deep enough to weather irritations and frustrations and misunderstandings without any of it stealing the fire from us.

When in the Seminary training to be come a pastor, I was in a choir that sang Bach’s St. John Passion three times over four years.  The third time we sang it was one of the most powerful experiences I have ever had in my life.  I will never forget singing the chorale at the conclusion of the Passion.  The power of that chorale lay in what had gone before.  Each aria and recitative and chorus sung over almost an hour built one on the last until all that had gone before filled the last chorale with overwhelming joy, more deeply moving than there are words to describe.  Without what had gone before, the chorale would have been a beautiful hymn.  With what led up to it, the experience touches me to this day, forty years later.

No, Ms. Sandra Tsing Loh, marriage is not obsolete.  For me, our marriage, now, after forty-three years is the chorale at the end of the something that has been building in strength and power for all these years.  The spark has ignited something enduring and of great beauty.

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.

 

June 21, 2009

Caregiver’s Moment of Melancholy

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Music seems to crack open my mind and heart in ways that most anything else cannot.  It is a good thing when it happens.  Needless to say for those who have read this blog, my mode of operation for handling stressful situations is to think my way through them.  I put words together in my mind that frame whatever it is in an intellectual structure that makes it seem more manageable to me. Music seems to dismantle my neatly formed defensive structures and feeling overcomes thinking for a time.

Tonight I listened to music for about an hour and a half, a couple of CD’s.  One was done by a composer named Marty Haugen.  He writes liturgical music. Much of what he writes has a simplicity and a melodic style that is quite disarming.  In my last couple of decades in the ministry, Marty Haugen’s music often found its way into worship services.  The other CD was one in the Celtic Woman series.  My defenses are of absolutely no use in the face of the crystal clear sweetness of those lovely voices.

In her comment on last night’s post, Sharon touched on the one thing that puts into perspective all that we struggle with as full time Caregivers of our spouses.  The time we have with our spouses is of great value against the backdrop of what is coming.  There is no predicting the future.  I may die before Mary Ann.  For most of us in this stage of caregiving, the likelihood is that we will outlive our chronically Ill spouses.

The music tonight cracked open my heart and mind, and that likelihood surfaced.

I spent almost forty years in the business of helping people through times of grieving someone they loved who had died.  I have done more funerals than I can count.  I have buried people of all ages and circumstances from those who died in the womb to those who lived to within days of a hundred years old.  I have buried people who died accidental deaths and people who suffered a violent death at the hands of a perpetrator.  I have buried people who battled long and hard some form of Cancer before they died.  I have buried one of my best friends.  I preached at the funerals of two of Mary Ann’s brothers who died of Cancer, each at the age of fifty-one.  I preached at the Memorial Service for Mary Ann’s Mother.  I preached at my own Mother’s funeral. I know how to do a funeral and how to counsel people in preparation for the funeral and how to minister to them as they grieve afterward.

Tonight, broken open by the music, my thoughts and feelings went to a place of great pain. Just for a moment, I imagined myself sitting in that front pew feeling the deep sadness there.  Then, I suppose because I did it for my Mother-in-Law and my Mom, I pictured myself doing a Memorial Service in Northern Illinois where we grew up.  Many in the family there would not be able to travel to Kansas.  Mary Ann’s very best friends of more than fifty-five years are there, her Sisters-in-law, nephews and nieces who love her very much, my brothers and sisters and their families, are all there or close enough to get there.  I wondered if I could do the service in a way that would center on Mary Ann’s life and not my grief.  Who else would or could do it?  We have been gone from there for almost fifty years.

For those of you who know me personally, please do not be concerned that I am in some sort of deep emotional struggle.  It was simply a time of encountering a potential future reality.  It is a good thing to be able to go there, grieve, and come back from there.  What I encountered there was painful beyond description.  Yes, I have whined about the struggles of taking care of Mary Ann, the frustrations.  I have shared that I get irritated at her and get grumpy sometimes.  I would not give up a moment of it.  I want it to go on for years to come.  We have been married forty-three and a half years.  I plan on at least celebrating fifty years of marriage with her.

Those of us who are caring full time for a spouse with a chronic disease, to be able to function effectively day after day, have to distance ourselves from some of the harsh realities.  On occasion we also need to catch a glimpse of those realities, so that we can gain perspective on the value of the time we have with the one we love. Tonight I caught that glimpse.  I am celebrating the time we have together.

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

 

June 20, 2009

Caregivers Sometimes feel Trapped

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I have been writing these posts with a certain bravado about our meeting the challenges and choosing to live with meaning, refusing to let the Parkinson’s rule.  As is often the case, saying it is far easier than doing it.

Every two or three months, I take up the shower mesh from the bathroom floor to scrub it with Lysol Cleaner.  We put the interlocking mesh squares on the bathroom floor to protect Mary Ann from experiencing serious damage from the ceramic tile floor if she falls.  An earlier post includes the gory details of the time she fell on that unprotected floor and ended up in the Emergency Room.

The mesh lets the water through so that what doesn’t run down to the drain dries fairly quickly.  The mesh is made of a pliable plastic material that is impregnated with some sort of mold resistance material.  It remains clean other than in some places having a thin layer of residual soap from multiple showers.  The scrubbing I do just makes me feel better about the cleanliness of that floor.

I was outside for a few minutes checking on the tiles drying in the sun on the driveway, talking with a neighbor.  When I went inside, Mary Ann was on the floor in the dining room. She was not hurt at all.  She could have been hurt, but was not.  In the process she had knocked over some coffee demanding some spot cleaning on the carpet.

With the addition of the video monitor, we have reduced the number of falls dramatically.  This relatively minor matter, the fall, reinforced that being out of sight of Mary Ann either by not being in the room with her or not having the monitor in sight is risky.

I struggle to write about being trapped by the Parkinson’s as a Caregiver when Mary Ann is trapped in her own body.  I have no right to feel sorry for myself when she has fought with her own body for over twenty-two years.  A number of years ago, I remember her saying through tears (she seldom cries) that she wished she could get a new body.

She is trapped in a more comprehensive way than I am.  She cannot get a Volunteer to come and give her a break from her own body.  She is trapped, and to a lesser extent, so am I.  The Parkinson’s has come to live with both of us and has become a constant presence in the lives of our Children and Grandchildren as well.

Speaking only from the vantage point of the Caregiver, at times I find it very frustrating that I cannot simply immerse myself in something that takes me out of visual contact with Mary Ann.

A few days ago, I needed to have a Volunteer with Mary Ann so that I could go out and clean the gutters.  The Volunteer had to leave before I finished.  There was at least one fall while I tried to complete the task.

The solution of having Mary Ann outside with me for anything I need to do is not as workable as it may sound.  Due to the Parkinson’s and medications, she does not handle heat well.  She does not enjoy just sitting outside.

Going outside to feed the birds has to be planned for when she is either early in a nap, when it is less likely she will need to get up, or in the first hour or so when she goes to bed.  After an hour or so there is more vulnerability to her needing to use the commode.  Watering the flowers is equally challenging.

Sometimes I just head out the door and walk up to the corner three houses away and look at the sky for a moment, check for nighthawks if it is dusk, or just enjoy the sunset for a few minutes.  There is sometimes a feeling of being tethered to Mary Ann and her needs.  On occasion as a full time Caregiver to someone who needs help to do most of the things she does, my movements are governed by her needs, almost like a marionette’s movements are controlled by the puppeteer.  She doesn’t want it any more than I do, but nonetheless, that is how it sometimes feels.

Gratefully, there are also lots of times when I feel good about being with Mary Ann, able to be close to her so much of the time after years of being away at work sixty to seventy hours a week.  I hope that Mary Ann feels good about my being here some of the time also.  She is not able to express such feelings, but hopefully, they are there.

With all of that said, Mary Ann and I are living lives of value and meaning with joyful times as well as frustrating times.  We are free to do what we are able to do when we are able to do it..  We are experiencing life fully, taking each day as it comes with the bad and the good — pretty much the same way any of us lives, no matter what our circumstances.

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.

 

June 18, 2009

What should we Tell the Kids? Our Family and Friends?

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , , , , |
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When Mary Ann was diagnosed with Parkinson’s twenty-two years ago, our Daughter Lisa was a Senior in high school and our Son Micah was in the Eighth Grade.  They were, of course, both living at home.  I had gone ahead to a new job in Oklahoma City, many hours away.  The family joined me there at the end of the school year.

Since the kids were at home, they knew pretty much from the beginning the name of the Disease with which their Mom had been diagnosed.  For those who are diagnosed after the children are out of the house and living elsewhere, the question is, when should they be told.

I am convinced that more information is better than less information.  Hiding the truth is unsettling to the children and unfair to them.  They are a part of the family.  They need to hear from Mom or Dad, whomever has the disease, what it is and what it means.  Adult children, even young adult children could easily feel betrayed if they found out from someone else through a slip of the tongue what they should have heard from their parents.

Mary Ann chose not to tell family and friends for the first five years after diagnosis.  She did not want to be treated differently on account of the Parkinson’s.  I would have preferred telling family and friends much sooner, but it was her call.  She had the right to decide who should know what about her diagnosis, and when they should know it.

My bias is toward laying out the basic information so that there is no guessing or wondering.  The disease seems to have more power when it is secret than it does when it is out in the open.  For people who care about you to move through the process of coming to accept it, they need to know about it.

When finally the news was out, we could begin to deal openly with the various challenges that came with it.   People were anxious to help to whatever degree they could. The Parkinson’s just became a part of the landscape of our lives.

Caregivers and spouses need to decide as each new dip in the roller coaster comes, how much to tell whom and when to tell them.  I have heard many say, “I didn’t want to worry the kids, so I didn’t tell them what was going on.”  The result of that approach is to increase the concern of the kids since they can’t count on hearing the truth about what is going on.  They wonder what they are not being told.  They worry about how things are really going.

It is not, of course, as easy as deciding to tell them everything all the time.  Since adult children have full lives with worries of their own, they can be overloaded with too much information, drawing them into every bump in the road in their parents’ struggle.

I guess the goal is to find the Golden Mean, the balance that allows them to be confident that they will hear when there is a significant change, but not be drawn into the day to day ups and downs.

The same is so with friends and family.  They are interested in how things are going, but they do not need to be invited to join you on your roller coaster ride.  They have one of their own.

One mistake I have made in the past as I have communicated changes in our situation, is to share a noticeable dip in the roller coaster we are on, but neglect to give a quick follow-up when things are going better.  Especially those with whom we share only occasionally and then only when there is a dramatic change can be left thinking we are at a low point in our struggle when in fact we have come out of it to a much better place.

Gratefully, at least for computer users, there are free websites that can be used to post updates.  That way people who are interested in finding out what is going on can check the site to see how things are going.  Those sites can be used to make sure that people have accurate information on your situation, rather than resorting to the “I heard that…” word of mouth that may confuse the facts.  A couple of sites that come to mind are http://www.caringbridge.org and http://www.carepages.com.

As for the kids, they need to be confident that they will hear about any major changes without being drawn into the day to day ups and downs.  That provides them with a sense of security that allows them to concentrate on their own lives.  We raised them to go out on their own and make lives for themselves.

Friends and family will vary in how much they want to know, but they cannot be a support when troubled times come if they don’t know about the trouble.  Let them know when the troubled times have relented so that they can celebrate with you.

The people in your life care how things are going.  They want to know, just remember that they have lives of their own.

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.

 

June 17, 2009

Caregivers: Choose Life

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I have come to think that for all of us, but especially those with chronic, degenerative, life-threatening diseases, very many of our choices, big ones and little ones, can be framed as choices either to live or just fill time until we die.

At the Parkinson’s Support Group meeting while back, there were a number of people present who have had Deep Brain Stimulation surgery (see the June 4th post on this blog for a description of the procedure) to lessen the symptoms of their Parkinson’s.  When I thought about it after the meeting I concluded that those who chose the surgery were choosing life.  They were choosing not to simply bide their time as the disease progressed.  While people don’t die of Parkinson’s, the Disease often in some way plays a significant part in their death.

Of course not every decision we make is on the scale of whether or not to have DBS surgery.  With that said, I have begun to think that we can ask of very many of the decisions we make, are we choosing life, or simply filling time until we die.

I have been wondering lately if in our care giving and receiving mode, we are settling into a routine that is more about waiting and filling empty spaces of time than it is about living meaningfully. Every time we set foot out of the house to eat or shop or go to a public place, a meeting, worship service, to see our kids, to go for a ride, it is a major hassle.  We are always at risk for Mary Ann having some sort of problem that is much more difficult to handle away than at home.

When we eat out, it is often pretty hard to get food from the plate to its intended destination without some of the food taking a side trip to shirt or lap or chair or floor.  Just the logistics of getting to the table to eat in the first place is not always very easy.  When we attended that Parkinson’s meeting, there was unexpected intestinal activity that was pretty tough to deal with in a very inaccessible bathroom while a couple of folks we had enlisted to watch the door waited for what must have seemed like an eternity. Heading out for a drive of any distance can present the same sorts of problems.

It is so much easier to stay home and expand little tasks to fill more time than needed, to expand their importance and create the illusion that they are more satisfying and meaningful than they really are.

It is surprising how hard it can be when making a choice to determine which option is choosing life and which is just filling time.  For Mary Ann, watching television fills a void created by losing the ability to do most of the things she used to do for pleasure. However, watching television is also a very addictive life waster — something just to make the time go by more quickly.

There are times when watching a television program or DVD can be informative, mentally stimulating, very entertaining, refreshing and renewing.  There are also times when the television brings nothing to us, but rather consumes our lives, providing no real nourishment, just empty calories.

After procrastinating for a number of days, when finally we actually did do some flower planting outside, it seemed to be time we were living, not just waiting.  When we push ourselves to commit to something, a trip out, a visit, attending an activity, it is often life-affirming.  The temptation is to find some reason just to stay home, to do something familiar, something that in no way stretches us and stimulates us to live life to the fullest.

It is not as simple as concluding that staying busy is the way to fill our lives with meaning.  Busyness can be as life draining as watching reruns just to make the time go by.  For me, sitting alone, listening to a CD of an interesting piece of music, thinking and processing things mentally, calming my spirit, I find to be life-affirming.  Sitting on the deck, watching clouds and listening to birds is meaningful and productive time.  Quietly reading something that is engaging and mentally stimulating or spiritually nourishing is life-affirming for me.

Choosing to spend time with others is choosing life.  After a few days of talking about doing so, last week we called a couple of friends who, gratefully, were able and willing to say yes to a spontaneous invitation to go for a drive in the country.  The day was beautiful, the scenery was stunning.  We stopped at our favorite potter’s studio.  We stopped for ice cream in a picturesque small town in the area.  We tasted wine at a winery outlet, very tasty wine. (I know, ice cream and wine??)

Mary Ann chose to attend a salad luncheon with friends at church last Wednesday. While it was not expected of her, she insisted that we bring a salad – another foray into the kitchen.  Friends invited us to come down the block one evening for cookies and conversation.  The time together was not only entertaining but nourishing to some meaningful relationships.

It is very tempting to avoid the hassles and just stay home.  What was the catch phrase in those old Nike commercials: Just do it!  We have committed to a ten hour trip to Northern Illinois for a family celebration at the end of July.  From there we bring our oldest Granddaughter with us to Kentucky to spend time with our Daughter and her family.  We just received another wonderful thank you gift from the congregation I served. We provided a free place for the new Pastor to stay for a few months, waiting for his family to be able to move here.  The gift is a trip to our very favorite Bed and Breakfast in Arkansas — another long trip, but exceptionally life-affirming.

Choosing life is not always done in huge life-changing deciaions. Choosing life is often done one tiny decision at a time.  The cumulative effect of those little decisions determines whether we are living or just waiting until life is over.

Whether the choice is to undergo major surgery to provide hope of an improved quality of life, or to get out of the house and head down the block for cookies and conversation with friends, the choice is ours to make.  Either we choose life or just wait until it is over.

When given a choice, my hope is to have the courage to choose the option that is life-affirming rather than life-wasting, and, as the Serenity Prayer says, to have the wisdom to know the difference.

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.

 

June 16, 2009

They are all Okay. I am just Pretending.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , , , , |
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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.

 

June 15, 2009

Problems Sometimes Give Good Gifts!

Posted by PeterT under Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , , |
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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.

 

June 14, 2009

Creating a Nurturing Environment

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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I tried again tonight.  I am resorting to chemical warfare, natural, organic, but nonetheless chemical warfare.  The weapons: blood meal and Cayenne pepper.  I am determined to have sweet potato vines growing in the large pot on the deck, and the squirrels are determined that it will not be so. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

June 13, 2009

Do Each Task as if it is Important

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , , , , , |
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I cleaned the kitchen floor two days ago.  I got out the Swiffer WetJet with the little button on the handle that squirts some cleaning liquid on the floor to be wiped with the pad at the end of the mop handle.  It is not rocket science.  I didn’t break a sweat.  The floor looked nice afterward. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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