Meaningful Caregiving

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November 20, 2010

Death Strikes Again!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Uncategorized | Tags: , , |
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There were eight of us.  Mary Ann left and there were seven.  Now there are six.  Today Marlene ended her journey here with us.  The eight of us met in 1972 when we moved to Prairie Village, Kansas, and a male child was born in each household.  Each of us also had an older girl.  We spent the next fifteen years in the same congregation with lots of folks who became friends.  Three couples had pretty much grown up together and all became fast friends at college.  As time went by, Mary Ann and I were sort of adopted into the group.  A couple of times we vacationed together, even after we had move to Oklahoma City.  The relationship continued through the nine years in Oklahoma and the last fifteen years here.   

While Charlie and their Daughter and Son and families are the hardest hit and own the grief at Marlene’s departure, we were close enough, like family, that the place where the grief and sadness live in me has stirred.  Bad planning on my part combined with Friday afternoon traffic resulted in my missing the time at the hospital when the life support was removed.  I did make it to the house to spend just a few minutes with Charlie, his Daughter and Son-in-Law.

Marlene and Charlie went to Mayo Clinic fourteen years ago and heard the diagnosis and prognosis, “Go home and get relationships in order, make peace with God.  Marlene will live two to five years before the ALS takes her.”  That was fourteen years ago!  She died today.  Charlie and I observed today that we both had married people with powerful strength of will.  From our vantage point it sometimes seemed like stubbornness.  Both of them defied the odds and lived with dignity far beyond reason given the ravages of their diseases. 

A little over two years ago, I decided to retire to take care of Mary Ann full time.  In the letter to the Congregation, I quoted an email Charlie sent me when I first announced my decision.  About two years earlier, Charlie had retired to part time work to take care of Marlene.  Charlie wrote:

“I’m pleased to hear that you have reached your decision. The decision you faced was not “if” but “when”. Now that you have come to the conclusion that June 30 will be the date, you will have time to acclimate and I’m confident that over time you will become more comfortable with your decision to put family first. Keep in mind that serving as a full time caretaker for Mary Ann is not only a duty, but an honor – no one else knows her as well as you and no one else could do a better job. We pray that you will find your new role fulfilling.” 

As Charlie predicted, I did find that role fulfilling.  It was truly an honor.   I have no doubt that it is so for Charlie, as it is for me, we would chose to do it again without a moment’s hesitation. 

I discovered decades ago that when a loss comes, it is compounded by any earlier significant losses.  The losses accumulate.  As I drove over in hopes of making it to the hospital in time, the feelings stirred and the deep sadness was exposed.  At some level, I will be dealing with my own grief as Charlie and his family deal with theirs. 

All of us who have known Marlene recognize what  a remarkable person she has been.  Not only did she deal with her disease without complaint, but she continued to focus on others.  She always voiced much concern for Mary Ann and me in any interaction.  She turned away from herself and toward others.  As Charlie noted in our conversation, it is probably one reason that she stayed so strong so long. 

Mary Ann and Marlene shared a perception of their respective realities.  Neither of them accepted the fact that they were sick.  They lived as if there was nothing wrong with them.  Now they are both done with their battle here.  They are fine.  We are not.

Monday morning will be the funeral.  It will be a hard day for all of us.

 

November 1, 2010

I’ve Lost the Map

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , |
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It is hard to know where you are if you have no map.  Actually, there is no map.  More correctly, there are maps, but none of them can tell me where I am.  There are all sorts of descriptions of how the grieving process goes.  Some of them, most of them are useful in helping find a vocabulary for talking about grief.  None of them provides an accurate map of where the grief is going, when junctions come, what ways to go when they do, what the destination looks like and where the one grieving is in relationship to it, whatever it looks like. 

There are studies that reveal what people have said about how they feel at certain points in their grief journeys.  No matter how many studies are done, or how large the pool of subjects is, there is no way to predict how any particular person will move through the grieving process.  The studies can provide the average time for this or that, the way the average person who is grieving experiences each step in the process.  Have you ever noticed how unusual it is for the high temperature and the low temperature for a given day to perfectly match the average temps for that day?  It would be pretty remarkable to find someone exactly average in height, weight, hair color, eye color, were all the residents of the US to be included in the pool from which the averages were detemined. 

The grief process is unique to each particular person who is grieving.  The last few days have been puzzling.  There have been times I have felt very good, a whole person again.  There have been times I have felt very much alone, not whole at all, missing Mary Ann terribly.  I remember when Mary Ann and I were trying to manage all the challenges of medications and side effects, the roller coaster ride of daily, hourly, changes.  It became clear that Mary Ann was living right on the margin between being functional and being non-functional.  It took very little to slip from one to the other.   The grieving process, especially early on, is very much like that.  Grief and healing are the shoulders on either side of the road.  It doesn’t take much to drift on to one shoulder or the other.

One of the challenges of caregiving was figuring out where we were in our journey.  We knew where it ultimately would lead, but there were no markers telling us where we were in relationship to that destination.  That was part of the reason that we lived in denial.  It wasn’t so much denial as it was having no clear roadsigns telling us how far we had to go yet. 

If you read the posts that I wrote during the last year and a half of the battle with Mary Ann’s Parkinson’s and the Parkinson’s Disease Dementia you will see three words or phrases used very often.  One is “Margin” as described above.  Another is “Threshhold,” and the third is “New Normal.”  Those words fit how we lived during the toughest years, and they fit the process of going through the grief.

As we walked that narrow margin between functionality and the lack of functionality, there were theshholds that we crossed from one level to another, most often to less functionality.  When that happened, we would have to locate the new normal.  The difficulty in dealing with crossing a threshhold to the new normal is that there was no map showing us where we were on the road.  There were no signs, no markers revealing that a threshhold was coming or that we were crossing it.  The only way we could tell if a threshhold had been crossed was if we looked back long enough to conclude that there would be no return to the former functionality.  We could only identify the threshhold after we crossed it.  Once we recognized it had been crossed, we could get on with the task of identifying and accepting the new normal.  Once that was done, we could then focus our time on accommodating to that new normal — functioning as well as possible in our new location, new normal.

This weekend has brought those three words and phrases into this journey of healing that I am on.  I am moving along a narrow margin bounded by grief and healing.  There seem to have been some threshholds traversed along the way.  I could not see them coming; they were not obvious when I was crossing them.   There were no markers or signs that said, this is where you are.  I have identified after the fact, transitions from one level of functionality to another.  My code language for good health is “wholeness.”  I don’t really know what that destination looks like or if it is even a destination rather than a way to think about the journey. 

It is hard to identify a new normal, in this journey toward healing.  There are no reference points.  Studies can describe pieces of the truth about such a journey, but no one is average enough to fit the descriptions perfectly.  I have to say, that looking back from where I am now, it seems to me that the journey I am on is one of healing.  Healing is seldom free from pain.  I have first hand knowledge of that truth as the saddle sore (my riding trophy) heals slowly.  The pain of grief remains readily accessible.  It is now no longer disabling pain, but pain nonetheless. 

Those of you who read this need to know that what I reveal here about the grief does not shape how I function when I am with other people.  Whenever, whatever threshholds have been crossed, the normal in which I am now living allows me to enjoy other people, laugh and celebrate, enjoy the uniqueness of friends, acquaintances and strangers.  The grief is near, but I remain on the journey to healing.

 

October 24, 2010

Was I Her Husband or Her Caregiver?

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
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When taking care of a Loved One who is declining, there sometimes comes a point at which there is a transition from Husband or Wife, Mother or Father, Son or Daughter, to “patient.”  A sort of clinical distance emerges and the tasks are carefully and responsibly and compassionately done with gentle concern.  That clinical distance helps the Caregiver keep from getting lost in the emotions, disabled by his/her own feelings.

Up to the very end, I never ceased to be her husband first and foremost.  There was never any clinical distance.  Mary Ann was never a patient to me.  She was my wife.  The way I kept from being disabled by my feelings was to live in what I have recently described as intentional denial.  There was never any waning of the intimate romantic feelings as she became more disabled.  In fact, if anything, they grew stronger as our battle with the disease got tougher.  Certainly we had all the usual times of irritation and snipping at one another.  That comes with longevity in a marriage.  It means nothing other than that the relationship is secure enough to provide the freedom to be grumpy with one another at times. 

What I will describe next will sound as if it is at odds with what I just said in the previous paragraphs.   What I said above and what I say next are both the truth, even if it seems impossible for that to be so.

After I retired to take care of Mary Ann, I struggled to find a way to feel a sense of accomplishment each day.  When I was working there were all sorts of external signs that I was doing something worth doing, something that had meaning and purpose — a job.  When I retired, everything that had confirmed that I had a job ceased.  One day I had a job as the Senior Pastor of a large congregation with a staff for which I was responsible.  The next day, I was at home with Mary Ann, helping her just as I had been the time I was at home and not at work before I retired.    

There was no tangible evidence that I had worth.  Constant care was needed, so I was working more and harder than when I was actively serving the parish.  There was no paycheck, nor were there people telling me that I was doing a good job.  It took some months and some mental gymnastics (and reflecting on the matter in dozens of posts on this blog site) for me to realize that what I was doing with Mary Ann was not only as important, but more important than what I had been doing when I was working for pay. 

The result of that realization was that the caregiving I was doing became my job.  I came to treat it as an important job, each task needing to be done well, taking all the attention and skill I could muster.  I needed to become expert at it, doing it in a way that reflected back to me a sense of accomplishment. 

Caring for Mary Ann became my job.  When that transition came, I felt as if I was freely chosing the job.  There was no reason for resentment since what I was doing was my profession.

Caring for Mary Ann became my job, but Mary Ann never ceased to be or to feel like my wife.  I was her husband and she was my wife.  I do not deny that what I have just said makes very little sense.  All I can say is that is exactly the way I felt.  For the last two years especially, when I retired to do full time care, Mary Ann was my wife and caring for her was my career. 

I can’t explain to you how it worked, why it worked.  It just did.  I am grateful that it did.  Mary Ann never had to suffer the indignity of being my patient.  I didn’t have to give her up until she died.  I got to have my Beloved Wife with me every minute of our marriage.  The result of doing it that way meant that when she died, it hit very hard.  We did not ease into it.  I did not get accustomed her leaving before she actually left.  It has been excruciatingly painful, but I am not sorry that we did it that way.  Even knowing the depth of the pain, I would do it no differently were we to have to do it again (God Forbid!!!)  Yes, I would try to be kinder more of the time, more understanding, less grumpy, more affectionate, but I would not change the way we approached our relationship. 

I was her Husband and I was her Caregiver.   She was my wife and taking care of her was my job.  While thinking about it that way helped me feel worthwhile, the truth is, caring for her was exactly what it meant to be her husband.  We loved each other romantically, in spirit, in words and in actions.  As devastating as it has been to lose her from here, I feel full of deep joy that we got to experience that kind of love.

 

October 17, 2010

I couldn’t fix her.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , , |
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That is a reality that Caregiver’s often simply refuse to accept.  I think one of the things that allowed me to survive and resulted in a better life for Mary Ann was that I didn’t waste much time on things I couldn’t fix.  My goal was to try as hard as possible to figure out what we could actually do that would make a difference for good in whatever new symptom or return of old one or change in the effect of a medicine or loss of ability was impacting her. 

When a Caregiver does not accept the reality that he/she cannot fix his Loved One, the frustration becomes almost unbearable.  The illusion that the Caregiver can fix his/her Loved One is often worst in folks who seek to get their world under control, folks who tend to take charge, just the sort of folks you want among your close and trusted friends, since they are not shy about saying what they think.  In a group, they are the ones that organize activities, the ones who actually get the work done.  The trouble with that view of the world is that it is an illusion.  None of us controls the world around us, really.  We might be able to keep hold of a small corner of it for a while, but sooner or later (usually sooner) something or someone messes up our orderly world. 

Another problem with the illusion of control is that Caregivers often become depressed themselves, feeling guilty that they are not doing enough.  If they were doing enough their Loved Ones would get better, they think, or more importantly, they feel.  There are frantic attempts to make things perfect for their Loved Ones so that they will be completely insulated from the consequences of the disease.  Sometimes Loved Ones, especially if they are in denial about their disease, feed into the expectations that their Caregivers should make their world work again.  I remember how often Mary Ann, when asked about meal preparation, would say without hesitation, “They won’t let me in the kitchen.”  I, her Caregiver, was “they.” 

The truth is, Caregivers don’t own responsibility for their Loved One’s sickness.  Caregivers cannot fix what they have no power to control.  Caregivers can be empathetic and caring and loving and sensitive to the needs of their Loved Ones.  Caregivers can be Advocates for their Loved Ones, especially with all those who are responsible for their medical care.  Caregivers can and should learn as much as possible about the disease so that they can be more effective as Advocates.  Caregivers cannot remove the consequences of the progression of the disease, or the debilitating side effects that come from the medications or treatments.  That is just the way it is.  Knowing that can eliminate a lot of wasted energy.  Knowing that can reduce some of the frustration, some of the feelings of failure, feelings of guilt that plague most Caregivers. 

In the moments of pain at what Mary Ann suffered, it helps to remember that I couldn’t fix her.  If I could have made her better, I would have.  I didn’t have the power to stop the ravages of the Parkinson’s Disease and Parkinson’s Disease Dementia.  She often refused to accept that there were consequences to the Disease, consequences that neither of us could remove.  While at times that caused problems in trying to keep her safe and secure from hurting herself, it was her way of coping with an impossible situation.  She needed to deny part of her reality to keep from crumbling under the weight of it. 

Her coping mechanisms worked.  She never crumbled, not even close.  Spending 24/7 with someone results in getting to know one another very intimately.  It would be virtually impossible to keep up some sort of false front.  While we went toe to toe sometimes as we confronted a difficulty of substantial proportions, she never faltered.  She moved through whatever it was, no matter how impossible, with a calm spirit, like a ship securely anchored in a violent storm.  The times that was not so happened in hospital stays.  It is why we both hated them so.  A sort of psychosis would emerge as the days went by.  In the last months, the flair ups of the Lewy Body Dementia took her to very strange places where the equilibrium was inaccessible. 

While I did not have the power to fix her, I did what I had the power to do.  She remained strong, and when the time came, she left here to find healing and wholeness.  This is one of those times I lament that tears do not easily come.  They lay just behind my eyes.  It is a sadness that I cherish.

 

October 14, 2010

Needed Help, But Never Needy

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , |
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As the Parkinson’s took away Mary Ann’s ability to do so many things, she needed my help and that of the Volunteers to do fulfill the basic human needs.  The doors had to be widened for walker and wheelchair (thanks to the KC Crew of friends).  The carpet was replaced with something firm enough to allow the walker and the wheelchair to roll.  We got adjustable beds to help with movement.  The bathroom was remodeled to provide a roll-in shower.  Grab bars were added to the bathrooms, tall toilet stools installed.  There was a shower chair and then a bedside commode as time went by.  A portable ramp was purchased for use when needed.  A rolling Hoyer Lift was purchased for times I might not be able to get her up off the floor. 

We purchased special dinner plates for those with limited dexterity, then had ceramic ones made by a local potter.  We were given a set of large handled silverware, easier to grab hold of.  Bath Aide Zandra was engaged to come and give her showers twice a week.  Debbie from Home Instead came early Sunday morning for the last few years I was still working. 

Volunteers by the dozens (she called them her Angels) came many hours a week to help her with her personal needs, as well as keep her company.  I helped her turn in bed and go to the bathroom or use the bedside commode multiple time a night for many years.  I or the Volunteers helped her get dressed, move around the house.  I fed her sometimes at first and later all the time.  One way or another, I obtained or prepared food for her, sometimes Volunteers provided it. 

Mary Ann needed my help and the help of the Volunteers.  She was never needy.  To put it bluntly, she needed my help, but never needed me.  That sounds like it could be a bad thing.  It was not.  She loved me;  she chose to marry me, I cannot be anything but honored by that.  She did not need me.  She was always a complete person without needing anyone else to complete her.  Given the pain I have felt at her loss, I suspect I was the more needy one.  When I think about it, sometimes when I caught sight of the fact that she didn’t need me, I wondered if she actually loved me as much as I loved her.  It was not that she didn’t love me completely, it was that although she loved me, she didn’t need me. 

Realizing that was sometimes a little scary.  How could I count on someone who didn’t need me to actually love me?  I would be so much more secure if I had some leverage.  If I had something of value that she needed so that she would have to love me, then I could be sure never to lose her.   That thinking is almost like feeling as if I needed to hold her hostage, to have some control on her to make sure she stayed.  How could someone just love me, choose me?  I grew up with the same lack of self-confidence that often comes especially with adolescence. 

I did not actually live in fear that she would leave.  We had chosen one another and made a public declaration that we had done so.  We promised faithfulness to one another.  We kept our promise.  It is nothing out of the ordinary.  At the Hospice Grief Support Group meetings, around the table are folks, some of whom were married for sixty or more years.  The Kansas City crew of friends have all been married way over forty years.  Many of the people to whom I have served over the forty years of ministry have been married for multiple decades.  One couple made over 75 years of marriage.  Since Mary Ann died after we were married for 44.5 years, I have been married the shortest time in our family of five siblings.  Our parents were married 59 years before Dad died. 

She wasn’t needy.  She didn’t need me to make her whole.  She loved me, chose me and committed her life to me as I did mine to her.  Yes, she came to need my help, but she was never needy.  It was an honor that she chose me and loved me.  It was an honor that she allowed me to help her.  I could not have asked for a more privileged life with her.  I am so sorry that she had to suffer so many indignities and infirmities.  That is the source of my pain and sadness.   She never lost her strength of character — and she was a character!

It has been exactly four months to the day today.  That dawned on me when I signed in at the Support Group this afternoon and saw that the person who signed in before me had written today’s date.  I no longer have the privilege of caring for her, but my loss is her gain.  She is whole again, no longer in need of my help.  She is completely immersed in the unconditional love of the One who gave, who gives her life – now free to live that life without the limits of the Parkinson’s.

 

September 27, 2010

To Deny or Not to Deny? That is the Question.

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , |
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In the last Hospice Grief Support Group meeting, the observation was made that for many, the time of Caregiving is a time of grieving that accomplishes some of that task before the Loved One dies.  As I review the Caregiving role, especially the last couple of years of full time Caregiving, it is clear that we lived in denial.  Mary Ann’s denial was palpable.  She simply put out of her mind any thoughts of end times.  It wasn’t that she didn’ t realize what was happening.  On rare occasions, she revealed that at some level she was fully aware of what was coming in the not too distant future. 

She simply chose to engage each day as a living person rather than a dying person.  I chose denial also.  For us it seemed to be the only way to live fully each day.  Living in denial freed us to squeeze the life out of every moment we had together.  My denial was intentional.  When it came to using every tool available to sustain quality of life (more so than quantity), we did that.  I advocated for the best available treatment for her.  Having done that, found the best tools available and used them, denial as a daily mode of operation worked. 

One negative side effect was that I did not do anything to prepare for what to do when the end came.  While it is possible that the intensity of what I have felt, especially in the first ten weeks, could have been lessened in some way by choosing not to live in denial, I do not regret that choice.  Had I not lived in denial, I could not have given Mary Ann the respect she was due as someone fully alive, a force to be reckoned with.  Had I treated her in a sweet and syrupy way, displaying sympathy, feelings of sorrow for her, it would have stolen from her some of her dignity.  While I could be accused of rationalizing my own unwillingness to face the truth, I am convinced that we needed to be 100% alive while we were both alive. 

As to the negative side effect, I consciously chose denial fully aware that just as we were immersed in life until very close to the end, I would have to immerse myself in the grief and deal with it when it was time.  That is what I have been doing.  I still contend that taking on the grief fullyis the best way to get the intense grief work done so that new life can emerge.  That new life will not be free from pain but will allow that life the freedom to include joy again. 

When I was standing at the most beautiful rest area along a highway I have ever seen, I realized that sometimes beautycan hurt.  The rest area was on the shore of Rend Lake in Southern Illinois.  The sky held cirro-cumulus clouds, puffy and whispy, shaped in ways that stimulated the imagination.  There was a breeze that was warm and cool at the same time.  I realize that makes no sense, but that is how it felt.  The weather was perfect, the view impressive.  There was a huge expanse of well-kept grass that held picnic tables on slabs, some covered with a roof.  Some folks I encountered had a picnic supper there.  They always stopped there on their way from Chicago.  I spent about half an hour there, reading for a while, watching birds with my binoculars, walking around enjoying the view.  The experience was also laced with the pain of not being able to share it with Mary Ann.  I have often noticed that for me there is a longing to share with others any experience of profound beauty.  I have appreciated beauty without the pain at times, as when I stood at the top of that mound in the Flint Hills (see former post). 

I would not suggest that the denial we experienced was the way Caregiving should be done.  I can only say that it worked for us.  Would it have been better in any way had we been more realistic and accepting?  There is no way to know.

 

September 22, 2010

First Look at Grave Marker

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues | Tags: , , , , , , |
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I had not felt well mid-morning today, so I ended up bailing on lessons and staying in.  Later after feeling a little better, I finally just needed to get out.  I headed over to church to Parish Nurse Margaret’s Wednesday Blood Pressure Clinic.  My BP was fine, but as I was driving there, I glanced over at the cemetary toward the spot where Mary Ann’s ashes are buried to see if there was any indication that the Marker had been placed.  It appeared it might be there. 

On the way back I debated about it but decided to go ahead and stop by to see if it actually was there.  It was.  The Granite Marker has a Cross and a vine on it (as in the Vine and the Branches in the Gospel of John).  Then our last name is in large letters in the center at the top.  Below it are both Mary Ann’s and my names with the year of birth next to them.  Mary Ann’s, of course, also has the year of her death. 

I am not really sure how it felt.  I realize that doesn’t make much sense, but my feelings were just not clear.  I was a little apprehensive about how my gut would react when I saw it.   There was a feeling of heaviness, maybe the weight of the loss.  There was not any particular sense of her presence there since we were all there at the moment she left the planet.  The stone is a solid, unmoving reminder that she has died.  My name is there on that stone, a clear declaration of my own mortality. 

I am writing this account on The Caregiver Calling site since a portion of the grieving is the loss of the role of Caregiver and the one about whom and for whom I cared much of my and her lives.   I said in the last post on this site that I would write some thoughts for Caregivers as they do their task.  Many of those thoughts have implications for most of us in our regular daily lives.  It is also true that at some time during our lives most of us will be in a Caregiving role.

The first thought about caregiving is some thing that friend Charlie emailed to me when I first announced that I would be retiring to take care of Mary Ann full time.  He cares for his wife Marlene who has had a form of ALS for very many years.  Some time earlier, he had retired to very part time work to be with her.   He referred to doing that kind of caregiving as a privilege. 

To be a Caregiver truly is a privilege.  Saying that is not just a way to frame the opportunity so that it sounds more palatable.  It is an honor to have the chance to make a significant difference in someone’s life.  So much of what we do is about bartering, I’ll do this for you and you can do that for me.  Lots of couples live independent lives, each taking care of him/herself, sharing space and maybe kids.  Even when the relationship is close and the marriage healthy, there is only so much we can do to show that love to one another.   

When a debilitating illness or something similar arises so does the opportunity to give what is truly needed.  Mary Ann needed my help.  In yesterday’s Hospice Grief Support Group,  the Leader asked me what would have happened to Mary Ann if I had not been there and cared for her.  In answering I remembered something that Daughter Lisa said to me very many years ago, when we were talking about how to get some help.  Lisa had been an Administrator at a CCRC (multi-layered facility for Independent Living, Assisted Living, Health Center, Dementia Building).   She said, “Dad, Mom would not qualify for Assisted Living.”  She said that to help me understand just how much care I had been providing and how much was needed.  Volunteers from church were filling in while I was away from the house doing my job as Pastor.  Without my care she would have spent many years in a Nursing Home setting.

I had the privilege of providing personal one on one care for her until the day she died here at home.  When I was serving as a Pastor, I could make a tiny difference in the lives of many people.  As a full time Caregiver, I could make a huge difference in the life of one person.  By giving me that privilege, Mary Ann made a profound difference in my life — in addition to giving me so many years of her life as my wife, Mother of our children. 

We kept our marriage vows to one another, “in sickness and in health.”  To have had the chance to fulfill that promise would not have been our choice, but having that chance filled our lives with meaning.   We experienced the worst and the best of times.  Sometimes the best was to be found right in the midst of the worst.  It really was an honor and a privilege to care for Mary Ann.  It was a gift to me that she allowed me to do so.

 

September 18, 2010

How would you finish this sentence?

Posted by PeterT under Daily Challenges, Hospice, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
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“If not for me, the world would have missed….”   The Hospice Chaplain began his message with that question during the Memorial Service last Thursday evening led by Midland Hospice, the organization that sponsors the Grief Support Groups I attend.   

It is not unusual for people to be so self-deprecating that they find it hard to presume to suggest they have made a difference in the world.  It seems arrogant to talk as if we are God’s gift to the world.  If we happen to be in the mode of feeling sorry for ourselves, we will claim we have done nothing anyone will miss.  If we have had a critical parent or spouse or close friend, we may have concluded that just as they have said about us, we do not measure up. 

Sometimes it is actually our inflated ego that sabotages our ability to finish that sentence with anything of substance.  What I mean by that is we sometimes demand that for something to qualify as an achievement that would be missed, it has to be something so much better than what the ordinary folks can do that we received accolades for it. 

What ordinary things have you done?  They are likely to be the things that the world would have missed most.  That you have survived what you have been through is a remarkable accomplishment — no matter how it compares to anyone else’s accomplishments.

The Chaplain was very insightful when he followed that question with some clarification.  He pointed out rightly that most of us struggle with memories of things we did not do well, times we were impatient, harsh, unsympathetic, times we did not do what we should have done, had we been better caregivers.  He urged us to set those thoughts aside for the moment, and focus on what we did do for our Loved Ones.

I have admitted here more than once that the most painful memories are memories of just how debilitated Mary Ann was getting and how little I allowed that to enter my awareness.  I was not always as sympathic and understanding of her limitations as I should have been.  This morning, a simple question some neighbors asked when we crossed paths at the Farmer’s Market planted a seed that sprouted twenty or thirty minutes later.  The question was about cooking, did I do the cooking for Mary Ann.  I admitted my limitations in that area, but answered yes.   Later, as I was leaving, my mind wandered back to that conversation.  A silly claim that I had made came to mind, that I made the best peanut butter and jelly toast around.  I remembered toasting the bread to exactly the color that she liked, cutting it into four squares and feeding it to Mary Ann, making sure each bite had some jelly and peanut butter in it.  I often added two slices of crisp bacon, each cut in half so that every quarter of the toast had a half slice of bacon on it.  I had a certain order of squares so that she would not have too much dry toast in any one bite.  I anticipated when she would need a drink.  Thinking about that brought back the painful feelings to a level I had not felt in the last three weeks or so.  It was not that impossibly intense level that that could hit like a brick during the first weeks, but it was painful. 

I remembered how good it felt to be able to feed her in a way that brought her some pleasant moments.  I longed to be able to do that again.   As that pain settled in (it stayed for a while), I realized that feeding her that peanut butter and jelly toast with bacon was something that she might have missed, had I not been caring for her.  Obviously, I can’t know what would have happened if I had not existed — whether someone else would have done it.  That is not the point.  I did do it.  I made a difference in her world, just as she did in mine. 

There are, of course, some obvious ways of finishing a sentence like that.  I suspect our Children and Grandchildren would have missed mine and/or Mary Ann’s presence in the world.  Those are easy answers.  It is a healthy exercise to think about the impact we have had, the ordinary impact, just being a part of people’s lives.  Simply having answered the Call to Live by continuing through each day.  I have spent time in conversation with many suffering from depression over the years.  When someone is depressed, just trying to finish a sentence like this one is more depressing.  The Chaplain made the point that each of us in that room had survived our grief until that moment.  We had survived the death of someone we loved.  Just to have survived what we have been through, whether the loss of a Loved One or the loss of our confidence and sense of self-worth that comes whith depression — just to have survived is an achievement worth adding where the dots are in that incomplete sentence.   

There are so many things that I did not do for Mary Ann or did not do well.  She deserved better.  At the same time, I did make a difference in her life, as she did in mine.  The greatest gift we gave each other was ourselves.  We stayed in relationship with each other.  In doing so we did make a difference.  Each of us would have missed a lifetime of the other’s presence, had we not been there for one another.  As painful as it is sometimes to remember, it is comforting to remember what each of us brought to the other.  That remains.  We both get to keep those memories.

 

September 16, 2010

“But Mary Ann, I’m Doing the Lord’s Work!”

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Relationship Issues, Sources of Strength | Tags: , , , , , , , , |
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Whatever else I did or didn’t do, I knew enough never to say that!  I never said it for one thing, because it would be silly to claim I was doing the Lord’s work if I was not fulfilling my Call as Husband and Father.  Being a Husband and a Father is doing the Lord’s work.  Working for the church is just the way I chose to live out my Vocation, no more or less important than anyone else’s Vocation.  Every Christian is Called to live his/her Christianity in every dimension of their life and work. 

Another reason for not saying those words, “But Mary Ann, I’m Doing the Lord’s Work,” is that, assuming they were spoken to suggest my stuff was more important than her stuff, the Mizel wit would cut me down to size with a sharp blade. There was no room for pretense with Mary Ann.  I was her husband, she was my wife.  My job happened to be to serve as a Pastor of a congregation.  She kept me from becoming self-important.  The result was that I was more genuine in the way I did Ministry.  My relationship with people was more real on account of pretense being an unacceptable option. 

That is a gift Mary Ann gave me that impacted my work.  The battle with Parkinson’s had a powerful impact on the way I did ministry and how that ministry was received.   Certainly, there was an impact on my time and energy.  I had to delegate, accept help, find efficient ways to accomplish the ministry so that the Congregation got from me the job they had Called me to do.  Being up multiple times during the night, pretty much every night, for the last eight or so years in the Ministry, had an impact.  The Leadership of the Congregation insisted on my taking care of myself to keep functioning effectively.  The Staff helped in every way possible.  

One gift was that we had to function as a team, each helping the other be as effective as possible.  Members seemed more willing to take on tasks, realizing that the help was very much needed.  As time went by, the challenge of the Parkinson’s resulted in a structure at work that could remain functional and healthy even when Mary Ann was in the hospital and I needed to be there full time day and night.  That actually turned out to be a strength as we dealt with vacant Staff positions at various times during those years. 

I am inferring from observations mostly and occasional comments, another gift our situation gave to my ministry.  There was an authenticity when I was preaching and doing Pastoral Care that seemed to come from the awareness that we were living through very difficult times.  Whether or not others perceived it, I felt freer to talk more boldly about people dealing with challenges since what I said (at least in my mind) could not be easily dismissed as shallow platitudes.  Even if no one else was aware of it, I felt more deeply than in years past the weight of what message of the day had to say to real life situations. 

The place it seemed to me to make the most difference was in hospital visitations and counseling situations.  Those who were suffering from medical problems seemed to talk with me and listen to me as someone having a common experience with which we were both struggling, both finding strength from our faith.  Again, there was an authenticity in our communication that was rooted in the fact that we were all in the same sort of circumstances.  The words I came to say spoke to me as well as to them.  Those who were struggling with painful relationship issues or bouts of depression, could not easily dismiss my counsel, since it came from personal experience in dealing with issues that could be depressing and destroy a relationship.  It was not easy for people to just feel sorry for themselves in front of me and tell me that I didn’t understand what they were going through. 

Of course, I also learned to be far more understanding when folks were going through tough times struggling to survive.  Having seen the boundaries of my capacity to cope with our situation, I could empathize with those living on the edge.  I knew what it felt like.  I knew what it was like to need help and be forced to accept that I could not make it without reaching out to others, accepting their help. 

Now that the Parkinson’s and its allies have done their worst and taken Mary Ann from life here, from those who knew her and loved her, from our Children and Grandchildren, from me, there is another gift that has come.  It is a tough one to accept, but I have no choice.  I now understand just how hard it is to lose a Spouse after decades of marriage.  I understand what it feels like to have a heart broken by losing the one who filled life with meaning and purpose, the one the Lord called me to love and care for these many years.

I also know more clearly than ever that there is healing and new life for her that is now more than she has ever known before.  I  know, not just intellectually, but experientially that because she has new life, I am free to live again, to start a new life.  I am free to incorporate into my life the impact she has had on me in the 48 years I have loved her, along with the unconditional love of a Lord who refuses to give up on me, plus the impact of so many who have touched my life in the years in the Ministry — I am free to say yes to the Call to Live.   Only a Lord who brought Resurrection out of suffering and death could bring out of twenty-three and a half years of battling a disease, so many good gifts.

 

September 14, 2010

Mary Ann’s Gift to a Congregation

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , |
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The package was pretty ugly — Parkinson’s Disease, but the gift was beautiful.  Actually, God gave the gift.  Actually the gift was already there, Mary Ann’s Parkinson’s provided a tool for opening the package, pulling out the gift and letting people see it. 

Sometimes harsh judgments are made about churches and church folks.  There are the caricatures of people who attend church regularly as hypocrites and self-righteous, harsh, judgmental and unloving people.  Of course all those things are true to a certain extent, just as they are true of the general population, whether they happen to go to church or not. 

What actually has been so in my experience with congregations, ones I have served in forty years of ministry and many I have heard about from fellow clergy is exactly the opposite.  I have seen true community in action in my years in the ministry.  By true community, I mean people who are connected in a way that frees them to express that connection in action — people who help one another. 

Community was expressed in a former congregation by surrounding a handicapped member with support in every way, functioning as family for her.  When the bombing in Oklahoma City took one of the members of that congregation, her husband was surrounded with loving and caring actions.  When the bombing happened, I saw first hand an entire city express community, as crime ceased for a time, people came together to support one another, doing anything and everything they could to help those suffering, to support the ones who were doing the hands on rescue work.

The congregation I served the last twelve and a half years in my role as Pastor of a congregation had always expressed community in one way or another.  People visited and cared for those who were going through difficult times, especially due to health or aging.  The gift that came with Mary Ann’s Parkinson’s was an opportunity, an opportunity to go public with those expressions of community. 

Mary Ann’s circumstances provided some very clearly identifiable needs.  The needs were concrete.  I could not continue to serve as Pastor of the congregation without those needs being filled.  The response was a natural one for people who understood and lived in community with one another, quietly going about the business of supporting one another in times of need.  My vantage point may have skewed my view of reality, but it seemed to me that Mary Ann’s and my needs, so public, and the response to them, helped crystallize the self-image of the congregation.  What had always been so gained a higher profile and became visible.   That visibility became a witness to the poeple in the congregation and others who learned about it. 

I think the truth of the matter is that people in community with one another find much satisfaction in helping each other if they can figure out what to do that will actually help.  People surrounded our household with the basic needs of companionship for Mary Ann with all that demanded in terms of help with personal needs and whatever came up.  There was sometimes food brought over, grocery shopping done when we were homebound or Mary Ann was hospitalized.  There were sometimes basic household needs covered, chores done, ironing done.  Margaret, Carol (single-handedly for over six years), Mary, Edie, Daughter Lisa, all who coordinated  clusters of Volunteers, gave them instructions on what to do, answered their questions.  A free online scheduler just for that purpose helped organize times and tasks.  It is available at no charge to any individual who needs it: www.lotsahelpinghands.com

The specific gift Mary Ann gave the congregation was opening herself to allowing people into her life to help her.  Community can’t be experienced fully without people’s willingness to allow themselves to become vulnerable to others.  There is a risk when allowing people to help.  Will you become indebted to them?  How will you pay them back?  If you don’t pay them back, will they somehow own a little piece of you?  We simply had no choice.  There was so much help that there was no way we could ever repay all the people.  We occasionally made small symbolic efforts and saying thank you.  Mary Ann enjoyed doing an open house every once in a while, Volunteers helping with it.  She sometimes made or designed token gifts intended to say thank you.  There was just no way to do enough.  We simply had to allow the help with no possibility of ever repaying or saying enough thank you’s. 

The good news is that people helped because they chose to do so.  They helped because they have been wired by their Creator to do so.  They helped because there was meaning and satisfaction and fulfillment in doing so.  By helping, they actually had a part in the Pastoral ministry to the congregation.   Because they were doing what they were doing I could do what I was Called to do as my part in the community. 

Mary Ann’s Parkinson’s freed the true community that already existed to float to the surface and become more visible, defining the congregation in its own eyes and the eyes of those who heard about it.   

By making these observations about the gifts that came into our lives and the lives of many others on account of the Parkinson’s, I am in no way lessening the horror of what Mary Ann went through.  We would not wish that struggle on anyone.  It was not a good thing.  It was a very ugly disease that stole from Mary Ann everything she had enjoyed doing with her hands and her sharp, creative mind.  In spite of that, God brought some good gifts to her, to me, to a congregation and to our family.  More about that in later posts.

 

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