September 12, 2010

No More Secrets — Open Door Policy

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , |
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When the Parkinson’s was first diagnosed, Mary Ann insisted on complete secrecy.  No family (even parents and siblings) could know, no friends, certainly no parishioners — only the Kids and I were to privy to the diagnosis.  That insistence continued for five years.  She allowed a couple of exceptions for me so that I would have somewhere to go to process what we were going through.  Actually, I don’t remember if their Mom gave Lisa and Micah permission to share with anyone.  They may comment on that. 

Mary Ann had always been an extremely private person.  She didn’t think her personal life was anyone else’s business.  After she was diagnosed, she did not want people to be looking at her as if there was something wrong with her.  She certainly did not want people feeling sorry for her and treating her as a sick person.  I have shared before how hard that five years was on all of us. 

Finally, the secret could no longer be kept since there were too many outward signs of the disease.  When we moved here in 1996 Mary Ann’s Parkinson’s was public information among the Leadership of the congregation.  The secret was out from the first conversation by phone with the Call Committee.  In fact, by that time, Mary Ann’s Parkinson’s was in the form that I filled out for the file in the District office, the form that was sent to the congregation as soon as my name was put on their list of Candidates. 

It is here that the story of one gift that came on account of the Parkinson’s begins.  Mary Ann received some special attention from a group of ladies in the congregation.  She was welcomed in a way that made her feel accepted and included immediately.  I did not see all the dynamics of that inclusion, but I was thrilled at its effect on Mary Ann.  She quickly developed a group of friends in the congregation.  While my being the Pastor brought us to the place and provided the setting, that group became her very own friends, not acquaintances of the Pastor’s Wife. 

Before going any further, I have to say that Mary Ann had developed connections when we were in the early years in Kansas City.  She often claimed (falsely) that people were friends with her because I was the Pastor.  The truth is, I was the more boring one and she was always the more interesting personality of the two of us.  I am not particularly thrilled with that assessment, but it is just the way it was. 

In the parish here, the Parkinson’s created a need.  The need was for help.  When Margaret began and Carol took over the task of scheduling, the Volunteers began coming.  At first it was an adjustment, especially for Mary Ann, to have people coming into the house and staying with her.  First of all, her combination of strength of will and denial, caused her to resist any admission of the need for people to be there.  She seemed to manage to fall in a way that did not do damage to her, so she was not convinced of the need.  While watching the knives waving this way and that from the dyskinesias when she was preparing food, terror entered the heart of the watcher.  She was convinced that she would not slice herself. 

Since many of the first Volunteers were already friends, she tolerated the lack of privacy surprisingly well.  In fact it shocked me that she did not fight harder against the idea.  As the number of Volunteers expanded, new friendships were added.  Since often there was some need being met in another room when the next Volunteer arrived, the custom was to announce her arrival and just walk in. 

The result was that our house had an open door policy.  It was almost comical some Wednesdays when Bath Aide Zandra was here, Kristie had come to clean, it was crossover time when two Volunteers were here, one arriving and the other getting ready to leave, and the Spiritual Formation Group (four of us) were lingering for a moment of conversation before leaving after our meeting.  Rather than feeling as if folks were intruding into our lives, it was a pleasant gathering of friendly people. 

One gift that came was that Mary Ann opened herself to all sorts of relationships.  She had a wealth of friends and knew that they were her friends, not simply members of the congregation of which I was Pastor.  I cannot know what would have happened without the Parkinson’s, but it is clear that from its presence in our lives, the gift of openness to relationships grew.   

As always, we certainly would not have chosen the mechanism, but there were some consequences of its presence that brought blessing to our lives.

 

August 21, 2010

A Ten Hour Trip in Three Minutes

Posted by PeterT under Daily Challenges, Family, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , |
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Our travels took us first to Greenville, South Carolina when Lisa moved there, then met Denis and they married.  Needless to say, those trips were taken on a plane.  When they moved to Louisville, Kentucky, we could drive there.  It was at least ten hours for us to make the trip, but we could do it.  There was Interstate from within blocks of our house here to within blocks of their house there.  By that time we had dealt with the life-threatening pneumonia after the plane trip to Tucson, so we gave up on traveling by air. 

Then something remarkable happened that shortened the ten hour trip to three minutes.  It went something like this: Denis said to Lisa, “Why don’t we move to Topeka to help out your parents for a couple of years until your Dad retires.”  I don’t know if those were the exact words, but that was the gist of it.  Lisa called.   Mary Ann was ready for them to come.  I wanted them to be sure not to disrupt their lives and careers without thinking it through carefully.  Our goal in raising our children was that they have the best life possible.  They thought about it and did it.  It was their choice to make.  What a gift it was to us. 

Within weeks, Lisa, Denis, Abigail and Ashlyn were in our downstairs, heading out regularly to look at houses.  They found one three minutes away.   Denis looked for work locally, while continuing to work for his employer in Louisville, traveling some, doing much of his work at the computer.   Denis did so well from here in Kansas that his boss wondered if he shouldn’t move here.  The job continued all two years. 

During that time Lisa and the girls came to the house before I left for work two days of the week.  She took over scheduling the weekday Volunteers for the other days.  She and the girls would take Mary Ann to their house until late afternoon when I joined the family for supper at their home.  After supper, I took Mary Ann back to our house, where often there was another Volunteer who had  been scheduled by Mary for the time I was at an evening meeting.  Of course, there were many other times that Mary Ann would stay with Lisa and the girls or they would come to the house.   Between Mary, who scheduled evenings and weekends (weddings, retreats), Edie who scheduled Sunday mornings (after an early shift by a paid home companion from an agency), Jeanne who came on Thursdays, and Lisa dealing with daytimes, I was able to continue to fulfill my responsibilities as the Senior Pastor of a large and very active congregation.  Lisa’s presence in town, with help from Jeanne and Mary, even allowed me to once or twice a year to have a three day overnight retreat at St. Francis of the Woods Spiritual Renewal Center in Northern Oklahoma. 

Son Micah, Becky and Chloe had moved from three hours away to one hour away not many years before this.   He came over, especially when there was a major Saturday commitment that took me from the house.  During those two years, Mary Ann had the joy of all her Children and Grandchildren nearby.  She spent much time with Lisa and the girls because of my work schedule.  Lisa would often include her in craft activities and food preparation.  Even with all the limitations, Mary Ann had a good quality of life for most of her years. 

Needless to say, it was a sad day when around the time of my retirement, Denis, Lisa and the girls moved back to the Louisville.  The agreement at Denis’s work had been for the time away to be two years only.  Denis also has a huge family (he is the youngest of ten children) who are all clustered very near Louisville.   Lisa, Denis and the girls have a wonderful community of support there. 

We returned to making trips to Louisville for as long as we could travel.  After a while the stairs in their house were too much for Mary Ann to handle, so the last time we visited, we stayed in an extended stay motel.  That worked well.  The last trip there was less than a year ago.  I will say more about that and some other travels in the next posts on this blog site.   

 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.

 

August 8, 2010

Mary Ann: The Energizer Bunny!

Posted by PeterT under Daily Challenges, Help from Others, Information on Parkinson's, Life History, Meaningful Caregiving, Uncategorized | Tags: , , , , , , , , , |
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That January, Mary Ann could simply no longer care for herself.  I didn’t know what to do.  I needed to work to support us (60-70 hours per week as a Pastor).  We couldn’t afford that many hours of paid help.  It would cost more than my salary. The options simply weren’t there.

Then Margaret came to the rescue.  Margaret was (still is) the Parish Nurse at the congregation I was then serving.  She just started phoning people and before I knew it, there were Volunteers from the church staying with Mary Ann when I was away from the house at work.

After it became clear that she could not do the scheduling task and still continue her work as Parish Nurse, Carol stepped in.  For over six years, Carol scheduled Volunteers for weekdays while I was at work, evenings while I attended meetings and did Counseling, Friday evenings and Saturdays for weddings and retreats, Sunday mornings (I had paid help for the early morning hours), even emergency Calls when there was a serious illness or a death.  At one point there were at least 65 different Volunteers.  Some days had as many as five different people filling two or three hour slots.  I have never figured out how one person could manage all that.  I have nominated Carol for Sainthood.

By February, we had gotten back to KU Med Center, the Parkinson’s Clinic. They had transitioned to a new Neurologist, Dr. Pahwa.  He was able to put together a new regimen of meds that allowed Mary Ann to return to a significantly higher level of functionality.  The bathroom needs and the falling would still not allow her to stay by herself for any length of time.

After a year or so, we entered the two years from Hell.  Mary Ann had often complained of heartburn, since she was taking so many pills (I think 30-40).  At least that is what I thought.  It has always been hard for me to accept that I didn’t pick up sooner on the possibility that it might have been more than heartburn.

On June 30 of 2003, Mary Ann was admitted to the hospital through Emergency with a case of Congestive Heart Failure that came within a hair’s breadth of putting her on a Ventilator.  It was discovered that she had had a number of silent heart attacks.  Two of the three main arteries on her heart were completely blocked.  The surgeon was able to stent a branch of one of the arteries, but that was all.  She had another MI (heart attack) while in the hospital.

Mary Ann always moved into a hospital psychosis when hospitalized, hallucinations, agitation, inability to sleep, trying to get out of bed, pulling at tubes.  I stayed all night every night since the Parkinson’s meds were so complex, the various shift changes made it necessary for me to track what was going on.  The staff needed my help to manage her reactions, day and night.  I had to be there when the various doctors came to check on her or report the results of the endless tests and procedures.

By the end of those eight days, after an entire night of Mary Ann repeating “help me” over and over again, for the second time in my adult life, I broke down in tears.  Gratefully, Son Micah was there to hold me.  When she was released and came home, it was one of the lowest times in our life together.  Everywhere I turned to come up with a solution to how we could go on came up empty — except for Carol and the Volunteers.  They are the only reason I was able to continue in the ministry and we were able to survive.

Almost exactly one month later, she was back in the hospital with another MI and another unsuccessful attempt and getting through one of the blockages.  It was a shorter stay.  She came home again.

For a while after that she was doing better.  We returned to a reasonable quality of life.  It would take more than a little heart trouble to stop Mary Ann.  After a year and a half we even risked going on a week long trip by plane from Kansas to Tucson, Arizona for a retreat for older adults.  We had decided that we were not going to just sit at home and feel sorry for ourselves.  We chose to live as fully as possible given the circumstances.

I still blame the air quality on the plane.  Mary Ann was fine when we left the Kansas City airport but had some congestion when we arrived in Tucson.  By then we were using a wheelchair most of the time.  We joined in the activities, got to visit a wildlife center outside of Tucson.  As the week wore on, she was having some labored breathing.  It was March 10 of 2005. I called an ambulance to take her to the nearest hospital.  On the way, the dyskinetic movements that come with the Parkinson’s medicine were so bad that the tech in the back with her could not keep an IV in her arm.  Mary Ann was flailing around and almost flying off the gurney.

They sedated her when we got to the Emergency Room.  Then they took an X-ray.  When the ER doctor returned he said that all he could see what white where her lungs were supposed to be.  By that time she was completely unresponsive.  When I asked if I should call our children to fly into Tucson, he said yes.  The ER nurse confirmed that — so I did.  I will never forget the feelings I had as I sat alone in that ER room, knowing no one there, having been told she might not survive the night.  Mary Ann had been taken for some other test.  I am now living what I feared that night.

The Kids came, Lisa with baby Ashlyn in tow.  Mary Ann was so agitated that even with me there, they provided a hospital sitter to be in the room also.  Four days later, Mary Ann and I were on a plane home.  She had bounced back from that flirtation with death.

Within one day of a month later, the Ambulance came to out house in Kansas to take her to the hospital again.  She had had a stroke. It was April 9 of 2005. At first her speech was gone and her right arm was virtually useless.  It was not a bleed or a large clot, but a cluster stroke, plaque from her carotid artery broken into tiny pieces, lodged in a cluster in one part of her brain.  With a few weeks in the hospital, rehab, followed by outpatient therapy, she regained almost everything.  She was left with some spatial issues that reduced the control of her right hand making feeding herself more of an issue.

Mary Ann refused to give up.  We continued to have a reasonably good quality of existence in spite of the limitations.  The Volunteers and Mary Ann’s strength of will, kept our life on course.  Also by that time I had come to know a great deal about the diseases that had assaulted her and the medications used to treat them.  I was able to make helpful recommendations to the doctors and monitor her condition daily.  I think my advocacy for her with the medical professionals helped the quality of her life, until finally in the last weeks, nothing I did could stop the inevitable.

Before that inevitable day two months ago came, there was more of life to be lived.  That will come next.

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.

 

July 22, 2010

Life with Parkinson’s in OKC

Posted by PeterT under Daily Challenges, Information on Parkinson's, Life History, Meaningful Caregiving | Tags: , , , , , , , |
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Mary Ann insisted that her diagnosis remain secret for the first five years in Oklahoma City.  Some of it may have been her unwillingness to accept that it was so.  Certainly, much of it was that she didn’t want people looking at her and treating her as if there was something wrong with her.

It was very difficult to keep that information in since it had such a powerful presence in our lives.  Recently, Daughter Lisa told me how difficult those years were for her, not having permission to talk about it openly.  Mary Ann gave me permission to reveal it to a couple of people so that I would have someone to talk with about its impact on our lives.  If I wanted to add anyone to the list, I asked for permission from Mary Ann before telling him/her.

The secret became especially difficult to keep when the symptoms began to become more visible.  She would not let me tell our best friends from KC with whom we even vacationed at times.  I can remember the evening she gave me permission to tell them.  We were vacationing together in New Braunfels, Texas.  Mary Ann stayed at the condo since she was tired.  The rest of us went to a Beer Garden in nearby Gruene.  We sat together at a table and I finally told them what they already knew, that she was sick.  I told them it was Parkinson’s.

It was helpful to be free to talk about it with folks in the congregation when finally Mary Ann gave permission to reveal what it was.  All of them were loving and caring to us as we tried to deal with it.

Mary Ann had worked with a couple of Temp Agencies when we first arrived.  After about three years of that, one of the companies to which she had been assigned, Jack Cooper Transport, hired her from the Agency.  She worked something short of full time for the next six years there.  The people she worked with became her friends and support group.

Mary Ann could not be involved much in the life of the congregation since work took all the stamina she could muster.  There was certainly no chance to have the energy to do anything in the evenings, and little left on weekends.  I took Fridays off and tried to keep up with the house cleaning.  I was not terribly conscientious at it, but I tried to get the bathrooms and the vacuuming done and the beds changed so that we could spend time on Saturday together.

We made friends as a couple with some of the families in the congregation and visited, ate together, enjoyed each other’s company at various times.  The people in Oklahoma are some of the most gracious folks we have met.  The attitude there seems to be that people are accepted until they prove themselves unacceptable.  Folks don’t wait until people have somehow proven themselves to be worthy before accepting them.

Finding a Neurologist who knew enough about Parkinson’s to deal with the complexities of Mary Ann’s early onset variety was a challenge.  We never found one!  We started with a fellow who was pleasant to talk with.  He prescribed the basic beginning dose of the standard medication, Sinamet.  It helped some, but each time we met with him, we sat in his office across from him as he sat at his desk.  He asked if we thought the dosage should be changed in any way (yes, he asked us).

Immediately after the diagnosis, we began going to the Parkinson’s Symposia done at KU Med Center in Kansas City.  They have a Parkinson’s Clinic with a national reputation.  We would drive up there, at first without telling anyone why we were going to KC.  As a result, we had access to the latest and best information about Parkinson’s treatments.  It seemed clear very quickly, that the Neurologist we were using just did not have more than a very basic understanding of Parkinson’s and the available treatments.

We looked until we found another Neurologist in OKC.  That was our worst experience.  He is the one who came into the exam room without ever looking at either of us.  He sat at a little table just inside the door, looking down at the chart.  When he talked to us, he never looked up.  It was actually very weird.  By this time, Mary Ann had been on the basic med for treating Parkinson’s for a few years.  It worked reasonably well, as is usual in the first stages of Parkinson’s.

The last time we went to him was more than I could tolerate.  He suggested that Mary Ann might not actually have Parkinson’s, but have had a mild stroke impacting the left side of her body.  When I asked why then the Parkinson’s medicine seemed to be controlling the problem, he made a circle around his ear with his finger, indicating that improvement was in her head.  By the way, any Neurologist who knows Parkinson’s at all is aware that one of ways of confirming the diagnosis is to use Sinamet.  If the symptoms improve, it is most likely to be Parkinson’s.  Even I knew that.

By this time, Mary Ann’s symptoms were becoming more obvious.  After about eight years of taking Sinamet, the side effect of dyskinetic movements becomes a problem.  Those movements are the wavy ones that are often visible when Michael J. Fox is in the spotlight.  Mary Ann never had tremors, the fast movements in a hand or fingers.  Tremors are often a symptom of Parkinson’s, but not always.  She did have the dyskinesias that come from many years of using the Sinamet.

One time when she was at work, she just slipped off her desk chair on account of those movements.  She hit her side on the corner of a two drawer file and broke some small ribs.  There was nothing other than pain medication that could be done until they just healed on their own.  Mary Ann’s co-workers at Jack Cooper were caring and supportive, always watching out for her.

After the horrible experience with the last Neurologist, we were at a loss as to what to do.  Somehow, I became aware of an attempt by a hospital in Tulsa to develop a Parkinson’s program.  It was brand new.  A local Neurologist was developing a team approach.  We applied and Mary Ann, of course, qualified.

She was scheduled for three weeks of in-patient care as they would try to come up with a medication regimen that would work for her.  Tulsa is 90 miles from OKC.  I was doing full time ministry, trying to go back and forth.  Mary Ann hated being there, and I hated having her there.  What was especially frustrating was seeing how haphazard the treatment was.  Pills were often not given at the scheduled times. (the doctor’s schedule).  The Staff seemed unaware that the timing of Parkinson’s meds is crucial to their effectiveness.  Having been to enough of the KU Med Center Symposia, I knew that protein in the stomach at the same time the Sinamet  competed with its absorption and reduced its effectiveness.  That meant there was a need for low protein meals early in the day when the Sinamet was taken and the ability to move was most crucial.  I mentioned that the Neurologist in charge of the program.  She did not consider it an issue of any importance.

The medicine regimen that Mary Ann ended up with was a fairly complex combination of regular and time release Sinamet.  A problem was that the time release version of Sinamet exacerbates the side effect of dyskinetic movements.  That was Mary Ann’s most difficult problem.

Mary Ann just could not stand staying there the whole three weeks.  She managed two weeks.  When she returned to OKC, it was apparent that she would not be able to handle returning to work.  She was on temporary disability from her work, but it was at that time that we moved, since I had been called to a congregation here in Kansas.

During the years in OKC, the Parkinson’s grew in its impact on Mary Ann and on our lives.  We never found our way to anyone there who seemed able to handle the complexities of Mary Ann’s early onset variety of Parkinson’s.

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 22, 2010

It’s Just Me and the Ants

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , |
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Lisa and the girls left about an hour ago.  What now?  There are plenty of things that need to be done.  That is not the issue.  There are thank you’s to be written. That will be very therapeutic for me.  The list of minor and major tasks is long.  At the moment I am doing a lot of easy, little things here at the house.

…It is now just me.  Schendel Pest Control Tom just found a huge nest outside the sun room and dispatched the ants.  There are still a few inside the house, but they are feasting on Tero, and if all goes well will be gone soon.

Sun Room contractor Jerry just called to begin work, hopefully, on putting the shade up on the deck.  I guess I am not going to be alone here today after all.  Tom and Jerry will have been over. Who knew?

I am experiencing what I have heard about from others hundreds of times.  It is hard concentrate.  It is hard to muster the stamina to do anything that takes any thought.   Getting out of the house to run errands sounds okay, but there are so many things that need to be done, running errands all day I suspect would get very frustrating.  I would be anxious to get back to the things that need to be done.

By the way, I am not (at least at the moment) whining about my situation.  I am just describing it.  There will, I am sure, be plenty of whining going on soon enough.

There was a large stack of cards in the mail again today, along with a packet from Thrivent (our church sponsored financial organization).  There was in that packet a CD of some songs that actually turned out to be helpful while I opened cards.  This is a time when simple truths, ones with which we get bored in good times or that slide into the back corner of our awareness, become very powerful.

Jerry needed help holding up the other end when he put up the shade on the deck.   That was a great distraction.  He is a talker too.  As soon as the sweat dries, I will begin running some errands.

…The errands included taking a death certificate to the bank.  All that needed to be done was get it into the records there.  I took back to her the tools that Occupational Therapist Karen had given Mary Ann and trained her to use, so that Karen could give them to other patients.  I stopped by the florist, Flowers by Bill, to thank him for doing such a wonderful job of arranging very fresh flowers that have lasted well.  He is the one who would provide much more than $10 worth of flowers when I came by to get them for Mary Ann.  I told him that I may be coming in on occasion to do the same, this time to enjoy myself and then remember.  I dropped glasses off at our eye doctor’s office for the Lion’s Club.  Looking at two of the four pairs was a frightening reminder of Mary Ann’s battle.  They were so scratched from falling on her face that the lenses were no longer usable.  We had had to replace them.

I guess I said it last night, but today it has been painfully clear that remembering her with so many abilities stolen from her is almost too much to bear.  When I think back to the challenges I had as a Caregiver, I can certainly remember the times I reached the limit of my ability to cope, but I remember with no feelings of distress. I don’t feel in any way sorry that I had to do the things that were required.  I would do it again without hesitation.  I have been trying to keep them out of my mind, the images of her sitting in that chair unable to do almost anything, trying to get up, falling, struggling to turn in bed, hating when I had to feed her.  My emotions are too raw to continue this train of thought.

The shade is now up on the back deck.  If the sun is out in the morning, the Spiritual Formation Group will get to try it out.  If rain comes, we can now sit inside the house in full view of the waterfall, listening to the rain on the speaker that brings in the outdoor sounds.  Since I am now alone here, there is no one to disturb.  Damn, I hate this!

Again, I am all right, given the circumstances.  It is very appropriate that I hate this and that my emotions are sometimes raw.  I would be in trouble if I didn’t recognize my feelings and allow them to see the light of day.  It is from that process that new life begins to emerge.  I also have moments of feeling the freedom that I have now that there are no longer the constant demands.  I am grateful that Mary Ann is whole again.  I would not want her back just so that I could feel better.  I just miss her.

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 22, 2010

Break In Next Door

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , , , , , , |
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Someone came to the door yesterday afternoon asking if I knew where the next door neighbors had gone on their trip.  I didn’t know they were gone.  Then he explained what he had just found.  The back door was standing open and there were a dozen or so beer cans on the back patio.  The cans were unopened.

He explained that he had painted the cement patio on Friday and was checking to be sure that it was dry and to see if it needed a second coat.  The neighbors had been on a short trip to Texas.  Just days before their sump pump had stopped workings during a heavy rain storm.  Their basement was flooded.  For three days the cleaners were working, even one day while they were gone.

Today I found out that the thieves took the cash and jewelry.  They probably left in a hurry when the case of beer they decided to take apparently broke open on the patio as they were leaving.  The patio is no more than 25 feet from my bedroom window.  I heard nothing.  It is certainly unnerving.

It was death certificate day.  I picked them up at the funeral home.  We hardly need a piece of paper with a County Seal on it to tell us what has happened.  They will now be used to trigger a variety of transactions, most of which have no tangible impact other than keeping records straight on some computers somewhere.  There was not much available in the way of insurance since she was uninsurable due to the Parkinson’s Diagnosis twenty three years ago.  All the follow up tasks after a death at least have the side effect of keeping a person busy.

Today’s outing included taking Mary Ann’s clothing to the Rescue Mission thrift store. It needed to be done, but it was hard to do.  There was a sinking feeling as we helped unload them.  Other than a number of her well-worn favorites, the cookbooks went to the Friends of the Library to be sold in the annual book sale.  Mary Ann loved the library.  One of the professions that would have been satisfying to her was Librarian.  She loved old book stores, especially one in the Brookside area of Kansas City, Missouri.

On the way, I picked up from the repair shop the watch that my Mom had taken me out to buy near the end of my Senior Year in high school.   It is a Girard Perregaux for which she paid $85 in 1961.  The jeweler said that if a comparable could be found now it would be closer to$1500. It has a self-winding weight in it.  Still works. I don’t really care about the value.  It is not for sale.  It is for Son Micah to have.  I wear the gold watch my Dad received many decades ago when he retired.  It actually is of comparable value.  I guess old can be good sometimes.  That is good to hear.

Talking about “old,” I am now in contact with a classmate from the Second Grade, Miss Miller’s class.  That was a memorable year.  I got sick after eating a piece of peach pie.  Before it was over, my Dad plunked me down on the examination table at the doctor’s office and declared that I had appendicitis.  Dad had lost a 5 year old son to peritonitis on Christmas Eve, and almost lost another son when his appendix burst on the operating table.   He was not about to lose another son.  (The very oldest boy their first child had died shortly after birth.)  Sure enough, I ended up on the operating table having my inflamed appendix removed later that same day.

While in the hospital recuperating, it was discovered that I had Rheumatic Fever.  I missed the second half of the Second Grade year (four months).  Miss Miller spent the summer going over the school work I had missed so that I could go on to the next grade.  That diagnosis was a dominant part of my life until I graduated from high school.

On the way back from our errands, we made the promised stop at G’s for some frozen custard in memory of Grandma.  Not only were the treats as good as expected, one of my favorite young people from the congregation dished it up for us.  She is actually sort of annoying, she is a very good athlete, very smart, very pretty but not snooty about it, committed to helping others and making a difference for good, and she is a hopeless smart-aleck — all of that and sweet and caring too.  Talk about annoying.  She even admitted to reading this blog sometimes.  You know who you are!  Even after I became a Geezer I found myself enjoying the bits of contact I had with Youth in the congregation.  I spent the first 18 years of my ministry in service especially to Youth.

Someone just moved in two houses away.  She came over to introduce herself to a couple of us talking outside.  Soon there were four of us, two who had lost spouses two years ago.  As we were talking I soon realized that for the last many years, I would not have been able to stay and talk, but would have rushed into the house to check on Mary Ann.  It will be hard to get used to this new reality.

Today we stopped by church to get the list of gifts given to Faith in memory of Mary Ann.  I was surprised at how many gifts had come in.  I have started thinking about how what comes in should be used.  It would please Mary Ann very much to be able to provide that tangible evidence of appreciation of all the years of caring for her by so many Volunteers from Faith.

Early tomorrow is the time that Lisa and the girls leave on their way back home to Kentucky.  It is hard to imagine getting through these events without Lisa and Micah’s help and support.  Like it or not, tomorrow will be the first day by myself in the house.  It is a new reality — can’t go back.  Right now I am running on adrenalin. The crash has to come.  When it does, I will get through it.  The two who lost their spouses two years ago were emphatic about what is the hardest thing, the loneliness. No one can fix that, even by trying to keep the surviving spouse busy.  We just have to deal with it and survive it.

For now, the odiferous ants have arrived.  It is an annual invasion.  The Tero is out and they are gathering, eating it and, hopefully, taking it to the nest to kill more. Pest Controller Tom will be by tomorrow to do some more serious work on them.  Hopefully they will soon leave the premises. I am certainly not interested in their company, even if I do get lonely.

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, 2010

Quilty Jacket Makes Heart Hurt

Posted by PeterT under Daily Challenges, Family, Help from Others, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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I realize that Quilty is not a word, but in our house it is.  I suppose it should be referred to as a quilted jacket.  We called it the Quilty Jacket.  She wore it as often as the weather would allow in the last few years.  Then there are her Poo pants — as in Winnie, not poop.  They are pajama bottoms so worn, with numerous holes that one good tug would probably pull them apart in any number of places.

When I pulled the jacket out of the closet, I knew I could not part with it.  I can’t count how many times I helped her on with that jacket as we headed out the door.  The rest of the clothing is in plastic bags destined for the thrift store or the Rescue Mission.  It has been a very emotional day, at least on the inside.  Once, I sighed loudly while standing in an almost empty closet and from the bedroom came, “Are you okay?”  This had to be hard on Daughter Lisa too.  I would not have wanted to do it without her.

The challenge was not just the emotional part of it but the challenge of deciding what to do with what.  As others who have been in my position will confirm, decisions are very difficult to make.  The simplest task can seem overwhelming.

There were dresser drawers to clean out.  We finally found her underwear!  The funeral home asked for undergarments with the dress we were to bring over for them as they prepared her.  In her sock and underclothes drawer, we finally found a pair that she had never worn nor would she have done so.  I vaguely remembered getting them out of that drawer and putting them away when she switched to disposables a couple of years ago.  She had a huge number of socks in the drawer, resulting in the need for room.  Her socks were a signature item.  There were varied colors and themes, holiday socks, seasonal socks, polka-dots, animals.  We found the underwear in a plastic bag hanging from a hanger buried in between other hanging clothing.

I knew it would be and it is very hard to look in that closet.  I have spread out the few things I have on both sides to create the illusion that it is full.  It is not working. Actually, I decided to get rid of all things in the closet that no longer fit or are too badly worn to wear any longer.  Getting rid of my clothes was easy.  All I had to do was look at the neck size on the shirts to determine that I could no longer wear them.  Who knew that a neck could grow in later years.  It is an odd genetic quirk, having nothing to do with eating habits and the lack of exercise.  The waists on pairs of pants had shrunk.  Closets shrink clothes.  It is a known fact.  It is sort of like Radon, only not dangerous to people — unless, of course, you try too hard to button one of the shirts and strangle yourself.

I suspect that Monday some time will be the first encounter with the house all to myself, the beginning of whatever will come in life next.  The Kids are doing exactly what is needed and when.  They cannot do for me what I need to do to make it through this.  I cannot do for them what they need to do to get through this.  We can love and support one another, doing what is in our power to do.

I will get out the quilty jacket and remember and, I suspect, do some crying.  Tears do not come easily to me, but it will be important to allow that release when the need comes.  I have decided to get the box of letters Mary Ann saved from forty-eight years ago.  I have not looked at them since I wrote them.  I am sure I will be embarrassed by them.  I was so much in love with her that, if I remember correctly, I even wrote sappy poetry on occasion.  I am surprised she didn’t run away screaming after reading them.

I made an observation to Lisa today contrasting the time of caring for Mary Ann, especially the last months, with the time we are in now.  Oddly, it seems harder to think now about what we went through than it was to go through it.  Even when we were in the thick of the worst of it, I just had to do stuff.  Doing things gave me the feeling that I could make a difference of some sort.  Even if what I did seemed to have little effect, at least I had something I could do.  Now, I have the images of what we went through.  They seem more horrifying when thinking about them than they seemed when I was doing them.  When I was doing stuff, it was certainly hard, sometimes very messy, but I was just doing whatever needed to be done.

Grieving is hard work, harder than caregiving.  There is nothing more I can do for her.  I can only be sad for myself that she is not here.  I certainly do not need to be sad for her now that she is free from the illness.  I can hurt for what she went through, but I cannot change it.  My job now is to figure out what I can do.  I can live the life that I am being given.  I can make plans and do things that will honor her memory, care for my family, and become the most fulfilled and healthy person I can be with God’s help and the resources available to me.  I have absolutely no idea what those plans will emerge and where they will take me.  Whatever they are, they will have to take into account a household income that was diminished by about 40% when I retired, and another 20% now.  With a little creativity and a willingness to live simply, the plans will emerge.

I continue to welcome suggestions for a new blog address that will reflect what my life is about as the next months and years unfold.

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, 2010

It wasn’t her and I’m glad.

Posted by PeterT under Family, Help from Others, Meaningful Caregiving, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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I had my own little package of Kleenexes in my pocket; there were plenty around the room.  We didn’t need them.  They had done a nice job of fixing her up, but her face did not really look like her.  I was pleased.  We had all been there when she left, so the private viewing at the funeral home only confirmed that she was already gone.

We are not done with the tears — by no means is that part of this over.  The tears will come tomorrow when we gather to confront the impact of her loss and at the same time celebrate what in our Spiritual Tradition (Christian of the Lutheran variety) we believe to be a victory.  We understand death to be a real and painful loss for us and a profound victory over death.  The Parkinson’s and Parkinson’s Dementia have done their worst and lost the war.  We still have to work through all the grief that comes with such a loss, just not complicated by a sense of defeat and concern for the one who has died. My mantra has been, “She is fine. We are not.”

This afternoon, there was a time when all the rest of the family was away from the house when I walked in.  As far as I know, except for two or three times when I stopped by to pick something up while she was at her Tuesday Morning Bible Study, that is the first time in the last two years I have walked into the house without Mary Ann being here.  Actually, in the last eight or ten years, I don’t remember that happening for more than a moment to pick up something at the house while she was with someone else in another place. It struck me pretty powerfully.  It was not long before some of the family returned, but it was long enough to determine that I don’t like it.  Have I mentioned before that I don’t like this?

There is nothing anyone else can do about it.  The last thing I want is for people to try to insulate me from the reality of what is going on.  I need to experience it and get used to it.  Any who read this who happen to have lost someone and returned home to live in an empty house understand full well that we have to learn how to accept and come to terms with that new reality.

Tonight we spent over two hours greeting people who came by the funeral home to show their support for our family.  It was pretty much hugs all around.  There were many words of comfort.  There were many who offered to help in any way they could, inviting me to call or come by, threatening to pester me with their care.  They actually meant it.  I know these people.  They meant it.   For a while, I will need to hang back and get my bearings, but it is nice to know that to the degree I am willing to be assertive, I will not need to stay home alone unless I want to.  I like solitude, but I will need to find a balance between solitude and community to remain healthy.

I now know why when talking with people who have lost a spouse sometimes they get a catch in their throat when they talk about the last moments of their Loved One’s life if they were there — even if the death came years earlier.  Images of those last moments elicit great pangs of pain.  I doubt that the capacity to feel those pangs will leave very soon if ever.  I cherish those moments only to confirm for me that it is good that she let go, that she is no longer enduring the indignity of those last hours.  It frees me not to fight the acceptance, somehow wishing her back here.

We are all very tired now. It is time to try to get some rest.  I slept better last night — a very good thing.  Tomorrow will be a day to begin the healing in earnest.

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 6, 2010

Denial and Funeral Planning Don’t Mix Well

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , |
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What will she wear, what songs will be sung, what passages read.  We talked about some of those things years ago when we filled out forms for a Pre-need plan at the local funeral home.  The major decisions are already made.

I have to admit that it is painful even to talk about such things.  It was fine to do so many years ago — not now.  I am refusing to allow it to sink in and touch my gut.  The pain is there, but it is an aching now.  I have tasted it enough to know that the pain will sharpen and overwhelm when it breaks open.  Certainly I will survive as have tens of millions before me.

Friends Mike and Judy came over to spend time with us today.  As always it was a good and meaningful time.  Mary Ann connected with their presence and appreciated it.  Since Mike is the Pastor who will preach at the funeral when it comes, we needed to talk some about that.

Later, Pastor Jim, who followed me as Senior Pastor of the congregation I served for a dozen years, came over to celebrate Holy Communion with us.  There were enough of us to feel like a congregation.  Pastor Jim provided a meaningful ministry through a service of Scripture, prayer and song.  With three Pastors, two Spouses of Pastors and one Daughter of a Pastor, we surprised Jim by knowing the words to the songs (multiple stanzas) by heart.  He didn’t have to sing solo.  We were a choir.

One of the songs we sang is “Beautiful Savior.”  Both Mary Ann and I grew up in the same congregation in Aurora, Illinois.  Every Sunday worship through all the years we were growing up ended with “Beautiful Savior.”  As we gathered around Mary Ann’s bed and worshiped, sang and shared the bread and wine of Holy Communion, there was a peace about what is happening.  Mary Ann was a part of it even if she was not able to sing out loud with us.

With that said, as Son Micah commented later when he arrived, “this is hard.”  It hurts.  It just hurts.

Mary Ann seemed to have a comfortable day.  Last night, I was up a few times to listen for her breathing.  I tried to move her a little to minimize the pressure sore problem.  This morning when Lisa and I changed her, she did not show much evidence of the first stage of pressure sores — just one red spot on her ankle.  It was a relief to me that she seemed to fare well last night.  She does not move at all other than a foot moving a bit once in a while.  That is a formula for bedsores.

One happy surprise was that while Lisa and I were rolling Mary Ann this way and that to change her and check her, it just caught our funny bone.  We started laughing and so did Mary Ann.  It was not audible, but had it been, it would have been a belly laugh.

Lisa headed off for church and a local Art Fair.  I read a bit, then started a new book, titled Broken Open, by Elizabeth Lesser.  It is subtitled “How difficult Times Can Help Us Grow.”  How is that for timely.  It was recommended by the online Lewy Body Dementia Spouses group.

I decided to move into the bedroom to read, just so that I could be with Mary Ann.  It was a pleasant experience.  She seemed comfortable.  I asked how she was doing and she responded audibly that she was okay.  We just had some quiet interaction.  I gave her some water.   I realized just how wonderful it is to be able to spend this time in our lives together at home.

Later in the day, Son-in-Law Denis, arrived to provide Lisa with support and help with the girls.  Denis and the girls will be going back to Louisville on Tuesday.  Son, Micah and Granddaughter Chloe arrived at about the same time as Denis.  This was around the time Mike, Judy and Pastor Jim left.

Lisa and I changed Mary Ann again, examined her for red spots and turned her.  It was disappointing to see some red areas, indicating the potential of pressure sores beginning.  I plan to phone the Hospice Nurse tomorrow about the possibility of a hospital bed with the self adjusting air mattress on it to help avoid the worsening of those spots.

One annoying element in the day was the waterfall simply stopping.  It just stopped.  No one did anything to it.  It just stopped.  I was able to get hold of Brad (through his wife since they were driving) who promised to come after his work tomorrow afternoon to work on it.  Brad installed the pondless waterfall.  I certainly realize just how important a role that addition to our home is now that it is not working.  We built the sun room so that we could see the waterfall!

While Mary Ann is, of course, very vulnerable, and anything could happen at any time, she still seems fairly strong.   She ate a small dish of ice cream this afternoon while lying in bed. The Orthostatic hypotension has been so bad that it is pretty much impossible to sit her up for more that a moment.  Her blood pressure drops and so does she.

We continue to take things as they come, grateful for what we have, hoping for a peaceful release when the time comes.

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 5, 2010

Heart Pain Returns, Oxygen-Morphine Help

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , , , , , |
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The oxygen is now running.  It took the oxygen and only one very small dose of Morphine to relieve the heart pain this morning.  Since then Mary Ann has been in bed 100% of th time.  She did not want to sit up any of the times we asked her today. She seldom moves at all, but just lies still, with her eyes open most of the time.

Daughter Lisa and I changed her while she remained lying in bed.  At this point it is not so much how difficult it is to help her in the bathroom but how hard it is on her for us to drag her around that has led us to that approach.  Each thing in its time.  We now have briefs that tape on the sides.

Mary Ann did take some sips of water at various times.  Earlier today, she ate a single serving container of tapioca.  That has been the sum and substance of her nourishment today.

Words are few and far between and barely audible when they come.  We have given up trying to give her any medicine.  She just can’t/won’t take it.

Daughter Lisa was due to leave tomorrow.  She has decided to stay longer.  Our Son-in-Law Denis will be arriving tomorrow evening.  He will stay a day and then take the girls with him back to Louisville, KY.  Gratefully, he has a huge, very close family there, with lots of Sisters and Nieces waiting in line to help with the girls while he is at work.

Needless to say, I am relieved that she will be here at least for a while as this new reality sets in.  Lisa has been a Certified Nurses’ Assistant [CNA] and later an Administrator of a large multi-level Senior Care complex.  She is checking carefully for any red spots that could develop into pressure sores, making sure her Mom is shifted regularly.

Son Micah opted to come for the day today. He dropped out of a BBQ contest in which he was enrolled to spend the day here.  This is hard on both of the kids.  We are all helpless to do anything about this, so we just hang out together, staying close to Mary Ann.  This could go on for some weeks.  The kids will have the challenge of determining when to be here and when to be taking care of their primary responsibility to their respective families (who are wonderful and understanding).

I was planning on attending a wedding this evening and offering the mealtime prayer at the reception.  In fact, that was one of the reasons Daughter Lisa had planned on returning home on Sunday rather than Saturday, so that she could stay with her Mom, allowing me to be away from the house for the wedding.  When all those plans were made, none of us had a clue about what would be happening.

We  have seen a Guiding Hand in the way things have been playing out.  Mary Ann’s decline came on suddenly only days before Lisa’s scheduled visit.  The girls were scheduled for a sleepover with friends, so they were not here last night to be disturbed by the Hospice Nurse and the oxygen delivery.  When there are huge things that are out of control, it is not unusual to notice little gifts that come along the way.  They are signs that we are not alone in this journey.

Tonight’s wedding was the wedding of Christine and James.  Chrissy will soon be an ordained Pastor.  I have enjoyed watching her grow in her commitment to that service.  On occasion when she was in town, as she began and continued her training, we would talk over coffee.  Those conversations always stretched me intellectually and Spiritually.  She has been in Africa a couple of times trying to make a difference for good.  She has a view of humanity that is not limited by national boundaries or ethnicity.

I didn’t like missing the wedding, but, just as I mentioned in an earlier post when I had to miss Katie and Jacob’s wedding, while they spoke their vows I was doing what they were promising.

Time for some rest.

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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