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: , , , , , , , , , |
[2] Comments 

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 16, 2010

Principal Murdered — Parkinson’s Diagnosed

Posted by PeterT under Daily Challenges, Family, Help from Others, Relationship Issues | Tags: , , , , , |
[5] Comments 

Not one, but two murders in this post — but let me begin with the Call to the church in the Oklahoma City area.  The Call came a while before Christmas.  I asked for extra time so that I could consider it without Christmas looming.  There is no time to think when things are coming at such a frenetic pace during those weeks.

Even weighing the strong connection to the KC area and love for the people, it was time to move to a full Pastoral Ministry.  Lisa was a Senior in high school at the Lutheran High, Micah was in the 8th Grade at St. Peter’s Catholic school.  I could not take them out of school mid-year.

I accepted the Call and headed for Oklahoma City in February.  Mary Ann stayed in KC so that the Kids could finish at their respective schools.  Next to this last month, that was the most difficult five months in my life, and, I think, Mary Ann and the kids would say the same.

My last Sunday was January 18, 1987.  The Sunday happened to be a rare convergence of dated festivals and a Sunday.  It was the day designated as the Confession of St. Peter. I preached that day.  There was a farewell dinner scheduled shortly before that.  There were over 200 who indicated they would be there.  One of the worst snowstorms in the fifteen years hit that evening.  Almost 200 people came out for the farewell.

Leaving a congregation is excruciatingly painful.  I didn’t realize just how painful it would be.  I seem to be pretty naive when it comes to anticipating the intensity of pain.  I seem to be using the word “pain” an awful lot in this post, and in recent weeks.  What compouned the pain is that I made the choice to leave.  I have never doubted that it was the right choice, but one with consequences that are not all pleasant.

I lived with a family that became my family during that time.  John and Sherrie were truly brother and sister in Christ to me.  They are/were (Sherrie died later in my years there) the most Spiritual people I have ever known.  They lived and breathed the love of the Lord without ever presenting a hint of “holier than thou.”  They were warm and accepting to me.  They understood how hard the transition was for me, and they knew they could not do anything about that.

It was during that time that I discovered must how much I loved Mary Ann, Lisa and Micah.  One weekend, they flew to OKC for a visit.  I can still remember vividly standing in the airport by some chairs in a waiting area, watching the plane they were on take off to head back to KC.  I had then the same feeling I have had in my gut this month.  The thought of the possibility of losing them was intolerable.

A few weeks before the decision was made and I left for OKC, Lisa was on a trip to Florida, spending time with my Sister and Brother-in-Law at their condominium right on the beach on the Gulf side.  She had spent the last three and a half years with a group at the Lutheran High in Kansas City.  That group were the sort of friends who went out together in a cluster, enjoying each other’s company — all good kids.  At that time, her best friend was the Principal’s Daughter.  He had become a sort of extra Dad to Lisa while she was going to school there.

It happened while Lisa was in Florida.  Principal George was stabbed to death just outside the doors of the school.  Lisa came back to be with his Daughter, her best friend, their friends and classmates so that she could be a part of the community as together they dealt with the tragedy.  That story is more complex than appropriate for public sharing.  Lot’s of questions remain.

Then after I moved to Oklahoma City, separated from family, feeling very alone, in spite of the wonderful family with whom I was staying, it happened again.  I had bought an alarm clock from Skaggs, a Walgreen’s/CVS sort of place, just a few blocks from the church.  It was February 7.  I would be preaching my first sermon there the next day, February 8.

When I got home, I discovered that the alarm clock was faulty.  I went back to the Skaggs to return it.  As I stood at the counter just inside the doors to the store talking with the clerk, I heard a strange sound.  The doors opened and someone ran in right in front of me and hid behind the counter.  I smelled the gunpowder.  An estranged husband had just shot in the face his ex-wife right outside those doors.

I walked by to get to my car as she was dying in the arms of an EMT in the parking lot.  The estranged Husband was found some time later at a nearby lake, having taken his own life.

That was the beginning of my ministry in the Oklahoma City area.  I wondered what I had gotten myself into.

Lisa was working at a Dinner Playhouse in the Waldo area in Kansas City as her part time job while going to school.  She will have to correct my remembering about the cut.  I think it was a broken plate that caused the cut on her hand.  She had to go to the Emergency Room to get a number of stitches.  It was difficult for Lisa and hard on Mary Ann who had to deal with it by herself, while I was in OKC trying to focus on my ministry there.

Mary Ann had some tightness and pain in her left shoulder the fall before this.  It moved down her left arm to her hand.  The tests began.  One of them would be outlawed were it used as an interrogation tool.  It is called an EMG [Electromyography].  At that time (maybe still) there was a needle (or needles) stuck in her arm with electrical current going through them, testing the nerve activity.  She described it as torture.

There were other tests, all that came back negative.  She also was having some balance issues.  It was by a process of elimination that a clinical diagnosis was made.  There is no test that would give a definitive diagnosis.

I was in Oklahoma City, she was in Kansas City.  She phoned me.  The diagnosis was Parkinson’s Disease.  The vision of the old fellow shuffling along in the hallway outside my basement office years before when on my Vicarage (Internship) with a handkerchief in one hand catching the drool — that vision popped into my mind.  I never told Mary Ann about that vision.  Mary Ann needed me to be with her.  I needed to be with her.  The Kids needed for me to be there.  I was not.

This has been a difficult post to write.  Any one of those events would have been enough to make the transition very tough.  All of them together made it almost impossible to bear. I remember my feelings all to well as I was helpless to comfort the people I loved most.

All the while this was going on, I was in the midst of an exciting new beginning at a place filled with some of the most nurturing and affirming people I have ever known.  Everyone should have a chance to live in the heart of Oklahoma.  It is one of the best kept secrets in the nation.

Next will come the ministry at the church in the OKC area and our lives there.  I need a break for a post or two or three before the tragic event in Oklahoma City that had direct impact on our little congregation.  Barry Switzer comes first.  Google him if you don’t already know who he is.

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 2, 2010

Quilters Tell Racy Jokes

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Relationship Issues, Therapeutic Activities | Tags: , , , , , , |
1 Comment 

They laughed and laughed, and then they laughed some more.  The worst one of them was 94 years old.  She told the raciest jokes.  I loved going in there to talk with them.  They were just a couple of doors away from my “office” which was some sort of storage room in the basement of the church.  We used the quilt they gave us when we left until it was worn through and in tatters.  Mary Ann salvaged parts of it and made a vest, a number of place mats and lots of Christmas tree ornaments in the shape of little stockings.  When we cleaned out the closet ten days ago, we found a piece of it in a plastic bag hanging from a hanger.

My salary that year (1967-8) was $250 per month with a $25 auto allowance.  We managed to live on that and save Mary Ann’s entire salary at the bank for the last year of school (1968-9).

We, of course, immediately located the best ice cream place in town, Atz’s.  Actually, I had already discovered it a couple of years earlier when I attended Concordia Senior College there before entering the Seminary.  I remember the Sundae having three scoops of chocolate mint chip ice cream, with lava flows of hot fudge running down each scoop, heaped on top with nuts, whipped cream and a cherry.  I remember it being called a turtle sundae.  I wish Mary Ann was still here to help me remember that accurately.  Suffice it to say, we made very regular trips to Atz’s.

The Saturday before my very first time in public, leading worship, Mary Ann gave me a hair cut so that I would make a good first impression.  I am not sure what caused it to happen, but her hand slipped or I moved my head.  The electric clippers cut a swath from my temple to my ear, down to the skin.  I had a lot of hair, so the contrasting pink skin on the side of my head stood out in comparison to the dark, thick hair.  The solution?? An eyebrow pencil, of course.  She drew in the hair that was missing.  That worked when my face was turned to the side, but the notch was clear when looking at my face from straight on.

My first impression became irrelevant since the Pastor I was serving went into the hospital for tests the following Tuesday and remained there for a month.  I preached, made 75 hospital calls, attended all the meetings, ministered to the dying, taught classes.  In fact, I remember very clearly how irritated I was when he returned and took over my congregation.  It was a wonderful baptism of fire.  I had no time to be scared.  I just had to do whatever needed to be done.

The Vicarage (Internship) from hell part is harder to explain.  The Pastor was obsessive compulsive about record keeping and monthly reporting to the Elders, down to how many pieces of incoming mail and outgoing mail we processed and how many incoming and outgoing phone calls we made.  The Pastor was hopelessly racist and talked often in ways that were intolerable.  By the way, the grade he would give me counted for twelve hours of credit and would make or break the option of graduating.  He admitted that the congregation didn’t like him.  I actually provided a sort of therapeutic setting for him when we met to talk.  His approach to ministry seemed completely empty of what I understood Christianity to be about.  In fact, my experience there convinced me that it would be a waste of time to serve a congregation since there was no evidence that the message we were about was expressed in any way that I could see there. That is the part that ended up impacting Mary Ann and me later.

That was a year when Star Trek hit the airwaves.  Not only did I get caught up in it, but another Vicar (Intern) assigned to Ft. Wayne, Lyle, did too.  Mary Ann just laughed at us as we sat at the kitchen table and meticulously glued together our respective models of the Enterprise.

One of my worst moments came that year.  It only happened once, but it happened.  A student from the Senior College who played the organ for us that year came over.  We splurged and ate out.  There was a Manhattan before dinner, wine with dinner, a Liqueur after dinner.  Then after taking Mary Ann home, Paul wanted to take me to a favorite bar to have some sort of Martini made with a chocolate liqueur, I think.  Then he bought me a Rusty Nail.  My taste buds were so numb, I drank it down like a soft drink.  When we got home, I remember needing to stay very close to the wall as I walked in.  We have one of the best photographs I have ever taken of Paul sitting on the couch next to Mary Ann.  I have absolutely no memory of taking that picture.  I do remember the next few hours hugging a large white porcelain repository into which large quantities of the contents of my stomach were deposited — seemingly much more than I had consumed.  Did I mention that Mary Ann’s Mother was visiting us at that time?  I found out some time, that since I was camping out next to that porcelain receptacle with the door to the bathroom locked, she had to pee in a tin can.  We are none of us perfect!!

That Christmas we were not going to get a tree, but finally, we just had to get one.  We found one for 50 cents that we put on the top of a round book shelf that was Mary Ann’s table sitting next to her until days before the end when she could no longer sit up.  That tree helped establish our tradition of finding the most pitiful tree we could get and decorating it for Christmas (a Charlie Brown Tree).  Our kids gave us much grief over the years at our choice of Christmas Trees.

That is the year we got to know Roger and Jan.  Roger was another Vicar assigned to a church in Ft. Wayne.  They ended up the next year becoming Lisa’s Godparents. Roger and Jan loved dogs, especially Poodles.   There little Poodle, Happy, gave birth to a litter of pups, all who were registered and soon had their papers.  Mary Ann fell in love with one of the little puppies.  We named her MAT’s Happy Suzette. She was a ball of fur with stubby little legs who became the grumpiest Poodle on the planet.  She will be a central character in a post to come about the birth of our first child, Lisa.

One ironic note on the congregation I served from July 1967 to June 1968.  There was an old fellow, Ralph, who came around often.  I got to know him well.  He was great at dart ball (underhanded darts played competitively between church men’s groups).  Ralph had Parkinson’s Disease.  His huge lower lip hung down so that his gums showed and the drool ran and his dentures rattled.  On that account he could not talk very clearly.  He shuffled along and came by often.  I was never unkind to him.  We got along well, but I was grossed out by how he looked.  When I got the phone call that Mary Ann had been diagnosed with Parkinson’s, the vision of Ralph came immediately to mind.  In all her years with Parkinson’s, Mary Ann always remained pretty.  I found her as desirable at the end as I found her at the beginning of our relationship.  The soft kisses that we savored when standing in front of the fridge only a few weeks ago were as sweet as any we shared in all our years.  I miss her terribly.

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 26, 2010

“Please Pass the Butter”

Posted by PeterT under Family, Relationship Issues | Tags: , , , , |
1 Comment 

Those were dangerous words to say at the dinner table in Mary Ann’s family.  They were especially dangerous when spoken by the new boyfriend.  Mary Ann had three older brothers.  All at least a head taller than me.

Gratefully, Mary Ann had warned me about the family table.  I knew that if I put my hand out to receive the butter in the way one would normally do that, the butter would end up stuck on my thumb.  Having been warned, I passed that test with flying colors.  Then, you can guess what happened when I asked to have the rolls passed.  At that time, my reflexes were still good enough that I snatched it out of the air before it sailed by my ear.

I don’t think the boys were there at my very first meal with the family.  God is good.  It would have been an even more painful memory.  There was a plate of breaded beef cutlets.  By the way, at Mary Ann’s house, there was just enough food for each person to have one piece of whatever was prepared.  It is no wonder that as my parents observed, she ate like a bird.  She would just stop when she had all she wanted.  The custom at our house was for everyone to eat as much as they possibly could.  The person who ate the most was the winner.  Anyway, there were just enough cutlets for each person to have one.  Mary Ann held the plate while I put my fork in one of the cutlets.  Again, this was my very first meal with the family at her house.  I poked the cutlet and it took flight, landing a couple of feet away on the floor next to Mary Ann’s chair.

No one said anything.  Mary Ann reached down, got it off the floor and put it on my plate.  There seemed to be a quiet sort of snorting coming from somewhere.  A few moments later, her Mom got up from the table, went into the kitchen, and practically burst she was laughing so hard — apparently tears were even running down her cheeks.  That was my initiation into Mary Ann’s family.

Soon after I began dating Mary Ann, I was dubbed “Rabbi” by her brothers.  They were all very entertaining.  I certainly enjoyed them.  One of them made clear to me one day when we were off by ourselves that I had better not hurt his sister.  There is some irony to that statement.  I will decide later if I will explain why.

Her Dad and Mom seemed to be okay with my dating Mary Ann (after we got past the former engagement issue).  Her Dad was a leader in our home congregation.  Her Mom was active in the church.  My Mom was very active also.  My Dad was a member, but did not do church in my growing up years.  Since I was going to be a Pastor, it seemed to her folks that I would be a reasonably good choice for Mary Ann.  Her Dad was not much of a talker, but when he talked, the family listened.  His Dad had been an orphan from France.

At the risk of another piece of “too much information,” Mary Ann’s house had an interesting configuration.  There was a hallway next to the living room.  At one end of the hall was her parents’ bedroom.  Then came the bathroom.  Then came the door to the dining room.  After her folks went to bed, Mary Ann and I would sit on the sofa and talk sometimes until pretty late at night.  Her parents’ bedroom door was just noisy enough, that by the time they opened it, before they had time to get down the hall to the bathroom, or worse yet, to the doorway into the dining room from which they could see us, our talking could resume a less animated and intense level. Don’t jump to any conclusions.  There was not much chance of any serious misbehavior in the living room of her house with her parents nearby.

One time we were talking until almost five in the morning, I think on a New Year’s Eve.  I went out to start the car and head home.  It wouldn’t start.  I had to get her Dad out of bed to push it down the street with his car to get it started.  That was another of those stories that would never go away.

It was obvious that Mary Ann came by her feistiness honestly.  Her folks and her brothers were always pulling something, sometimes getting angry with one another and not speaking to one another. There was never a dull moment.  There were Neices and Nephews galore, all knowing how to have a good time.  It seemed to me that Aunt Mary was special to all of them.  She valued them and paid attention to them.  She loved her brothers and their families.  I felt very much included in the family from the first flying cutlet on.

 

June 24, 2010

First Contact!

Posted by PeterT under Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
Leave a Comment 

FIRST CONTACT: She was 5 and I was 3.  She pushed me off the chair — or did I push her off?  Our Mothers never told us who pushed whom, just that it happened.  It was a Ladies’ Aid Meeting at Our Saviour Lutheran Church, 420 Downer Place, Aurora, IL.  I did not have to look up that address.  I remember it well.

We broke up for a few years after that incident, sixteen years to be exact.  I tried other girls in between.  There was Marsha in the 1st Grade.  I was devastated when she moved.  I don’t remember if we ever actually talked.  That is irrelevant in the First Grade.  That, by the way, was the year Butch and I decided that we would walk home to our respective houses on the same block even though it was just recess time.  The Principal came, picked me up, and sent me back to the classroom.  I still have a little video in my mind of walking back into the classroom that afternoon.

Then a few years later, I was playing in the basement at Sharon’s house (how I got there and why, I have no idea).  She kissed me.  It scared the bejeebers out of me and I ran home as fast as I could go.  We never spoke again.  I suspect Sharon doesn’t even remember it happening.  If she does, I doubt she would ever admit to it.

Then in the 7th Grade, it was Georgia.  Her hair stuck out in curls on either side of her head. She looked cute in her Poodle skirt and bobbie sox rolled down.  The closest we came to contact was sitting next to one another by accident at an all school Assembly.  She seemed decidedly annoyed that she ended up sitting next to me.

Then there was Paula, tall, with long blond hair.  It was the 8th Grade.  I thought there was hope.  She shut me down when I called her.  She said, “I thought I told you not to call!”  Then she hung up.  She never told me not to call!!

By the way, those all happened in the years I was still tall, second tallest boy in the whole Seventh Grade of maybe sixty kids.  Apparently my Pituitary Gland decided it had had enough and stopped putting out.  Everyone else grew, I was done with that.

It was not until Pam that a girl I liked actually liked me back.  She was from our church, a year older and pretty.  As a Sophomore in high school, it was no small thing to be going with someone older.  After all the rejection, I was sort of surprised anyone would be interested.  When I got my class ring as a Junior, my parents were mightily displeased when I gave it to Pam to declare that we were going steady.  Let me clarify for the young among you.  It was two years of dating before we held hands and not until she was at college that we kissed — and then it was the sort of kiss that would be seen in a 1950’s movie.  Some time in the Senior year, I broke up with her.  I am not sure why.  I remember during the first year in college writing her and telling her I had made a mistake, but it was too late by then.

My Senior year I did have a couple of dates with classmates.  I don’t suppose there would have been any future if the date with Carol had been any more than just a one time casual date.  I am not sure a Jewish Spouse would have been a popular thing for a Pastor in a fairly conservative branch of Lutheranism.  One of the kids I hung out with in choir and music activities suggested that I ought to become a Rabbi (which is what Mary Ann’s family calls me).  I did try to learn to chant Hebrew once.  I could read Hebrew and I could chant, but I could not put them together as any fourteen year old Jewish child who goes to Hebrew School can.

When I got to college in Milwaukee, the girls were nowhere to be found. It was an all male student body.  What a bummer!  I asked a school secretary out, but she said no.  Later she told me that she was going out with someone in her home town and was afraid she might like me too much.  Nice try!  Actually, she married someone who turned out to be a nationally acclaimed writer.  She did very well.  I know her husband as well and like both of them.  They are good people.

In college I did date for a few weeks a girl who made me look tall.  Then a young woman came to the school with a choir from another campus of our church body’s schools.  Alice had striking red hair.  We sort of hit it off, but distance made dating impractical.  I don’t actually know how interested she might have been.

Understand that I was always surprised when there was so much as a hint of interest from a girl.  Short, big ears, pointed nose, and no practice at the art of dating and interacting with girls, made me very unsure of myself.  In those years there was no “hooking up” to be done, especially for a naive ministerial student.  Courting was a very measured matter.  Or maybe that I thought so was one of my problems.

After the first year of college in Milwaukee, I returned to Aurora to work at Fredrickson’s Office Supply and live at home with my parents for the summer.  I had participated, and, I guess, help found a Singles’ Group at Our Saviour.  We enjoyed social gatherings, playing Hearts, eating pizza.

SECOND CONTACT: She and Joy were sitting on the bleachers two rows down and just to the left of me.  She was yelling (not sweetly) at the umpire at the church softball game.  It is there that I met her again after the nasty incident at the Ladies’ Aid Meeting.  She had long dark hair, olive skin, striking blue eyes, and a whole lot of attitude.  Whatever “at first sight” there was, it sure turned into love in short order.

That story will continue tomorrow.

Today went reasonably well.  I began it with two rounds on the path out in the open area at Cedarcrest, the Governer’s Mansion.  It is a beautiful estate whose grounds are open to the public.  It was a cool, clear morning.  The birds were busy, singing loudly.  By the way, an exercise walk is not a time for birdwatching.  It is a time for bird listening.  I was frustrated at how little I know about identifying birds by there call.  I did recognize the Red Winged blackbird’s various songs.  It took me right back to my years playing in the swamp.  The walk was over two miles. At least it is a start.

Every once in a while it would pop into my mind that I needed to get back to the car to check on Mary Ann.  After one round, I needed to get back to the house to check on Mary Ann, then I realized that was not necessary — I could walk a second round.

After showering, having breakfast and feeding the birds, there were a few emails to which I responded.  Among them were the ones related to what we will be doing in the Aurora area as a remembrance for Mary Ann.  The date is set:  Saturday, July 10 at Reuland’s, 115 Oak Avenue, Aurora, IL 60506.  We have the room from 11:30am to 3:30pm.  We will set a specific time for the worship part and remembrances and include that information in a subsequent post.  My hope is that everyone who wants to come will come for the luncheon portion also.  Those of you who read this blog and are close enough to come are welcome. Please comment to let us know a number so that we can tell Reuland’s how many to prepare for.

When I was walking this morning I thought again about the difference between what our life together looked and felt like from the inside compared to how it looked (and now feels) from the outside.  Our life was not lived in relation to what could have been.  It was lived in relationship to each other and our reality at the moment.  It was the only life we could actually live.  What could have been simply did not, does not exist.  It is somewhere in those observations that I hope to find the ability to come to terms with the horror of what I see when I look back, when the video is running in my mind.

The day included a trip to the funeral home to deliver the check for the difference between what the Pre-need Plan paid and what it actually cost.  I caught the Assistant Administrator off guard when I phoned her after receiving the bill today.  I told her that they had undercharged me for something.  She corrected it.  When I brought the check, she admitted that it was the first time anyone had called to notify them of being billed too little.  I would have complained if it had been the other way around.  They did the work, they deserve the pay.  They also did a very good job.  By the way, the funeral home is just blocks away from G’s Frozen Custard.  Who knows when I will be back in that area.  (Actually, I could have mailed the check.  I saved a 44 cent stamp and it only cost me the a dollar’s worth of gas and $3.52 for the Sundae. What a deal!)

Apologies — I still haven’t started the Thank You’s.  I now have absolutely no excuse not to get things done.

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

 

June 13, 2010

Want It Straight or Sugar Coated?

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: , , , , , , , , , , , , , , , , |
[5] Comments 

I have tried to write about our experience honestly.  To do so has required my revealing the harsh realities of painfully ordinary people.  I could try to create the illusion that we are a saintly household above all the weaknesses and failures and missteps that plague regular folks.  I could try, but this blog is not fiction.  It is too much work to make up stuff and keep it all straight.

I got up this morning after a night of watching her, feeling for her pulse, putting my hand on her chest to be sure she is breathing, getting up and putting my ear next to her mouth to be sure I could hear the breath going in and out.  I was tired and grumpy and angry.  Why does she have to be so stubborn?  Why can’t she just let go?  What a jerk I am to be angry at someone who has suffered so for so long and is now in the throes of dying!  I just can’t stand seeing her weak and vulnerable and in pain.  She would hate it!  She is a proud and strong-willed person, not about to be found to be weak.  I am not angry at her.  I am scared and sad and in pain with absolutely no one to blame.

I suppose I could waste a lot of time and energy being angry at God, but pain and suffering are not God’s idea.  God often gets the blame for the bad stuff (usually perpetrated by people doing the opposite of what He has asked us to do).  God more rarely gets credit for bothering to give us the breath of life and everything we just assume is our right, belongs to us.  I can’t waste my limited stamina being angry with the only One who can actually help both Mary Ann and me as we pass through this transition in our lives.

I wish I could cry, but I think the tears are waiting until this is over.  Every day seems like an entire lifetime.  This morning I was grumpy and angry.  I went to the computer to find that one of the other two in our online Lewy Body Dementia Spouses group at the same stage we are in lost her husband finally this morning.  Here is what I wrote to her:

Doris,
My thoughts are with you.  We are still in that time that has extended beyond the fear of the end to a longing for it to be over.  Rest now from your and Philip’s winding, uphill, exhausting and exciting journey to this point.  I wish you well as you take the best of what Philip has brought into your life, discover who you will become now that he is not with you here, and find joy and fulfillment when finally the pain finds a quiet place to remain as your own adventure continues.
Peter

Somehow reflecting on her loss, helped me regain a bit of perspective.  My anger and grumpiness are just a function of feeling utterly helpless, struggling to accept something I don’t want to accept, already missing horribly someone who has been in the center of my life for decades.  Yes, we could irritate the Hell out of each other sometimes, but that is precisely because we matter so much to each other.

The lifetime lived today included treating sores (none open yet), inserting Tylenol suppositories, cleaning and turning bones stretched with bruised skin over them, administering Morphine before the three times of turning to lessen the pain revealed by her grimacing as we worked on her.

The lifetime lived today included good friend and former co-worker Jim and Joanna, hugs and conversation and prayer.  A full, hot meal appeared at the door, delivered by Shari, member of our little Spiritual Formation group that meets for a couple of hours weekly.  Good Buddy Jimmy came by bearing a gift and concern for us.

Today’s lifetime included moments with Granddaughter Chloe, lots of words and acts of support for one another between Daughter Lisa, Son Micah, Daughter-in-Law Becky.  Today included the return of Son-in-Law Denis and Granddaughters, Abigail (who now wants to be called Abby) and Ashlyn, both full of energy and grateful to be in Mom’s arms again after being gone so long.

In today’s lifetime our downstairs bedroom and family room have become a campground.  It is very good that our small town home has three full bathrooms now that we have finished the downstairs and many people in it.

During this lifetime, the one lived today, fatigue has been a constant presence.  The consensus was that it would be good for me to go into the bedroom with Mary Ann, shut the door and just rest. Grumpy Grandpa is not their favorite family member.  I did so at least three times in this lifetime, today.  It helped.  Nothing can remove the tired with which I woke up, but it helped.

Lifetimes include sunshine and storms.  Today began with rumbling thunder, and moments ago the power went off for a moment, turning off the computer and the oxygen machine.  Needless to say, both are working again.

This day’s lifetime will now continue into the night.  At least intellectually, I have determined that it is not necessary for us to be awake and with Mary Ann at the moment of her death.  We love her and she knows it.  We have cared for her and doted on her for days.  Micah asked Lisa how long she has been here.  It has been eleven days that this watch has been going on.  It actually started two days earlier. We would love to have the privilege of surrounding her at that moment.  It is, however, not necessary for me to try to stay awake all night checking her breathing.  While I know that intellectually, we will see if knowing that has even a shred of influence on my insides and my actions.

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 12, 2010

What Happens Right Away?

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , |
Leave a Comment 

That was the question Son Micah asked.  He had not been with us at the time Hospice Social Worker Kristin answered some of those questions.  In forty years of ministry, I have become painfully aware of the process.

We will call Hospice.  The Nurse will come and make the declaration.  We will have all the time we want with the part of Mary Ann we can see, though life has left for another place.  The Nurse will call the Funeral Home to come and take pick her up to begin preparing her for the service.

We will begin going down the list of folks to notify.  I will not put anything on Facebook or the Blog until we have connected with as many as possible of those whom we intend to notify by phone or email.

When the funeral home vehicle arrives, we will send with them the dress, a picture to help them in their holy task of preparing her for viewing.  Once the Funeral Home folks have left, we will conclude the contacting, and try to begin processing what has happened.

We will set an appointment with a Funeral Director for the next day.  There will be an obituary to work out.  We will go over the plans we made many years ago.  Since we have those plans in place, we will not need to go to the casket room and make all sorts of decisions. They are already made.  We will need to write a check for the opening of the grave site into which the ashes will be placed the day after the service here.

One of the things I did today was work out a proposal for the flow of the service, the hymns and readings.  That job is normally left to the Pastor who will do the service.  Pastors are trained to do that, equipped to do that and experienced in doing it.  Since I served as a Pastor for forty years, Pr. Jim is willing for me to have input.  I finalized the hymns we prefer and did what I have done hundreds of times before.  I put them all together into a traditional Lutheran Funeral Service — admittedly, one with a little more music than usual.

It felt good to put that service together.  It did not feel good that the service will be for Mary Ann.  I couldn’t bring myself to actually write her name into the proposal I sent to Pr. Jim and Director of worship Young.  It just felt good to do something, something I know how to do.  Everything else is so completely out of my control, many of the things I am doing with Mary Ann are new to me, we don’t know from one moment to the next what will happen — it just felt good to accomplish something I am actually equipped to do.

We are all getting tired.  Sleep is tough to come by.  I get up at various times during the night to put my hand on Mary Ann to see if she is still breathing.  I wake up in the wee hours of the morning and just lie there, thinking and trying to doze a little.  The kids downstairs sleep fitfully, listening for my footsteps — reassured when they hear them and there is no pounding on the floor for them to come up.  Actually, I will also push the button Mary Ann used to push to get my attention when she needed me.  It is an electronic battery operated wireless doorbell system.

When I went out to run a couple of quick errands late this afternoon, Mary Ann’s breathing acted up, there were some odd and distressing movements, so the kids called and I came back quickly.  I appreciated that they called right away.  She seemed to settle down, but her breathing continues to be very shallow and a little less steady than it has been.  Otherwise, we remain in a holding pattern.  We keep hoping she will let go. It clearly is harder and harder on her when we move and shift her to avoid the bed sores.

Nurse Emily came and delivered some more briefs and adhesive pads for the red spots to keep them from becoming open sores if possible.  She reassured us that we are doing a good job of caring for Mary Ann.  When I asked about it, she said that when we see her in pain, it is better to give her the low dose more often than increase the dose.

I spend a lot of time talking with Mary Ann when I go in to be with her. I have talked about how fulfilling our life together has been.  Whatever we have done, we have been given the gift of wonderful children who have married good people, and produced beautiful, vibrant, healthy Grandchildren, filled with potential.  We could hardly ask for more.   It seemed odd when I realized that I fell in love with her shortly after I turned 19.  I am 67 now.  When I mentioned that to my Daughter, Lisa said she couldn’t remember back to when she was nineteen.  Mary Ann and I have had a lifetime together.  I have said that I have no regrets.  As I think about it, I do regret that we didn’t hug more.  She is too fragile for me to do it, but I just want to hug the stuffings out of her.  (There are no stuffings left to hug out of her — she is skin and bones.)

Don and Edie (and Son Zach) came by to drop off some orange sweet rolls — very tasty.  Don and Zach spent a little time with me talking about how to deal with the pump problem in the waterfall, the Calcium buildup.  Later, Volunteer Coordinator Mary brought by a Tuna Casserole, some of which we enjoyed for supper, along with leftovers from last night’s dinner.

In the evening, I ventured out for the fifteen minutes it takes to get a cup of coffee at PT’s and return home.  One of the owners, the one who travels to visit the locales and the farmers all over the world from whom they buy the coffee beans was there.  Jeff has a wonderful and caring relationship with all those with whom he works to provide the best coffee possible.  I have interacted with him on occasion since we arrived here in 1996.  He handed me his card and told me to call him if we need coffee brought to the house tomorrow.  He would arrange for it or do it himself.  Home delivery is not one of the services coffee shops provide.

Terry, one of Mary Ann’s three friends from childhood phoned this morning to check on her and wish her well.  All three of them and so many others have been checking on her, sending their love, and including her and the rest of our family in their prayers. This is a humbling experience for us — one we, of course, would never have chosen.  It is the capstone of Mary Ann’s life and an experience after which I will never be the same, hopefully a better person for it.

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 12, 2010

Family, Food and Flowers

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength | Tags: , , , , , , , , , , , , , , |
[5] Comments 

The Family has hunkered down now.  Daughter Lisa from Kentucky will stay for the duration with Denis and the girls coming when the time is right.  Son, Micah, Daughter-in-Law, Becky, and Granddaughter from an hour away (the Kansas City area), are now also camping out in the downstairs tonight.  We need to be close to one another and close to Mary Ann.

Of course we cannot know when Mary Ann will let go and head off for the next leg of her journey, or more appropriately said, the destination.  Her breathing is very shallow.  Last night I got up three or four times and went over to touch her chest to determine if she was still breathing.  We want her to stay longer and at the same time to just quietly breathe her last breath without distress.

Her condition seems fragile.  It is getting harder to find a position that does not put her weight on one of the red spots that have been threatening to transition into bed sores.  Hospice Aide Sonya came and managed to give her a bed bath, wash and blow dry her hair.  She was, of course, completely unresponsive during that activity.  Her fever was not very high this morning, but enough to warrant giving her a Tylenol suppository.  This evening her temperature seemed to the touch to be back to normal, so we did not give her the Tylenol.  We have only given her two of the lowest recommended doses of Morphine, since she has seemed comfortable most of the time today.

While there still appears to be none of the expected mottling of the skin, she seems fragile enough to die at any time.  It is getting harder to compartmentalize my thinking and feeling.  The kids seem to share that problem.  We go about our business as if we are accomplishing something, doing various tasks, talking with folks on the phone and those who came by today.  Then we walk into that room and look at the person we love and can’t bear the thought of losing from our lives here on earth, and the pain wells up, ready to break open.  It is hard to maintain the boundaries between the compartments in our lives.  When I am doing other things, outside that room, thoughts of doing whatever it is with her gone from here breach the boundary between the compartments.

There have been moments when pleasing gestures and gifts have lifted our spirits.  Last evening, Neighbor Harlene brought over food to us, so that we would have dinner tonight.  We already started on the chocolate chip cookies last night.  Later today, Janet and Joe, former parishioners, brought over some supper.  Both meals could be prepared with portions for tonight and tomorrow and portions to go in the freezer for later times.  I will appreciate having nourishment readily available after things settle.

Pr. Jim came by to spend some time.  I shared thoughts about funeral plans and he was very willing to help us have a service meaningful to us as well as any who gather with us.  We have the chance of having two wonderful vocalists sing at the service Carol and Kristen.  Carol has been a part of the congregation for many years, directing the choir for a large portion of those years, singing solos often.  Kristen (Carol’s voice student for many years) is based in Boston (has sung with the Boston Pops), sings professionally, and has as wonderful a soprano voice as I have ever heard.  Those plans are still in the works.  We will see what finally is possible.  We will talk with the Director of Worship about hymns and special music. In our tradition we are free to use joyful music rather than dirges at funerals.  We leave with a sense of victory rather than defeat.

Sister Gayle, Niece Diana and Friend Joy have agreed to team up to handle the logistics of a memorial gathering in Northern Illinois for all those who would not be able to travel here for the service.  The plan is that it will include food, memory sharing and a short worship service in an informal setting.

Then, at one point today, the doorbell rang and there was delivered a small vase of flowers, yellow roses, yellow alsternaria and white daisy mums.  Both Mary Ann and I enjoy having cut flowers in the house. We just love flowers outside or inside.  That vase of flowers perked our spirits.  Gretchen, who sent them, was in the first Confirmation class when I arrived in 1996 at the church from which I retired as Sr. Pastor two years ago.  She is soon to complete her thesis as Dr. Gretchen.

A foam wedge was delivered this afternoon to help keep Mary Ann in a position that avoids putting more pressure on the red spots that are threatening to provide serious discomfort.  We are putting Tegaderm patches on the red spots.  They are an almost transparent thin plastic patch that has just enough cushioning to give the skin a chance to heal when red spots appear.  If any of the spots transition to open sores, the Hospice Nurse will come and put a dressing on them.

I have taken a number of breaks from writing to go in and check on Mary Ann’s breathing.  I have thought about what it feels like to be in this time that some readers of this post have called sacred.  Pr. Jim noted a sense of peace when he has visited.  It is a time of very complex dynamics.  There is hardly a more sacred time than the last moments of life.  Death certainly is what helps define life. Someone observed that there is absolutely no difference in the amount of matter, the weight, the chemical composition of a body before and immediately after death.  There is one difference.  Life is gone.  Life does not have material substance, but look at the difference it makes.

These moments of transition certainly are sacred.  There is peace.  There is pain. The one does not diminish the other. Is it peaceful pain or painful peace.  At any rate, they are folded together into one sacred time in our lives, Mary Ann’s, the Kids and Grandkids, and mine.

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 11, 2010

Cold Feet and Legs Scared Me

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping | Tags: , , , , , , , , |
1 Comment 

She was cold up to her knees.  We called Hospice; the Nurse just left.  I have been in many hospital and Hospice House rooms as the end approached and finally came.  Cold feet meant that the end was creeping up the body.

Her vital signs were good this afternoon when our regular Hospice Nurse made her visit.  The conversation then suggested that the week end, but not likely past the middle of next week would be the time of Mary Ann’s departure.  The fact that she is taking in no food or water played into that expectation.  She would not take even a straw full of water dropped into her mouth.

When we uncovered her tonight to change her, I felt her cold feet.  There is a light yellow hue (not jaundice sort of yellow) up to her knees, and to my touch she feels very cold.  The Nurse checked her pulse in her foot and it was still strong.  Mary Ann’s feet did not feel to the Nurse to be cold in the way they are cold when the dying process has reached the final stage.  There was no mottling on her legs, something expected when death is getting near. Her fever was back to almost normal.

The Nurse reassured us that given the signs, she was very likely to make it through the night. The thought that she might go tonight scared me.  Of course, it is hardly a surprise that her death is imminent.  My defense mechanisms are holding tight and trying not to let go until the end actually comes.  As a result, I am living in a holding pattern.  When there is not some change that tells my insides something else, they maintain the illusion that this will be going on indefinitely.  Every time I go in and look in her face, my insides waver — reality begins to overwhelm the defenses.  The cold feet and legs breached the defenses and started to crack open the dull pain in the belly.  The Nurse took the pressure off and the crack closed for the moment.

One of the spots from lying on one side was concerning this morning.  That red spot needed some attention, so when Nurse Emily came by, we asked her to check it.  She went back to the office to get a translucent dressing to put on the spot.  We will turn her more often tomorrow (morning, noon, supper time, before bed).

During the day three different times spread throughout the day, Mary Ann’s face indicated that she might be in pain.  Each time we gave the lowest dose recommended of Morphine.  Each time it seemed to help.

Hopefully there will be some rest tonight.  Today was a day with much less activity than yesterday.  I got a routine fasting blood test this morning at a nearby lab.  Somehow, a small chip managed to break off a spot on a lower tooth in the very front of my mouth.  My tongue spent twenty-four hours rubbing against that spot — no matter how hard I tried to stop it.  The pain in underside of the tip of my tongue forced me to call the dentist.  He filed it off the rough edge of the tooth so that for the moment the pain should subside  There will have to be more work done at some time in the future.

Last night when I first went to bed, I thought I would leave the light on and watch Mary Ann breathe.  Sometime just before 3am and realized that I could turn off the light I was using to see her body move with her breathing, since I was asleep anyway.  So much for that idea.

Somewhat reassured about tonight, I hope to get some rest.

 

June 9, 2010

Do you know how much I love you? “Yeah.”

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , , , , , , , |
[5] Comments 

She mouthed the answer, “Yeah,” but she may as well have shouted it from the rooftops.  I responded, “Thank for the best gift you could ever have given me.”  She has not moved her mouth in response to anyone or anything in about a day and a half.

Her eyes have been closed most of the time.  One eye has opened on occasion, but with little evidence there was much consciousness behind it.  When I came in to be with her for a bit this time, both eyes were open.  I wasn’t absolutely sure she actually seeing me until she mouthed her response.

Her fever is stable at the moment, only a degree and a half above normal.  It has been at that level all afternoon and evening.  We will still use a Tylenol Suppository tonight to try to keep it from rising by morning.

Today was a typically busy Wednesday, in spite of what is going on here.  The Spiritual Formation group met on the deck.  I realized again just how important that two hours weekly is for helping me keep my perspective and my spiritual focus.

During that time Volunteer Elaine came and read to Mary Ann.  Shortly before the end of the group meeting, Bath Aide Zandra came.  We figured out that she had been coming to see Mary Ann twice a week for almost eight years.  No wonder she has shed some tears.  Zandra did a thorough job on Mary Ann’s bed bath, hair washing, as well as changing the bed with Mary Ann in it.  It was good that Lisa came in since she is experienced and could lend a hand.

Hospice Social Worker Kristin came by for a while.  It was helpful to have her knowledge and experience available as we talked through what is going on here.  She confirmed what I already knew, that when death comes, the Hospice Nurse will make the necessary phone calls to get all the basic tasks accomplished so that the family can focus on their notification calls.

Landscaper Sheila came by to work on the garden and waterfall, doing clean up, adding a couple of things needed.  As a gift, she put some Petunias in a huge pot on the ground at the edge of the deck.

Marilyn, a member of the Lead Staff at the church from which I retired, stopped by to spend a few minutes with Mary Ann and some time with the rest of us.  She shared a reading and prayer with us, providing some words of reassurance about the Lord’s presence with us no matter how stormy our life may be at the moment.

Pastor Mike, who will preach at Mary Ann’s funeral (why doesn’t that get any easier to say), stopped by to spend a few moments with Mary Ann, and share some time with us.  We reminisced a while since our history together goes back to 1972.  He listened to stories about Mary Ann.

Then friend Jeanne came by to spend a little time with Mary Ann.  It was a difficult time for her.  Pastor Mike was still there, so we talked together about how hard it is to handle what is going on here.

I have to say, we started out with the refrain that we don’t like this, and as time goes by we are not liking it more and more.  That is an awkward way of saying it, but you catch my drift.  It is more and more painful to go into the bedroom and look at her pretty face, immobile and helpless — at the very same time it is more and more painful to be outside of the room and not with her.

I am glad to be able to feel that pain.  I don’t want it, but it is reassuring evidence that I am still alive and still care and not in denial.  It has always struck me that when someone has a paralyzed limb, one way to check whether or not it is healing is to stick a pin in it.  If the owner of that limb jumps in pain, the arm or leg is alive — healed.

Those who have been where we are, but for a much longer time, have often commented that after a while, they just can’t feel anything any more.  They go numb.  Good news brings little joy; bad news brings little pain.  They have to insulate themselves from their own feelings.  The ups and downs have worn them down.

We are still able to feel the pain.  I can assure you it is more than a pin prick.  Because we can still feel the pain, we still get to feel the love.

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

 

« Previous Page — Next Page »