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July 6, 2010

This Old House — Home for Fifteen Years

Posted by PeterT under Family, Relationship Issues, Uncategorized | Tags: , , , |
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Everywhere we looked, there were Moms with large bellies growing.   Mary Ann felt right at home.  It could not have been the water.  She had come from Ft. Wayne already pregnant.  Whatever it was, the babies popped out one after another, mostly boys.  The day before Micah was born, we had just come from the doctor’s office.  He said that she was already dilated some and would have the baby any time.  I was driving toward home, when to my horror, the engine stopped running.  We had run out of gas.  I don’t remember what Mary Ann said, but some things are better not to know.   Micah arrived the next day, September 7.   I have to admit that I was mightily irritated when I was told that I would have to leave now and go to the waiting room — and awful place with magazines from the 50’s.  I had been in the Delivery room when Lisa was born.  At Research Hospital, the rules changed concerning that issue two weeks after Micah was born.  I can remember taking Lisa with me to the street outside the hospital so that she could wave to her Mom.  She was a little over three years old at the time.  Mary Ann often lamented the timing of having both kids in the heat of summer in hot climates.  It just dawned on me, she may have been blaming me for that!

Then there was the house.  We looked mostly on the Kansas side, in Johnson County, since that was where the church was located.  After a while, nothing seemed to ring our chimes.  There was one possibility, but it was a little over the range that had been suggested to us based on my salary.  Then the realtor said, “We can look at the old house on the Missouri side.” 

Understand that the Missouri side meant a school system that had a typically bad reputation for quality as a city school district.  The Missouri side was more varied racially.  Johnson County was much less varied ethnically.   Both of us appreciated the older feel and ethnic variety of the Missouri side, but mostly, we just fell in love with the house the first time we saw it.   We bought it in 1972 for $22,500.

We had both grown up in older homes.  The “Old House” as she called it, was a two story shake sided house built in 1926.  The developer built to match the topography, leaving trees, curving streets around the hill.  The trees were all tall and stately.  There was a large bed of irises in full bloom.  The lilac bush was hanging with heavy clusters of blossoms filling the air with their scent.  There was the largest pussy willow bush/tree I have ever seen.  There was a spectacular Silver Weeping Birch in the front yard.  Each house in the neighborhood differed from the rest. 

There was a 25 foot long living room with a fire place — french doors to a side porch.  The dining room had a huge hand painted scene that blended with the wallpaper.  It was just an outline and was muted enough not to be distracting.  The Master bedroom was 18 feet long.  with a full bath and walk-in closet.  There were two other bedrooms, much smaller.  The house had a second full bath upstairs and a half bath in the breakfast room downstairs.  The kitchen was quaint, but there was barely room for the fridge.  There was a detached garage with a basketball hoop on the front of it.  Mary Ann loved that there was a basketball hoop out there.   There was something about being able to shoot hoops that she liked. 

The old stone basement had a little water in it at times, but it was no major problem.  There were some very entertaining camel back or cave crickets in the basement.  The house was solid as a rock.  It had shifted as much as it was going to shift decades earlier.  The plaster in a couple of ceilings was in bad shape, but both were repaired for about a hundred dollars.

Early on we remodeled the kitchen just a little, taking the wall to the breakfast room out, putting in sliding glass doors and adding a deck.  Those changes allowed much more space in the kitchen area.  We removed five layers of wallpaper from the walls, patched and sanded.  The walls were in almost perfect shape.  We heard about a fellow who would refinish wood floors.  We tore up the wall to wall carpets and found a beautiful white oak floor with red oak stairs. 

We enclosed the side porch into a multipurpose space.  A parishioner who was very skilled as a carpenter did much of the work, trading labor with me.  Dick did the carpentry for me and I helped him on his Mother’s farm.  At that time his labor would have been $16 an hour, and farm hand more like $3 an hour labor.  It sounds like a good deal at first glance.  Have you ever put up hay in 94 degree weather?  If you have, you know whereof I speak.  I almost died!  Well, maybe not quite that bad. 

Mary Ann made curtains and always had an eye for color.  The house was wonderful.  We felt very much at home there.  Mary Ann put in a little garden near the garage and used branches from the pussy willow for stakes at the ends of the rows.  The garden did not do well, the stakes thrived.  We had little pussy willows growing at the end of each row.   There was a tiny oak tree sapling that sprouted in that garden a few feet from the garage.  Mary Ann refused to let me pull it out.  I carefully explained that it was too close to the garage.  We drove by that house a couple of years ago.  In the intervening thirty some years it has grown into a tall and perfectly shaped oak tree.  The Silver Maple saplings we planted in the front yard had grown from the seeds of the neighbor’s tree.  When we went by that same time, they were huge trees.  The Monkey Grass we brought from Ron and June’s front yard in Memphis decades ago is still covering the terrace. 

I remember Jack, next door.  He was a Great Dane who was so tall that when he got curious and jumped up, his head would be above the top of the six foot privacy fence.  When he went back down the air would catch his ears and they would fly up, looking very silly.  Of course, I fed the birds and squirrels there just as I do now.  If I dared to sit out on the deck too long, interfering with the squirrels eating the olives from the Russian olive tree, one of the squirrels would find a branch right over my head and drop squirrel turds on me.  His aim was remarkable.  We had brought ferns and Jack-in-the-pulpit and wild phlox plants from my folk’s place in the country in Northern Illinois and planted them on the north side of the house in the back yard.  They thrived there for all fifteen years. 

Near the end of the fifteen years there, Mary Ann and I spent three weeks painting the outside of that shake sided house.  We scraped, primed, put on two coats of paint in three colors on that two story house.  Mary Ann did the lower story and I did the upper story.  I also scraped, primed and painted the 22 windows (all 6 panes over one). 

I thought I would tell the story of that house in one post before going on to our lives during that time.  By the way, that house for which we paid $22,500 in 1972 was on the market in 2007 or 8, listing for $310,000 — location, location, location.  

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 30, 2010

No Money Left for Shuttle Home

Posted by PeterT under Daily Challenges, Relationship Issues, Uncategorized | Tags: , , |
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We traveled on through the black forest.  We followed a river back up to its source at the top of a pass, where we got out and threw snowballs at one another.  Then we followed the trickle of snow down the other side of the pass until it grew as waterfalls from melting snow tumbled over the rocks alongside adding more and more to it until it was a rushing river on the other side of the mountains.  In the  valley, we saw and visited the picturesque town of Oberammergau, the site of the passion play that was performed every ten years.

The bus took us through Lichtenstein, where we had the best meal on the trip, good sausage and trimmings.  By the time the trip was over, none of us could look a Wiener Schnitzel in the face.  Almost every meal was breaded veal, boiled potatoes and peas and carrots.  If we tried to order a glass of water and said the German word for water, wasser, we were brought sparkling mineral water. There was never any ice to be found.  Alas, we had to drink wine and beer.  The beer was one Mark a for a half liter, 25 cents, American.

In Austria, we could look out of our hotel room at a lake across the street bordered on the other side by mountains with puffy clouds hanging half way between the surface of the lake and the peak of the mountains.  We shopped in Switzerland and finally ended up at the airport in Belgium.

When we arrived in the airport in New York City, the plane had been delayed long enough that we missed our flight to St. Louis.  The airline gave us vouchers for a meal at a very nice restaurant in the airport while we waited. I had a huge steak about the size of what we used to call an arm roast.

It was either at the Washington airport when we were on the way to Europe, or in the New York airport on the way back that we ran into a family with a large and very friendly dog that we took time to pet.  The family the dog was with was Bobby Kennedy, his wife and children.  This was in 1966, between his Brother John F. Kennedy’s assasination and his own in 1968.

Finally, we landed in the St. Louis airport.  We had cut things too close as we managed our limited dollars very carefully but apparently not carefully enough.  The cost of the shuttle ride from the airport back to our apartment was $6.00.  We didn’t have that much.  We were stranded.

Hilton and Trudy Oswald came to our rescue.  They were a cute, older but very energetic couple who had come along on the trip with us.  We had hung out with them sometimes, especially since Hilton could speak German fluently.  They piled our luggage and us into their old Mercedes and drove us to our apartment.  It was not too far from their home.

The next week in St. Louis it was about as hot as it had ever been.  We never lived anywhere that was hotter and more humid than St. Louis.  There was a strong smell of yeast in the air constantly from all the breweries.  That week there was a temperature inversion.  The pollutants were kept from blowing away.  The air was yellow.  The temperature was 106 degrees for six days in a row.  Our apartment was, of course, not air conditioned.  We would open the windows of the bedroom, as well as the ones in the living room to get a cross breeze.  We slept in our underwear.  We would lie on our backs until they were adequately sweaty.  Then we would turn over and let the air movement very slowly dry the wet side, while the other side got sweaty.

Now there is the matter of the rent.  We had left enough in the bank to pay that first month’s rent when we returned from Europe.  The bank that before we left for Europe had told Mary Ann there would be no job waiting for her when we returned, did have her job available.  With both of us working full time, we were able to get back on course, paying the rent and saving for school in the fall.

We had very little money in those years.  We were dirt poor, along with all the rest of the seminarians, especially the growing number of those who had gotten married.  I don’t know that we felt poor.  Wonders could be done with hot dogs and creamed corn or macaroni.  Popcorn was cheap.  When we wanted to party after classes on Friday, one couple would bring the limes and the tonic water, the other couple a bottle of cheap Gin and we would relax with Gin and Tonics.

Mary Ann was able to earn a little extra money by babysitting for a couple with a toddler.  The parents got a pretty good deal.  We had one car, a gray 1956 Chevy with stick shift.  Mary Ann refused to learn to drive a stick shift.  That meant that the parents got two for the price of one, which was 75 cents an hour.

One time the parents of the toddler asked Mary Ann if she would be willing to babysit their son at the grandparents’ home.  She got the directions to the house and we headed out searching for it.  They were confusing directions, but we managed to find it.  It was a huge house on many acres of land.  There was an airplane sitting in an area beside the lane that led to the house.

We had been instructed to go to a room over the garage.  The room was outfitted as a playroom.   When we had mentioned the name of the Grandparent’s to someone, they wondered if it could be the J. S. McDonnell who owned McDonnell – Douglas aircraft.  It was!  He had been on the cover of Time Magazine not long before.  At that time, his income for one year had been $90,000,000 (yes, 90 million).  This was in the late 1960’s.

That number is relevant to what happened when the grandparents returned, and it was time to settle up.  I can remember Mary Ann and I standing beside the cooking island in the kitchen as we totaled the bill for the four hours.  At 75 cents an hour, the total was $3.00.  Mrs. McDonnell had a $5 bill.  She waited until Mary Ann searched her purse and billfold, and I searched my pockets for what seemed like an eternity to come up with the $2.00 in change.  No wonder he had $90,000,000.  He kept every penny he earned.  At the risk of being very politically incorrect, did I mention that McDonnell is a Scottish name.

As the story continues, the Vicarage (Internship) from Hell comes 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.

 

June 29, 2010

Wow, What a Honeymoon!

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , |
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No, this will not be one of those “too much information” posts.

That first year at the Seminary, I was singing in a very good choir made up of students from the Seminary and singers from some of the Lutheran churches in St. Louis.  There were probably sixty or a hundred Lutheran churches in St. Louis at that time.  A radio station in Holland had tried to get St. Olaf’s choir to come for a Heinrich Schuetz festival there.  Somehow, they got hold of a tape of our choir and offered to pay us 30.000 Guilder to come to their radio station studio to sing and make recordings.

Mary Ann was not singing in the choir.  She had started working full time at a bank so that we could continue to survive while I went to school.  I continued to work part time during the school year and full time during the summer at Clark-Peeper Office Supplies in Clayton.  Even with the promised 30,000 guilder covering a portion of the cost of the trip, each of us had to pay a portion also.  I don’t remember how much.  I do remember that we could take non-member spouses along for about $750.

We knew we might never get a chance like that again.  We had enough savings in the bank to cover the cost for me and for her, enough for a little spending money on the trip, leaving $100 in the bank for when we returned.  That would be enough to pay the next month’s rent, with nothing left over.  Mary Ann’s bank said that they would not have a job waiting for her when we returned.  We decided to do it!

We flew to Washington, D.C. and on to London.  We spent four days there, visiting cathedrals, riding the Underground (subway).  We sang at King’s College Chapel in Cambridge.  The trip there was harrowing.  The tour bus driver was nuts!  Of course he was driving on the wrong side of the road, that was to be understood, it was England.  However, when a blind curve was approaching while on that two lane road, he moved right out to pass a car.  He was traveling at a frighteningly high rate of speed. Our worst fear was realized when a car appeared coming toward us from the other direction on that curve – traveling at an equally frightening rate of speed.  We passed three abreast on that two lane road.  It took hours to clean the seats on the bus — okay, it almost scared us that much.

We drank warm, bitter beer and ate beef and kidney pie.  That was about as bad as it sounds.  We saw all the usual sights.  Both of us decided that we wanted to return some time.  That never happened.  We were right about the once in a lifetime opportunity.

Then we flew into Amsterdam and drove to Noordwijk-Aan-Zee, a small resort town on the North Sea.  There we stayed in a boarding house while we went back and forth to the radio station in a larger town nearby.  I remember riding bikes together to the laundromat.  I remember that the wash water was scaldingly hot.  Someone in there managed to warn us about that even though they spoke only Dutch and we spoke none.  I knew a few German words, but we were told that it would be far better to stick with English than to use any German.  Our bus was picketed at one point because we had a German bus driver.  The war was still fresh in people’s minds.

The weather was too cold for swimming, but we rode to the beach of the North Sea just to see it.  The breakfasts were cold cuts and cheese and breads.  For all the meals, all five days, we had the very same cloth napkin kept in a plastic holder at our place at the table.  We had fried chicken one night.  As a somewhat compulsive hand washer, it was a horrifying experience!

After recording for the Heinrich Schuetz festival, we headed on to Germany.  Only West Germany was accessible at that time.  We saw the huge Cologne Cathedral, Frankfort, Munich.  We visited castles, Linderhof, Neuschwanstein (where from the balcony of the throne room we saw one of the most beautiful views I have ever seen, a lake nestled in between wooded mountains).  We saw what was left of the Heidelberg Castle boasting the largest wine barrel ever filled with wine, so large that it had a dance floor on top.  We did a concert in a cathedral in which there was a full five seconds of reverberation after stopping the final chord. (We heard tell of one castle that had a seven seconds of reverberation.) It was a powerfully moving experience to sing in those churches.  We sang a total of 8 times in three weeks.  The rest of the time we traveled and saw so many beautiful sights.

Classmate Louie (nickname) and Elise had moved their wedding date to just days before the trip so that they could be together on it.  In Muenster, it happened that they were assigned to stay in separate places.  There were tears flowing.  Since by then we were an old married couple of six months, we offered to stay in separate places so that they could stay together.

In Muenster we stayed in homes for two nights since one of the members of the choir was recently from Germany.  We sang at her home church in Muenster.  Mary Ann stayed with a family that spoke English.  I did not stay with such a family.  Actually, I ended up in a boarding house run by a family from church.  The first night was fine.  One of the other boarders was Franz von den Ohden Rhein (Frank from the Old Rhine), who spoke English.  The second night Franz was gone.  I sat at the supper table with six or eight people who could speak no English, not a word.  I knew my one sentence in German, the one that revealed that my Mother was born in Germany.  That was it.  The good news was that after a few bottles of wine, we seemed to be able to communicate without much trouble (at least that is how I remember it — what I remember of it).

The adventure continues tomorrow.  (Can you say “Bobby Kennedy??”)

Today was a better day.  The morning walk was reassuring in that again, I actually enjoyed the sights and sounds.  The pain allowed me room for that.  After I got cleaned up, I got a cup of coffee at PT’s and was greeted by Sara and Kelsey.  They are barista’s who have been very thoughtful and welcoming to me.  I taught Kelsey in Confirmation Class and Confirmed her a number of years ago. She is very newly married.  She had some very thoughtful and affirming words.  It warmed my spirit.  A good way to start a day.

I wrote some thank you notes and then headed to Paisano’s for the monthly lunch with Jimmy.  He lost his wife many years ago and understood very well what I am going through.  After that I stopped for a moment to drop something off at church.  There I spent a few moments with Linda and Marilyn who were part of my support system for many years, whether they realized it or not.  They knew.

When I went to the Wild Bird House to stock up on feed for the birds, I was greeted very warmly by Melody and Todd, who had only a day or two before discovered that Mary Ann had died (still very hard to write or say).  Todd came over and put his arm around me to comfort me.  We have just talked on occasion over the last few months, mostly about birds.  I would stop there most weeks while Mary Ann was in her Tuesday morning Bible Study.  It helps so much to have people around who seem to care, trying to provide comfort and understanding.

I spent the middle of the afternoon writing thank you notes.  They brought me close to tears more than once as I thought about what Mary Ann went through.  I was also overwhelmed in a good way with the realization of all that so many people did for us.  The hours that people spent here are far beyond counting.  It is not even remotely possible for me to repay what was given.  Those who came usually enjoyed Mary Ann, but they were sometimes scared that she would pop up and then fall, maybe hurting herself.  I think people felt good that they were really helping us, making a substantial difference in our lives.  I think many felt that they were doing a ministry for Faith by freeing me to continue to serve Faith while Mary Ann could not be left alone.

It is also clear that Mary Ann ministered to those who came.  So many have been struck by her courage and unwavering faith in the face of all she went through.  She did not complain.   People could talk with her and know that it would not be shared with the next visitor.  I still marvel that she just took the next hit whatever it was and went on as if nothing had happened.

This afternoon, friend and former parishioner Mark came over to talk and listen.  He has been through this.  He phoned Sunday afternoon, knowing that it would be a terribly painful time for me.  We set this time then.  Mark brings with him a strong and vivid faith along with some counseling experience, as well as having lost his wife whom he loved just as I loved Mary Ann.  He walked me through a Psalm that was especially meaningful to him at the time of his grieving.  The content of our conversation will remain between us.  It is enough to say that it was a helpful, meaningful and comforting time for me, immersed in the Grace of God, and the healing God provides.

It has not been an easy day.  Easy is no longer an option, at least for now.  It was a better day.  The pain was clear and identifiable, always ready to pop back fully into view.  It did not express itself as often or with as much intensity as it has in the last days.  I am not so naive as to think it will not come back with full intensity whenever it chooses.  It was just helpful to have a day in which it did not rule.

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

 

June 14, 2010

Her Battle Is Over!

Posted by PeterT under Daily Challenges, Family, Help from Others, Hospice, Meaningful Caregiving, Relationship Issues, Sources of Strength, Uncategorized | Tags: , , , , , , , , , , , |
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We thought the end had come this morning when the bath aide and Daughter Lisa and I were working on her.  She made some awful sounds and her eyes opened wide and rolled back, then she stopped breathing.  After only seconds, she started breathing again.

Poor Bathe Aide Zandra left during that time to let us be with her.  I grabbed a Bible and tried to read a couple of Psalms.  Words and tears mixed, mostly tears.  In a few minutes Mary Ann stabilized to a steady heart beat and steady breathing.

Zandra had pointed out some of the telltale mottling on the bottoms of her feet.  That was at about 9:45am.  We called Hospice Nurse Emily who came out to put a dressing on one of the sores that had developed.  Her blood pressure was low, and the oxygen saturation percentage was lowering.  Gratefully, her lungs were still clear.  Mary Ann again made clear with some scary sounds that she was not happy with being moved.  Nurse Emily indicated the obvious, that it would probably be before the day was done, certainly by tomorrow that the end would come. Emily  was here late in the morning.

We kept close track of Mary Ann’s breathing, which remained pretty steady.  Then we saw that in just an hour or so, the mottling had moved from the bottoms of her feet all the way to her hips.  When we called Nurse Emily about how to determine when to use the Morphine, I told her about the mottling.  She said she would be over at 2pm, an hour from that call.

Emily talked with us for a while and shortly after she left, Mary Ann took what turned out to be her last breath.  We were all immediately at her side.  I had found one of the books I used in the ministry and put it nearby.  I read a beautifully written Commendation of the Dying liturgy.  She died during that couple of minutes.

It is hardly necessary to tell you what came next.  After I gained enough composure, I called Nurse Emily to record the time of death.  Nurse Lisa came first since she was closer.  Then Nurse Emily came and did the official recording of the time.  Nurse Emily and Nurse Lisa prepared Mary Ann for the funeral home to take her.  We had all the time we wanted before they came.

Daughter Lisa and Denis let their two little ones (5 and 7) come in to see Mary Ann. I have worked with families with children often in situations like this.  Letting children satisfy their curiosity and ask questions is very helpful.  It is better to treat things honestly without giving them more information than they want or need.  They need to hear that it is all right for their Parents and the Grandpa cry, and that their Grandma is okay even though she has died.  They need permission to be sad or silly or whatever they need to do.

Granddaughter Ashlyn (5) was mostly excited that she lost her very first baby tooth this afternoon.  She is counting on a very generous tooth fairy.

Son Micah and Becky came in next with eleven year old Granddaughter, Chloe.  This is her first Grandparent to die.  She just needed to do some crying and be nurtured by her Parents.  There were lots of hugs.

Denis took the girls to the park for a while so that they would not be there when the funeral home took Mary Ann out.  They had an appropriate experience without that.

We made all the phone calls we could think to make.  We checked to see if the Funeral could be at 11:30am on Thursday at the church (Faith Lutheran Church, 17th and Gage, Topeka, KS).  It appears that the day and time are acceptable to all parties.

There were more food deliveries today.  There have been emails and phone calls as the news has begun to spread.  At about 4:30pm Pat from Penwell Gabel Funeral home and a helper came to pick up Mary Ann.  I have done so many funerals with them in the dozen years before I retired that they are more friends than they are funeral home staff. Our appointment is set for 11am tomorrow.  We will take the dress and the pictures at that time.  Son Micah is working on a draft of the obituary.

Lisa and Micah have each been doing their grieving in ways that work for them.  There have been hugs and tears.  Each of them has a Spouse who provides them with love and support without limit.  Is is such a comfort to a Father to see that.

Pastor Mike came over and spent the next couple of hours with us, just talking about Mary Ann and our life together, as well as what might be in store for me.  It gave me a chance to talk, something I do especially when I am dealing with my feelings.  It is my mechanism for processing things.  It served as a way to keep at bay the sadness that is sitting in my gut.

I have to say that the sadness is much different from the pain of these last couple of weeks as I saw Mary Ann decline to a shadow of her former self.  The horribly painful knot in my stomach, feeling her pain, untied immediately after she died.  I want her back, but I could not tolerate seeing her in that condition any longer.  I find myself talking as if I am just fine, while just under the words are tears and sadness and a dull pain — a new one, different from before.

She no longer is in pain. That is the best news imaginable.  In my faith tradition there is no doubt that she has transitioned to a kind of joy and peace immersed in love beyond human comprehension. For those whose view of reality does not include a similar spirituality, the release from the pain and suffering of the last couple of weeks especially, is a great good.

My hope tonight is that I will share a bit in her peace by getting a good night’s sleep.  Whether or not I can sleep is another one of those things over which I have no control.  I am really getting tired of all the things over which I have no control!

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: , , , , , , , , , , , , , , , , |
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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 2, 2010

Almost No Food in Four Days!

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She ate one six ounce container of Yogurt for breakfast.  That was the biggest breakfast in four days.  Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning.  I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells.  Her BP measured 280/130.  That is frighteningly high.  Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75.  In the mid-afternoon, while she was lying down, I took it again.  It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level.  She has still been fainting, in fact there is a new twist.  After being out for a while, twice shen stiffen like a board in a mild seizure-like event.  She wouldn’t bend — in the middle or at the need.  She was stretched out full length, locked in that position.  It happened once when trying to get her back into bed.  It happened a second time while on the toilet stool, dealing with a messy BM.  The good news is neither did I become frustrated or get upset.  I just laughed.  I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening.  It is time to just deal with it.  I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon.  It has been good to see the girls and have Lisa to talk with.  Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today.  Mary Ann responded a bit a couple of times to Lisa.  Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today.  The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly.   While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way.  I explained the situation, adding that her vitals are still pretty good.  She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back.  There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came.  Lisa was a CNA for some years while in high school.  She ended up Administrator of a large multilayers facility for the older population.  She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open.  It is time to sleep.

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.

 

May 29, 2010

They’re Back!

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Here we go again!  Last night included a number of times up, suggesting that we were cresting the hill on the way back to hallucinations.  During the night, they were not as intense as I expect them to be the next couple of nights (hopefully only a couple) before there is any realistic hope of a break from them.

This morning she started trying to get up very early.  I managed to get her back in bed a number of times until about 7am.  I gave up on that strategy and got her up.

The truth is, I am more frustrated with my reaction to the hallucinations than I am the hallucinations themselves.  I want to become able to take them in stride and respond without getting grumpy.  I apologized for being so grumpy and explained to her that I was frustrated from trying to deal with them for so long and feeling helpless to do anything about them, especially with no medical help from a competent doctor at the moment.  I was a little surprised that she responded in a way that suggested what I said had found a path through the hallucinations to Mary Ann herself.  She seemed to understand what I was saying, recognizing especially the issue of trying to deal with this with no doctor in the picture yet. In fact she managed to describe of whom she was thinking well enough to determine that she was suggesting a local Neurologist whom we have used in the past (when she had a stroke), a doctor we like.  He is not likely to have the specialized knowledge that we need, but it is worth a try.

At the moment, I have not received return calls from two contacts made last week.  I am disappointed, since in one case a nurse from a dementia clinic was supposed to phone with answers to my questions about Lewy Body Dementia.  In the other case, I left a message on an answering machine. The only option from which I have the information I need that would allow us to proceed is the one I find the most distasteful.  It would involve a few days in the hospital.  The hospital has always thrown Mary Ann for a loop.  In each case there was pretty much a psychotic break from which we never really regained the lost ground.

Today, after our conversation, Mary Ann managed to stay seated long enough for me to get a shower.  I gave her the morning pills and got her breakfast.  It was not too long thereafter that she ended up back in bed.  She said she wanted to go to the bathroom, but she fainted to such an extent that I could not get her on the toilet stool.  I put her back in bed and she has been there ever since.  That was around 9:30am.  It is now almost 4pm.

Volunteer Tamara, came at 10am to give me a chance to nap if we had had a difficult night.  The timing was perfect since this was the first bad night in the last five.  When Tamara was with Mary Ann last Monday evening in a regular Volunteer slot, it was obvious to her that I had not slept much either in the prior 8 days of Mary Ann’s intense hallucinating.  She suggested the option of adding a nap time option on Saturday and one other day next week.

Volunteer Coordinator Mary and I are talking about adding a Saturday time slot regularly just for that possibility.  There is no way to be sure when bad nights will come, but having the time to nap or just get away for a while is helpful.  This morning I was able to nap for a couple of hours and also leave the house to do a couple of errands before Tamara was due to leave at 1pm.

While, since Mary Ann has slept so long, I would have been able to nap today, I would not have been able to get out to do the errands.  I could not have known in advance that she would sleep most of the day.

What lies ahead is still unknown.  Of course, that is always true, but there are not even clear expectations.  The pattern from before the increase in dosage of Seroquel was that Mary Ann would hallucinate for two days and three nights, then sleep for two days, then have a transition day during which the most lucid moments came. Then the hallucinating would begin again.  Since this disease is so erratic in its presentation, using the word “pattern” is pretty silly.  It does what it will do when it chooses — and that is that.

…It is about 9:30pm now.  She slept through until about 6:30pm.  She had indidcated that she wanted something to eat, but by the time we got to the table, she was no longer able to speak intelligibly.  I couldn’t figure out what she wanted or if she still wanted anything.  I just held her for a while.  At that point, she couldn’t sit up straight — almost fell off the chair.  I did manage to get her to take some spoonfuls of applesauce.  Finally, she just could not respond in any way.  It was tough to get her from the dining room chair to the transfer chair.

I managed to get her to the bed, but by then it was apparent that there had been some intestinal activity.  She was almost completely limp, but I needed to get her to the toilet stool, cleaned and changed and back into bed.  If last Saturday’s struggle with that task was a 10, this one was a 9.9.  It all got done and she ended up back in bed.  I was physically as exhausted as I was last Saturday.  I was not as emotionally exhausted.  For whatever reason, I kept my cool during this one.  I just did what needed to be done.  I hope some progress has actually been made in dealing with that problem.  Admittedly, I was much more rested today than I was last Saturday.

I settled on the deck for some devotional reading.  It was a beautiful evening, warm, but with a pleasant breeze.  After a short time there, I saw on the video monitor that Mary Ann was moving.  I went in to check.  She was able to speak more clearly.  She wanted to eat something. This time it was some vanilla ice cream with hot fudge and pecans.  After eating, she watched Dr. House for a half hour or so, and has now taken her bedtime pills and gone back to bed.

Today while she was lying in bed, on occasion she would be there with eyes open, talking to people only she could see.  While we were sitting next to one another in front of the television before she finally went to bed, she was doing the same, this time with her eyes closed.

Sleeping all day and having moved into the hallucination cycle leads me to expect a more difficult night tonight than last night.  She appears to be restless at the moment.

…This time it was another trip for #2.  This time it was at least a 9.95 compared to last Saturday’s 10.  She was sort of dead weight thrughout, but including enough involuntary twisting and moving her weight against what I was trying to do as I sought to hold her up, that I almost could not get the task done.  If nothing in this short and chubby body gets broken, pulled or herniated, I am going to be a force to be reckoned with physically.  This is like going to the gym multiple times a day.

I had better close, otherwise I may be writing all night and have nothing left to write about tomorrow — unlikely!

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.

 

May 27, 2010

I Keep Waiting for Their Return

Posted by PeterT under Daily Challenges, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , |
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There is no reason to think the hallucinations won’t be back.  She is still sleeping all night and most of the day.  I expected them to fire up last night.  They didn’t.  I expect them to fire up tonight.  I am assuming that Mary Ann is just adjusting to the lower dose of Seroquel, that she will sleep off the transition and return to the cycle of sleep days followed by hallucination days.

She got up pretty early, was up for about an hour and a half this morning, and went back to bed.  While she was up, she took pills and ate a good breakfast.  She was calm and lucid.  She says very little when she is up.

She was up again early this afternoon. I got her dressed. She ate a good amount of food for lunch.  Again, she was calm and lucid.  She lay down after an hour or so.  As has been so every day since last Saturday there was some intestinal activity, sometimes almost as difficult to handle as Saturday’s problem. Other than that, the care issues have been minimal.

At this moment it is a little before 7pm and she is still sleeping.  I am concerned about how much she is sleeping, but comforted that she is eating reasonably well at least at breakfast and lunch.  There is less production by her kidneys, but since she is sleeping so much, she is not taking in enough to produce much.  The color is okay.  I will certainly keep an eye on that.  If I get concerned, I will call Hospice to talk with the nurse.

Because she is lying down so much, when she does get up, she is vulnerable to fainting, but even that is not as bad as it has been at times.  I have done nothing much today, just waiting and watching.  I have the monitor on so that whenever I am back here at the computer I can see if she is stirring.  Otherwise I just go in and out and check to see that she is okay and ask if she wants to get up.

The only progress today is that I got a phone call in response to the fax that I sent.  The Nurse was clear that the Neurologist would still be available to deal with the Parkinson’s but not the Parkinson’s Dementia or any medicines used to treat the hallucinations (the primary symptom of Parkinson’s Disease Dementia).  I said nothing in response other than asking for clarification that he would still see us at our next scheduled appointment.  I asked if he would renew the Seroquel Prescription that he started prescribing about a decade ago.  She said that whatever Psychiatrist we  find should do that.  I have to say that everyone in the online Lewy Body Dementia Spouses group, as far as I can tell, uses a Neurologist and not a Psychiatrist to deal with their Loved Ones’ [LO] treatment and medications.  These are a few hundred folks who have been dealing with this disease, some for very many years.  Very many LO’s have hallucinations and delusions and sleep issues identical to Mary Ann’s.  Among them, the use of various medications including Seroquel works for some and not others.  There is no consistent pattern of treatments.

…She got up again at about 7:30pm to go to the bathroom and change into her pajamas.  Then she returned to bed.  I will wake her at 8:30pm or 9pm to give her the bedtime pills and see if she is hungry.

…I got her up to take pills at about 9:15pm.  She wanted to eat something and chose a single serving container of applesauce.  She lay back down as soon as she was done with the pills and the applesauce.

I did take a little time to sit on the deck this evening, reading some more of the book of meditations (titled Christ, My Companion) on the Prayer of St. Patrick (St. Patrick’s Breastplate).  The writer, Marilyn Chandler McEntyre, is an intelligent and spiritual writer who reflects good Biblical scholarship and an appreciation for the intricacies of the Physical Sciences.  That is a combination I especially appreciate.  It always helps tune my mental and spiritual receptors when I read in a woodland setting even if human-made, located in our backyard.  The trees, flowers, sounds of the waterfall, birds, and tonight, fireflies, all helped create access to my spirit.

I took a moment to go to the front of the house with my binoculars to bathe in the light of a bright perfectly round full moon, just rising from the horizon between two trees.  It is surprising just how much of the landscape on the moon becomes visible with good binoculars.  With such a bright full moon, I didn’t expect to see so many stars and planets, even a couple very close to the moon, still visible.

Mary Ann seems to be sleeping, but she is doing the jerking that I  have seen  more often lately.  I may just be seeing it more since she is sleeping more at the moment. I don’t know if what she is doing qualifies as Myoclonic Jerks, but even if they are, to my knowledge, it would make no difference in treatment.

I continue to wait for the hallucinations to begin again. I am getting spoiled by having time to rest.  I would be happy for them to take a long vacation and leave Mary Ann alone for a while.

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.

 

May 26, 2010

Intense Hallucinations Take a Break

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Today was a respite from the hyperactive hallucinating with me tagging along hanging on to the gait belt.  For most of the last two days, Mary Ann has been sleeping or resting but certainly calm even when awake.  Her speech has improved even though she is saying very little.

Yesterday, she was almost completely unresponsive.  This morning she refused her shower.  Monday and this morning she seemed not to know her Bath Aide Zandra of whom she has come to be very fond. When I came in after the morning Spiritual Formation Group on the deck, she was sitting at the table with Volunteer Maureen trying to feed her some yogurt.  Mary Ann was crying.  I guess she had been since Zandra got her up.  I assumed she had had one of those sad dreams that sometimes come.  When I asked her about it, she said she couldn’t remember why she was crying.  She might have forgotten or she might not have wanted to tell me about it.  I think it was the former.

As the day has worn on, the short times she has been up have gone pretty well. She has seemed calm and lucid and connected.  I haven’t seen her that way in over a week.  It seems reasonable to conclude that the addition of a morning dose of Seroquel ten days ago made things worse rather than better.  I expect the hallucinations to begin firing up again, probably tonight, but I hope they will not be as intense as they were before we removed the morning dose of Seroquel. Whatever comes next in our relationship to a physician, I will be asking lots of questions about the Seroquel she is still taking, the night time dose.

The last two days have provided me with a little more rest.  Even if still tired, I feel better and seem to have regained the ability to experience moments of respite.  Last evening while Volunteer Patrice was at the house with Mary Ann, I went to my favorite local spot to enjoy that wonderful view and a spectacular sunset.  The sun was a huge ball with the light refracted enough so that it was possible to look at it as it passed behind a horizontal band of cloud, showing above and below the cloud before reaching the horizon.  As I was looking toward the sun the sky and clouds were glowing as if on fire.

Then I saw something I have seen in movies on rare occasions, but never in person.  I took the binoculars and pointed them in the direction of the sun, providing a view as if through a movie camera lense.  The air was filled with Cottonwood seeds, carried in those tufts of white fluff.  The sunlight caught them in a way that made them look just like the embers that fly up from a bonfire when the burning wood is stirred.  The air was full of those firey embers being blown gently across the scene provided by the binoculars.  It was sort of entrancing as I watched them floating through the air.

The weather allowed this morning’s Spiritual Formation Group to meet on the deck.  It was a beautiful morning in spite of predictions of storms.  The birds were loud and busy. The sky and clouds were in stark contrast of deep blue and bright white.  There was a breeze that cooled us periodically as we were warmed by the bright sun.  The conversation was thought provoking and satisfying as we caught sight of the power of community and the need to have reverence for others and the setting in which we live together.  As always, I am struck by the commonality that we have since we are all made of the same stuff, earth.  The first person in the Biblical account of creation is named Adam.  That name is the Hebrew word for earth, dirt, adamah. We call ourselves human, from the word humus, the dirt from which plants grow — fertile soil.  Whether one happens to have a spiritual view of reality or one without a spiritual dimension, the same is true.  We are made of the stuff of earth – all of us.  No one can claim to be better or more valuable than another and still speak the truth.  We may do things that when measured by others have greater or lesser value, but we are at the core, the same.  That seems to me to be the key in this hostile world to any path that might lead to real peace — no winners and losers, but full participants in our common humanity.   Such peace is only a dream in a broken world of imperfect people, but possibilities start with dreams.

Later this morning, I experienced a mini-retreat with fellow group member, former parishioner and friend Paul as we walked some property that reminded me a bit of my favorite place of Spiritual Formation, St. Francis of the Woods in Northern Oklahoma.  A friend of Paul graciously gave him permission to bring me out to this remarkable spot that provided an expansive and secluded field of wild flowers and native grasses completely surrounded by trees.  For me it was a bit of a step back in time to my childhood days of wonder over weeds and bugs and birds.

The deck and the area surrounding his friend’s house were filled with birdsongs.  There were wrens singing so loudly that it almost hurt my ears.  Other birds joined in.  Flowers in various stages of the growth cycle were to be found in bed after bed.  The trees were even dramatic in shape and texture as they reached into to one another, displaying varying shades of green. One large tree next to the deck had multiple gnarled trunks providing lots of play areas for the birds to entertain as they hopped from branch to branch.  There were art pieces, small and large, metal sculptures, everywhere I looked near the house.

Afterward, I was out of breath and hot and sweaty with boots wet from walking through the weeds but refreshed by the experience.  I am grateful to have felt good enough last evening and today to enjoy those experiences.

As I said, I am expecting the hallucinations to begin firing up today and tomorrow, based on past experience.  I am hoping that some of the contacts and calls will begin to bear fruit as we look for good medical care for Mary Ann for the rest of this journey.

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.

 

May 25, 2010

Down, But Not Out

Posted by PeterT under Daily Challenges, Help from Others, Hospice, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities, Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , |
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I felt pretty low this morning. She was up some during the night, but not as bad as some nights.   Mary Ann’s dementia was pretty strong.  Her words were still pretty much unintelligible. She insisted on getting up very early.  I was not sure if she would ever calm down.  She was hallucinating and grumpy.  I felt pretty much trapped, barely able to manage a shower and responding to my own call of nature with Mary Ann up and moving. I felt unusually tired, not just physically.

She finally did become more subdued, putting her head on the table as she sat.  She ended up in bed and was only up for a small breakfast and a very small lunch.  At lunch I had to hold her head up to get any food in her mouth.  Later in the day, she was up for a short time when Volunteer Coordinator Mary phoned and brought us Baskin & Robbins ice cream.  Mary Ann ate only a very few spoons of ice cream with me standing up beside her holding her head and upper body up, feeding her while Mary held the cup.  She then pretty much fainted and I took her back to bed.

She has had no supper either.  Once in the afternoon she did get up for a very short time.  She stood up to go in the kitchen to get something to eat and when she got near the bedroom door, she changed her mind and went back to bed.  She has at various times been doing a lot of vocalizing and jerking when lying in bed ostensibly asleep.

I have no clear expectation concerning how she will react to removing the additional dose of Seroquel she had been taking for eight days. This is the second day with only the evening dose. I am pretty apprehensive about the impact of the change.

It is easy to feel very helpless in the face of things over which we have no control.  Losing the care of the doctor on whom we have depended for so long, who has performed veritable miracles with medications over the years, was just another evidence of our vulnerability.

What has happened throughout the day today has provided a glimmer of possibility — only a glimmer, but at least something.  Talking with the folks at hospice, phoning a couple Psychologists in the city whom I know and respect, began to produce some results.  Both Psychologists called back with helpful information, the Hospice Nurse made her weekly visit and had done some checking, the Hospice Social Worker phoned and came over with some helpful information. Then Volunteer Coordinator Mary brought us the ice cream treats.  I am still bone tired.  I don’t know what that means exactly, but it sounds as I feel.

As tired as I feel, there is also the feeling that we are beginning to regain a little control in a situation that is hopelessly out of control.  It may only be an illusion, but if it is, it is a helpful illusion.

At the suggestion of one of the Psychologists, I have contacted a Senior Diagnostics program at a local hospital.  Apparently the Psychiatrist in charge is especially capable of dealing with complex clusters of symptoms and diseases — that certainly is Mary Ann.  The person with whom I spoke on the phone knew about Lewy Body Dementia and seemed to understand that it had to be treated differently from Alzheimer’s Dementia. While a few days in the hospital would be among the last things either of us would choose, at least it is an option.

The other Psychologist gave me the name and number of a Neuro-Psychologist whom he knows well and respects very much.  While a Psychologist is not the one who prescribes the medications, he/she always has a close relationship with a Psychiatrist who can do so.

The Hospice Nurse had talked with their Medical Director, a Physician in Kansas City, about our situation.  She indicated that if we don’t get someone soon, he can make sure we have the medicines we need.

The Hospice Social Worker reviewed the residential options and will do more checking on those.  She provided an idea of costs, indicating the layers from least expensive of having help here at home (of course our preference) to the next layer of small care centers that are in homes with very personal care to the larger nursing homes that accommodate those with dementia.  She mentioned one not far that a Social Worker friend had declared to be wonderful.  A clearer picture of options helps fuel the feeling of having some little bit of power in this situation, some choices.

I also sent the fax to the Neurologist who declined to continue to treat the hallucinations.  I asked if we should still plan on keeping out next appointment in a few months since Mary Ann still has the Parkinson’s, which he has treated for so long.  Then I asked if he would still respond to requests for refills of the medications he has currently prescribed for Mary Ann.

There was one especially interesting sidelight to the day.  Many months ago a request came through the online group of Caregiving Spouses of those with some form of Lewy Body Dementia.  It was from someone in the Chicago area who writes articles targeting Seniors for a Health Insurance provider’s magazine.  The magazine just goes to enrollees in Northern Illinois (if I understand correctly).  When the request came, she was looking for Seniors who did Blogging and had an Illinois connection.  Both Mary Ann and I grew up in Northern Illinois (Aurora).  I responded, but heard no more.

Yesterday she emailed and today interviewed me on the phone.  She had great questions about our situation, how and why I started blogging and what purpose it serves in our situation.  It was just nice to have someone from completely outside our circle spend forty-five minutes paying attention to our situation.  Now that I am not in a circumstances that provide much feedback, it felt good to hear someone who is actually a writer assessing my blog posts in such a positive way.  I have no way to judge the quality of the writing.  I just need to write to get this stuff out of my gut.

When she asked one question, what popped into my mind and out of my mouth was very revealing to both of us.  All through the day I am thinking about what is happening in terms of how and what I might write about it.  I realized that I actually feel as if I am not alone when things happen, especially things that push me past my limits.  Whether or not it is true, I feel as if you who read this are part of what is going on; you notice us; and, judging from the occasional comment, you are concerned about us.  I realize that sounds very self-serving and ego-centric.  It is.  I admit it — but it sure helps.

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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