September 27, 2010

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

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: , , , , , , , |
Leave a Comment 

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

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

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

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

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

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

 

September 2, 2010

Enrollment in Hospice Brings Many Last Good-bye’s

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

In a former post I reflected on the power of the word “Hospice.”  When the neurologist suggested it, we pursued that option.  It fit our intentions for how we would travel the last leg of our journey together.  Enrolling in Hospice and then seeing her looking almost comatose one Sunday morning after an increase in the Seroquel (in an attempt to manage the hallucinations) combined to finally break the dam on the tears, a dam that had been holding them back for years.  I sat in the car at the Lake on that cold morning, listening to Celtic Woman Lisa Kelly sing, weeping loudly and long.  

It had finally sunk in.  There was a part of me that somehow thought we would just keep death at bay for years to come.  Mary Ann had bounced back from so many hits, any one of which would have taken a person with less grit and strength of will.  That morning, the denial was breeched.  That denial had allowed us to live a fairly normal existence in very difficult circumstances.  The truth is that Mary Ann never let go of the denial until she chose to stop eating and drinking.  I returned to that denial, comforting myself with the knowledge that some in the Lewy Body Dementia Spouse Caregivers online support group had been in hospice for as many as three years (maybe longer).   My denial didn’t begin to crumble again until the same time as Mary Ann’s.  Of course, I knew intellectually what was afoot, but my gut was not influenced by what I knew in my mind. 

Sending out the word that Mary Ann was now enrolled in Hospice, had the effect of moving friends to come and spend time with her.  Some of our Kansas City Crew of close friends came by and spent the better part of a day.  We have decades of history together, and stories to tell from that history.  As always we had a good time together. 

Friends Trudy and Coleman with whom we shared a similar history, came by and spent hours with us.  Trudy and Mary Ann had developed a special connection over the years.  It was a comforting few hours.  Mary Ann surprised us with her sharpness at one point when she remembered a name that the rest of us could not bring to mind.

Niece Diana and her Daughter Rachel came by from Northern Illinois for a couple of days.  When we were married, Diana was old enough to be a bridesmaid in our wedding.  That visit was especially meaningful to Mary Ann since geography and circumstances had made it hard for her to keep those family connections active.  Mary Ann could no longer write letters; she could not manage the computer to email; her voice was not strong enough nor did the words flow freely enough for her to talk on the phone.  That visit sort of filled an empty place that had developed in her life since travel had become so difficult for us, preventing much family contact.

Then there was the visit of the Three Friends from the North, Joy, Terry and Cherri.  That was the most wonderful gift she could have received before her journey here ended.  I have written often about them and the raucous times when the four of them got together.  It was no different this time.  They have hung out together since they were all in about the Fifth or Sixth Grade.  The old feisty Mary Ann emerged as the stories flew by.  It was a marvel to see. 

All those visits provided a fitting conclusion to Mary Ann’s life here.  There were many Volunteers who enjoyed time with her in the final months.  Those relationships had come to be very meaningful to her.  Then when the end finally came, all of us in her immediate family surrounded her, ministering to her and expressing our love for her.  While none of us would have chosen for her to leave so soon, the last leg of the trip was filled with good and satisfying times.  Her departure was peaceful, and I have no doubt her arrival at her next destination was filled with joy and wonder and happy reunions. 

In spite of the onslaught of the Parkinson’s and the other physical assaults on Mary Ann, in spite of the struggles we both had trying to negotiate all that was thrown our way, there are some gifts that came to us and those around us.  In fact some of those gifts came because of what we went through.  In subsequent posts I will describe some of those gifts.  I described them in the words that I shared at Mary Ann’s Memorial Service in Northern Illinois.  I need to describe them again and celebrate them.

 

August 31, 2010

Mary Ann’s Last Hurrah! Our Last Attempt at Traveling.

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , |
[2] Comments 

Less than a year ago, Sunday, October 25th, we got into the van and headed out on our last adventure traveling together.  Our first stop was the 60th birthday party of friend John in the Oklahoma City area.  I had not given any indication that we might be coming, so it was a complete surprise.  He had not seen Mary Ann in fourteen years.  We stayed for a few hours, had a great time, and then headed for a motel that was on the way to our next stop.

That stop was a three night, four day stay at what I have no doubt is one of the very best Bed and Breakfast’s in the nation.  It has been featured in Midwest Living and easily measures up to the PR on it.  The name is Lookout Point, Lakeside Inn, located in Hot Springs, Arkansas.  (www.lookoutpointinn.com)  I have described it more than once in earlier posts. 

There are twelve rooms and a condo from which to choose.  Every room has a balcony or patio overlooking a quiet bay of Lake Hamilton.  There is a secuded feel to it because of how it is situated at the edge of the bay.  The gardens are unbelievable, lush, full of color in both spring and fall, with a large fountain feeding a stream and waterfalls that run through the gardens down to the lake.  One of the rooms is fully handicapped accessible.  We had stayed there a time or two before this. 

The breakfast is always a gourmet meal and the 4pm wine, cheese and freshly baked goods are always a treat, especially on Chocolate Wednesday.  There is original art work everywhere.  Hot Springs is one of the top ranked small cities in the nation in the fine arts.  Owners, Ray and Kristie are gracious hosts.  Kristie is an Ordained Pastor in the United Methodist Church who remains active doing weddings and retreats among other things.  The library there includes a section on Spiritual Formation.  By the way, the library, a separate reading room with a fireplace and a huge sunroom, along with the dining room and large patio eating area fill out the areas available for relaxation and renewal. 

Mary Ann was doing well during our time there.  We got out for ice cream at least once.  We toured some of the first class Art Galleries in the downtown area.  We drove up a winding road right in town, a road that took us up to an overlook providing a breathtaking view extending many miles.  Our last evening was spent sitting in a protected area of the outdoor patio enjoying a gentle rain. 

On our previous trip to Lookout Point, Mary Ann decided that we should head to a place she thought was nearby at which people can search for diamonds and keep what they find.  It was very hot when we were there last.  Mary Ann used the wheel chair almost exclusively.  I was picturing trying to dig around in the hot sun while at the same time having to move the wheel chair through gravel.  When Kristie told us how far away it was, I was much relieved that it would be too far to manage. 

Unfortunately, Kristie mentioned an alternative.  It was a quartz mine in easy driving distance.  It was not long before Mary Ann was sitting in her wheel chair next to a huge mound of mud, while I dug out promising hunks for her to look at and trying to find quartz crystals.  Mary Ann baked in the sun and I sweated in the mud until we managed to find a few little crystals and one big one.  Finally, Mary Ann said she needed to get out of the sun and we called our quartz crystal mining operation to an end.  We brought back a bag of chunks of mud that have crystals in them.  That was almost two years ago, and the bag of hardened hunks of mud is still in the garage waiting to be cleaned. 

On this trip, gratefully,  Mary Ann did not ask to go to the quartz mine.  I think she had baked long enough the last time.  The weather would not have allowed it anyway this time.  It was just a good trip, even with the rain.  We both enjoyed  it in spite of the physical challenges.

On the way back home, we stopped overnight in Eureka Springs.  By the time we arrived at the motel there, the gentle rain had become not so gentle, just about washing Arkansas away.  It poured longer and harder than I can ever remember experiencing before.  In the morning, we discovered that the breakfast that came with the room was being served in a separate building in the lower level.  There was no elevator and a huge flight of cement stairs between us and the food.  I went down to check on the breakfast to see if it would be worth the effort to try to get Mary Ann to it.  There was a very large dining area with long tables laden with all sorts of  breakfast foods, including hot out of the oven Quiches of various kinds. 

It was too good a layout to just try to bring up a couple of morsels to the motel room.  We decided to  try to get Mary Ann down the stairs and into the dining room.  She stood up at the top of the first section of stairs while I moved the wheelchair to the first landing.  Then I went back up and held her tightly as we moved down the stairs.  Remember, people with Parkinson’s can negotiate stairs better than level areas.  The problem, of course, was the issue of the Orthostatic Hypotension that caused her to faint after a time of standing or walking.  Since the last visit to my Brother’s home, Mary Ann had been walking without fainting.  We had increased a medicine (Midodrine) that helped keep her blood pressure up, but often way above safe levels. 

We made the first landing, where she sat for a bit.  Then she stood up, I carried the wheelchair to the bottom of the next section of stairs, came back up and held her tightly again as we completed the descent.  We both ate well, but I kept thinking about how foolish it might have been to come down the steps, since there would have to be a return trip.  Finally, we were the last, and the lady in charge needed to close things up.  While we would have made it back up those stairs one way or another, the lady in charge took us through the kitchen and out another door to the bottom of a steep drive for delivery trucks. 

The drive was so steep it was almost impossible for me to keep my footing and push the chair up to the top.  God is good!  A delivery person arrived just at that time.  Between the two of us, we managed to push her to the top of the drive.  When it came to food, there was not much that would stop us. 

We headed back home.  Mary Ann continued to do well.  That evening, October 30, Mary Ann was fine.  We got up the next morning and she seemed all right.  Later in the day, after she had a long nap, we headed out in the car.  I stopped for coffee.  When I got back to the car, she was not feeling well.  I gave her a nitro pill and headed for the next stop at the store while the pill had a chance to work.  After I got out of the store, she still did not feel well.  She described the feeling as a heaviness in her chest.  That was all I needed to hear.  We stopped at the house to get a couple of things, and I took her right to the Emergency Room.  As suspected, it was congestive heart failure. 

She recieved wonderful care, but the decline was dramatic.  She was there only a few days, but she never regained the ground she lost.  It was the beginning of the last leg of her journey here, our time together.  That journey is recounted in great detail in the posts written almost every day from then until the end.  I am not ready or able to review those months in detail yet. 

We did the best with what we had.  Mary Ann squeezed the most she could out of every day.  She never gave up until she decided it was time to leave.  Then she just stopped eating food and drinking any liquids.  For 23.5 years she pushed to the very edge of the limits the Parkinson’s put on her and then stepped over those limits, beyond what could reasonably be expected of her.  I did everything I could think of and was able to do to provide the best care, the best quality of life within my power to give.   I think we both dealt with what came our way, yes imperfectly, but with dignity and courage, living every day with meaning and purpose.  The strength to do so did not come from us, but the One who made us and never gave up on us.  The One who sits at table with Mary Ann now.   I miss her more than words can say.

 

August 27, 2010

A Miracle: She Started Walking Again.

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

It was a little less than a year ago that we headed off for a major trip again.  This one was to Kentucky to visit Daughter Lisa, Denis, Abigail and Ashlyn.  When we had done it in one day, it usually took us about eleven hours to get there.  This time, we stopped at a motel at about the halfway point.  We got plentyof rest, had a leisurely morning, and headed on to Louisville around noon.  Mornings always were extended by the time it took for each step in preparation for getting ready to go anywhere.  It was just a part of our reality. 

On other occasions we had stayed in the downstairs at Lisa’s.  Mary Ann’s Orthostatic Hypotension made that a challenge.  When she stood, her blood pressure would drop making her susceptible to fainting.  It was almost comical to see us help Mary Ann up the stairs.  One odd characteristic of Parkinson’s is that while feet may freeze on the level, stairs are no problem to negotiate.  The challenge was to get her up the stairs before the low blood pressure no longer provided an adequate blood supply to her brain to keep her from fainting. With one of us beside her and one in back, we raced up the stairs to a waiting chair.  On some of our visits, every time we arrived at the chair, she would faint.  On some visits she had less difficulty with it.  There was nothing we could come up with that explained why some times were better than others.

By this time last year, the OH was bad enough that it was no longer an option to stay in the downstairs.  We chose to stay in an extended stay motel.  It worked out well.  We took whatever time we needed in the morning at the motel, and ended up at Lisa’s house around noon.  We spent time with the family as long as Mary Ann’s stamina held out, and then headed back to the motel. 

We headed out in the car with the family, often to visit Huber’s winery and garden produce market and bakery (and ice cream parlor) in Southern Indiana near Denis’s family, with whom we visited.  Usually there was a trip to a restaurant.  There was lots of time watching Abigail and Ashlyn doing a variety of things.  There were many hugs, lots of pictures drawn and colored.  We had a good visit.

When we left, rather than coming straight home, we made the relatively short drive to Columbus, Indiana, to visit Brother Dick, Dee and the family.  Dick is a retired Pastor, fourteen years my senior.  We are almost from different generations, but have come to know and love each other as the years have gone by, as has been so with Dave, Gayle and Tish, our other siblings. 

I have described the setting at Dick and Dee’s place a couple of times before.  They live on a five acre plot with trees and ponds and gardens everywhere.  There are bees that provide honey, fish to be caught, vegetables to be picked from the garden and either eaten right away or canned to be eaten later.  Freshly baked bread and home made granola are mainstays.  There are birds constantly at the feeders attached to the rail or sitting on the deck right outside the floor to ceiling windows. 

We enjoyed a wonderful meal.  Then came the miracle.  Mary Ann had declined to the extent that walking more than a few steps had pretty much ceased to be an option — we thought.  When she tried to walk, many times the blood pressure would drop and so would she.  When we arrived at Dick and Dee’s, it was a little challenging to get the wheel chair where it needed to be.  Mary Ann just got up and walked the length of a long hall to the living room.  Then when we looked around the house, she walked and did not fall.  Later, we went over to see the magnificent house their Daughter Jill (our Niece) and her husband had built to house their three boys, by then in junior high and high school.  The house was perfectly outfitted for the boys having friends over to hang out together. 

Dick drove Mary Ann over in the golf cart he and Dee use to get around on the acreage.  We didn’t take the wheel chair.  Mary Ann toured the main floor of that huge house on foot, never falling once.  I could hardly believe what I was seeing.  After spending the night in a nearby motel, we headed back home the next day.  This time we made  the trip in one day.  For some reason, going home always seemed to go faster.  Part of that sensation was due to the fact that we crossed a time zone creating the illusion that we had taken less time. 

After we got home, the walking continued for weeks.  Before we left, I would jump up every time Mary Ann got up so that I would be ready to catch her before she fell.  I would, of course, try to convince her not to get up without warning me so that I could come and help.  After we returned, I relaxed and stopped jumping up when she stood.  That change made our days much less stressful.  That miracle made our last fall together a pleasant one. 

In the next post on this sight I will describe the subsequent trip to a Bed & Breakfast in Hot Springs, Arkansas, the one that would be our last trip. 

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

 

August 25, 2010

She said, “Let’s be Honest, We’re Bored Silly!”

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities | Tags: , , , , , , , , |
Leave a Comment 

“How is retirement going?”  the Pastor asked as we were leaving after worshiping at the evening service at  a Lutheran Church in Kansas City a few months into retirement.  I told him that it seemed to be going pretty well, better than I had expected it to be going.  When we got in the car after that interaction, Mary Ann said, “Let’s be honest.  This is not working.  We are both bored silly!” 

First of all, it was a shock to me that so many words came out so clearly.  Mary Ann was never very forthcoming with conversation and especially by that time in the disease process.  She just blurted it out.  By that time I had begun to feel as if things actually were going pretty well.  What I inferred (rightly or wrongly) from what she said was that it was not working for her and she was bored silly.  In fairness, she may have been assuming that I was bored with our situation after moving from many hours away from home working at my job to being at the house pretty much all day long every day. 

It certainly was boring for her.  She couldn’t do any of the things she had done in the past for entertainment other than watch television.  We had been heading out in the car very often to do one thing or the other so that we would not be cloistered in the house, but apparently that was not doing the job.  Since we were together all the time, there was no news to share that the other didn’t already know. 

At first, it sort of hurt my feelings that having just retired early to do full time care of Mary Ann, there seemed to be no appreciation.   For one thing, I needed to accept the fact that I could not fix the situation — I could not do enough to replace all that she was missing.  One thought that came to mind  was trying to increase the visits from Volunteers so that Mary Ann would have someone other than me to talk with (listen to) more often during the week. 

It happened that there were enough of the working folks who could only Volunteer evenings that Scheduler Mary was able to accommodate that need.  We added two evenings a week as options when Volunteers were available.  The Volunteers brought with them their presence and their experiences and their stories.  Sometimes (especially on NCIS days) there was a lot of just sitting together and watching television.  Often Volunteers shared what was going on at work or in their family or extended family, thereby enlarging Mary Ann’s world. 

Sometimes a Volunteer (daytime or evening) would read to her from a novel they brought out each time she visited.  There were occasional outings by Volunteers who happened to be willing and physically able to help Mary Ann in and out of the car as well as handling the wheelchair.  There were trips to Ensley Gardens, a world class garden on the other side of town.  Volunteers would sometimes do food preparation, bringing Mary Ann into the kitchen with them.  In earlier years, Mary Ann had often challenged Volunteers to a game of Scrabble.  She played well and showed no mercy. 

I suppose the greatest challenge was trying to keep Mary Ann’s environment a stimulating one for her.  I felt inadequate to the task.  I didn’t have the creativity or the stamina to do it myself, but with the help of the Volunteers, she had a reasonably good quality of life within the limits placed by the Parkinson’s Disease.  Until the last few months, we got out as often as I could think of  something to do that we could manage, if only to the Library or the grocery store.  Right up until the last hospitalization last October 31st, we were often on the road.  We had just returned from our last major trip the day before, October 30th. 

Descriptions of the last two major trips with come in subsequent posts.

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

 

August 23, 2010

World’s Fattest Cat

Posted by PeterT under Daily Challenges, Life History, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , |
Leave a Comment 

Maybe not, but darn close.  One of Mary Ann’s challenges after the stroke was negotiating the utensils she ate with.  Getting food on to the fork or spoon and where is was supposed to go was not an easy thing.  How much we take for granted.  We don’t give a second thought to the matter of getting food into our mouth unless we are using chop sticks or trying to eat peas.  For Mary Ann, just eating a few bits of food could be a major challenge. 

To help with the problem, I got a couple of thick plastic plates from Munn’s Medical Supply.  The plates were called Inner Lip Plates (a trademarked name).  They were just that, plates with about a half inch high lip around the center part of the plate.  They provided an edge tall enough to push the food against it allowing the fork or spoon to get under it without pushing it off on to the table. 

After a year or two of using those plates, it dawned on me that we ought to be able to get plates that we could all use when we ate together with the Kids here.  We had on occasion purchased pieces of pottery from Jepson pottery that had an outlet about 45 minutes away.  His studio was only an hour or so away from us in the other direction. 

We had gone for an outing a couple of times and stopped at his Studio.  Actually, we discovered where it was located when we used the GPS on one of our ice cream runs to Emporia (over an hour away) and we drove right by Harveyville, Kansas on the way.  When we were at the studio, I saw some chili bowls that seemed a practical alternative when Mary Ann was eating soup or ice cream.  The sides seemed to be shaped in a way that might make it easier for her.  She picked out some colors that were very nice, she was very talented in the use of color. 

The Fat Cat actually was the fattest cat by far that I have ever seen in my life.  It owned the floor of the Jepson Studio.  It was friendly and not at all hesitant to engage anyone willing to scratch an ear or pet his gigantic back.  I think the answer was something like 27 pounds when I asked how much he weighed. 

We headed to the Jepson Studio again, this time with one of the plastic plates to use as a template.  He made a ceramic plate with the lip, in the colors Mary Ann had chosen.  It was just the ticket.  He made five more so that we could have six adults using the same plates, with no “special” plate for Mary Ann.  They are beautiful.  He made some high sided bowls that work even better than the chili bowls.  The plates and bowls were heavy enough that we did not need to use the piece of non-slip Dycem to keep her plate from sliding around. 

I have written about this in an earlier post.  I include it here as I review the various outings we took, adding quality to our days in spite of the limitations of the Parkinson’s. 

We enjoyed the trips out to Harveyville, but certainly liked best arriving at the final destination at Braum’s in Emporia where we had Pecan Caramel Fudge Sundaes.  Other times we picked up Friend and Thursday Volunteer Jeanne (once including Volunteer Coordinator/Friend Mary) to head out for a ride that took us to Harveyville and then through the Flint Hills to Alma.  A walk up ice cream shop had opened there after a while, so there was extra motivation to go that direction. 

One way or another, we were determined to get out of the house and so as much as we could while we could.  Mary Ann needed to eat plenty of calories, especially after she began losing weight last summer.  Whatever health issues might be associated with ice cream, they were trumped by the need for a little pleasure in a life that did not offer many. 

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

 

August 10, 2010

We Chose to Live!

Posted by PeterT under Daily Challenges, Help from Others, Life History, Meaningful Caregiving, Therapeutic Activities | Tags: , , , , , , , |
1 Comment 

The last dozen years could have been spent cloistered at home, a prisoner to Parkinson’s.  We chose instead to live to the limits of our physical ability, maybe a little beyond.  It was Mary Ann’s resilience and our resolve that allowed a quality of life that was satisfying and fulfilling. 

In 1999, the Kansas City Crew, including the two of us decided that a trip to Alaska was in order.  It was John and Carol’s 35th Wedding Anniversary.  Gary knew someone who had been a travel agent and still had access to the last minute cheaper fares on the Princess Cruise Line.  Marlene was impacted by ALS as Mary Ann was by the Parkinson’s.  We just did it.  It was a wonderful, memorable trip.  We flew to Anchorage, enjoyed a Farmers’ Market there, drove to a lodge outside of Denali, where we sat on a deck in the bright sunshine at 11pm.  We bussed through Denali, seeing the spectacular sights, Mt. McKinley, Moose, Dahl Sheep and Bear Scat.  That is as close as we got to spotting a Grizzly Bear — okay with me.

There was the obligatory stop at Talkeetna.  We walked the street and marveled at the size of the flowers.  We made one stop that provided a scene that doubled us over in laughter.  There was a huge statue of a Grizzly Bear.  From the back, his stance looked exactly like a huge guy standing there relieving himself.  There is a picture of the four of us (the guys) from the back as we lined up on either side of that bear and mimiced his stance.  No, I am not going to post that picture.  There are former parishioners who read this blog.  The KC Crew threatened to send a copy to the church when the pictures came back. 

We drove to Seward and boarded the ship.  Glacier Bay was breathtaking.  The aqua blue eminating from the cracks, the snapping of the glacier as it moved, the rumble of the calving, a seal sitting on an ice floe, a bright day with a crisp chill in the air made that part of the trip the most vivid in my memory.  We traveled the train the gold miners used at Skagway, the White Pass Excursion Train.  It is impossible to describe the expansiveness of the views.  Everything in Alaska is huge! 

We saw the Mendenhall Glacier, already then having retreated a mile or two from the observation building that at one time was at the edge of the glacier.  We ate our fill of grilled salmon fillets covered with a sweet brown sugar glaze.  There was fresh Haibut — who knew it could have so much flavor when fresh from the ocean. 

The Cruise Ship, as always, fed us huge gourmet meals multiple times a day.  One of the KC Crew is fluent in Spanish, since she is from Puerto Rico.  At one of our first dinners, Maria spoke in Spanish with one of our waiters.  It was not long before it was clear what she had said.   That meal and every meal after that ended with my receiving a large chocolate dessert, at least one, no matter what else was served as the regular dessert. 

Charlie and Marlene, Mary Ann and I hung together since on account of the wheel chairs, we moved at about the same pace.  The ship was accommodating, and most of the places we wanted to see were accessible. 

Near the end of the trip we watched the Eagles in great numbers hanging around the salmon canneries in Ketchikan.  We ended the trip, sitting at a restaurant on Puget Sound enjoying one of the best views of the trip.  We made some wonderful memories as we ventured to Alaska and back. 

That was our biggest and most dramatic adventure during the Parkinson’s years.  There were many smaller trips sprinkled throughout the last ten or twelve years.  I will spend some time in the next post or two describing some of them.  I need to savor the good times we had.  Thoughts of how debilitated Mary Ann became can be overwhelming at times.  Remembering the ventures out somehow seem to provide a bit of salve for the still open wound created by her death.  It helps to remember that we made the best of a difficult situation and chose not to allow the Parkinson’s to 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.

 

August 1, 2010

Finally, a Neurologist Who Understands!

Posted by PeterT under Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , |
[2] Comments 

We were shocked when even his Assistant knew what we were talking about when we described the symptoms of Mary Ann’s version of Parkinson’s.  KU Med Center was an hour away, but Dr. Koller had a monthly clinic at hospital right here, only ten or fifteen minutes away.   We could hardly believe it. 

Mary Ann’s symptoms had worsened as the medication regimen set up in the hospital in Tulsa before we moved to Kansas simply could not handle them.  In the very first appointment with the KU Med Parkinson’s Department Neurologist, Dr. Koller, he assessed her situation and added a medicine called Permax.  Permax is dopamine agonist. It works by stimulating dopamine receptors in the brain.  It makes the basic medicine, Sinamet, more effective. 

Within one month, the time it took to titrate the Permax to its therapeutic dose, Mary Ann’s symptoms were reduced to being barely noticeable.  That level of functionality remained for almost four years.  It was as close to a miracle as we have experienced. 

In addition, a group of ladies in the congregation welcomed Mary Ann and took a special interest in her welfare.  She developed friendships that ultimately grew beyond the fact that she was the wife of the Pastor.  Connie, wife of Pastor John who had retired from that congregation was also someone who chose not to be defined simply by the role.  She had set a good pattern for Mary Ann to follow. 

I found much comfort in seeing Mary Ann develop those friendships and experience new relationships.  She became much less intensely private and finally admitted that it was true when I told her “they like you better than me.”  She had always in the past contended that the church folks were only connected to her through my ministry.   That had changed with the folks at the congregation I was serving here in Kansas.  Also she realized that she had friends from former congregations who remained friends with her long after we had left those parishes.  They were truly her friends.  In spite of the Parkinson’s, the dozen or so years here before I retired seemed to be some of the best for her in some ways.   

We had found a townhome in a shared maintenance subdivision that was the right size (less than half the size of our home in OKC) with everything on one floor.   It had come on the market the day before.  We got in the first offer at full list price.  The realtor realized that we were very fortunate to get into a maintenance free area at that price.  It turned out to be a very wise choice.

Since Mary Ann could no longer work, eventually there was a small amount of disability income that she was awarded.  It helped us alter the interior of the home so that it was more user-friendly for Mary Ann.  Friends enlarged doorways for us.  A contractor who was a member of the congregation built a roll-in shower and extended the bathroom a bit to allow it to accommodate a wheelchair comfortably in anticipation of that need arising.

We replaced the carpet with one that did not resist her feet moving when they shuffled.  It was a firm enough weave to allow a wheelchair or walker to move easily.  Parishioners did the labor on finishing the downstairs so that live-in help could stay there if that was needed.  There were aesthetically pleasing grab bars that look like and can be used as towel racks placed strategically in the bathrooms, along with tall stools. 

We found a couple of portable electronic doorbell systems that we put together so that there were four buttons spread throughout the places where Mary Ann spent her time.  She could buzz me whenever she needed help.  All the various tools provided an environment that was comfortable and welcoming.  We made a very functional living environment for ourselves — with the help of a lot of parishioners.  We are in debt to all of them for what they have done to help us and care for us. 

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

 

June 22, 2010

Break In Next Door

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

Someone came to the door yesterday afternoon asking if I knew where the next door neighbors had gone on their trip.  I didn’t know they were gone.  Then he explained what he had just found.  The back door was standing open and there were a dozen or so beer cans on the back patio.  The cans were unopened.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

June 18, 2010

A Box of Ashes and It’s Over

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

What Mary Ann left behind in terms of physical matter is nothing without her.  Today”s Committal service was another simple reminder that she is not here any longer in terms of having a living physical presence.  It seems as if from the very moment she left, my gut already found acceptance that her departure is a fact.  We were privileged and pained to share those last moments with her when finally release came. That was convincing enough.

There is nothing that can be said that can communicate the sadness I feel.  My sadness is no more or less than anyone else’s who feels sadness.  Comparing one person’s to another is of no value.  My sadness is mine.  Lisa’s is hers.  Micah’s is his.  Denis, Becky, the girls’ feelings are theirs.  All I can say is there is a depth to this sadness that is beyond anything I would wish on anyone.  Those of you who have lost someone you love are likely to have a sense of the nature of that sadness.

Again, I will be all right.  In fact, I am all right in that I am experiencing exactly what is needed at this moment to allow survival.  If I tried to stuff the feelings, it would hurt rather than help.  I have a right to these feelings.  How can there be love if there is no possibility of sadness or pain on account of it.

Niece Diana and Al left this afternoon to return to Northern Illinois, where she, my Sister Gayle, and Joy, one of Mary Ann’s three best friends, will plan a gathering for a bit of worship, some remembering and some food, probably some time in July.

Shortly thereafter, Son Micah and Becky along with Granddaughter Chloe returned to their home in the Kansas City area.  Unfortunately, the Jeep they were driving all but broke down with noises threatening to call the trip to a halt at any moment.  Transmission issues are suspected.  Micah was planning to come back tomorrow with the truck to remove the larger pieces of equipment we used to battle the consequences of the Parkinson’s.  Add to that the problem created by water from the last storm invading their basement.  Becky had made a quick trip back to do some cleanup, but time and hot weather has given the mold a chance to really make its presence known.  Adding insult to injury is not even adequate to describe what they are going through.

Sunday afternoon, Son-in-Law Denis will leave for a work-related trip.  The Kids are consciously being measured in the process of leaving me here by myself.  I have a list of things for Denis and Lisa to do in the next day or two.  Assuming transportation issues work themselves out, Micah will be back also for a while.  It will help to get things in order here.  Lisa and Becky have been going through the clothes.  They pulled out Mary Ann’s favorite T-shirts to make throws out of them for the girls.  We will get Mary Ann’s clothes to appropriate places where others can benefit from them.

When I talk about things like that, the words sound very matter-of-fact.  Behind them are all the emotions you might guess would be felt as her things leave the house. I recognize that I can’t keep her.  That is settled.  Dipping my toe into the cold water of being without her a little bit at a time would only multiply the pain and extend it endlessly.

What I want to do now is remember.  Watching the online Tribute Video prepared by the funeral home (penwellgabeltopeka.com) is a very moving experience for me.  When I see Mary Ann sitting on the fender of the 1958 Chevy Impala, she takes my breath away.  I remember hardly being able to believe that she was going out with me.  I see the smile in those pictures that was rarely seen in her last years.  I want to remember the laughter and silliness, the arguments, the great times and the times staying married was very hard work. Forty-four years of marriage does not happen by accident.  Storybook romances are for storybooks and movies and popular songs.  I was crazy in love with her, but we irritated the hell out of each other at times.  The promises we made to one another in front of that Altar were absolutely serious.  They meant something.  Keeping our promises to one another emerged from our love and gave it nourishment so that it could grow.

As soon as the Kids have done what they need to do to help themselves and me take some steps forward in the transition, I will have time to do some grieving that I need to do by myself.

Last night did not include the sleep I had hoped it would since the very unpleasant esophageal spasms decided to spend the night and morning with me.  That problem emerges periodically and without warning or explanation as to why it comes at any particular moment in time.  After that was done, the day went well, given it is the day that we laid to rest the remains of my beloved wife.

After the committal, Son Micah treated us to a meal at Olive Garden.  John and Cynthia brought over a hot pot roast, potatoes and carrots along with side dishes and dessert for supper.  What a treat that was.  We are really getting spoiled in that regard.  Legendary cookie maker Lori left on our front steps two large containers of chocolate chip cookies, one batch without nuts for the kids.  Linda came by with a box of ice cream bars for the little ones (and the big ones) along with bags of homemade very good tasting chocolate chip cookies (we checked) in containers ready for the freezer.

Even receiving gifts of great food and wonderful desserts, have I told you yet how much I don’t like this?

I have been thinking more about whether or not to continue writing posts.  I don’t know yet for sure what I will do, but I think the need to write, if only to maintain my own equilibrium, will continue.  I have ceased to be a caregiver.  Other than reflecting on the years with Mary Ann, which I will continue to do for a time, I am thinking of starting a blog with a new address, still on WordPress if possible.  I am looking for a new address or url. Since I am starting a new life pretty much from scratch, any suggestions for a name to replace “thecaregivercalling.com would be welcomed.

 

Next Page »