They are standing outside the bathroom door with their little legs crossed.  Maybe that is exaggerating a bit, but not by much.  Two of our day trips included Granddaughter Chloe.  On the first one, we headed out to the Rolling Hills Zoo outside of Salina.  We spent many hours on the road in doing that round trip.  It was worth it.  The Zoo is very large with spacious areas for the animals.  The habitats are very nicely done, carefully mimicking as much as possible the environment that would be natural to the animals in it. 

It was easy to negotiate.  There was a tram with a spot for the wheel chair.  The paths were wide asphalt walkways that were very user friendly, except for the hills that were rolling up and down between displays.   Chloe loved it.  Mary Ann was not so much of a zoo person, but she seemed to enjoy it too.  It was a warm, but pleasant day.  They had ice cream in the concession area.   Enough said.

On that trip we did not have time to use the other half of our ticket, the one for the large building with displays of stuffed animals, and animated people in appropriate environments.  We had heard from others who had been there that the displays were worth seeing.   We made a second trip out there with Chloe later in the summer of that same year.  It was on the second trip that Mary Ann needed to use the bathroom after we had spent an hour or so walking around the displays.  The women’s rest room was huge.  There was a long wall lined with stalls.  Clearly they were prepared for large groups. 

When we entered the women’s rest room, after getting permission from the woman at the ticket counter, Chloe stayed at the door to keep people out while I helped Mary Ann.  It turned out to be a major intestinal event.  A great deal of time was needed to accomplish the task.  I decided to go out and tell Chloe that it would be a long time and check to see if there was anyone who needed to use the restroom.  There was — more than anyone, lots of anyones.   It was an entire busload of Second Graders, all in need of using the bathroom.  The girls were huddled outside the door. 

I decided to ask Chloe if she would just stand outside of the handicapped stall Mary Ann was using while the girls used the restroom.  Mary Ann just sat there until they were all done and the teacher had given the all clear for me to go back in and help her finish. 

It was the bathroom needs that complicated travel, but after surviving the busload of Second Graders, we were somewhat emboldened to head out in the car. 

Over the years we had made regular trips to Northern Illinois where we both grew up and had family.   As the disease became more difficult to manage, we were not always able to make the ten hour trip.  The last time we made that trip, we broke it up by staying in a motel and taking two days to do it.  My side of the family had gatherings every year or every two years around my Mother’s birthday, even after she was gone.  MaryAnn’s side of the family did not get together often for major reunions since two of her brothers were deceased and the third Brother had alienated himself from the family.  Whenever possible we would get together with Sisters-in-Law and as many Nieces and Nephews as could come.  We enjoyed those gatherings very much, as well as the reunions with my Brothers and Sisters and their families. 

One special treat was getting together with Mary Ann’s three friends from Fifth Grade on.  Sometimes we would get together with spouses also.  It was always wonderfully entertaining to see and hear the four of them together.   Mary Ann laughed more in a few hours with them than she did in the year or years in between the visits.  One way or another, we would be sure that the four of them had some time without any of the Spouses.  I don’t know what they talked about, but that is most certainly in the “better not to know” category. 

The three of them came to visit Mary Ann here a number of times also.  All of us recognized the power of healing those visits had for Mary Ann.  No matter how much she had declined, when they came, some sort of switch flipped and she perked up, became alert and communicative.  The last time they visited was after she had been enrolled in Hospice.  I described that visit in an earlier post.  We all laughed.  She had the closest I had seen to a belly laugh while we  sat at the Baskin & Robbins. 

Whatever toll the Parkinson’s took, it did not take away family and friends.  Travel was not easy, but as long as we could manage it, we headed out.  Some were day trips, some were long trips.  There will be more to come in the next few posts. 

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This morning she said, “Let’s go some place and have some fun.”  Further interaction confirmed that she meant some sort of major trip this summer.  As we talked, she said, probably nowhere high [in elevation].  We had begun arranging through friends the use of a condo in the mountains of Colorado a couple of years ago.  After consulting with the Cardiologist, it seemed unwise to tackle a high elevation, putting stress on Mary Ann’s heart.

In the movies, a bucket list makes all the sense in the world.  Who could argue with doing anything and everything you have wanted to do before dying when death seems to be coming in the near term?  In the movies, whatever stands in the way can just be written out of the story line.

The dilemma in deciding what to do in response to the request for a major trip for fun, is that there are conflicting realities.  Each has validity.  One reality is Mary Ann’s view that is no longer reasoned through the executive function of her brain.  To her, the fainting, bathroom issues, problems with eating, falling, sleep problems, access to appropriate medical care, all are of little or no consequence.  She lives in a world in which she is constantly protected by those of us around her, taking care of whatever problems arise.  In that reality, there are no barriers to traveling wherever and whenever, just having fun doing all sorts of things.

There is validity in that view.  The various assessments of her physical/mental situation suggest that there may not be many years left to do all sorts of entertaining and enjoyable items on our wish list.  Assuming that is so, we need to get out and do anything and everything we can, as soon as possible.

The other reality is that we are on a roller coaster in which there is no telling if Mary Ann will be alert or completely out of it, whether she will be able to stay awake or will crash suddenly, whether she will be able to stand and transfer to the toilet stool or will crumple in a dead faint.  We don’t know if she will be able to eat or sleep or discern reality from hallucination/delusion/dream.  In the other reality, I am the one who has to figure out how to deal with whatever comes when it comes.  Not having the resources that are easily accessible here at home when problems come is a real issue.  This is not a movie.

The question is, how do we balance what is actually so in our little world with what we would like to be so.  My problem is determining how many of the barriers that I see are more my own concerns over what might happen rather than real barriers.  Now that we have made decisions associated with the transition to Hospice Care, the fear of not making it to a hospital in time may be unsettling, but it is no longer the primary issue.  We have already faced that demon and stolen its power.

I don’t want to stand in the way of Mary Ann having as good a quality of days as possible in these next months or years.  I also am not infinitely good and capable and strong and filled with limitless endurance for whatever may come.

In a recent thread of posts by members of the online group of Caregiving Spouses of those with forms of Lewy Body Dementia, there were some who talked about the struggle to do enough to provide adequate stimulation in their Loved Ones’ lives.  Some in that group have seen how others can draw the best out of their Loved Ones as they respond at a level referred to as “showtime.”  We have just come off three weeks of visits by friends and family.  Mary Ann has been at her best much of that time.  She has been engaged in conversation, she has laughed, she has connected and initiated interactions.  As Caregivers we want to provide that sort of quality all the time.

We can’t do it.  We can’t provide enough to compensate for their limitations.  Last night Mary Ann did not sleep well.  Today she made it through lunch, then crashed, fainting so much that she just had to lie down.  That was at about 12:30pm.  I tried to get her up two or three times, but it was 5:30pm or later before she got up.  We got some Dairy Queen, she came home and crashed again.  No matter how romantic it sounds to check off items on a bucket list, there are some parts of our reality that we can’t change.

For now, my intention is to think as creatively as possible about options for places that might be fun for Mary Ann.  I am willing to stretch beyond my comfort zone what we try to do.  She has mentioned the Quilt Museum in Paducah, Kentucky as a possible destination in the past.

…I have just been “scared straight!”  My comments above about two realities have just ceased to be a balanced weighing of conflicting views.  I have spent the last hour (not sure, lost track of time) in an intense battle with active intestines, in a fainting, jerking stiff body, fighting against every move to try to keep what was coming out off clothes and into its designated receptacle.

Mary Ann is only 113.5 at last weigh-in, but it took every ounce of strength I have to try to manipulate her into position, hold her up while trying to clean her up, while she would stiffen in a sort of mild seizure, or go completely limp becoming dead weight, all happening while trying to take clothes off or put them on or wipe off her body where it had spread or the toilet seat so that it didn’t spread again when she fell back down on it in a faint.

This was about as tough a time as we have had with that activity.  I describe out loud the difficulty I am having and my frustration with it as it is happening.  That is part of my getting out what would be tougher to handle if I tried to keep it in.  A couple of times when she happened to be conscious she told me to calm down. My most frustrating moments are the times her body is fighting against what I am trying to do to get her seated so it will go where it should go.  Once, she even said I should put her some place, to which I immediately responded, “I am not putting you anywhere!”

I have now rinsed the matter off Mary Ann’s pajama tops and bottoms in fresh toilet water, put them in and started the washer.  I have washed my hands fifteen times.  Cleaned the stuff from under her fingernails, gotten her in clean clothes and into bed.  There was one aftershock that included the fainting and all the rest except (gratefully) for the “stuff.”  She is again in bed.  I have taken a couple of Ibuprofen to take the edge off the back and muscle pain from the physical exertion.

You have just had a peak into something that is routine in the lives of many Caregivers.  Others in the online group have to do what I just did but with someone who outweighs them by a hundred pounds.  I have no idea how they do it.

Mary Ann will be fine; I will be fine.  It is just another day on our roller coaster ride.  This encounter with one of our realities has certainly suggested that traveling a long way may not be a very good idea.  It is hard to imagine doing what I just did, but in a motel bathroom.  At the moment, our bucket has no room for a list, it is full of poop.  Tomorrow is another day!

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I am at the computer in the upper lobby of Lookout Point – Lakeside Inn in Hot Springs, Arkansas.  We made it!  As always the last hour or two includes lots of winding two lane roads, but we are here and settled in.  Mary Ann is sleeping soundly.  At least she was when I left the room.  The television show “The Closer,” which is pretty much her favorite at the moment, is on the television, so if she does wake, she should be content.

While we ended up here past the time of the afternoon wine, cheese and freshly baked sweets, it was still out.  We both enjoyed a glass of wine, some cheese and a homemade Macadamia nut cookie.

After bringing in all our clothes and paraphernalia, getting Mary Ann changed for bed and settled in bed, I headed out to forage for some snacks.  There are endless goodies available in an area off the downstairs lobby.  I wandered through the library and glanced at some of the books.  There is a great section on Spiritual Formation.  Mary Ann and I will check out the videos together some time tomorrow.

After a trip through the small reading room which is an area with comfortable chairs and a fireplace, I looked around the large sitting area that includes lots of games as well as space to just sit and look out of the windows at the bird feeders, the garden and the lake.

Then I headed out to the patio to sit under the overhang to avoid the rain, while listening to the fountain/waterfall and look at the lake framed by the lights on the other side.  Numbers of Canada geese squawked loudly periodically as I sat soaking it all in.

The trip from the motel in Shawnee, Oklahoma went reasonably well.  The first two and a half hours was on Interstate 40.  In spite of construction at various times, the traffic was light and we made great time.  The weather was overcast but dry for most of that first half of the trip.

From Fort Smith to Hot Springs is a little more challenging and at the same time more interesting.  It was raining lightly throughout the rest of the trip.  There was never enough rain coming down to create any problems in driving.  What the weather did provide were some spectacular views of clouds covering the tops of some of the taller Ozark hills and spilling down the sides among the trees.

There were times when we looked at thick white clouds just about even with us in elevation.  Some were close to the road as we passed.  The cloudy weather muted the fall colors, but sometimes the colors were visible, contrasting with the white of the brightest clouds.

The trees close to the road as we traveled were very colorful.  What was most striking to me what the contrast between the colors of the deciduous trees and the deep green of the conifers.  The green was darker and more vibrant because of the contrast with the palette of colors interspersed between them by the changing leaves of so many different species of deciduous trees.

One treat that will be appreciated by those of you who are Caregivers.  At one point, we stopped for a break after a long time driving.  I can’t really remember the last time we stopped at a Pilot Truck stop, but that is what seemed most promising when we needed to stop.  The treat was that as we were checking the restroom situation, a staff person happened to be nearby.  He asked if he could help us find anything.  I explained what we were doing.  He responded by offering to get a key to one of the showers for us to use.

What a Godsend!  The little shower room had a toilet stool in it and just enough room to maneuver the transfer chair and get Mary Ann’s needs met.  I will now keep the Pilot Truck stops at the top of the list of places to take a break.  There was also a Wendy’s attached to the building, so we were able to get a snack to keep us going for the rest of the trip.

All in all, we seem to be off to a good start.  As always, anything can happen, good or bad.  We will hope for the good and deal with the bad!

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I am at a computer in the business center at a LaQuinta motel in Shawnee, Oklahoma.  We put on CD’s of short stories.  They were a little strange, but kept our attention as we traveled.  It is a clear shot to Oklahoma City on an excellent Interstate with minimal traffic.  The Flint Hills remain a spectacular sight.  

The rest area at which we stopped had family bathrooms available.  What a Godsend!  My stress level plummets to nothing when I see that we have a family bathroom available rather than trying to find someone to guard the door to a busy women’s restroom while I help Mary Ann. 

It was wonderful to surprise good friend John by appearing at this door for the birthday open house on the occasion of his sixtieth.  I had sent the return comment card ahead in the mail since I wasn’t sure that this would all work out, and I wanted to mislead them into assuming that we would not be there for the open house.  Packing the car the night before actually worked.  We got off at a reasonable hour and made to his home within minutes of the start time of the open house. 

By the way, we were able to include a stop at the Braum’s Dairy Store in Blackwell, OK.   Mary Ann got two scoops of Butter Pecan — there is none better.   I had a two scoop Hot Fudge Sundae covered with salted pecans!  Just to make clear that we know the ice cream decorum — it was after twelve noon (by minutes).   All is well with the world!

It was a treat to see Peggy and reconnect after thirteen years.   I had the joy of being one of three pastors who officiated in their wedding.  After having such a clergy presence, they are assured of being stuck with one another for many years to come.  Somehow, I think they are okay with that!

A special treat was getting to see and talk with John’s Daughter, Hope.  Since I lived in their home for the first few months of my ministry in Bethany, Oklahoma (an inner suburb of OKC), I got to know Hope and Joel during their early years.  Hope was fiesty!  That, my friends, is an understatement.  She was always intriguing and someone to be reckoned with even as a child.  The energy and intelligence and drive were apparent from the outset.  She has turned into an engaging adult who is realizing all that potential — of which the pinnacle is about as cute and pleasant little twenty-one month old little boy as could be imagined.

There was one surprise for me.  After a time, Peggy came out with what was obviously a Christmas present, wrapped nicely, topped with a flat bow that was covered with dust, as in a well-aged bottle of vintage wine.  It turned out to be a Christmas present that they had gotten for me, wrapped and marked with my name in 1996!  By the time it was ready to be given, we had already moved away.  It just never found its way to me — until now.  It was a nicely framed wedding picture of John and Peggy, looking young and excited as they began a new life together.  The picture, of course included the three clergy who joined forces to set them on the right path.

While the folks who attended were from John and Peggy’s life after we moved away, one blast from the past was visiting with Barry, a fellow pastor — who is the consummate smart aleck.  What great fun to see him again and pick up with the bantering as if no time at all had passed.  Barry lost his wife only months ago after a long and very hard battle with diabetes.  This particular experession of the disease did its worst for almost as long as Mary Ann has been dealing with the Parkinson’s.  Pat lost her sight (for the most part) pretty early on.   Barry also has spent many years doing full time ministry and full time caregiving.  There is an instant connection among those who fully understand the dynamics of caregiving from the Caregiver’s perspective. 

After a stop at a Denny’s, eating too much food packed with unhealthy carbs, we have settled in at the motel.  Shawnee is about an hour closer to Hot Springs than John and Peggy’s home in Edmond.  We will not have to drive in any of the OKC city traffic tomorrow.  The balance of the trip should be pretty manageable — although I would not presume to predict how well tomorrow will go.  I am just grateful that we have made the first day without serious problems. 

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This time I have made sure that we have all the back up bottles of medicine. The last trip brought more than one medicine crisis — trips to the local 24 hour pharmacy in Louisville.  This time we are heading to Hot Springs, Arkansas.  I have just done something almost unheard of in my travel pattern.  Everything is packed and most of it is already in the car.

I am not sure I can remember when last I actually packed before the morning of the trip.  As I have mentioned in former posts, packing is no small task when packing for two, one of whom is not able to participate in the process.  Portions of the day were spent bringing Mary Ann’s clothes out of the closet for her to go through.  Last trip, she was not pleased that I had managed to forget the nylons that went with her fancy pants outfit.  By the way, on the last trip, those pants caught on her wheel chair when she was sitting down and obtained a very large vent where the seat of tht pants should be.  So much for those fancy pants.  I think we have covered the bases with clothes for warm and for cool.

The black case is a must.  That is the large catalog case with first aid supplies, straws, wipes, plastic silverware, Clorox wipes, Miralax, Tums and anything else I can think of that we might need along the way.

We have been to the library to pick out a few books on CD to choose from as we travel. One is already loaded into the CD player in the car.

There is a bag of snacks, granola bars, bananas, licorice, and breakfast fruit bars.  Sometimes when we stay in a motel, we don’t make it up in time for the breakfast hours and need items to eat so that the morning pills aren’t taken on an empty stomach.

We have lots of the disposables along.  The intestinal issue is not completely resolved.  I am expecting there to be a major production some time soon  That is as delicately put as I can manage while revealing one of the significant challenges Caregivers often face.

I took the role of the bath aide this morning so that we would start the trip at our best — squeaky clean.

We have far more along that would seem necessary for a three night stay at a Bed and Breakfast.  Since the trip is eleven hours one way, we need to break it up into two days for the trip there and two days for the return trip.  We have on occasion had to lengthen a trip for one reason or another.  The one to Tucson, Arizona a few years ago was lengthened by a few days in the hospital.  Those experiences remain in the back of our minds each time we set out on a trip.

And so we are heading off for another adventure.  We cannot know how it will go.  We know far too much about the possibilities for how it might go.  We have tried to prepare to the degree possible.  I just added the booklet we have made with all the pertinent information, doctors’ names and numbers, Durable Power of Attorney for Health Care, Medicine list, family contact information.

With all the preparations made, we actually will relax and enjoy the trip to the extent that circumstances allow.  If there are problems, we will deal with them.

We will be gone for about a week, so the posts will be few to none.  There is a computer to which we will have some access at the Bed and Breakfast.  I hope to provide an occasional update, whether anyone is interested or not!

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She got out of the car and walked up the steps into Dick and Dee’s house.  It was a bit of a walk, but rather than stopping to get the transfer chair from the van, we just walked into the living area to sit down.  I brought the transfer chair into the house, but from then on, it was never used.

We talked for a while.  Dick is also a retired pastor, and Dee has been very involved in church activities.  Not only that, but they both, especially Dee, are avid birders.  They love the wildlife and the outdoors.  They have built a heavenly respite with a wall of windows with deck and bird feeders framing the view of a very large pond surrounded by trees.  Between family and church, birds and other wildlife, we had lots to talk about.  You should hear Dick’s raccoon stories.

We visited with our Nephew, Tom, who shares the love for birds, the flora and fauna.  Our Niece, Jill and her three boys came by.  It was a very pleasant and satisfying mini-family reunion.

Then came dinner.  Much to my dismay, the lavish meal of mostly homegrown, nourishing and tasty foods dramatized the paltry fare to which Mary Ann is subjected on a regular basis.  We both ate voraciously, realizing we would be back at our usual table soon.

Later we went next door to see Jill’s newly built home.  Mary Ann walked outside to get in a golf cart that delivered her to the garage of Jill’s home.  That is when the walking began in earnest.  The house is huge, well-designed, woodwork done by Amish artisans.  We walked from one end to the other, enjoying what would put to shame most of the Home Network’s best.

After touring the house Mary Ann walked back to the golf cart, rode to Dick and Dee’s place, walked into the house, and we talked some more.  Then she walked out to the van so that we could head back to the motel.

Those of you who followed the events of a number of weeks ago will appreciate the significance of that walking.  After going through a time when Mary Ann could walk only a few steps, sometimes not even that before fainting, this was a pretty dramatic display.  I conditioned myself to jump up and either help her walk, or ask her to sit back down so that I could move her from one place to another in the transfer chair — seeking to avoid a fall that could do damage to her.  As this roller coaster we are on moves up for a time, it seems that I need to re-condition myself to just let her walk.

The harsh reality is that tomorrow may bring another dip in the ride — but maybe not.  It is a challenge to re-train my auto pilot to respond differently when she gets up.  It is encouraging to see her walking so well.  My hope is that the more she walks the better she will do at it.  She has gone down but not very often.  For the most part, I still stay very close, often with my hand lightly on the gait belt or holding her more tightly.  If she seems to be walking well and she is on carpet, I back off.

A few weeks ago I was wondering if we were beginning the endgame.  That thought has retreated for now.  The fall weather is energizing, and Mary Ann seems have perked up also.  When we were walking into the house, having just returned from our week long trip, after 11 hours on the road in pouring rain, she said “that went pretty well.”  Last summer I thought our traveling days might be over.  At least for now, it seems not be so.  In two weeks we head for our very favorite Bed and Breakfast in Hot Springs, Arkansas, Lookout Point – Lakeside Inn. [http://www.lookoutpointinn.com/]  There is no knowing what will be so when the time comes to load up and head out for that trip.  For now, we will just enjoy the moment.

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.

After the litany of travel challenges in my last post, we have decided to add two days to this trip!  Are we crazy?  Maybe.  The challenges have continued. Tonight, as I was doing some pre-loading of the car to save time in the morning, I changed shirts to take the one I was wearing to the car.  The moment the door of the room closed behind me, I realized what I had done.  The keycards were still in the room since I had taken them out of the pocket of that shirt.

I was locked out!  Under normal circumstances, the solution would be simple.  Knock on the door and ask Mary Ann to open it and let me back in.  She was lying on the bed no more than five or six feet from the door.  I knocked on the door loudly, calling her.  Finally, I heard her voice.  She told me to wait a minute.  After a short time, I called out to her again.  That went on for a few minutes until finally she said, I can’t get out of bed.

I ended up downstairs at the desk.  The young man behind the counter had to give me a master keycard.  Mary Ann was on the bed on her back simply uable to coordinate getting up to turn the handle so that I could get in.

In the morning, Daughter Lisa will arrive with Granddaughter Ashlyn fairly early in the morning by our standards.  Lisa will give Mary Ann a shower, take her shopping and then to lunch.  I will take Ashlyn on her class trip to the pumpkin patch.  Those activities are the reason for adding one day to the trip.

Since we are only two hours away from my oldest Brother, Dick and his wife, Dee, we decided to travel there, get a motel and visit with them for the evening. That is the second day we are adding.  Neither Mary Ann nor Dee were up to traveling to the family gathering in Northern Illinois this summer.  This is a chance to make up for missing that time together.

The next two days will reveal whether or not it was wise to extend the trip.  So far we have dealt with the problems encountered as they have arisen.  My hope is that whatever is yet to come will be manageable.  We will take it one day at a time.  Gratefully, that is exactly the rate at which it comes, whatever it may be.

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.