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!

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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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. 

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.

First hugs from the Grandchildren answer that question.  It just isn’t easy!  Of the many things that are more difficult when traveling as a Caregiver, one of the most frustrating is the sole responsibility for packing. 

I remember hearing from single parents and those who have lost their spouse in death one of the most difficult challenges is making all the decisions without access to consultation.  There is no one to ask, should I let the kids do this or not — should I do that repair on the house? 

When packing for a trip, each has a certain amount of responsibility for remembering what to bring along.  There are endless decisions to be made.  What clothes should we bring so that we can be fitting for weather and formality of events.  If we bring one color/style of shirt or top, there need to be shoes and socks and slacks to match. 

Decisions are tough to make at best when one has the beginning stages of dementia and the other isn’t exactly on his best game.  I asked Mary Ann what she wanted to take along.  She wanted what I call her fancy pants and top.  The most hated black shoes with short heels are a part of that outfit.  I hate them (not too strong a word) because they are treacherous for her to walk in and they refuse to stay on her feet — I am chasing them constantly.  Their favorite trick is to pop off midstream in getting on or off an elevator, going in or out of a door.  Maybe it was due to a subconscious aversion to them that resulted in my forgetting to put in the knee high nylons that she wears with them. 

I work very hard at creating and sustaining certain rituals associated with medication so that there are no missteps in having what is needed, and administering it on time each day.  There are, of course, multiple prescriptions, many including more than one dose a day.  There are four compartments in each day’s plastic pill holder.  The morning one has six pills, the next one has six pills spread through the day, the next compartment has three pills spread through the day, and the night time compartment holds four pills.  There is also a powder to mix with water or juice four of the seven mornings each week.

All of it was in order for the trip, along with all the meds needed to refill the compartments for the last half of the trip.  At least that is what I thought to be true.  Saturday, after returning for the night to the extended stay motel, I began filling the compartments.  To my horror, there was no pill jar of Midodrine there.  That is the powerful med that raises Mary Ann’s blood pressure to keep her from fainting.  To stop cold turkey the next morning would be dangerous.  When I have adjusted that med in the past, the doctor has insisted that the dosage be raised or lowered a small amount at a time over many days. 

What had happened?  I had broken ritual.  The caps of the medicine bottles are numbered (Mary Ann’s idea many years ago).  Refills not yet in use have no numbers on the top.  I transfer the old cap to the new bottle when the old one is empty.  I had not put a numbered cap on the new refill of Midodrine already in use.  I grabbed only the numbered cap bottles.   

As I sat there Saturday night, looking at the pills, my panic shifted quickly to planning.  I am grateful for the national database maintained by Walgreen’s Pharmacy.  I phoned the nearest 24 hour Walgreen’s here in Louisville, KY.  They accessed our account in Kansas.  While we normally use mail order meds, the recent change in dosage had required a short term prescription at Walgreen’s.  There was a current prescription that could be filled here to rescue us from our distress. 

After I phoned and was told the refill would be ready in 45 minutes (about 11pm), I resumed filling the bottles.  To my chagrin, the Thyroid med bottle only had two pills left in it.  I suspect you can imagine just how horrified I was at my own incompetence.  This morning I suggested to Mary Ann that she might want to trade me in on a more competent Caregiver. 

This med will demand a new prescription from the doctor, since we have only the mail order prescription open.  The request is now in the hands of the Pharmacist who has assured us that by tomorrow afternoon it should all be worked out.  Gratefully, the two pills will cover Mary Ann until then.

The other travel trouble is less appropriate for publication.  It is in the area of the Caregiver’s role in waste management [see earlier post].  There has been a difficulty in that area demanding my hands on involvement for three days now, with two or three sessions each day.  Those problems seem much more troubling when dealt with away from home.

Since there is a need for a handicapped friendly environment in which to stay, the costs of traveling have increased dramatically.  Staying with folks in their home, no matter how gracious and welcoming they are, is often simply not an option.  Lodging costs add up at a frightening pace.  A trip that we have in the past made in one day, now demands an overnight stay, adding still more to the costs. 

It is a little embarrassing just how long it takes us in the morning to get ready to leave the room so that we can start the day’s activities.  The usual multiple times up at night make early rising a less than satisfying option.  The result is that there is not so much time for doing things together each day, the object of the travel. 

While this is a litany of struggles that come with traveling, the hugs more than compensate –  the smiling, enthusiastic little faces drain away the frustration and replace it with joy and satisfaction. 

Is traveling worth the trouble?  Yup!

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.

I am writing this post at my Daughter and Son-in-Law’s computer after driving for eleven hours yesterday to get here.  The word “disincentive” has come to be a regular in my vocabulary.  The disincentives to traveling with someone who needs lots of care are legion.

There is a powerful ambivalence that comes as the trip nears.  Memories of struggles on past trips loom.  There was the trip to that Elderhostel held in Tucson, Arizona one winter.  We flew since the drive would have been a couple of long days.  In my mind, the air quality on the plane brought it on.  Four days later I called the children to fly in for what was thought could be Mary Ann’s last night.  She recovered.  Nonetheless, that memory brings to mind the distinct possibility of having problems away from home.   A strange and unfamiliar hospital, new doctors, the communication of a complex of illnesses about which records lie a thousand miles away, the usual support system unavailable all compound the stress felt by the Caregiver.

Memories of driving for miles trying to find a one-holer, a single-user bathroom, or searching for someone willing to guard the multi-stall bathroom while the two of you spend what seems like an eternity in the restroom, those memories are firmly entrenched and surface immediately at the first thought of heading off on another trip.

I think most of us who are full time Caregivers have worked hard at developing routines that help us anticipate and deal with the many daily struggles that come with the territory.  We have found what works.  We have the tools handy in the places we will need them.  We know to whom to turn for what.  When we are in another place, routines no longer in place, everything is harder.  What we would have taken in stride at home becomes a major challenge.  There is added stress due to the increased vigilance demanded by a new environment filled with the unexpected.

The destination of our travel may not be user friendly for those with physical limitations.  If we are staying in a home with family or friends, the chances are there will not be all the accommodations we have provided at home as we have worked at making it more accessible over the years.  As Caregivers we have all come to realize how easily a few steps or a curb or a gravel drive or cramped quarters in a bathroom or a low toilet stool or any number of seemingly minor challenges can become major barriers.

Eating out in public places during the travel and, perhaps, at the destination is not a time to relax and converse and rest from the trip.  Finding a spot to park, getting the wheel chair out and through the doors of what is usually an air lock arrangement, two sets of doors with a small space in between sets the tone for the mealtime.  Figuring out what to order, dealing with the logistics of finding a table and getting the food to it in a fast food restaurant are more difficult that would be imagined.   Then, unfortunately, I get embarrassed when the food as it is being eaten ends up in a mess on the table, lap and floor.  I consider it my job to leave the table as I found it.

The disincentives to travel are legion.  The challenge is to put the disincentives in perspective when deciding whether or not to travel.  Mary Ann is less conscious of the disincentives.   She does not embarrass as easily as I do.  She seems less conscious of the difficulties we encounter.  I assume that part of the reason for that is that I am the one who does the physical tasks associated with getting her needs met.

There are incentives to traveling.  This trip brings us to two of our Granddaughters.  That trumps pretty much all of the disincentives for traveling here.  Traveling gets us out of those same few rooms in which we are spending our whole lives.   Traveling gets us away from one more Law and Order episode, Spaghetti Western, session of self-help on Oprah.  Traveling gets us in contact with real, live, human beings, able to converse with us.  Traveling exposes us to the beauty that surrounds us but is out of sight because it is on the other side of the houses surrounding ours.

We have worked at determining where the best bathrooms (single user) are when traveling.  They include Subways, Taco Bells, newer Casey’s General Stores, smaller convenience stores, Arbys,  BP station (if there is not an attached fast food restaurant).  Those places don’t always have a bathroom suited to our needs, but often do.  We have learned what foods are more and less challenging to handle.  We have an old catalog case filled with first aid supplies, straws, wipes, anything we can think of that we might need, but might not be readily available.  We grab that case every time we hit the road for an overnight.

You remember that often repeated quote attributed to someone who is looking back on life regretting not what he did but rather what he did not do.  There is only so much time left for any of us.  With a chronic illness in the family, mortality is clear.  Whatever we will do yet in our lives needs to be done now if it will be done at all.

Of course we need not to tempt fate and be foolish about what we choose to do.   If quality of life actually is more important that quantity, we do need to stretch the limits a bit and take the risk on traveling.

Shall we travel?  For Caregivers, it is far easier not to.  Logically speaking, the disincentives may seem to outweigh the incentives.  The challenge is to put in healthy perspective both disincentives and incentives.  Weigh them carefully and remember, we don’t have forever, we have now.

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.