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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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!

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Traveling fools that we are, we are heading out again tomorrow morning.  Having just returned from Kentucky last Monday, the preparations seem to be going more smoothly than last time.

This time we are heading for the most beautiful Bed and Breakfast that could be imagined.  There are ten rooms (one especially for handicapped), all of them facing a beautiful arm of Lake Hamilton in Hot Springs, Arkansas.  Each room has its own patio or balcony.  There is a library, a reading room (both with fireplaces), a heated and cooled sun porch with games and puzzles and areas for conversation.  The decor is elegant without being pretentious.  There are many watercolors by local artists, one artist in particular.  The quality of the art is impeccable.  There is a garden that spills down the terrace toward the lake.  It is laced with paths and a stream divided by waterfalls, the water from a wonderfully gurgling fountain at the edge of the patio outside the dining room.  The garden is filled with trees and blooming shrubs and Azaleas.

The Owners and Staff are welcoming and engaging.  The breakfast is, of course, many courses, all tasty and what I would call comfortable gourmet.  I just made up that descriptor, but it is the only way of saying it that makes sense to me.  The 4:00pm wine and cheese and freshly baked cookies, sometimes fruit, is a relaxed time for conversation around the serving table or for eating on the patio listening to the fountain and the birds that visit the multiple feeders.  By the way Chocolate Wednesday is a special treat!

What I just described I am remembering from a visit last October.  That trip was a retirement gift from the Congregation that has meant so much to us in these last dozen or so years.  Since one of the owners of the Bed and Breakfast is an active Pastor, there are special rates for those of us in the business, making this trip possible for a pastor living on a pension.  This B&B is called Lookout Point – Lakeside Inn,

I am excited about this trip.  Part of the reality of Caregiving is that anything can happen in the next few days as we make this trip.  Tomorrow something may emerge that makes it impossible to go.  We may have any number of problems as we travel.  None of that dampens my enthusiasm.  I cannot know what will happen, so I will enjoy what I can, while I can.  Mary Ann enjoyed our last visit and is motivated to make it work.

As always the preparations are many.  Choosing clothes to take along is a special challenge.  As is the case each morning, I gather as many options for clothing as I can hold and carry them to her as she sits on the edge of the bed.  Often it takes what seems to be an interminable amount of time for her to work back and forth through the clothes as the hangers dig into my fingers.  Deciding on clothes for six days of travel is an exhausting experience for the one holding the clothes.

There are pills to be prepared and put in the plastic seven day, four section each day, pill holder.  Then the bottles of pills need to be along in case anything happens to the ones in the daily container.  There are meds for the two skin cancers that have just been removed so that they can be treated properly to enhance the healing process.  One takes Polysporin and a band-aid each day, the other needs to be dabbed with Peroxide three or four times a day.  The Exelon patches need to come along. The black case with liquid band-aids to deal with the Plavix thinned blood if there is a cut comes along.  There are straws and bandages and wipes and adhesive tape, boxes and tubes and containers filled with all sorts of things that have been needed at one time or another in the past.  All are contained in that black case.

There is the booklet with all the medical information including a list of medications, insurance information, doctors names and phone numbers, her living will.  There are snacks to be gathered for the trip.  There are paper towels for the inevitable spills as we travel.  Both wheel chair and transfer chairs will come along.  We may add the bedside commode if there is room. Those who are in the stage of life that includes young children know how hard it is to gather all that is needed so that the odds of the trip going well are increased.  There are never any guarantees about how it will go, no matter how many preparations are made.

Every time we do this, the usual questions come to mind again.  Should we be traveling away from the security of home and familiar medical resources?  Is it more trouble than it is worth?  What if something happens!!

I guess we have decided that if something happens, it will happen.  We can’t control that.  We can sit at home and wait for it to happen so that if it does, we will be close to the familiar.  We are simply choosing not to sit and wait.  Our reasoning is obvious.  We have what appears to be a limited time remaining with enough mobility to even attempt traveling.  We will do it while we can and not do it when we can’t.  We think we still can, so off we go!

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.