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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