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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Count them, twelve prescriptions and three over the counter medicines make up Mary Ann’s daily regimen.  That translates into Mary Ann consuming twenty-one doses of that collection of meds most days. 

One medication is not supposed to be taken with food.  Another that is taken five times a day at two hour intervals, alternating between one half and one full pill, should not be taken with protein.  Another prescription is to be taken every four hours, a whole pill for the first two doses and a half pill for the last.  It is not to be taken too late in the day or if she is going to lie down for a nap (a need that comes without warning).  One pill is taken half in the morning and half at night.  Another is kept in her purse at all times to be used only if there is chest pain that is not diminished by taking a Tums, suggesting that it might be her heart.  She has to lie down to take it so that she doesn’t faint.  One over the counter med is to be mixed with juice or water and taken Tuesday, Thursday, Saturday and Sunday. 

One prescription is intended to raise her blood pressure so that she doesn’t faint.  Another prescription is intended to lower her blood pressure and help control heart pain. 

One prescription, when she first took it immediately after diagnosis, helped her keep movement, rather than freezing up.  It ceased to be helpful after about three years.  After a decade or so hiatus, it was added again to help diminish the extra movements produced as a side effect of the main medicine she takes to keep from freezing up completely.  Those extra movements are what Michael J. Fox often presents.  They are called dyskinetic movements, or dyskinesias. 

Side effects of the two meds that treat the movement disorder aspect of Parkinson’s increase the susceptibility to hallucinations.   The disease process itself of the Parkinson’s and Parkinson’s Disease Dementia produce hallucinations.  That means there is also a prescription to help diminish the hallucinations.  That is a medicine which can produce a fatal side effect in the elderly.  You tell me just how old we have to be to qualify for that side effect.

The brain chemistry of Parkinson’s produces depression.  Wouldn’t a person with Parkinson’s have to be crazy not to be depressed once in a while?  There are some prescriptions to help with that chemical imbalance.  The side effect of one is to make Mary Ann sleepy, but some of the others make her restless. There is something added to help her sleep. 

Two of the meds thin her blood and help reduce the likelihood of her having another stroke.  The lesion on her carotid artery has a rough surface — not a good thing.  The list of side effects of most of her medicines includes the matter of dizziness when standing up.   That means they interfere with her autonomic nervous system, reducing her body’s ability to adjust her blood pressure quickly enough when she stands up.  The disease process of the Parkinson’s and Dementia are complicit in that nastiness.  The result of the low blood pressure is that she faints, increasing the likelihood of hitting her head and having another stroke or breaking the skin and producing a major bleed. 

The newest prescription is a patch to be put on her back daily.  It is intended to help her memory and alertness.  It’s main side effect is vomiting.  I can hardly wait!  One additional side effect can be diarrhea, but then listed among the side effects of most of the rest of the meds is constipation.  She, of course, takes a couple of over the counter meds to counteract the constipation.   

I could go on!

Every Saturday my to do list includes filling the pill container, four compartments for each of the seven days.  Mary Ann used to do that for herself.  There was a time when she had even more prescriptions and multiple doses of some of them.  When she was having trouble getting them all organized and in their spots without missing some, she devised a numbering system for the bottles.  By the way, the numbers go up to eighteen, seven more than she has now.  The job of filling the compartments is now mine, but I still use her system.  I have to follow a meticulous routine with bottles set out in certain places on the table if there will be any hope of my getting the job done accurately. 

Once all the compartments are filled, we are ready for the week.  Each morning, one of the day’s containers is snapped out of the holder.  The pills must be distributed into the pill cup for the morning pills, taken with yogurt (with active cultures), juice and maybe cereal.  Pills from the other compartments are transferred into two pill boxes with timers, one set for two hours and the other set for four hours.   The timers beep at ten minutes, five minutes and three minutes before beeping for a full minute to tell us the time has come to take the pill.  It is a miracle that I haven’t thrown then on he floor and stomped on them to stop the endless beeping.  The bed time meds are left for another cup to be set out at the end of the day. 

Do I even need to tell you what the frightening error was that I made one dreary morning a few years ago?  I was sleepy.  I got Mary Ann to the table and filled the morning pill cup — with the night time pills!!!!!  It wasn’t until she was pretty much out of it and back in bed that I discovered what I had done.  I called the Pharmacist and we worked through the implications and what to do.  Gratefully, the doses were all low enough that no damage was done.  After that experience, I now make sure that all the lights are on, my glasses are on, I look at the pill container three or four times, and Mary Ann always counts the pills and examines them carefully before she takes them. 

Every once in a while, someone asks me what I am doing now that I am retired.  After they regain consciousness from my having whacked them up side the head, I explain gently that Caregiving is a full time job. 

The pills are a wonderful gift.  They have helped provide a quality of life we could not enjoy without them.  It is tough to live with them, but we can’t live without them. 

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.