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.

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In the Caregiving business, it becomes evident very quickly, that our lives (all of us for that matter) revolve around activities of our alimentary canal — input and output.  It is how we survive.  There is input that brings with it the raw material from which is mined fuel for burning in cells of one sort or another so that we can simply stay alive — be who we are, do whatever it is we do.  Then there is what is left after the fuel has been mined.  In Picher, Oklahoma, there are toxic Chat Piles, a Superfund site destined for cleanup.  The output must be dealt with.  It is called Waste Management. 

For humans the management of input and output is primary parent activity.  Those tiny people after they pop out have clear goals in life: eat, sleep, fill their pants and cry (or coo) to manipulate the big people in their homes to manage their input and output needs. 

As adults, we often collaborate on the input.  Someone or both provide the resources for purchasing the food to be prepared for consumption.  There are any number of options for getting the food ready, maybe one does the grilling outside and the other deals with the range and oven.   For the most part, we do our own personal waste management. 

When Chronic illness joins the family, not only does full responsibility for input become the responsibility of the Caregiver, but sometimes output, waste management, becomes the full responsibility of the Caregiver. 

At the risk of becoming indelicate (there is nothing delicate about waste management), I now am in charge of output in our household.  Understand that “in charge” does not connote control of when, where and how much, just dealing with it when it does come. 

There are certain rules provided on the training CD.  One is that there will be multiple expulsions of wheat colored liquid during the night.  Those events demand help from the one in charge of waste management, so that what is expelled ends up in the bedside commode (Medicare will provide that tool).  By the way, the color is important.  Too much color (dark amber) suggests dehydration and the need for more liquid input.  Red means it is time to call the doctor. 

The rules say that at least one of those trips to the commode will happen during  the Caregiver’s deepest sleep, that deep sleep we are told must not be interrupted if we are to stay healthy and functional.   Some nights there are two or three trips, other nights many more.  It is no wonder that sometimes Caregivers are not always sharp and bubbly and upbeat about how things are going.  Anyone who tells a full time Caregiver to buck up and stop whining, other people have it worse, any such person may be harmed physically — at the worst it would be categorized as justifiable homicide. 

My task is simpler than those who care for male Loved Ones.  It is far easier to contain liquid waste that drops into the commode than that for which aim is more of a challenge. 

Then there is the management of solid waste.  Those who have Parkinson’s or some other chronic illnesses may no longer have the dexterity to reach the place most in need of being reached when dealing with output.  That is where the one in charge of Waste Management springs into action.  (That just sounded silly, but please bear with me.  I am trying to say all this in a way that doesn’t gross anyone out or embarrass the ones who to their horror are in need of such help).

The rules of solid waste management are these:  it comes when it comes, and often without warning.  Almost without fail, it comes in the middle of a meal.  I suspect I can move that transfer chair (wheel chair with small wheels for indoor use) from zero to thirty-five (the indoor speed limit at our house) in a matter of seconds — pants down and seated measured in fractions of a second.  My motivation?  Need I ask?  As the one in charge of waste management, it is my responsibility no matter where it lands.  By the way, it has come to be so, that performing my   duties does not impact my ability to finish eating the meal.  Sometimes I wish it would — every time I step on those silly scales at the doctors’ offices, the ones calibrated purposely to publicly humiliate anyone who stands on them. 

The rules of solid waste production also include emergency needs during trips out to social gatherings, grocery stores, restaurants, church or synagogue or mosque or society meetings.  It happened again tonight.  Waste Management has gender implications.  For those of us whose Loved One is the other gender, there are very unsettling complexities to fulfilling the role of chief of output. 

I dread it, just dread it.  No matter how understanding people are, a busy women’s restroom with multiple stalls is not a welcoming place for a man.  When she needs to go, she needs to go.  I have learned to seek out one-holers –  men’s and women’s restrooms that have one stool and a door that can be locked behind us.  Most Casey’s General Stores, some Arby’s, often Subway sandwich shops, some Taco Bell’s, some Pizza Huts, many small convenience stores have one-holers.  Of course the greatest invention in the history of humanity is the family bathroom.  Some newer rest areas, airports, Walmarts have them.  Gratefully, there is almost always someone around who can be enlisted to guard the door while we are both in the ladies room.  Then there was the time we entered a large but quiet ladies room, only to discover that while we were in there, a busload of thirty-one Second Graders came and were standing outside, their little legs crossed, while we had a substantial need to deal with on the inside.   

I suspect that other Caregivers share with me a quiet terror that lies in the recesses of our minds all the time, a fear fueled by horrible memories of past experiences with it — the dreaded diarrhea.  How many times have we changed bedding, maybe thrown away a mattress we just couldn’t clean, tossed clothing or sheets because we couldn’t face again the task of trying to get the stains out, scrubbed bathroom floors and walls, cleaned carpeted areas. 

I have to say something now that will probably seem sort of pollyanna in its tone.  I don’t like the job of waste management.  Sometimes it feels as it the smells will never leave my nostrils.  Sometimes it seems as if we cannot have much of a life as long as we are ruled by providing input and manageing output.  For me, it has come to be part of my job.  It is what I do.  It is neither good nor bad.  It just is.  When waste needs to be managed, it gets managed.  We use what we call pads (absorbant paper underwear), baby wipes, chuks (absorbant, plastic lined fold out sheets) for under the bottom sheet on the bed.  We put fitted plastic sheets under the mattress pad.  We have a bedside commode right there so that few steps are needed at night.  There are pads and babywipes in her purse.  We take just the right balance of over the counter Miralax and Senna to keep the activity somewhere between constipation and diarrhea. 

We do it for our babies, we do it for the people we love who can no longer do it for themselves.  It is the way we express the love we declare with our words.  However stupid it sounds to say it, I find Waste Management to be a nobel profession.  It is not for sissies.  When the job has been the most difficult and frustrating and messy, afterward (not usually during) I feel as if I have just been engaged in the game of life, living it to the full, not watching it go by from the sidelines.  I am somebody, doing something that actually makes a difference for someone I love.  By the way, talk about heros — thank a CNA (Certified Nursing Assistant) who serves in Waste Management at hospitals and nursing homes, next time you see one.   

There!  I did it!  I knew this had to be written.  I just didn’t know how to do it and when to do it.  Caregivers in Waste Management, maybe we could form a Union — however, no striking allowed.

I did it again yesterday, “do you want a sandwich, leftover casserole or scrambled eggs.”   Wouldn’t you know, this time, without having to use the “yes or no” question approach, she answered “scrambled eggs.”  Why did I even mention it.  Not only that, she asked if we  had bacon.  To my dismay, we did.  Then there was the raisin bread, toasted, buttered and topped with cinnamon sugar. 

I understand just how ridiculous it is to dread such a simple task — but it all needs to be done at the same time so that it can all be served hot.  Not only that, when it is done, there is at least one pan to be cleaned.  I don’t know about yours, but our automatic dishwasher will just harden cooked-on egg to be eaten with whatever is cooked next in that pan — hand washed — it needs to be hand washed — scrubbed with the little scrubby thing. 

This is not man’s work!  Before you get your nose bent out of joint (do noses have joints?), I understand that there really isn’t man’s work and woman’s work (other than the thing with the babies).  There are differences, for which we are all very grateful, but anyone can cook or wash clothes or mow the lawn or clean the house or change the oil on the car (if they can still find the place to put the oil in with all the stuff now to be found under the hood). 

It was not so when I was growing up.  If Dad wanted a cup of coffee and happened to realize it while standing in the kitchen next to the coffee pot, he would ask Mom who was sitting out in the living room to get him a cup.  She would do it!!  She knew just how much cream and sugar to put in.  By the time it was ready, he would be sitting in the living room, waiting to be served. 

He was a good man.  He was not harsh or demanding.  He took care of the car and the plumbing and the household repairs.  He mowed the lawn, planted a beautiful garden of flowers.  He grew vegetables by the acre when we got the land in the country.  It was just clear who did what. 

By the way, Mary Ann would most certainly never have gotten me that cup of coffee.  I shudder to think where it would have ended up if I asked.  She was hardly shy and retiring and certainly no domestic goddess.  But she grew up in the same era in which I grew up.  Our roles were pretty traditional.  I was the boss of the car and the outside stuff, and she was the boss of everything else.  If there is any doubt who was the boss, I rest my case with this piece of evidence: She ruled the remote control.  Enough said?

When Parkinson’s joined our family, things began to change.  By about a half dozen years into our new family configuration, with Mary Ann working almost full time to help get the kids through college, there was not enough stamina for her to go to work each day and come home to domestic chores. 

Roles changed.  I began to include some vacuuming, and clothes washing and bathroom cleaning.  I know full well how silly it sounds to say that as if it is some sort of a noble thing to have done.  Of course we should share duties as spouses, no matter our circumstances.  As time went by, Mary Ann was less able to do any of the household tasks, inside or outside.  I have come to have profound respect for single parents who must work full time to survive, deal with inside maintenance, outside maintenance, all the while filling the needs of little ones who are full of needs all the time.  I am in awe of those who have lost a spouse and must take care of everything while battling that deep and relentless loneliness that so often washes over them. 

As Mary Ann will say whenever the topic of cooking comes up “they won’t let me in the kitchen any more.”  You can guess who “they” is.  You don’t know real fear until you have seen someone whose arms and legs are waving this way and that, uncontrollably, while holding recently sharped Cutco knives.  The Parkinson’s meds produce those movements as side effects after years of taking those meds. 

While it is irrationally fearful to us, many Caregivers struggle to do the tasks our Loved Ones did before the chronic disease.  If  you have never paid the bills, or balanced the checkbook or used online banking, or entered checks in Quicken, it can be terrifying to do so.  If you haven’t learned what ingredients go with what, how long things cook, how to tell when they are done, how much salt or garlic powder or cumin or soy sauce goes with what quantity of rice or vegetables or meat, just throwing a meal together is a formidable task — give me Mount Everest, I’ll climb that, you fix dinner. 

Again, I suppose this sounds silly to those of you who can fix a toilet and cook a meal.  When it is just you, filling all the needs of someone who desparately needs you to do so, and trying to do everything that the two of you used to do, yes, when you are a woman doing man’s work or a man doing woman’s work, when you are doing it all, sometimes the smallest task seems hopelessly impossible.

One solution to the dilemma is to let go of whatever illusions may remain about what tasks belong to whom.  The tasks have no gender.   They are just things that need to be done.  Very ordinary people, just like you and me can learn to do any of them.  We actually can learn to do some of those seemingly impossible jobs.  Some of them don’t need to be done.  We just think they do because they always have been in the past, or others might judge us if we don’t do them.  We can dare to ask for help doing some of them.  We can use some of our limited resources to pay someone else to do them.  Our survival, our sanity, our need for some quality of life is worth it. 

Can you believe this all started over some scrambled eggs, microwaved bacon and a piece of toast?  Tonight I made stir-fried pork, vegetables and rice.  Who knew I could do it???  (Please do not invite me to a Pampered Chef party — unless, of course, it is held in the tool section of Home Depot.)