March 2009


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.

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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.)

Whether the reason is lurking somewhere in my DNA, those double helixes containing the code that tells the cells in my body where to go and what to do when they get there, or in subtle messages from Dad (he didn’t talk much) as he showed me what to do with my feelings (don’t show them), I did not end up able to cry very much.  Mind you, I can tear up at a sappy movie.  My lip will quiver when I am overcome with emotion, but really crying, sobbing, is a very rare experience for me.   There was the time my Dad died, the day our daughter left for college (our Son contends this is just more evidence that we liked her more than him — gratefully, she is convinced we liked him more than her — we must have done something right).  There was the time after six sleepless nights in Mary Ann’s hospital room that I broke down, sobbing, in my Son’s arms.  I cried when we buried good friend Al.  I can count on one hand the times I have really cried. 

I am a member of an online group for those caring for spouses who have Lewy Body Dementia (check www.lbda.org for information on joining).   Parkinson’s Disease Dementia is a Lewy Body Dementia.  There is an understanding of confidentiality in the group.  I suspect no one will mind my sharing one of today’s topics.  Someone asked for suggestions for “music to cry by….”  Please understand that very many of these brave folks have given themselves completely to the care of Loved Ones who need them constantly.  Lewy Body Dementia (LBD) is a particularly insidious form of Dementia.  Symptoms can come and go from one minute to the next with no way to predict when they will do so.   I can only hope I will muster their courage when our journey takes us where so many of them are or have been. 

The songs suggested had names like, The Days of Wine and Roses, Because of You, The Way We Were, If Tomorrow Never Comes, Blue Eyes Cryin’ in the Rain, Through the Years, You Were Always on my Mind, I Still Miss You, After the Lovin’, And I Love You So, and dozens more.  I was struck by how many could respond immediately to the question, “What is music to cry by….”  The posts just kept coming. 

Then came a few who asked (I paraphrase), who needs music, I can cry any time, just stopping to think brings tears.  It would break your heart to hear the litany of impossible challenges these people endure, some for decades.  Yes, there is a time to weep.  We are made of water, mostly.  Sometimes we need to just spill some of it before we explode.  I suppose that is what tear ducts are for.  No, it doesn’t change our circumstances when we cry.  It changes us, our chemistry.  Strangely, it seems to take us close to the place from which laughter comes.  When spending time with grieving families, listening to stories about the one who died, the laughter and the tears seemed to live right next door to one another.  Both seemed to have healing power.

But what of those of us who don’t do well at crying?  We need to find our way to a mechanism for releasing whatever it is, whatever healing it is that tears and laughter can provide.   My insides can be stirred by a Bach Passion, or Russian liturgical music, or Ralph Vaughn Williams, or Poulenc, or Widor, or Telemann, sometimes Enya or the Celtic Women or Hammer Dulcimer music.  For me, these past few days have confirmed that my release is to be found in thoughts put into words.  My life’s work has revolved around talking.  Now that we are mostly at home, today was a day of sleep for Mary Ann (one of the transitory symptoms of LBD), there is no one to listen.  So, here I am, making words, my version of crying and laughing and healing.  And you who dare to enter this Internet domain are my therapists.  (Please do not bill me!)

So, how does she feel?  How does Mary Ann feel?  How does she feel that she needs to push a button to be able to do the simplest of things?  I asked her.  Understand, Mary Ann does not talk about feelings.  Mary Ann doesn’t talk much at all.  It is often hard for her to gather her thoughts and put them into words.  In fact, sometimes she is convinced that she has said what she was thinking when nothing at all has come out of her mouth.   She wonders why I am asking her again. 

How does she feel?  One of my jobs is to determine what she is feeling by assessing the elements of the situation, by remembering how she has reacted in past to similar circumstances, by looking at her face, by noticing her body movements, trying to find my way to what she is thinking, but not saying. 

How does she feel?  This time I just asked her.  I asked her how she feels when she presses the button.  It was apparent that she was trying to think of a way to respond but struggling to get to the thought and the words.  I formed the words for her so that she could answer yes or no. 

One of our barriers to communication is my unceasing need to ask either/or questions.  “Do you want a Turkey and Provolone sandwich, left over pasta, or scrambled eggs for lunch?”  “Yes.” she responds.   “Which?” I say.  Her next response?  Silence.  Was her “yes” to the first of the three, just a little late in coming?  Was her “yes” to the last one of the three?  Actually, she is bored with the default lunch setting, Turkey and Provolone, Fritos and a Pepsi.  Leftovers are by definition unfit for current consumption and an offense to Mary Ann’s palate.  It must be the scrambled eggs — my last choice since it means actually using a major kitchen appliance (the one with burners and knobs rather than the one with the little door and buttons). 

I read a book called LIfe in the Balance, by Dr. Thomas Graboys.  He has Parkinson’s and is moving into Parkinson’s Disease Dementia (a Lewy Body Dementia).  Some parts of his book could have been written by Mary Ann.  The part that sticks firmly in my mind is his description of trying to communicate.  He struggles to find the words, put them together, and get them out of his mouth before the time has long since passed for his reply to be relevant to the conversation. 

I have learned that communication works best when the question is a yes or no question.  I have learned that trying to intuit what she is thinking, then saying the words and asking, “Is that what you mean?” allows at least the possibility of finding our way to the thought in her mind that is seeking release. 

So this time I simply asked her, “How do you feel when you press that button to call me for help?”  I formed a couple of answers, “happy that I am coming to help, unhappy that you have to bother me, or some of both?”  (I did it again, an either/or question!)   Seeming to discern some non-verbals when I said “both,” and expecting that to be the answer, it was clear to me that the “yes” was to, “both?”

Apparently, she, too, has a love/hate relationship with that little electronic doorbell.

Mary Ann is in bed now, watching television.  I am sitting at the computer on the other side of a closed door, around the corner and down the hall in my office writing this post.  What if she need’s me?  How will I know?  She needs my help to take care of basic bathroom needs.  The Parkinson’s Disease has quieted her voice.  Getting out of bed and walking out to find me is not always an option as mobility has diminished over the years. 

I can hear what is happening in the bedroom through the surprisingly powerful speaker on the baby monitor sitting just to my left on the corner desk on which the computer monitor sits.  I can disconnect it from the power cord, use the batteries, and walk outside or sit on the deck and hear her movements. 

I have a love/hate relationship with another of our communication devices – the electronic doorbell.  A number of years ago, I found an inexpensive electronic doorbell system that included two button units and the sound unit (about the size of a pager).  I bought two systems.  There is a button in each of the two upstairs bathrooms within reach of the toilet stool.  There is a button next to the bed in case I don’t hear her through the baby monitor.  There is a button on the table by the parking space for the transfer chair where she takes up residence each day.  The sound unit (only one still works) sits in a central location. 

Let me tell you why the relationship with that doorbell is a love/hate relationship.  The sound of that bell rings in my ears.   It immediately triggers that same reactive fight or flight response that helped our ancient ancestors survive.  It means I must stop what I am doing and move, hopefully, to the right button location.  The need may be an urgent trip to the bathroom or bedside commode.  The need may be to pull a cover over her, turn her in bed, turn the television off, the ceiling fan on or off, have a drink of water, Tums for her tummy, a snack.  It may be to deal with the mice or rats she often sees in the bed.  Hallucinations and vivid dreams are gifts from the Parkinson’s that journeys with us.  How can I help but hate the sound of that doorbell? 

I love that doorbell.  It is the bell that tolls freedom for me.  Were it not for that bell, I couldn’t venture to another part of the house to write a post or listen to some music or read an article or calm my spirit with a moment’s peace.  Without the bell, I would be tied to Mary Ann’s side — which, by the way, would annoy her more than me.  Without the bells, she would have no privacy, nor would I.  Without the bell she would need to be in sight every moment of every day until one or both of us cracked and crumbled. 

I think I have gotten a little dramatic about the bell.  It is just a cheap electronic doorbell.  Mary Ann doesn’t even always remember to push the button next to her — but it helps when she does.  The Parkinson’s is here to stay.  We choose not to give it the power to rule our lives.  If a cheap electronic doorbell defuses some of the Parkinson’s power to rule, so be it.

Mary Ann and I have been married for over forty-three years now.  For twenty-two of them she has had the diagnosis of Parkinson’s Disease.  As anyone who has a spouse with a chronic disease understands, both have the disease.  There are no longer just the two of us, but three, Mary Ann, Pete and the Parkinson’s.  Since we can’t make the Parkinson’s go away, we have to decide what place it will have in our journey.  Rather than fight it or concede to its rule, we simply live meaningfully and fulfilling lives in its company. 

With that said, there is nothing easy about living meaningful and fulfilling lives in the company of Parkinson’s or any other chronic disease for that matter.  The meaning comes in many forms, two remarkable children and their spouses, as well as, three beautiful Granddaughters give meaning to our lives.  If we never did more than serve as participants in the delivery of those people to the world, it would be enough.   Meaning comes in the relationships that have been nourished by being drawn together in response to the struggles brought by the Parkinson’s.  Fulfillment sometimes comes  in the messiest, most humbling tasks demanded by the chronic illness.  In the most frustrating moments lie the seeds of purpose.  The challenge is to nurture those seeds in a way that allows them to sprout into life that is vibrant and stimulating and satisfying.  The key to that nurture lies in a healthy view of life that does not demand pretense or perfection, but provides strength and hope that trumps despair. 

This blog intends to provide some practical tools for dealing with the daily challenges of chronic disease, as well as some ways of understanding the task of caregiving that nurture the spirit.

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