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It's Just Poop People!  It isn't a prelude to death without dignity. ©

"The art of living does not consist in preserving and clinging to a particular mood of happiness, but in allowing happiness to change its form without being disappointed by the change; for happiness, like a child, must be allowed to grow up.  

 by Charles Langbridge Morgan, "An English Retrospect." . 

People facing incontinence care with other diseases are treated differently than those with Alzheimer’s because no one wants to demean the value of someone who can still think, and therefore feel, no matter how physically debilitated their illness makes them. Political correctness mandates that.  As one example, I offer you Christopher Reeve who experienced a spinal injury after a fall from his horse.  I know we really don't want to think much about his toileting problems, but of all the areas of Mr. Reeve's life that has been affected by his fall, his personal hygiene resides fairly close to the top of the list of daily ministrations in his care.  Believe me, the Reeves received a very pragmatic discussion of just exactly what his hygiene care  would entail as soon as his rehabilitation began and no one pulled a face during the discussion or referred to the details in any way that would reflect on Mr. Reeve's dignity or humanity.

Another example of dealing with incontinence is the one offered by Morrie Schwartz.  Those of you who haven’t read "tuesdays with Morrie," should. Morrie was diagnosed with ALS, (Lou Gehrig's Disease), an illness that would leave him as physically helpless as my husband became in the late-stages of Alzheimer’s.  The only real difference in their care needs is that my husband lost the ability to participate intellectually in his whereas Morrie remained cognizant until the moment of death and able to express his fears and his concept of himself as his needs increased.  During an interview with Ted Koppel he spoke of his intention to live with dignity, courage, humor and composure in spite of his illness.  There isn't one of us who doesn't applaud that resolve. 

~*~ 

"There are some mornings when I cry and cry and mourn for myself. Some mornings, I’m so angry and bitter. But it doesn’t last too long. Then I get up and say, ‘I want to live . . .’ So far, I’ve been able to do it. Will I be able to continue? I don’t know. But I’m betting on myself that I will."

The two men spoke about the afterlife. They spoke about Morrie’s increasing dependency on other people. He already needed help eating and sitting and moving from place to place. What, Koppel asked, did Morrie dread the most about his slow, insidious decay?

Morrie paused. He asked if he could say this certain thing on television.

Koppel said go ahead.

Morrie looked straight into the eyes of the most famous interviewer in America. "Well, Ted, one day soon, someone’s gonna have to wipe my ass."

Later in this book, Mitch Albom, who wrote about his experience with Morrie, refers back to the Koppel interview:

"Occasionally, he had to stop to use the bathroom, a process that took some time.   Connie would wheel him to the toilet, then lift him from the chair and support him as he urinated into the beaker.   Each time  he came back, he looked tired.

"Do you remember when I told Ted Koppel that pretty soon someone was gonna have to wipe my ass?" he said.

I laughed, You don’t forget a moment like that.

"Well, I think that day is coming. That one bothers me."

Why?

"Because it’s the ultimate sign of dependency. Someone wiping your bottom. But I’m working on it. I’m trying to enjoy the process."

Enjoy it?

"Yes. After all, I get to be a baby one more time."

That’s a unique way of looking at it.

"Well, I have to look at life uniquely now. Let’s face it. I can’t go shopping, I can’t take care of the bank accounts. I can’t take out the garbage. But I can sit here with my dwindling days and look at what I think is important in life. I have both the time – and the reason – to do that."

~*~

Morrie is a unique person by all accounts, but the way in which he dealt with his dying, his increasing incapacities, and his incontinence are not uniquely his. Granted, he still had his thinking process and he still had to reason it all out and find his way to deal with these changes, but all of us have that capacity when faced with things we can’t change.  We somehow learn to deal with life even though we wish with all our hearts for an easier way through.  If people like Morrie and Christopher Reeve somehow make the adjustments to their care needs, there is every reason to expect that people like my Tom, will also make those adjustments especially since the process begins while they still have some awareness of their world.

Speaking of Tom, I'd like to offer this excerpt from my book, "he used to be Somebody,"  as an example of how we dealt with these changes. 

~*~

"He became completely incontinent by 1990. We were lucky again. The level of intimacy the two of us enjoyed with each other allowed an easier transition for us as his needs changed. The crossing point for both of us occurred when I realized he wasn’t cleaning himself properly. I took the practical approach and offered what I saw as the only alternatives. Either he let me help, or someone else was going to have to help, or he’d end up dying of filth. Tom was pragmatic as always. As for my attitude towards doing ‘it’, I could see only four choices. I could choose anger, disgust, benign complacency, or love. I made the conscious effort to choose love. Assuring him I could also do this for him without revulsion or personal pain made the transition a lot easier for him and for me. Just to demonstrate that moments of tenderness were possible in what had to be thought of as an impossible breeding ground for such moments, I’ll never forget the following incident ...

Tom had contracted a stomach virus which brought with it all the horror one can only imagine in the care of someone with the combination of motor control and reasoning problems Tom had. If there is hell on earth, diarrhea in a late stage Alzheimer’s person is it. If there is a heaven, it only lasts 24 hours. Given my state of sleep deprivation and the physical energy it took to handle Tom’s relentless need for help, I was at my wits end as we once more made the trip to the bathroom with pajamas that had to be changed and floors that had to be cleaned. I wanted to scream I felt so tired, and used, and spent, and unappreciated. And poor Tom. He was just responding to being sick and anxious from all the activity surrounding that night, getting more and more combative as the night wore on and as my own anxiety level increased. I remember steering him one more time into the bathroom and out of desperation, (I don’t where the words came from,) I uttered ...

"Thank you, Lord!"

And Tom responded ...

"Thank you for what?"

"It could be worse, Tom."

"How?"

"I might not still love you as much as I do."

He turned his head towards me and said ...

"You still love me?"

"Of course, I love you."

"God, I love you too." I saw tears form in his eyes and he continued ...

"Bevy!"

"What, Tom."

"Thank you."

The evening became one of sharing the absurdity of what was going on in our lives and one of reconnecting to each other. And it was a sort of turning point for me. I stopped feeling victimized by what Tom’s care needs meant by simply moving out of anger and into love, realizing in the process that it was as easy as making the choice to do so.  I had two choices in attending to Tom’s needs and that was to do them happily or do them mad.  Either way, they still had to be done. And I realized something else, I realized how much Tom still needed to be loved. After all, what were we actually dealing with?  A little poop between lovers wasn’t really that much of a big deal."

~*~

In contrast to this portrayal, I offer a view of another incontinent person with dementia.  I quote from Dr. Sherwin Nuland in his book, "How We Die."  

Dr. Nuland is a surgeon and teacher of medicine who writes that we have sterilized death by removing it from homes and family.  He attempts to demystify death by describing how the body actually shuts down, the pain levels patients feel, and he  uses actual case histories to describe the death process in situations that range from heart disease to murder.   He maintains that it is the stigma and fear attached to the death process that results in the unnecessary institutionalization of too many at the end of their lives.  This thought runs true throughout this book except for the segment he did on Alzheimer's.  While his description of the three stages of this disease, including the section on the dying were accurate and in fact helpful to me in anticipating the process involved in Tom's death, the very stigma and fear he wishes to remove from our thoughts elsewhere is undermined by the overriding bias that expresses itself in this segment.

For one thing he referred to the eventual need for Alzheimer's people to be placed in a nursing home, which just isn't true and the actual statistics prove it.  That comment seemed a direct contradiction of the point being made in other segments regarding right to die issues.  

For another, he offered this description of the hygiene problems his Alzheimer's case study presented...

"...Urine soaking his clothes and smeared sometimes with his feces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him.  "And this was a man," said Janet, "who had always been so proud of his appearance, and so dignified.  You might even say he was a prude.  To see Phil standing there nude while three aides were washing him, with him not having any idea of what was going on... "  And then, her eyes reflecting the first moist of beginning tears, she said, "It's such a degrading sickness!" 

This is a very different image of incontinence care from the one given in "tuesdays with Morrie," or in my book for that matter, or in the experiences of other caregivers facing this disease.  

What it reflects is the personal revulsion so many feel about Alzheimer's Disease, as if this disease, more than any other, necessarily degrades  human quality.   One has to wonder what feelings were going through what was left of Phil's mind, while he was being hosed down by aides and with his wife standing there reflecting her and their personal horror of the situation.  People!  Christopher Reeve has to be washed and he knows what is going on.  Is it easier for him?  My grandson needs every aspect of his care done for him, do we feel disgusted when he poops and needs bathing.   Gee Whiz People get past this.  

Phil is only degraded by his care needs because everyone around him views his care needs that way.  

Our people with Alzheimer's are subjected routinely to levels of insensitivity that astounds me.  Trees get more respect.  

It's as if the withdrawal of nurturing and love is a mandatory response to this illness and when incontinence appears the desire to flee is only surpassed by the desire to justify the flight itself.  I think we need to believe those with Alzheimer's have no feelings, no awareness, and no sense of self because that belief makes our desire to flee their presence more palatable.

However, my experience is that our people maintain an emotional richness that is highly under rated and highly under-valued by the world at large.  What they keep after language has left, is the ability to read body language, response to a warm, friendly, accepting, helping attitude from their caregivers, and an ability to feel loved and supported, very much the same things a baby experiences at birth.  In short, their emotions, their ability to feel rejection, loneliness, grieving, and pain, is as clear for them as it is for anyone. That they can't express their feelings according to the standards of "The Rational Society," is not to say the feelings don't exist at all.   Their emotional response is still real to them.  In fact, there is research to support the notion that just as emotion is the first thing a newborn child learns, that one essential immediate thing necessary for bonding and survival, it is the last thing a person with Alzheimer’s still has when they die.  I know that was true for my Tom.    

I remember visiting an Alzheimer's adult-day care unit in New York City.  

I wanted to see where my husband was headed if we stayed in New York.  Most of the participants were wheel-chair bound and obviously in the later stages of the illness with serious language deficits.  This was a comprehensive program, and I go into depth on the value of comprehensive programs in the section titled:  Assembling Your Team. 

The participants weren't able to speak, except for occasional words, and engaged in limited activities such as listening to music.  Their care was more custodial than activity directed.  I observed one aide who, whenever she moved through the room, the Alzheimer's patients would glare at her, draw away from her, and one actually stuck his tongue out at her.  I asked what that was all about.  The director informed me that while this aide is prompt and has years of experience, she is short on people skills.  She was placed in this unit because she wouldn't be engaged in a great deal of interaction with the program members.  However, even in their very advanced state of brain damage these patients had responded to her the same way everyone responds to her, with distance and in some case active dislike.  

So how unaware were these people even in their advanced stage of illness?    

And that having been said let us revisit Dr. Nuland's portrayal of such a person, from Phil's viewpoint. 
For starters, there is absolutely no reason for Phil to be soaked with urine and feces in any nursing facility and certainly not on a repeat basis as is inferred.  That situation was the result of staffing problems and poor care.  If a child had been reduced to this state the parent could have been charged with neglect.   In fact, it was just such a problem with incontinence care that was instrumental in closing The Willowbrook State School For The Developmentally Disabled, in Staten Island, one of the largest custodial care facilities in this country back in the 70's.  The obvious lack of basic care isn't acceptable for a child, it would not be acceptable for Morrie or Mr. Reeve, not at home and certainly not in a nursing home, but it is apparently acceptable to treat Phil, an Alzheimer's patient, this way.   That is where the anger and horror should have lain.  

It's just poop people, it isn't toxic waste and Phil's poop isn't any more disgusting than my grandchild's poop, or Morrie's poop.  Whether it is elephant poop or pigeon poop, it's still poop.  Soap and water works, incontinence products work and there is no reason to characterize Phil's care needs in terms of his dignity or it's filth.  These are not terms we apply to infants or youths with Muscular Dystrophy or adults who keep their thinking process in spite of their similarly physically debilitating conditions.  

Why then are these denigrating terms attached to our people?  

"...to clean off the filth that profaned the pittance of humanness still left to him,"  

That statement not only diminished Phil as a human being, it gave permission to the nursing home, the wife, and the readership to continue their biased response to the people who are like Phil.  In a sense it gives permission for the world at large to continue to strip away Phil's dignity which is in itself a form of abuse.  And we all know that once a person's dignity has been stripped away it is so much easier to rationalize the physical and emotional abuse that often follows.  Abandonment is a form of abuse.      

The other point I wish to make involves the wife's description of Alzheimer's as a 'degrading sickness.'    

Difficult behaviors, anger, incontinence, depression, inability to walk, dress, or feed oneself become a very real part of most terminal illness and again I refer to the tender treatment of Morrie facing this eventuality as compared to Phil.  I don't believe the ability to think and communicate are attributes that inherently determine who still has their dignity and who doesn't.   Everyone who faces this aspect of care faces it easier if those who have to do the ministrations act as if it is just another task and not some perpetration on the dignity of everyone involved.  How would Morrie or Mr. Reeve survive if they were made to feel the disgust attached to these tasks.  Why should Phil or my Tom be regarded differently because of the tasks involved in their care?  And they are, after all is said, just tasks.

Always, the Alzheimer's person is singled out and spoken of in terms of difficulty of care... 

• In terms of the emotional and monetary cost to the caregiver.

• In terms of the cost to society.  

• And how sad it all is that they don't even know who their caregivers are anymore. 

Rarely is the human quality of the person with this disease ever raised as an issue in determining their care choices or in the preservation of their dignity.  The point needs to be made that dignity isn't up for dismissal by a disease process over which there is no control.  Dignity is ultimately reflected in the eyes and minds of those who care for our people.  The accepted characterizations of this disease, such as the one demonstrated by Dr. Nuland, do little more than dehumanize the person with this disease and by default it also dehumanizes their caregiver.

I refer you to Stephen G. Post, who's book, "The Moral Challenge of Alzheimer's Disease," addresses the issue of the human quality of the Alzheimer's person.  Dr. Post argues,

"..maintaining the emotional and relational well being of those with dementia depends on caregivers who see dignity even in those severely affected by this condition."

Dr. Post dates the negative attitudes towards the crazy, the demented and the retarded to the onset of The Age Of Reason.  This time in history prioritized the ability to think, reason, and learn, above all else and it heralded the end of a beneficence, society had automatically afforded those who would now be despised, reviled and herded into asylums, attics, and jails.  He further writes:

"..But we live in a culture that is the child of rationalism and capitalism, so clarity of mind and economic productivity determine the value of a human life."

"...The value of a human being is not diminished by even profound forgetfulness; we must assume equal moral seating and awaken a new beneficence towards those who can no longer remember."

He continues:

People with dementia have heterogeneous (dissimilar) disabilities that confer on them a preferential moral significance based on the magnitude of their needs.  They are the socially outcast, the unwanted, the marginalized, and the oppressed."

With all due respect for Dr. Nuland, that particular comment in his segment on Alzheimer's does little but reflect the preferential moral significance based on the magnitude of Phil's incontinence care.  One does tend to see Phil as the socially outcast, the unwanted, the marginalized, and the oppressed if Dr. Nuland's description is held as valid.

Earlier, I asked this question: 

 Why are these denigrating terms attached to our people?  

One needs to know that Dr. Nuland wasn't just a physician to this couple, he was a life long friend.  

• I believe that Dr. Nuland was really responding to what we all respond to as this disease takes it toll on a friend or relative, and that is a deep abiding grief and a personal fear that it could happen to us.  

• This disease hits at the very core of our existence, our sense of self, our privacy, our interpretation of dignity, and a host of other qualities so valued by a The Reasonable Society, because, if this disease can perpetrate the horrors it imposes on good people like Phil, and my Tom, then our own vulnerability is magnified geometrically.   

• This fear is so ingrained that even those who work with this disease daily don't recognize it for what it is.  The danger is that by not understanding the source of our fear when we see what this disease does to people, we don't get past it.  

  And who suffers?  Phil, that's who!  My Tom, that's who!  And by extension, I do!

The phenomena that sets Alzheimer's apart from other terminal illness is the unique melding of the symptoms with the person who gets it.  To get Alzheimer's is to be Alzheimer's.  It becomes very difficult to separate the person from the disease process when we are in the throes of our own fears, of our future, our own death, and our own ability to wipe our bottoms.     

Which brings me back to the reason why I decided to focus on the subject of incontinence care in this web page.  When incontinence problems become evident with this disease, the tasks take on an aura of insurmountability that simply isn't real.  It's just poop people, it isn't toxic waste, and there are ways to deal with the accompanying behaviors.   If I were to narrow down the most important ingredient that determines success in caregiving for this population I'd say it has to be attitude.  Attitude marks the difference between success and failure in this job.  I think the real questions to be asked are these:   

Is it more degrading to die of Alzheimer's or is it more degrading to have been reviled, disregarded, disrespected and abandoned?

Or... 

Does the nature of this illness mandate more effort on our part to love, unconditionally, the person who is actually doing the dying?

©2000

How We Die, Reflections on Life’s Final Chapter. Nuland, Sherwin B., New York. Alfred A. Knopf, 1994.

tuesdays with Morrie, an old man, a young man, and life's greatest lesson. Albom, Mitch., Doubleday, New York, London, Toronto, Sydney, Auckland 1997 

The Moral Challenge of Alzheimer’s Disease, Post, Stephen G., The John Hopkins University Press, Baltimore and London, 1995 

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