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Challenging  The  Politically  Correct 

We live in a world that needs to water down everything, even that which doesn’t need watering down. The ‘Politically Correct Police’ are always out there waiting to point out the proper and improper ways we express ourselves. A person attending a seminar I conducted on Incontinence, confronted me with the following note...

"Why do you use the demeaning word ‘diaper’ to describe ‘incontinence pads’ in relationship to a grown adult?  I find your use of that word unacceptable and offensive.  Alzheimer’s people are not children they are adults and they deserve to be treated as such."

A number of responses flew through my head but what I said was this:

"Now I want you all to think about this. Do the words ‘incontinence pads’ bring to mind a different image than the word ‘diaper?’  Aren’t they really the same thing?

Well, they are the same thing, but the images those two terms conjure up are quite different and I think this needs to be addressed.  The term incontinence pads does little to enhance the dignity of an adult who needs them although I fully understand the attempt to give these products a more adult image than that of a baby diaper. However, I think the political correctness attached to the above statement does little more than delineate the differences we already feel about child care vs. elder care.

While diapers are simply accepted as a normal part of child rearing, incontinence pads have become synonymous with all the negativity already associated with elder care and particularly Alzheimer's care. And not wanting to indulge in a whole philosophical discussion on the merits of one term over the other let me say this:

Call them whatever makes you feel comfortable!

As for me, there are too many syllables in the phrase, Incontinence Pads, and I sometimes opt for the shorter, equally descriptive word Diaper to name, what we all hope to avoid needing in our lifetimes.

In my opinion, getting hung up on what we call ‘Those Things,’ is just another way to avoid facing what they are for, and that is to keep an incontinent, (and in the case of an Alzheimer’s person,) confused adult, neat, dry, tidy and free of skin abrasions. Take it from one who knows, once I was in the heat of tearing open a bag of ‘Those Things,’ in order to meet the needs for which they were meant, I didn’t spend a whole lot of time contemplating what they were called.  I was too busy relating to the very real tasks those things represented.

For the record, I didn’t call them anything in Tom’s presence. By the time he reached this phase of care there was little point in dwelling in much detail on any subject. This was the "Taking Over" phase of care which I will discuss in much more depth under the heading "The Stages of Care." The controls were now mine, and the only choices I had were the choices that made his life and my life as easy as possible.  It was a lot easier to change a pad than it was to keep the rug shampooer fired up and ready for action 24 hours a day.

When diapering Tom entered our reality, I attached as little significance to what I was doing as possible. I treated the use of the various products as simply another article of clothing. I didn’t discuss his need to wear them, I didn’t discuss why I was putting them on him, and I didn’t ask his permission to use them because: He no longer had the choice in this matter.  He could not walk around soaked in urine or caked with poop because he was unable to ask to be taken to the bathroom!  In fact, the one occasion he was left for hours in his soiled clothing resulted in my aide being fired.  I knew what state he was in the moment I got out of my car in my garage.  The odor was that strong and I immediately knew he had been that way for quite a while.  As I entered the house, I was told, rather flippantly, that Tom had a surprise for me.  I advised her, that I also had a surprise for her.  I told her to go home, I took care of Tom and then I phoned her and told her not to come back.

When Tom's pads needed changing I resorted to euphemisms...

• "It’s time to get freshened up Tom."

• "Lets get your clothes changed Tom."

• "It’s time to take a shower Tom."

• "Come with me, it’s time for me to fuss over you a bit, Honey."

• "Love of My Life, I need to help you get yourself ‘arranged’."

Tom often used the saying; "I need order in my life," when a project he was working on wasn't coming together fast enough to suit him.  His colleagues told me that was a signal they learned very quickly to acknowledge.  I found by using his words, he was less likely to resist my need to perform the necessary tasks at hand.  He generally nodded with ancient understanding when I said:

• "It’s time to bring order back into your life Tom."

Important Note!

And before the Politically Correct Police start banging on my door for lying to my husband!

• Anyone who has had the experience of having to explain something to an Alzheimer’s family member, once their ability to integrate new information begins to erode, knows that this explanation can go on for hours. These episodes can and often do erupt into a catastrophic reaction on the part of both the caregiver and the family member. I can’t begin to describe the frustration I experienced trying to make Tom accept what had seemed like a simple statement. To hear him respond with the word "Why?" portended a marathon of questions and answers none of which he accepted and it was impossible to ignore him when he started in. He demanded an answer he couldn’t possibly integrate. The experience could try the patience of ‘Job.’  Even if he acquiesced, five minutes later it could begin anew.

• Maintaining the caregiver’s sanity is the key here. The decision has to be made, that from this point forward, every decision made about the care of the Alzheimer’s family member has to encompass what will make the caregiver’s life workable.

• Furthermore, why is it necessary for the family member, at this stage of confusion, to relate to their incontinence? What purpose is being served?

• It’s difficult enough for you the caregiver to relate to it. Do you need the constant aggravation of having to explain it, over and over?  Every time you bring the subject up the only thing you do is remind them of the event and they will only deny they have the problem. This is a prime example of their ‘old memory,’ knowing they can take care of their own bathroom duties, and their ‘recent memory,’ having lost the ability to organize these tasks, manage the physical moves to do the tasks, as well as recognize the signals the body sends to tell them when it is time to ‘go.’ 

• It isn’t as if you can explain anything just once and have the subject dealt with. And consider this; do we indulge in discussion with a two-year-old as to whether or not they understand the purpose of diapering them? This behavior is hardly an infringement of their rights. Like it or not, taking the same attitude with an increasingly incontinent adult is no different.  Your level of confidence will be telegraphed to them, have no doubt about it.  If you approach them with authority and resolve they will more likely co-operate than if you personal revulsion and disgust surface.

Use your common sense. You know your person best.  

It is a trial and error time for both of you.

But, as the saying goes, "Keep it simple."  The less that provokes their denial and fear, the easier it will be on you the caregiver. While there is a very fine line between infantilizing our Alzheimer’s family members and just doing what has to be done to make life for the caregiver tolerable, there is this to consider:

Unlike our babies, our people bring a lifetime of history and experience with them into this disease. You must acknowledge that they have memory of having been able to do all the things you must now help them with, even thought that memory is often convoluted and abstract.  Infantilizing them has to do with treating them like babies instead of the adults they are.  It is in the attitudes of those who care for them that their dignity, their integrity and their sense of self is secured.

As a culture we need to begin focusing more on how to find a sense of purpose, and  accomplishment, and love, in the tasks that face us and less time trying to sterilize it with more socially acceptable terms. To my mind, being preoccupied with the political correctness of the language is just another form of denial and a very big waste of time.

One thing I discovered when speaking of the day-to-day care involved with Tom, whether in a training seminar for caregivers and professionals, or to family and friends, or Tom a.k.a., Himself, euphemisms roll off my tongue the easiest. The clinical names for body parts, for example, do not flit naturally through my thought process and I admit that too much concentration has to go into saying them out loud in order to proclaim my clinical training and fend off the mounting pressure from the ‘Politically Correct Police’.  I found that even with all my clinical training, I was still consumed with irrational feelings that everyone in the store was looking at me when I bought that first bag of adult diapers. And worse yet, that it was assumed they were for me, but then I used to cringe a little when taking feminine hygiene products to the check out counter. (Who said menopause had no perks to offer)? I also find many of us are slightly embarrassed to name most private body parts in general conversation.

I have learned to let others use whatever expressions and words they choose to convey what they need to talk about, without making them feel as if they have breached some form of global etiquette. We all have our little quirks, my Glossary of Terms, reflects some of mine.

©2000

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