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PATHOGRAPHY of DEMENTIA.

Educating and training caregivers, clinicians, families, therapists, counselors and policy makers about dementia is one of the key offerings at the Orange Grove Center for Aging, Dementia and Longevity. The Center was created to address the growing numbers of individuals with intellectual and developmental disabilities, particularly with Down syndrome, with the co-morbidity of Alzheimer's disease and related dementias.

One of the teaching exercises is the use of the "pathography," a narrative written from the perspective of the patient. It describes what and how the illness is "doing" to the patient, its impact on their thoughts, actions and behavior.

The Pathography Blog offers, "A pathography is a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers."

At Orange Grove, we expanded the narrative to personify the disease. How does the disease, and the disorder see itself? What is the intention of the disease and how does it go about achieving its goals?

During a recent training class for "Dementia Capable Care," we asked the participants to pretend they were either a person with Alzheimer's (or a related dementia) or that they were the disease itself. We then asked them to write down their thoughts.

The participants were then given the opportunity to read their work out loud. The reaction was palpable. There was eerie silence after some of the readings. There were sighs, moans and grimaces, often accompanied with the exaggerated closing of their eyes.

This is what they shared:

FOR THOSE IMAGINING THAT THEY HAD DEMENTIA

"I'm slowly forgetting my normal life and memories. I used to be very independent and now I need small amounts of help with everyday living. I feel like a burden to my family. I want to be my old self, living my normal life."

--Laura M.

"I'm starting to see slow changes in myself. It started with small things like remembering where I put things, or where they were supposed to go. I'm starting to realize that I can no longer do the things that I have always done, without help. I often feel afraid and tend to get upset very easily. I know that I am slowly declining and soon will not be able to do much of anything. I feel very afraid and lonely."

--Courtney F.

"My knee hurts. My head is achy, but it's time to wake up. Time to start the day! Time to get moving! The floor is so cold on my feet. Time to wash up, shave. Why is it so dark? Why does my knee hurt? I cannot find my clothes, my wife sets them out for me every night, she even picks out my belt and shoes. Where are my clothes? Where is my wife? Honey, are you okay?" * Lights turn on. 'Mr. Smith, it's 2 am! What are you doing awake? Oh, my, you've had an accident! Let me clean you up.' 'Where is my wife?'"

--Sami C.

"I have Alzheimer's. I don't see or feel the world in the way I used to. Things are fundamentally different, and it's my reality, irrespective of whether it's yours. I forget--small things and large. Things that you know innately are now connections I can't make. This is a journey for me that ends in oblivion, but I still will feel your presence and hope your being with me will end in growth, understanding and appreciation."

--Anonymous

FOR THOSE WHO WERE "THE DISEASE"

"I am here to erase time, memories, hopes, dreams. I won't quit until you disappear inside yourself. I will not only affect you, but I will cause extreme grief with anyone you love or know. I am an unstoppable force without a cure. You have been warned, but you won't remember and those around you will suffer along."

--Leslee H.

"I intend to slowly misplace words in the brain, next I will mix familiar places with unknown ones. After that I will go after people that you are closest to and erase them, one by one. After all of that is completed, I will go after the senses. Soon enough there will be nothing or no one left."

--Katie M.

"I am going to slowly take your abilities and memories and make them disappear. You are not able to dress, shower, drive your car or live by yourself any more. You will forget... remember... family and friends until your mind is blank. Slowly you will not be able to walk, eat and breathe."

--Tracy

"I am going to slowly take your memories. I will first cause you to be forgetful. Then I will make you unable to take care of yourself, unable to make safe decisions and disoriented to the world around you. I will eventually cause your death. I will do this by cutting off pathways in your brain which allow you to think properly. At the end you will be so impaired that you forget how to swallow and even how to breathe. Then I will have won."

--Anonymous

"I will slowly enter your life and steal your memories, abilities and all of your relationships. I will give you anxiety, fear and make you withdraw into a living hell. I will do all I can to destroy you and the ones you love."

--Anonymous

"I am going to confuse you. I am going to make you feel like you don't matter. I am going to take away your fine and gross motor skills. I am going to take away your ability to work. Remember when you went on vacation with your family? No, you don't. I took that memory away. Your ability to read has diminished, now you are read to, and I'll pick the story. As a matter of fact, I'll make the rest of your decisions from now on."

--Dana C.

"I will take over your entire life as you know it. I will progress over time. You will no longer walk the same, have the same memories, small or feel the same or recognize your family. I will destroy your brain. I will take your life and you can't stop me. " - Stacie B.

Patti Wade, CDCCI is Director of the Center for Aging, Dementia and Longevity with the Orange Grove Center in Chattanooga, TN. AmyJo Schamens, BCBA is Director of Children's Services with the Orange Grove Center in Chattanooga, TN. Rick Rader, MD is Director of Morton J. Kent Habilitation, and Interim Director of Health Care Services with the Orange Grove Center in Chattanooga, TN.

BY PATTI WADE, CDCCI, AMYJO SCHAMENS, BCBA AND RICK RADER, MD
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Author:Wade, Patti; Schamens, Amyjo; Rader, Rick
Publication:The Exceptional Parent
Date:Aug 1, 2019
Words:1112
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