Creating Our Story

20150430-0834-2We tell stories. Our stories convey who we are, who we wish to be and how we see the world.    I listen carefully when people talk about Alzheimer;s Disease, and how they describe those who have the disease.  They say, “his life is tragic; how devastating; he’s gone; he’s not really here; he’s not really a person anymore.  I would rather be dead than look like that.”

Being a caregiver for someone with advanced dementia is exhausting, painful, and heart breaking.  There are no words to properly describe the anguish and fear that people feel when a degenerative disease becomes a part of their lives.  I listen.  I observe. I feel anger, fear, rage.  I want to run.  I sense the isolation.  I fear it for myself.  

I notice how the words I use affect my reactions, how my words shape my feelings, and how my feelings impact those around me.  Maybe my words are not understood but my feelings, my energy, my willingness to try to connect are.  Even in silence our bodies convey what we feel. Those with Alzheimer’s may not be able to communicate with language.  They may not understand the words that are spoken to them.  What they do experience is how one’s voice or body language makes them feel.  When I think about communicating in a different way, I recall what it is like to communicate with infants and babies before they are dancing with language.  It is the same.  I communicate with my voice, with tone, rhythm, and cadence.  I communicate with my facial expressions and how my body holds itself.   I communicate with touch.   This way of communication is basic.  If I look at someone with fear or pity I don’t need words for someone to sense what it is that I am projecting.

When I was a child I remember how Cancer,  The Big C, was the monster looming outside the door. When my teenage sister was dying my parents withheld the information from most of our family and friends. My mother demanded that no medical chart in her school or at camp, or any document that was brought into her hospital room have any mention of her diagnosis.  My parents feared that if people knew my sister had cancer no one would visit.    Despite the towering realities of her illness they held firm to their secrecy.  They created exactly the level of isolation for her and for themselves that they were trying to avoid.

Today Alzheimer’s Disease instills that kind of fear and shame and more.  With Alzheimers, one looses the self by which we recognize one another.  Alzheimers places people in a category of other.  It elicits fear, pity, despair, and it creates the most excruciating pain of all: Isolation.  The isolation of Alzheimer’s Disease is two fold.  A person with the disease is confused about their sense of self.  He is confused about his place in the world.  He is isolated from the roles and sense of self that defined him.  He is isolated from  the social world that he was once a part of.   Our fear of the disease, our discomfort with engaging with people with the disease creates a prison.  Fear pushes people away. Fear makes us run.  It is understandable.  But still, it needs to stop.

It matters how we frame our story about those who  have Alzheimers.  Our words matter. Do we tell this story with words of caring and love, or with pity, fear, and dismissal.  Do we objectify the people with the disease or do we work to see beyond the  disease?  We need to find a cure, of course.  We need to understand how to prevent this disease.   We need to understand how to treat.  And we need to create moments where isolation is broken.   We need to accompany people through their lives.  We need to follow the intonation of one’s voice and one’s body, to be able to leave words behind and live in feelings. We need to touch, we need to sing, we need to listen with our bodies, we need to say,  “I see you. I know you are there. You are scared. I am scared. We can help on another.”

photograph (c)2015 Arnold Kramer

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  1. Beautifully said. As a caregiver, I feel all those things, but especially the isolation, not from my mother, who has dementia, but from the world that dismisses her.