Unlocking the Silent Prison
In Parade, on November 21, 2010, Christine Wicker cites Michelle
S. Bourgeois of Ohio State University as an expert at communicating with people who have dementia.
Bourgeois suggests that caregivers communicate with written notes. An example is given:
When a father began asking “Where are we going” repeatedly on a drive, his caregiver handed him a note on which was written their destination and she told her father, “ The answer is on that notepad.” The father looked at the notepad and looked out the window for the rest of the trip without saying a word. I felt such sadness when I read this.
My questions are:
Did the father feel discounted when his daughter handed him a notepad. This is not the normal communication style before he had AD. Could he read the words? What messages did he receive?
Do people with Alzheimer’s repeat questions to have contact with others, especially with the human voice even if meaning is not being transmitted? Would the lack of human voice add to the progressive isolation of human contact?
When I was a caregiver for my mother, I got up every morning and said, “This may be the last day of my mother’s life. How can I not make this the best day of her life?” Each time she asked the same question, I answered it as though it were being asked for the first time.
It became my duty to preserve dignity and the human spirit in both of us.
I agree wholeheartedly with the article that they are all still there until they take their final breath.
I used my mother’s voice in a poem called Emily Dickinson, I’m Somebody.
I share excerpts from this poem:
…My words have all forsaken me,
My thoughts are all gone.
But do not let this thief
Forsake you from me.
Speak to me for I am still here…
…Speak to me and not around me
I am still here…
…I know my repeated questions
Are like a record player gone bad,
But my words are all gone
And this is the only way I know
To make contact with you.
It is my sole way of saying,
Yes, I know you are here.
This thief has stolen everything else.
Except for these questions
And soon they, too, will be stolen away…
…Yes, I am still here.
Help me keep my dignity.
Help me remain a human being
In this shell of a woman I have become.
In my world of silence,
I am still here.
Oh, I am still here.
From my current book:Breaking the Silence: The Caregiver’s
Voice
This poem also appeared in my earliar book: Mosaic Moon:
Caregiving Through Poetry.
I am not a scientist, a sociologist or a researcher. My views are based on my
experiences as a caregiver and my work today with other caregivers using writing as a tool to become one with caregiving and to discover what it means to be human.
As a final note, people afflicted with Alzheimer’s are called patients in this story. The word patient connotes a life totally in the hands of another. A single word can sometimes create a certain attitude and attitudes often lead to behavior that supports that particular attitude.
Our loved ones with dementia are still people just as my mother was a person to the very end.
