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Storytelling and Our Communities: Part II: Alzheimers

Posted about 10 days ago by Heidi Y.

Posted in Education, Research, Science Fiction & Fantasy and Self-help & Spirituality | Tagged with Alzheimer's disease, caregivers and storytelling

One of the most important things in this world we do is trying to connect with another person. We think it is easy; simply go up to someone and say “hi.” That’s an introduction on the most basic level. But is it a connection of lasting foundation? Of course not. Yet, this is how many of us spend much of our days, going from one “hi” to another, all the while not really making an actual connection with people.

Connecting with another person is one of the highest forms of social being for humans. If I’m telling you a story with a familiar structure you can identify with, your brain actually anticipates what I am going to say next. The point is that that’s good for both parties; we want to be in sync with other people. That feeling of synchronization is a profoundly satisfying one.
~ What Storytelling Is and Is Not by Nick Morgan, Forbes, April 14, 2015.

Storytelling is the way I connect with other human beings, every day. As a Children’s Librarian, it is my job to make use of body movements, pacing, rhythm and engagement in programming for my audiences. Mostly these audiences are made up of children and their caregivers. But one of the most surprising and unexpected audiences I try engaging and connecting with each week are adults with Alzheimer’s Disease.

ALZHEIMER’S

In pursuit of memory : the fight against Alzheimer's by Joseph Jebelli
Ask family members of someone with Alzheimer’s or another dementia: trying to talk with a loved one who doesn’t even remember exactly who they are can be very frustrating.
~ Alzheimer’s Patients Turn to Stories Instead of Memories by Joanne Silberner, NPR: Shots, May 14, 2012.

Because they don’t have the ability to recall memories in many ways, in essence, Alzheimer’s patients are living a story every minute of every day. Consequently, many of the patients I work with respond in startling ways to my storytelling, and none to which I am accustomed.

Take note of any of these behaviors that may indicate Alzheimer’s or another form of dementia. If you see any changes, it’s recommended to schedule an appointment with your loved one’s doctor:

  • Memory loss that disrupts daily life
  • Challenges in planning or solving problems
  • Inability to complete simple tasks
  • Confusion over the time or place
  • Visual spatial issues
  • New problems with speaking and/or writing
  • Poor judgment
  • Withdrawal from social activities
~ Tough Decision by Julie Young, Indianapolis Monthly, Jan 2015, Vol. 38 Issue 5, p.144-150 (full article accessible via EBSCOhost).
The spectrum of hope : an optimistic and new approach to Alzheimer's disease and other dementias / Gayatri Devi
The caregiver's companion : caring for your loved one medically, financially and emotionally while caring for yourself / Carolyn A. Brent
The comfort of home for Alzheimer's disease : a guide for caregivers / Maria M. Meyer ... [et al.]

MY STORY

I started doing outreach with Alzheimer's patients three years ago at a hospital volunteer program. As a children’s librarian, I was naturally wanting to work with children. Specifically, I had wanted to help with premature babies in the hospital intensive care unit, but with a total of 2000 volunteers applying each year, and many of those volunteers wanting to work with babies too, there was no availability. I was disappointed, but I had a choice to work in three other areas of the hospital. I had never helped with patients in a hospital setting before, so I looked over the list of three and said to myself “Eeny Meeny Miny Moe.” I closed my eyes and pointed. My choice was with the only off-site location, an Alzheimer’s Outpatient Program.

Stories are the most important thing I share with children. It is my way of connecting with children and their caregivers. (SEE: Storytelling and Our Communities: Part I: Autism) But how to engage, to connect, and be connected with a person who has Alzheimer’s Disease? I was worried a tiny bit, but the choice had been made and my first day was fast approaching. I read as much background material about memory loss diseases as I could from the library, as well as all the information the hospital volunteer program had to offer (which turned out not to be much information at all). Nothing prepared me for my time as a volunteer.

I am still surprised by the way children respond to my storytelling. Every story may evoke a different reaction for individuals, based on their experiences, even very young children. They may laugh at a funny image, or how I gesture while telling a passage, or they remember what that word or phrase represents for them. The reaction from Alzheimer patients while listening to my stories is also very heartwarming and encouraging to me, especially as a storyteller.

I have grown close to some patients versus others these last few years, because of their reaction to a story, or word, or vocal intonation from me. But they are all remembering. Remembering in images, moments, a fleeting impression. I have no scientific basis for this idea, just how they engage based on their relationship to the topic or the telling. I show pictures, or photographs, or picture book artwork while I am telling the story. Most stories I choose have something to do with possible connections to their past, based on the overall age of the patients. And they are usually shorter stories, primarily children’s non-fiction titles, or children’s picture book titles. These are short enough to keep them listening, and still informative enough to help them participate in the telling. Here are several titles I have used recently as the talking points for my storytelling:


Remembering Vera by Patricia Polacco
If you plant a seed / words and paintings by Kadir Nelson
It's our garden : from seeds to harvest in a school garden / George Ancona

I visit the Outpatient Program every week or so on my days off from the library. I go to tell stories, but what I come back with are more stories about my engagement with the patients, the feelings of joy mixed with sadness I experience each week working with them. I help with food preparation, with art class, with exercise class, but primarily, I tell stories.

The care professionals at the program claim they don’t see the difference in a patient’s progression of their Alzheimer’s until it becomes more severe. However, I can only visit once a week. I see marked progression in patient’s each week. All the patients I began to help in my volunteering have been placed in care facilities, which are permanent placement centers. Many I have come to know and respect, and love, have succumbed to this disease in my three years at the facility: Benny, Odella, Jean, Jo, M.J., and “thanks a million Maximillian.” I have changed their names, but the memories, and love of a story, their story is the most precious gift I have experienced in my life. I am a storyteller; what Alzheimer’s Disease has taught me more than anything, is each one of us must continue to tell someone our stories, every day. We don’t know how much time we have to make those connections with someone, or continue to make those connections with another person. It is our lasting memory at stake each day.

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