The Persistence of Memory

Alzheimer's disease reminds me of the famous surrealist painter, Salvador Dali.

The first time I visited the Dali Museum in St. Petersburg, Florida, was twenty years ago. My friend Dave and I wandered aimlessly through the galleries. As we viewed painting after painting, we were baffled. Why did a man who painted a basket of bread real enough to eat, portray people with rectangular holes in their torsos?

Dave and I returned to the museum the next day and took a guided tour with a docent. The information and interpretation our guide provided helped us understand. We learned about the artist and the surrealist movement. We discovered Dali's motivation, and saw the nuances and repetitive themes in his paintings.

Alzheimer's disease, like my first encounter with Dali's art, is different, surreal, odd and yet, somehow familiar. Like most caregivers, I thought I could decipher Alzheimer's alone. That wasn't true. I needed help with the interpretation and facts.

Dali said he painted, "to help discredit completely the world of reality." One of his most famous works is titled Persistence of Memory (1931). It's a stark landscape with a leafless tree on a barren, box-like cliff. The melted watches in it, Dali explained, show time has lost all meaning; and thus he ventured, all permanence was gone. Alzheimer's is like that, too.

I learned from Alzheimer's, as well as Dali, that common reality can be suspended. Names, hometowns, and traditional relationships don't matter inside the disease. My mother-in-law, Billie, couldn't remember my name. She called me, "that girl," or "her." It made me sad until I realized my name was irrelevant.

Each morning, Billie extended her arms to me and exclaimed, "Well, look who's here. I haven't seen you in years!"

The new reality of our relationship was Billie liked me, whoever I was. Her memory loss made each meeting a jubilant homecoming. We shared joy found in surreal places. I like to believe there was some persistence to Billie's memory that made me familiar, at least.

National Alzheimer's Awareness Month is our chance to remember, educate and share what we know about Alzheimer's disease. Soon everyone will know someone, or care for someone, with Alzheimer's.

If you are friend to a caregiver or Alzheimer's patient, choose a time in November to donate a meal, provide an afternoon of respite, run errands or just listen at the end of a difficult day.

If you are a caregiver, please ask for help. Take advantage of adult day programs and the resources available from the Alzheimer's Association. Don't wait until you're exhausted and overwhelmed. There are many people who understand Alzheimer's and will help you navigate its surreal path.

This November, we can honor those who suffer from Alzheimer's with our own persistence of memory. Remember to share what you learn. Talk about your experience with family, friends and new caregivers. Join a support group, or create your own. Awareness and knowledge will help us solve this mysterious disease.

(Speech given at the Candelight Vigil in Lakeland, November 2004)

Emotional Roller Coaster

by Karen Favo Walsh


As Alzheimer's disease (AD) progresses, the person with AD may lose their ability to understand why they feel a certain way. Additionally, when short-term memory loss becomes immediate, the patient won't recall what triggered the anger, fear, or sadness they feel. The patient becomes more confused because he doesn't know why he is upset, and worse, he may not know how to express what he feels.

It's the recipe for an emotional roller coaster for patient and caregiver.

The caregiver's frustration or sadness over the patient's diminished mental abilities is compounded by trying to understand what upset the patient, acknowledge the feelings, and additionally, relieve the anger, fear or sadness to reassure the patient everything will be okay.

The following is one of my personal experiences as a caregiver for my mother-in-law, Billie. (Frank is my father-in-law.)

Excerpted from the book:
ALZHEIMER'S STORIES. A Caregiver's Guide to Mismatched Outfits, Goofy Hair and Beer for Breakfast. Copyright 2003 Karen Favo Walsh. All rights reserved.


~~~~ Chapter Seven: Our Daily Grief ~~~~

Tears follow wrinkle detours as they slide down Billie's cheeks. Reddish-brown circles surround her tired eyes. Tiny pupils lack focus. She is lost in a world where emotions are real, even when the facts aren't.

"Betty is dead," she sobs.

I wrap my arm around her shoulders and squeeze. Her sister isn't dead.

Alzheimer's causes Billie daily grief. Health professionals call it "sundowning"; an unsettled or depressed behavior in Alzheimer's patients that usually occurs in late afternoon or evening.

Despite medication to relieve the symptoms, Billie suffers intense sadness. She stops crying, but her grief lingers. We sit in silence on the screened front porch of the home she shares with Frank. It's a balmy Florida spring day. Mockingbirds call and squirrels chatter in the eight oak trees. We watch Monarch and Swallowtail butterflies dance from flower to flower in the garden.

Billie begins to shake. "Frank is dead," she wails.

"No, he's sleeping." I reach for her hand.

Her voice quivers, "No, he's dead." Her eyes are wide with fear.

"Come with me, Billie." I lead her through French doors into the living room. Inside, Frank snores in his big blue chair. An unread book rises and falls on his stomach.

He looks so peaceful, I hesitate.

Billie whimpers beside me.

"Hey Frank." I wiggle his shoulder. "Wake up and show Billie you're alive."

"Aaah...oh...um, hello."

"Frank, are you okay?" Billie whispers.

"I'm fine, Billie."

Her face relaxes. "Thank goodness."

Frank smiles. He closes his eyes.

"Shhh." Billie puts her finger to her lips.

We return to the porch. Our neighbor Bill drives past in his blue van. He honks and waves. Billie smiles and waves back. She stares at the empty street.

"I miss my parents so much." She lowers her head into her hands. More tears spill from her eyes. She sniffles. "My dad was a lawyer. He worked to take care of us. My mom. . . she did the best she could. She tried so hard."

Billie's voice falters. I move closer.

"Your parents still love you," I say. "You'll be okay."

Billie sighs. She nods agreement. She wipes her nose on her shirt sleeve.

"Would you like to go for a walk?"

She says "yes" the third time I ask.

We stroll the neighborhood. We pick lantana, pet dogs, talk to squirrels and admire the purple flowers on the jacaranda trees.

We do this the same way, every day.

~~~~ end of chapter ~~~~~

The Alzheimer's Association has a wonderful handout called "Feelings" which offers advice which worked for me with Billie. Following are some highlights; you can find the rest of the handout at:
http://www.alz.org/Resources/FactSheets/FSfeelings.pdf.

ACTION STEPS

~ Allow the person to talk.
~ Don't assume that you understand what he or she has said or meant. Verify by rephrasing and repeating what you hear.
~ Look for nonverbal cues about what the person may be feeling or trying to express.
~ Be aware that the person will express painful feelings when he or she is ready.
~ Simply be present with the person as he or she works through feelings of loss and anger.
~ Acknowledge the person's feelings; don't try to "fix" negative feelings or dismiss them. Avoid statements such as: "Don't feel that way." "You don't need to worry about that." or "That's not going to happen."
~ Find a support group to help the person come to grips with emotions -- if he or she wants and is able to participate.


HELP IDENTIFY EMOTIONS

~ Realize that as finding words becomes difficult, so will the person's ability to label his or her emotions.
~ View difficult behavior as an expression of emotion and a chance to identify feelings.
~ Be aware of depression. Alzheimer's disease and depression have many symptoms in common, such as feelings of worthlessness, sadness, crying, refusing to eat or losing weight. Talk to a doctor if you think the person may be depressed.
~ Know that it can comfort the person when his or her feelings are identified and acknowledged.
~ Share your own feelings -- negative as well as positive. For example, say, "I feel sad too, but we'll get through this together."

There is more good advice on how to help manage emotions, and how to avoid surprises and create structure in the handout.

Copyright 1997 Alzheimer's Disease and Related Disorders, Inc. All rights reserved. ED247ZJ. Revised 2002.




~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The information provided is for informational purposes only.
It is not intended to replace or substitute for medical, legal
or financial advice. This article may be freely reprinted/
redistributed in any medium as long as the entire article
and author credit are included.

Karen Favo Walsh is the author of ALZHEIMER'S STORIES.
A Caregiver's Guide to Mismatched Outfits, Goofy Hair and
Beer for Breakfast. (ISBN 1-59113-418-8.)
Available online: http://www.booklocker.com/books/1428.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~