Climb Aboard the Emotional Rollercoaster

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.)

The chapter below is excerpted from ALZHEIMER'S STORIES. A Caregiver's Guide to Mismatched Outfits, Goofy Hair, and Beer for Breakfast. Copyright 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 chapter ~~~~~

Action Steps

The Alzheimer's Association has a handout called Feelings which offers advice that worked for me with Billie. Following are some highlights; you can find the rest of the handout at http://www.alz.org.
Copyright 1997 Alzheimer's Disease and Related Disorders, Inc. All rights reserved. ED247ZJ. Revised 2002.

1. Allow the person to talk.
2. Don't assume that you understand what he or she has said or meant. Verify by rephrasing and repeating what you hear.
3. Look for nonverbal cues about what the person may be feeling or trying to express.
4. Be aware that the person will express painful feelings when he or she is ready.
5. Simply be present with the person as he or she works through feelings of loss and anger.
6. 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."
7. Find a support group to help the person come to grips with emotions -- if he or she wants and is able to participate.

Help Your Person Identify Their 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 at http://www.alz.org.

Copyright 2019 | Karen Favo Walsh |  www.AlzheimerStories.com