Apr 24, 2012

Translating in Alzheimer's World

“What’s she doing?”
“What did she say?”
“What do they think, that I’m dumb?

By Pamela R. Kelley
Alzheimer's Reading Room

When I hear my mother, Audrey, ask these sorts of questions, I know she needs me to translate. I translate the world.

I translate what she sees and hears and imagines from something upsetting to something understandable.

She trusts me. She trusts her friend, Sue. She trusts anyone in a clerical collar. But that’s it.

She’s on guard around all others, and suspects that they dislike her. She announces her suspicions loudly and emphatically. She can be seen as difficult.

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There was her next-door neighbor, Linda.

Linda ceaselessly walked up and down the second floor hallway. She kept her eyes fixed on the middle distance. She occasionally wandered into rooms with open doors. She rarely spoke. But Linda was attracted to the sound of voices, songs and laughter. She frequently came to Audrey’s door when I was around, talking and singing and laughing with Audrey.

I recognized that the sounds of merriment were attractive to Linda. But Audrey was disturbed by her silent appearances. I could hear it in my mother’s voice, just this side of upset. When Linda would enter Mom’s open door, Audrey wanted to know, “What is she doing? This is my room.” When we would pass Linda in the hall, Mom would tell me, “That one hates me. She never talks to me.”

While the latter was true, the former was certainly not. I wondered whether there was a way to help Audrey grow comfortable with Linda’s unavoidable presence and silent, expressionless stare.

I could see that the path to peaceful coexistence was worth pursuing – Linda didn’t deserve to have Audrey yelling at her; Audrey didn’t need to feel disliked or dismissed by Linda’s silence. I needed to interpret Linda’s silences in a way that Audrey would understand weren’t directed at her.

Here’s where a little poetic license is in order. I can tell stories. The story I told Audrey to defuse her suspicion of Linda was pure fabrication. If my mother asked, “What’s wrong with her?” I had a ready response.

“Oh Mom,” I said while holding her eye, wearing my serious face with my eyes open wide. “I heard that she fell.” Pause to let that sink in. “I heard she hit her head.” Pause again, as Audrey raised her hand to mouth in shock and concern. “She hasn’t been the same since.” Pause to watch how that registered. “Now she can’t talk.” That was my fable. I’ve told it numerous times by now.

Audrey asks me, invariably, “But where is her mother?” I report that Linda’s mother passed away. “I think she’s all alone,” I add. After absorbing that thought, Mom announces, “We should do something to help her.”

That’s my mother, though and through. I love this in her. She responds to the misfortunes of others with generosity and kindness. She needs a little help these days to access that impulse, but it remains there. I provide the help. I interpret the world to her in a way that allows her to respond naturally. In my retelling, she has the space and time to come to an understanding of Linda that replaces the conclusions she reached informed principally by the worry and fear and suspicion that are her constant companions.

My mother’s interactions with her neighbors are less upsetting to her than those with some of the care staff at her residence.

I’m keenly aware of my mother’s hearing deficit. Often, her question “What did she say?” is simply a reflection of the fact that someone spoke in such a way that Mom couldn’t hear. Maybe the speaker was talking too softly. More often, someone has spoken too quickly. Or was talking while walking, or looking elsewhere. Or maybe the comment was directed toward my mother before my mother recognized that she was being addressed. If I’m nearby, my mother turns to me to answer the inevitable,

“What did she say?”

At one time, I would have simply repeated the message. But then I began to recognize that I was missing an opportunity if that’s all I did. Wasn’t it better for my mom, in the long run, if the staff members spoke for themselves in ways comprehensible to Audrey? These days, I bridge the communications divide differently. I tell my mother, “Mom. I think Anna wants to tell you something…”

This does two things.

It gets my mother’s attention by using her name. And it gets the staff member’s attention by using hers as well. The next thing I do is invite the staff person to try again: “What was that you were saying?” ‘Could you repeat that more slowly?”

I know I’m breaking up the rhythm of the task-oriented staff, those who at times would prefer to quickly just do something in my mother’s room rather than go through the process: announce yourself, confirm that you have my mother’s attention, simply state what you will do or what you need, ask permission, keep smiling, slow down, await her reply.

But it’s the difference between investing a minute or two at the outset to reassure, and avoiding five or ten minutes calming the agitation and upset born of my mother’s confusion, insecurity and fear. As the care staff begins to learn that this method works best for Audrey, her ease with the staff increases and her naturally warm and helpful temperament comes forward.

As the translator, my job is to show Audrey that the other person isn’t a threat – someone best responded to with hostility and suspicion.

My translation services allows the more lovable woman I know to be more evident to those who have only known her through her experience of this illness.

By translating threats and dangers into normal, benign interactions, I know that through repetition I’m making those hours when I’m not by her side easier for Audrey in an important way.

This is part two in a three part series, also see --
Alzheimer's Translation Services
Translating Alzheimer's for Others

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

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