Mar 8, 2016

Looking at Alzheimer’s Through the Eyes of Someone Living With Dementia

How do you look at Alzheimer's through the eyes of a person living with dementia.

“I feel like a non-person.”

Recently a daughter witnessing her mother’s bewildering decline from Alzheimer’s shared this revelation:

“I feel like a non-person.” Her mother said frankly.

By Elaine C Pereira
Alzheimer's Reading Room

Despite efforts to reassure her mother that she was loved, important and real, the woman continued to perceive her own essence as absent.

Through the presentations I give and at book signings, families have openly shared very personal and similar observations about their loved ones with Alzheimer’s. Enlightening. Scary. Bizarre. Tragic. There are as many common threads as there are unique aspects of each individual’s experiences.

One Woman’s Perspective—And Yours?

My mother lost her battle with Alzheimer’s in July 2011 just weeks shy of her 87th birthday. She too expressed remarkable insights and perceptions revealing glimpses of her vision of her world.

All of you have stories to tell and I would love to know yours via the comments section below. These are my vignettes as my mother experienced them through her perception of her world increasing warped by Alzheimer’s.

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Hallucinations: From I Will Never Forget

(My mother’s caregiver Colleen told me that a few weeks back) she had been completing bed-checks…when she entered (my mom’s) room. She heard Mom talking to someone in very clear, purposeful sentences. Colleen overheard, “I’ll take care of you” and “I’ll be there for you.” Colleen stepped further into the bedroom to see whom my mom was talking to, but no one was there. 
Mom turned and spoke eloquently to Colleen, saying, “You don’t see her, do you? I can see her, but you can’t.” 
Colleen answered, “No, I can’t.” Just as Colleen was about to reveal the identity of the invisible person to me, I said, “It was her mom.” 
“That’s right,” Colleen affirmed. “She said it was her mother.” 
I knew it! My mom had always described (my grandmother) as “a saint.” I was not surprised to learn that she was the person that my mother would offer to take care of.
A Daughter's Story of Her Mother's Arduous and Humorous Journey through Dementia

Knowing the end is near: From I Will Never Forget

Not long after New Year’s, I was reviewing with Mom the 2011 calendar and (her granddaughters’) impending birthdays on January 14th. From out of nowhere, she said, “I told God I was ready to go anytime.”

Her frank comment had me scrambling for an appropriate comeback. “And what did he say?” I asked.

“Oh, you know, He doesn’t really answer you.”

“I appreciate everything you do for me, Elaine,” she said. “I’m so grateful to have you.”

She continued in clear and coherent detail. “I know my memory is very bad. I get upset when I try to remember things …” She paused; I waited. “And I can’t. It’s very hard.”

Then, she tilted her head back and closed her eyes. My mom was nearly completely ravaged by a brutal, mind-zapping disease with a voracious appetite for brain cells.

The power of touch: From I Will Never Forget
The (hospital) bed was too high for me to reach (my mother), so I pulled over a chair and knelt on it. I stroked Mom’s face with my hand, kissed my fingertips, and placed them on her cheek. No response. A single tear crept down my face. This breathing body was not my mom.

I returned to the ICU every day, but Mom’s recovery from surgery was painfully slow. (She hadn’t spoken a single word for weeks) until Sunday. “That feels good,” she mumbled when I rubbed lotion on her face, but her voice was raspy and weak. (The sense of touch was so powerful for her!)

“She might not turn it around.” Dr. Tashka’s voice came from behind me as she stepped into the room. I suspected as much. (And Mom did not.)

And So Many More
The good, the bad and the ugly of how someone with dementia perceives their world, is probably quite fluid.

Compounded by diminished language processing and unpredictable verbalization's, virtually every fragment of their life is distorted.

And then there are the brief but eloquent moments of lucidity when the clouds seem to part. Although fleeting, I treasured those moments for and with my mom.

“Their reality is anything but real, but it is the world as they perceive it!”

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