By Elaine C PereiraAlzheimer's Reading Room
There are numerous adverse changes that befall a person living with Alzheimer’s. Initially the most remarkable are short-term memory issues and confusion.
There are also many subtle, often explained away behaviors especially in the early phase of dementia that can baffle observers. By themselves, they may present as an occasional odd remark, illogical idea and/or a goofy action.
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What’s significant about these early behaviors is how infrequently they happen. Other than a headshake or raised eyebrow, most family members and friends might not even notice something is amiss.
Only in retrospect do others realize that these peculiarities have started to take on a life of their own. The frequency increases. The seriousness of misjudgment increases. And missteps that were once only occasional, mushroom into significant issues.
Memory, language, self-care etc. are all compromised by the neurological deterioration brought on by Alzheimer’s disease. And so too does appropriate emotional awareness, processing and responses.
Not Processing Loss
I do presentations across the country to help promote Alzheimer’s awareness, dispel the myths and share the highlights from my mother’s journey through dementia detailed in I Will Never Forget.
I have witnessed first hand the disconnection that people with Alzheimer’s have emotionally in processing and responding to loss.
In 2003, my brother was diagnosed with “stage 4 esophageal cancer with a year to live!” The plan was to share this devastating news with our parents together.
My head was turned away momentarily as I heard the elevator doors open and my brother’s unmistakable voice jabbering nonstop.
As I turned to greet him, I froze. I couldn’t speak for a second. I couldn’t move forward to hug him. I just stood still, in shocked disbelief. Jerry looked absolutely horrible. He was gaunt, bald, and pale. If I hadn’t heard his distinct voice first, I wouldn’t have even recognized this person as my brother. His stomach was already distended, cheeks hollow, hair gone and chest sunken.
As soon as Mom sees you, she’ll freak out, I thought, but strangely I was wrong. We went in and exchanged hugs and greetings. I was glued to Mom’s face, watching and waiting for the inevitable tearful fallout and questions like, “Jerry, are you okay? Your face is so pale. How come your tummy is so enlarged?” She said nothing. She conveyed nothing. Her face showed no signs of concern or bewilderment; how could she not notice?
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Only in retrospect years later did I finally realize that my mother’s inability to process the changes in Jerry’s physical appearance was the very first documented evidence of Alzheimer’s yet to be diagnosed.
Last year, in 2015 as I shared this story with my audience, I noticed a woman’s eyes well up followed by tears gently drizzling down her face.
She hung around after the event still clearly distraught, waiting to talk to me. She shared that her sister had passed away about 4 months previous but that her mother, a resident in an assisted living center, was very “blasé about her own daughter’s sudden death.”
“I didn’t realize that Mom is not mourning or crying like I am, because she doesn’t get it.”
Understandably this woman expected her mother to be as devastated as she was by her sister’s death and under other circumstances, her mother would have.
Alzheimer’s deteriorating effects on the brain have no boundaries and like everything else, emotions take a hit too.
My mother was very early in her Alzheimer’s journey so later she did process and weep in behalf of her son’s terrible diagnosis. But her inability to discern and be alarmed by the physiological changes that were so obvious to me, was an early sign of dementia; one we all explained away.
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Elaine C Pereira donates from every copy of I Will Never Forget to help support Alzheimer’s research. "Help Me Help Others" Buy a Book!
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Those living with dementia know, feel, and experience life much more than we appreciate. They know when they're being treated with respect and when they're not.
Once we believe this, it completely changes us - the way we communicate, the way we interact, and the way we see ourselves.
- Angela Lunde