Apr 30, 2016

When Persons Living with Alzheimer's Think, Feel, and Live Their Lives

I just finished reading what I believe is one of the most important articles ever written about Alzheimer's patients - Fraying at the Edges - New York Times.

The article raised my heart rate, seemed eerie at times. But at the end I had tears in my eyes. Tears of Joy as I remembered when I went over the bridge to Alzheimer's World and realized - it's not about me. It was about my mom, Dotty.

It was at that point in time that I first started to realize that persons living with Alzheimer's are capable of more than we can imagine. More than we can imagine.

They feel more than we can imagine.

And, they are both fragile and often wonderful in their own way.

Of course, you have to give them a chance to live their life.

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A few quick excerpts from Fraying at the Edges

Memory Works

Outside, people with Alzheimer’s were looked on as broken. In the groups inside these walls, though, everyone had it. Alzheimer’s was normal. In Memory Works, she felt protected. Unhampered. One of the others called it a “safe place,” and that felt right to her. “There is nothing like being different with your own people,” is how she would put it.

She thought of her Memory Works comrades as the “underdogs.” Would anyone listen to the underdogs?



Ms. Noel asked, What does Ms. Taylor want to hear when she tells someone she has Alzheimer’s?

“I love you, anything I can do I’ll do,” she said. “The acceptance is more important than the particulars.”

Topic Search - Alzheimer's 3 Little Words That Work


She gave tips on how to communicate with someone with the disease: Focus on one subject, never ask several questions at the same time. She said that when a friend pelted her with multiple questions, it left her baffled, and she advised her, “Pick one.”

Topic - Alzheimer's Communication Tip, No More Blah Blah Blah


“Alzheimer’s brings on apathy is what I find,” she said. “Years ago, I definitely had more of an ego. Now I don’t have an idea of myself. And so I have less of an ego. Frankly, I don’t care what people think of me. I’m more in a survival mode, one foot in front of the other. Don’t spill the coffee.”

“I don’t know if I totally don’t care,” she said. “But I’m as close to it as I ever thought I could be.”

Topic - Connecting with a Person Living with Dementia


They told about the way the disease weighed on them, how they avoided the lock down that people with Alzheimer’s went through, how they chose forward as the only sensible direction to follow. The small details drew good laughs. How Ms. Taylor kept confusing their toothbrushes and finally threw away Mr. Taylor’s because she couldn’t figure out whose it was, even though, as she put it, “there were just the two of us.”



When you go read this article you are going to have the urge to stop - to drop out. If you make it all the way to the end you will find "little nuggets" all the way to the bottom.

Nuggets of information and insight that will likely improve your life and understanding a person living with Alzheimer's.

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