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Friday, January 1, 2016

Self Doubt is not Always Alzheimer's (It's something else.)

It has been happening too often—that forgetfulness that makes me think, “Uh oh.  This is more than a senior moment.  This could be That.  It could be Alzheimer’s.”
Some of the worst moments I have kept to myself.  I have shared the less dramatic ones with family and friends—can’t exactly remember where I parked my car, lost my keys, the mail, my ten dollar bill that used to be called mad money but had become emergency gas money—it’s gone.

 When did I spend it?    I couldn’t remember. 

I told those stories to a few people who knew how to sigh or click their tongues sympathetically.  Yes, that has happened to me; the sighs and moans agreed.  No biggie. 

Only there were some biggies, and I wasn’t telling those too-big stories because I didn’t want to convince people I was developing Alzheimer’s disease.  I just wanted to see where I fit inside the broad range of how people as a group were losing it (memory, control, and my bearings); I hoped, similarly as we grew older together in the South where going crazy is kind of expected in certain ways—not feared either.

 I miss that socially acceptable way of growing older really, because as I have aged I have censored the telling of my Southern eccentricities and become more serious about monitoring behaviors that fit under that scarier heading of “symptoms.”

More serious than I have ever been before about how memory slips in aging, I still didn’t tell the other stuff.   I didn’t really tell the scary times when I couldn’t remember great chunks of key information, like my confusion about the amount of money for an online fundraiser for the local animal shelter (1,000 not 300, 000) which I was vigorously supporting on Facebook in front of many people who also love animals, only to get the amount of money to be raised wrong.

 I was forgetting what people wrote to me in their emails, missing the news of distant relatives who had died.  Really? When did she die?   I told you when she died in my email. Didn’t you get my email?  Yes.  I think I got it.  But I wasn’t sure.
And here is where we slip up on the truth:  I have been hastily managing emails because I receive many of them, and in my haste I have not really been reading the messages.  Only I didn’t really know that.  I thought I was reading them.

I am a veteran reader who grew up on Galsworthy, Tolstoy and Austen.  I have always been a lover of reading, only with the onslaught of email, texts and the bombardment of information on the front of every page, I have become something I didn’t know I could be or was:  a skim-reader.  Only I thought I was reading.  Only I wasn’t really, really reading so I wasn’t really, really forgetting key information because I wasn’t really reading content.  But, I was holding myself responsible for knowing that content.
As a result, I have known some miserable moments of self-doubt, confusion and done a rather poor job of tamping down the fear that something worse was happening inside of me.  I was going to make that shift from charmingly eccentric to someone afflicted with a form of dementia of the Alzheimer’s variety.

It took me a while to figure out that so far, that isn’t the case.
The first clue that I had become a skim-reader and didn’t know it was when I asked friends and relatives to tap the Like button for a page I supported, and people who loved me, ignored me. I could see being ignored by people who don’t love me, but when your family and friends don’t respond to a fairly benign request, your brow furrows.  Whassup?

I didn’t forget to ask them. They didn’t forget to respond.  There was a breakdown in the communication.  The answer?  I smiled when the truth dawned in me:  They were skim-readers too. 

I wasn’t the only one.  I come from a family of skim-readers, and I suspect that we fit inside a nation of them with lots of people like me (us) unaware of how much we are only skim-reading—and later, when held accountable for the details, don’t know them and fear the worse.

The good news?   It isn’t worse.  We just have too much to read and have begun to hit the delete button before we have actually read the whole message.

  The answer became clear when a friend of mine told me this:   “My book hit the floor again last night.  I thought I was still reading, but I wasn’t.  Finally the bedside light woke me up, and I realized that my eyes were closed and I was imagining that I was reading, but I wasn’t.  I was sleeping.”

 I have been doing a version of THAT—not the Alzheimer THAT!

The same realization hit me about that dollar amount for the animal shelter. I didn’t forget the rules; I never really read them, but I kind of thought I had, only I hadn’t. My eyes moved down the page—scrolling, is what they call it—but I wasn’t registering specifics because skim-reading isn’t the same as reading thoughtfully and carefully, digesting information and storing it away.

When I began to realize that I wasn’t forgetting so much as never actually reading what I thought I was reading, a great sigh of relief rose up in me.  My word!  I am not demented! I have become a skim-reader, and I didn’t know it.

I imagine that there are other people out there doing the same thing, keeping the same kinds of scared secrets about how much they apparently have forgotten of what has become common knowledge among other people (although there were a number of us who didn’t know our aunt’s mother had died ).  Maybe they have.  Dementia is real. My father had it—my grandmother, too.  But there is an alternative explanation for some of the behaviors known as “loss of memory” and in my case, it turns out that I wasn’t so much forgetting as never reading the whole articles or emails in the first place, only I thought I was.

I have pushed my glasses up my nose and pledged to pay more attention to the flying documents that sail across my screen so when I think I’ve forgotten something, I really will have.

Daphne Simpkins is the author of two memoirs about Alzheimer’s and caregiving:  What Al Left Behind and The Long Good Night.  Both are available on Amazon.

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