Wednesday, May 20, 2009

It's a small world after all

My world has become so small.

The days are marked by the tiny triumphs and tragedies of caring for my mother. Until today, the tragedies--the broken hip, the fading memory--far outweighed the triumphs.

"What day is this?" she asks.

And minutes later:
"Is today Sunday?" she asks.
"No, it's Tuesday."

And minutes later:
"Was I at your house yesterday?" she asks.
"No, you were at my house Sunday."
"So Monday was the 16th?"
"No, the 16th was Saturday."
"So what's today?"
"What does the paper say?"
"I don't know. What does it say?"

And on and on until I want to scream. I don't. But I do snap. "What does the calendar say???" I ask, extra question marks of exapseration in my voice.
"I don't know. I can't see that far."
"Look at the one near your chair."
"It's Monday."
"Right, Tuesday." My blood pressure comes back down.
"The 26th."
"NO, IT IS THE 19TH." My blood pressure goes back up.
She can't understand why this is frustrating to me. In fact, in my least charitable moments--and there are many--I know she understands nothing about her predicament and hence mine. Worse, I believe she doesn't want to.

She reminds me of David Finch, the writer of Sunday's "Modern Love" in the New York Times, who wrote that his Asperger's syndrome is marked by extreme egocentricity, an inability to emphathize and an inexplicable interest in obscure topics.

My mother isn't suffering dementia. She has geriatric Asperger's.

So this explains why she is so demanding, why she can't see my exhaustion and why the calendar is so endlessly interesting.

This explains why she isn't my mother anymore.

It doesn't, of course, but it's so much easier than believing she has dementia, so much less painful than believing she just doesn't care.

After another of our unending rounds of medical appointments, we return to her apartment. She is exhausted by the effort of getting there. I am exhausted by the effort of engineering it. We return home and both fall asleep, she in her chair, bundled up in blankets, me on the day bed, uncovered. I am cold but I don't care.

I hear her get up because I am never really asleep, not really. She's off to the bathroom, her other favorite room in the house. Besides the calendar, she seems intrigued by her bodily functions and her hemorrhoids, which hurt her and make her cranky. I have dubbed it "'Rhoid Rage." I think this is hilarious. She thinks I am insensitive. I revert to my 7-year-old self: "Takes one to know one," I tell her.

Tap, click, click. Tap, click, click. She is coming back. I can tell where she is by the number of taps and clicks from her walker. But this time she's not running the usual pattern; I hear extra clicking and tapping. I don't open my eyes, but I'm listening.

She is in front of me, and I feel a sudden warmth as she spreads a blanket on top of me. Then she taps and clicks back to her chair, sits down and pulls the covers over herself.

I keep my eyes closed. It's better that way.


  1. I am so very moved. This is beautifully written. So many people can empathize with you, too. It is so hard when the daughters become the mothers... blessings.

  2. Your relationship, and loyalty, to your Mom comes through in your writing. Amid your frustration and moments of total aloneness, you are still able to have a sense of humor. Your writing is beautiful and horray for you that you are sharing (and good for us readers). Have you heard of Naomi Feil's book on The Validation Breakthrough: Simple Techniques for Communicating with People With Alzheimer's-Type Dementia? Visit my blog re: communicative stress in aging families