Wednesday, March 28, 2012

Reaching Midnight

My mother has dementia.  It is all too easy to say she suffers from Alzheimer's disease, but I have learned that there is no way to diagnose Alzheimer's until after death when an autopsy reveals the pitted and shrunken brain of a true victim of the disease.  So, I say she has dementia.

It started slowly.   My father died four and a half years ago, and at first, my brother and sisters and I thought that she was grieving, suffering from depression.  Forgetfulness can be a sign of depression, as can changes in habits and interests.  My mother didn't read anymore.  She was a constant reader, the flint to my reading fire.  Now reading was hard and required focus, which she lacked.  She was moody and terse, quick to anger.  When friends called, she dismissed them.  Too tired, too much hassle, no, no, no.  And of course, she forgot.  First, she forgot that she had already told me who called and what they said.  Then she forgot she had appointments.  She forgot that she had just bought two bags  of groceries and went to the store again.  And again.  She bought three bags of groceries.  She still bought more.  Mom forgot how to have fun with her grandchildren.  They were afraid of her.  She forgot to take her medicine.  She forgot she already took her medicine.  She forgot what day it was.   Mom forgot my birthday. She forgot she had already given the granddaughters their Christmas gifts and yelled at them for snooping and prying. She forgot to be rational and use logic.  Why shouldn't she drive?  If she wrecked the car, she would die -so what?  But what about the other car that you crash into, Mom?  And what about the baby in the backseat...?

She knows who we are.  There has not been a moment yet that she has seen her loved ones and not known who we are.  I am so grateful for that.  I am frustrated by her lapses now, but I know that the worst is yet to come.  I ask her questions now, and I prod her for stories.  On Halloween, I pick her up to take her to my sister's house.  Her hair is wind-blown, and she wears an old coat.  The silver white hair is her greatest feature, and now it suffers from lack of affection.  My mother wore lipstick and slacks to the grocery.  Her wardrobe is haphazard and monotonous these days.   "Do you remember how you always brought us trick-or-treating?  Dad was always in the fields, so it was just you?  Do you remember?" I ask her in the car.  And maybe she remembers, and maybe not.  But she tells that story to everyone the rest of the night, including me.

"Ask Grandma about the blood pit in Murrayville," I urge my daughter.  She does, but Grandma doesn't know.  "Yes, you do, Mom," I say.  "It was behind the funeral home where your grandparents worked.  It was where all the blood went - remember, Mom?"  And she nods her head, and tells me about her grandparents and the legendary Murrayville, Illinois where she spent so much of her childhood.  Those moments are golden.  She still knows who we are and more importantly, who she was.  Watching her realize that she was someone else once is really the hardest part of this disease.

Memory is such a tenuous thing, really.  It floats around in the mind like cirrus clouds- those thin and insubstantial ones that can be gone in a minute.  When I read Terry Pratchett's final book in the Tiffany Aching series, I was awe struck by the profound and moving passages it contained about memory, especially since I knew that he had been diagnosed with Alzheimer's.  In an interview he recalled his favorite memory - the night his daughter was born.  His words are not unique or new.  It is the simplicity of what he says that captures the reader:
 "...the elation – I mean, nothing could’ve gone wrong that night.

“I think I’d hate to lose that memory.”

It is the feeling that accompany the memories that really make them worthwhile - whether it be elation or sorrow.  That is why we store memories despite their transparency.  When  I read I Shall Wear Midnight by Pratchett, I felt like the book was just for me.  The characters and their conflicts reflected my problems.  I felt known.  The memory I have of the book was a memory itself as the the village witch tends to the dying Baron.  The old man speaks:

"The hare runs into the fire.
The hare runs into the fire.
The fire, it takes her, she is not burned.
The fire, it loves her, she is not burned.
The hare runs into the fire.
The fire, it loves her, she is free....
It all comes back to me!  How could I ever forget it!  How did I dare to forget it?  I told 
myself I would remember it forever, but time goes on and the world fills up with things to 
remember, things to do, calls on your time calls on your memory.  And you
forget the things that were important, the real things."
And then, despite his nurse's dismay, the Baron tells Tiffany about the September day and the little boy in the tweed jacket and how his father sang.  The fields burned and the animals ran before it.  One hare looked at him - directly in the eyes- and then turned and jumped into the fire.  His father told him the hare song.  It was a day of elation for the child baron.  And it was the memory he took with him to his death soon after he shares it with Tiffany.

I am not quite sure who I held closest when Pratchett told me that story in I Shall Wear Midnight.  It might have been my dad who I had already lost, or my mother who I am still losing bit by bit.  I do know, however, that I ache where my heart is and a lump forms in my throat.  I do know that he is telling his own story as much as he is telling my story, or anyone else's for that matter.  For now, the world still turns and we find and forget, we create and we destroy.  But one thing is ephemeral.  Not memory - but those feelings that accompany them.  

We beg and beg and beg, and finally Mom says okay.  We gather around the kitchen table and she quickly reads to us from The Wizard of Oz.  Around us are the signs of cleaning and housework, but for now, she is ours.  I feel special and loved there at her knee.  The story comes off the page, and her precise and practiced voice brings us all to a different world, if just for a minute in time, if just for this one perfect moment.

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