Sunday, August 16, 2009

Winding road

In the old hometown again this weekend.  When we walked into the nursing home where Mom will live out her days, she was at lunch. A week or so ago, my sister told me that Mom's taken another 'turn for the worse', and sure enough, seeing her sitting at a table with chicken-strips and salad in front of her, holding a fork idly in her hand, I realized this might be the most telling 'turn' to date, on this long winding road of Alzheimers:  Mom wasn't eating.  My mom who, as far back as I can remember, not only never left a morsel of food on a plate, but ate by the clock (meaning if 6 pm came around, she headed toward the kitchen, even if she'd just gotten home from a big smorgasboard an hour earlier), ate when she was stressed, when she was sad, when she was happy--well, whenever anything--seems to have lost her taste for food. 

Just last week, after talking to RE, I emailed our other sister, and said, "How many more turns for the worse can there be?"  There have been so dang many switchbacks, I feel like we're clinging to the side of a canyon with only half the wheels of the car still on the road.  When I said hello to Mom as she stared blankly into space, holding a fork, there was no recognition in her eyes.  For the first time, she had absolutely NO idea who I was!  Even when I told her my name, nothing changed.  Every other time, she has either broken into a smile or tears when she sees me.  But that's all gone now.  This winding road is a one-way street, I'm pretty sure, even if she can back up a little now and then, for a single strange moment in the middle of her incoherent life.

But she's malleable, Mom is, and didn't resist when I wheeled her away from her half-eaten lunch down the hall to her room.  RE, her daughter, E and I sat and had a conversation around her.  Mom was having a 'good day', though so she made a statement or two as we talked. Barely recognizable, of course, but sounds that had a rhythm of conversations to them.  But she also easily flickered out of the conversation as well.  It may sound strange to you, but I had honestly never considered that (even though she's forgotten words, how to speak, just about everything else) she'd also 'forget' how to hear. When she 'flickers out', so to speak, she doesn't seem to be able to see the world around her, or to hear it.  She can be looking a person straight in the face, and doesn't see them.  What a pervasive blankness it is, as cold and hard as a blizzard.  Sometimes it's all I can do to breath when I'm around her.

In the middle of our conversation, and between unfathomable jabbering phrases, Mom said one whole sentence crystally clear. "I want to go upstairs."  My eyes filled when she said it.  I know what she's saying.  "I want that for you, too, Mom," I answered.  'Upstairs', where the holes in her head will be filled back in, where she'll be able to walk, and speak and think with clarity.  I sometimes try to imagine what it's like to live in her body now, to be so bewildered by even the most ordinary of events and people.  Her lips are permanently quivering now, her unfocused eyes brimming with tears.  Everything scares her!  It's more often the case with this dread disease that people get violent, that they lash out in their confusion.  But Mom's fear comes from her true self, I think.  It's organic to her nature to cry and be scared and feel like the world is out to hurt her.

It occured to me last night that this winding road she's traveling is one big loop back to where she began, 79 years ago.  She can not longer walk, speak or control her bodily functions.  She's been reduced to the age of infancy, where needs and desires can only be expressed through sobs and full-out wails.  And...the only name she knows, the only voice she responds to is "Mama", who, at this end of her life, is my sister, RE. 

It's an odd thing to feel nostaglic for the way she was six months ago, to miss the 2-year-old, little girl mother she was then, when she could still communicate and laugh and eat.  But I do miss that person. But mostly, along with her spoken and unspoken cell-deep desire, I wish she could just go 'upstairs,' that she could leave this broken brain and body sitting in that odious wheelchair, or lying on that low hospital bed.  I wish she could simply, utterly 'fly away,' fly to Jesus.  That will be a sweet, sweet flight off thislong and winding road.

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