365 Jobs, Day 27: What We Want (Part Two)

Cross-posted from my new blog, 365 Jobs:

Tuesday, January 27, 2004 

Ed, my brother, has dementia.  I'm his guardian.  Today I drive the truck to Ed's house in Albany to meet the new nurse, Sasha.  Ed already has a live-in caregiver but lately he's been more challenging, so I hired Sasha. 

Sasha has turned the furnace up full blast.  It's stiflingly hot.  Ed is sitting in his favorite easy chair trying to watch Chinese television.  He knows many languages, though in his current state he can barely speak English.  Sasha is trying to draw a blood sample from his sweaty arm.  Ed is not cooperating.  He tells Sasha, "You have no brain."  Even in his dementia he knows something that isn't yet obvious to me.

For a moment Ed glares at me.  Get her out of here, he says without opening his mouth.  Ed and I are telepathic.  I don't mean that in a woo-woo way.  We simply know each other's thoughts.  With the dementia it becomes more and more difficult, but sometimes it still happens.

At Sasha's request I remove the sliding door from the bathtub and install shower curtains.  I've already installed grab bars.  Ed's house was built in the 1930's and has never been upgraded.  Some of the ceiling plaster is caving in.  The roof leaks.  I'm fixing things as fast as I can.

I stop work at the end of the day.  Sasha never succeeded in drawing blood.  She's shaking.  When Ed lifts his arm, she flinches.  I realize:  She's scared of him. 

As Sasha is leaving, I meet with her on the front porch.  "This isn't working out," I say.

"You need to put him in a skilled nursing facility," she says.  "The doctor says he has half a year, one year max.  His body is shutting down.  You know that."

"He stays here."  I know what he wants.  He doesn't care if plaster is falling off the ceiling.  He needs this amazing collection of opera and old jazz from rare vinyl to modern CD.  He needs to thumb through the books of his massive library, uncomprehending but fascinated.  They are a part of him, artifacts of a broad and eclectic mind.  He needs the posters of trains on the familiar walls - B&O, Southern Pacific - and the old wooden floors he has paced for 30 years.  Take him out of here and he'll die.

That night, I get a call from Adult Protective Services.  Sasha has reported me for Elder Abuse. 

Sheesh.

There's to be an investigation, phone calls, paperwork, all of which will exonerate me.  For five more years I'll continue patching his home as if slapping bandages on his psyche, lurching from one emergency to the next, the longest repair job of my career. 

At last on Friday, February 27, 2009 Ed will die peacefully in his bed.