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.

A Death in the Family

I've posted about my brother before: first here, and then here.

He died yesterday morning. He was 66 years old.

Luz, the caregiver who adored him, was with him at the end.

After a day of sleep, full of morphine, Ed opened his eyes, saw Luz, laughed, and closed his eyes. Then gradually, he stopped breathing. It was 3 in the morning. He died at home, in his bedroom, surrounded by posters of trains. He always loved trains.

Later that morning, I came to his house and said my goodbyes. He was still in bed, looking peaceful and gaunt. His flesh was cold. His spirit was everywhere.

Ed was a rebel, a non-academic scholar, an original thinker. As the younger brother, my relationship with him was an endless adventure, a trying-to-catch-up.

Later that same day, I learned I have pneumonia. No, thank you, I don't think I'll catch up to Ed's latest move quite yet. It's "minor" pneumonia. I'm supposed to rest - which I will do later, I promise. Right now I have to go out and inspect a couple of houses.

Let's just say it's been a tough weekend so far.

Here's a photo of Ed performing Wagner's Die Meistersinger with the San Francisco Opera. He's the one in the center holding the staff.
Ed's life was something of an opera, too. I'll write about it when I gather my thoughts.

A 1954 Chevy Bel Air V-8

A couple of weeks ago, I posted this poem about my brother. It's about the night I got a call from an emergency room doctor telling me that my brother had suffered another stroke, and it's about how I was placed in the position of giving guidelines for whether to let him live or die.

He lived.

My brother is a long story, but the heart of it is that for the last 6 years I've been responsible for the care of and witness to the steady decline of a man I love, a man who knew a dozen languages, a philosopher who knew enough nuclear physics and computer code to make a tidy living while leading Sierra Club trips and pursuing his passion for trains - old trains, new trains, passenger trains, freight trains, real trains, model trains. He loved traipsing around the Sierra Mountains and the back roads of Italy.

When I presented him with a copy of a novel I'd written, he opened the covers, read the first page and threw the book against the wall. On page one I'd mentioned a 1954 Chevy Bel Air V-8. "They didn't make a V-8 in fifty-four!" he shouted. He did not suffer fools gladly, and often in his eyes I was the fool.

He sang in the Berkeley opera. He taught me to play guitar. He has a collection of old blues records that's like a field trip to the Mississippi delta.

He was a beatnik in an era of hippies, a cynic in an era of optimism, an alcoholic in an era of drugs. He supported every charity that came to his door.

A week ago, he had another stroke. I was with him yesterday. I am still the incompetent god, but still the only one on call. He is in hospice care. He has horrible infections in his skin and needs occasional morphine for pain. He fades in and out. Dementia has decimated his brain, but he still recognizes me and his old friends and - I swear - he understands what we say even if he can't respond. I am convinced that somewhere within all the confusion and incoherence of his mind there is still a kernel of clarity. I am convinced that he still wants to live and that he will let us know when he is ready to die. Until he is ready to accept death, I am not going to accept it for him. The hospice wanted to maximize his morphine and limit his other drugs, to limit his feeding, to consider what they view as a poor quality of life, to let him go. I disagreed, and by law I'm still the one in charge.

We were always telepathic. He came to me two weeks ago, inspiring me to read that poem. He spoke to me yesterday without opening his mouth. He still wants to live. I'm not making this up; it's too painful for fancy. He still wants to live.

Poem

Last night at Moon News Bookstore I read two poems and a song. Here is one of the poems:


March 4, 2006

I am in bed around midnight when the doctor
calls. She says my brother
is in the emergency room with high blood
sugar, dehydration, a possible stroke.
She wants guidelines.

My brother is sixty-four years old.
He has dementia.
He cannot feed himself or control
his bodily functions or, most days, talk.
Or even smile.
He lights up when he sees me -
you can sense it in his eyes.

As a child I chased
after him on a tricycle.
He taught me baseball,
rebellion, girls. Taught me to drive
our old Studebaker. Sent me
letters from California until
at last I followed, too.
Now he leads
on this new path.

"No heroic measures. Do not resuscitate."
“Okay,” the doctor says, "what about a feeding tube?"

When the heart stops, it is as if the
body has decided to die.
But if the body cannot swallow?
He slowly starves.

To the black bedroom a soft light comes
through the window from somewhere.
Rain is dripping.
Dogs are sleeping on the floor -
one with a gentle snore.
I am naked under flannel sheets.
My wife, head propped on hand, lies on her side, watching.
In that quiet night with a phone to my ear
I am an incompetent god,
but the only one on call.