Monday, April 1, 2019

The End Game *

The End Game 

It was a foggy Santa Barbara morning. I brought Sarah a cup of coffee. I climbed up the narrow stairs of the little condo.    I walked with quiet care. I tried not to spill on the new carpet.  The carpet still had a weird smell, but it felt good on my bare feet.  As I walked to our room, I thought, “How confining this place is.” I felt the walls come close to me.

A few years earlier, we had built a big home in Napa.  With four bedrooms, all our family could come and stay with us for holidays.  Sarah was an immigrant child.  She and her family came to the USA in the early days following WWII.  The Napa house was a fulfilled dream. During construction, I took a picture of her climbing high on the new foundation with arms outstretched to the unlimited horizon of a bright blue sky.  It was her joy.

“Careful Sarah. Don’t back up. You are only inches from the edge.”
She laughed and twirled.

We walked inside the skeleton of the house.
“Here, Mike. Stand here. This will be your office and we can put in a garden just outside your door.”
“Oh, Mike, Let’s put in one of those big greenhouse windows outside the kitchen.”

I told Sarah: “The contractor says we can’t have another fireplace in our small  sitting room. He says there is no space.” “He says there is no room for another fireplace in the master bedroom.”
“Well, screw that!” she said.
In the end, we had three fireplaces, and the home was something we created.  It was all we imagined. 

Soon after we moved into the Napa house, Sarah had another episode of cancer, this time a different form of cancer.  
We told friends, “No, it is not THAT cancer. This is a new and improved cancer.”  We laughed at our clever retort.   

The Oncologist told us everything from here on out would be palliative not curative.

Sarah was working as the Executive Director of the Napa hospice. She worked hard at her job. After the latest health news, she worked still harder. 

“Sarah, you’ve got to ease up. You are working 12-hour days.”
“What do you want me to do! Quit work and sit around waiting to…”
She didn’t finish.  One of our rules was never to speak of death.  We both knew she would die, but Sarah forbid any talk of it.

Later, I found a book by David Rieff, titled Swimming In A Sea of Death.  The author, the son of Susan Sontag, described caring for his mother at the end of her life. She was like Sarah.  She was alive. She would try anything to stay alive. She would do experimental treatments, radiation, chemo, and multiple surgeries. Everything.—Rieff’s book was a solace to me since the author’s memoir showed he had lived some of my life.

As with David Rieff, my fears were mine and were to be kept to myself. We could talk of anything, but never could we speak of the darkness we both knew was ahead.

As Sarah became more ill, her Board Chair called her up to St. Helena Hospital for a meeting.  I felt I knew what was about to happen.

I offered:  “I’ll drive you up. We can go out for lunch afterwards.”
Sarah shrugged. “It could take a while, this my regular monthly meeting.”
“I don’t care. I’ll just sit in the car and listen to the radio.”

I waited in the hospital parking lot.  Somehow, I knew this would be “the talk.” The talk where someone told Sarah it was time to stop working.
It was a hot summer day. I drowsed in the heat with the windows open. I parked the car near a van full of children. I listened as the mother lectured the kids about being noisy and laughing so hard and so loud.

Sarah came back to the car.  We sat for a while letting the air conditioner cool us off. I was quiet. Listening. Waiting.

“Well, she said we should plan for my retirement.” And the Board Chair said, You owe it to Mike to stop working.” Sarah told me,
“Really?  ‘She said that.?’
Yes, it was all very painful. I cried. I hate that. I hate crying.”

I felt very grateful for the compassion sent to me by the Board Chair. I turned it over in my mind: “You owe it to Mike to stop.” 
I was not ill. I was the caregiver. I was the husband.  How odd, I thought, someone was showing me kindness.

As soon as Sarah announced her retirement, my Santa Barbara daughter, Laura, went into action.
She hunted for a place on the Mesa, where she lived.   We all knew Santa Barbara. We had all lived there many years ago.

I told Sarah: “I don’t really want to move to Santa Barbara?”
“Do you want to be alone here in Napa?”
“I don’t want to be alone. Period.”
“I want to know you will not be alone. You’ll be near Laura.”
We continued,
I said, “Well, one thing I will not do is a move down to Santa Barbara while you are acutely ill. We need to go now while you are still doing pretty well.”
“I swear, I’m not going down there with you wrapped in a blanket and propped up with pillows.”

I had a clear image of that future. On some trips we had taken, Sarah had become very ill.  That image of Sarah, travelling while sick was born from experience.  

Of course, the car-pillow-blanket scene is exactly what happened.  This is how it played out:  
Because Sarah was always in clear denial, even after the “retirement talk” she continued her life with little regard for her illness. Whenever she could, she behaved as a normal healthy person. When invited to a Saturday afternoon garden party with several other women. She accepted, got dressed up in Purple (it was a “I Shall Wear Purple” Club).  Wearing a strange but cute hat, she headed out.  Her friend Sheila had taught her wig and make-up tricks to hide her true status. She looked great.

At the party, she pushed away people trying to help her climb some garden stairs and fell backwards.  She was wearing an intra-venous port for medications beneath her clothing.  Tearing the port loose, she was badly hurt.  She returned to the hospital.

When Sarah began her hospitalization, the grand plan to move to Santa Barbara was already in full operation. The plan executed quickly

· Sarah and I had bought a Santa Barbara condo picked out by Laura.
· The Napa house went for sale.  
· I quickly sold the house.

And so, I began what everyone called downsizing.  Only I did this alone. 

I was driving back and forth between the hospital and the house. I had to get the house empty within two weeks. The pressure was on.

My work to empty the house was the beginning of a long grieving process.  I moved through the house. My partner for 40 years was not there to argue that we should save this or that.  I began to throw things away with almost psychotic abandon.  I used the three car garage and threw things into a huge pile.  By the end, it was 15 feet in diameter and 5 feet high.  I referred to it in my mind then and my memory now as the “mountain.”  

It was a lifetime of objects.  The anthropologist would wonder who left this great pile?  Electronic devices, hundreds of books, blankets, pillows, carpets, baskets, broken chairs, perfect chairs, garden tools, large textiles stretched on frames, never used wine racks, little tables, unwanted gifts and our collection of big round mirrors..  

What should I keep?  Was I saving things just for myself? Was I saving things for both of us when she comes home from the hospital?

Eventually, I called our realtor and said:
“Just hire somebody to haul everything in the garage away.”
“Then pay them to do the clean-out. I’m done. I’m going to a hotel.”

We could not escape the hospital.

I walked down a long hospital corridor hall at the Queen of The Valley Hospital. It was afternoon. I walked to the big rose gardens surrounding the hospital.  This was part of my survival routine. Go for little walks.
I passed a Catholic priest who was a chaplain.  He recognized me.
He said, “Oh, are you still here? ”
“Yes, Sarah has been here 23 days so far. I though people never stayed in hospitals for so long.”
The priest gestured to hug me and I consented. 
“Could I stop in to pray with Sarah?”
Later Sarah told me how she enjoyed his visit. A person of no particular faith, Sarah said:
“I’m good with prayers. I’ll take them from anyone.”

We talked with the doctor about escaping from the hospital.  He agreed to let Sarah come and stay with me in the hotel while she continued receiving Intra-Venous antibiotics.  This meant I had to learn how to help administer the IV drugs.  Each day a nurse came to our hotel room and checked the process.  I learned what I needed to know.  My training as an Army medic helped.

Finally, we got the ok from the doctor. We gathered the pillows and blankets and drove to Santa Barbara.  It took two days to go 500 miles, but we made it to the condo.  It was full of packing boxes.  Laura had made up the bedroom, and Sarah went straight to bed.

Act 2

But back to that morning, I mentioned to you.  I carefully climbed the stairs with the hot coffee for Sarah. I brought the Sunday papers.
Instantly, I knew there had been a huge change. Her speech was different.  It was not sleep. It was not drugs.  It was not the marijuana from the night before.  No, something was terribly wrong.

“Sarah!  Sarah!”  “Do you know what day it is?”
“Uhh, No. It is Thursday.”
“Do you know the names of our daughters”
“Suzanne and….”
“Who are our grand children?”
She did not answer.

I went to the telephone and called the Cancer Center.
The nurse asked me, “Why do you think it has moved to her brain?”
“I just know.”  Without an invitation, I said:
“I have a wheelchair in our car.” “I’m coming in,"
By the time I arrived, our doctor came out to the parking lot and said,
“Let’s just wheel her straight over to the hospital. ,"
The doctor walked along with me and arranged for our room.  Nurses brought in a CD player with some music.   I called my daughters, Laura and Suzanne.
On the phone, I said,“Now it is time to come.”

Act 3

Friends and family have left you to be alone in the room with Sarah.  Now it is only you.
You wait in the hospital room for the doctor to come and pronounce the magic words. You wait alone by the bedside. You turnoff the music. You look around the room for objects you should pack-up and take home. There is nothing. Sarah was unconscious soon after coming to the hospital. 

You drive alone back to the condo where you had been together the past and last year. A few weeks before Sarah died, you secretly met with the Oncologist who gave a prognosis you needed to know. Sarah did not want a prognosis.  The doctor was eerie in his precision. 

You move to your favorite spot on the leather couch to watch “the pictures” and listen to “the music.”  For the past 12 months, you have been scanning photographs  and loading music onto your computer.  Your vigil with Sarah consisted of of sitting on this couch watching a lifetime of photos along with all of our special CDs. You  had 1200 pictures loaded by the end.

Now home from the hospital, you turn on the pictures and sit alone on the couch. It is puffy and you can sink deep into the cushions. You keep all the lights off and keep the blinds drawn. You close out the ocean and the flowering red bougainvillea.  Random pictures march by on the huge screen and the music is continuous.  You really need no one. The music and pictures are your loving companions.

The daughters arrive.  They ask you to stay on the couch while they help clean things up. They remove Sarah’s possessions.  They do not require your opinion. They are so earnest. They have brought a radio and a collection of black plastic bags. They close the door and turn up their music. You stay on your couch.  You hear laughter from the closed door.  You remember laughing at your father’s death.  We all must do that.   

The pictures scroll by for the entire 42 years you spent together. Not until later you will pick a few pictures for the memorial. Later, you will write an obituary. Later, you will turn over all the e-mail to your youngest daughter. Later, the eldest will prepare a playlist from the music.

You see, a picture of Sarah on a cruise.  Her hair has fallen out for the second time.  She bought a red wig. Oh, now Sarah is on a canal boat in Holland. You remember how she began to hemorrhage in the restroom.  There she is at the Tivoli Garden in Copenhagen. That was the night you complained about her drinking and you had a huge fight on your 40th anniversary.  You both pose at the bow of the ship mimicking Titanic actors.  The pictures pause for 1 minute then they dissolve, one after another.  Sometimes you can’t wait for the picture to dissolve.

The music does not match the pictures. It is running its own happy memory festival.

Unlike television, the pictures and music are endless. You remember everything about the past.  You can not change the channel. The past is now your companion. You try to scrape off the bad parts of your memories.  You cannot.

Alone again, you can now go into the bedroom the girls have cleaned.  It is sterile.  They leave nothing. On the bedroom wall are hooks for necklaces and earrings.  

We had played a game with this wall. You would pick a piece off, hold it up, and Sarah could tell a detailed story.  Sarah seemed to know intimate details on every single piece.
“Oh, you bought me that in Berkeley on Telegraph Avenue.”
“That one is from that little lakeside place in Missouri.”
“Don’t you remember, you gave me that for my birthday?”

Now all the jewelry has departed.  The wall is empty.  On the floor, you find one earing.


Blogger Unknown said...

What a privilege to read about this difficult journey written in such a kind and respectful way! Thank you for sharing your story and a glimpse of who your wife was.

March 11, 2018 at 3:11 PM  

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