2 April

At 7:30 AM I regard, appreciate and generally take in the slick blue plastic pad that covers the foldout worksurface in my kitchen.  The latter is covered in Masonite, perfectly rounded, and it probably looked stunning in 1955.  In this era, I'm too internal and cerebral, a.k.a., spaced out, to notice or care about kitchen styling.  What is capturing my attention at this moment is the blue plastic floppy thing.  It gives every appearance of being precisely what it is not.  It is not slick.  It shines and shimmers, but it grips.  The things it touches do not slip, but hold fast.  That is the whole idea.  This is my blue plastic gripper.  Designed for quadriplegics, the one-handed, the weak, the elderly or the desperate.  It anchors a glass jar while I turn the lid.  It prevents my dinner plate from slipping...I have taken to eating here.  At this moment, it is my personal anchor, reassuringly functional.

Betsy, Marlou's cousin and the current all-night helper, wanders in.  I drink my morning tea, try to manage a smile.  Betsy mentions the eye.  It is the thing that I have been seeing daily and discussing never.  Marlou has gone blind in one eye.  She no longer sees.  The eyeball orbits crazily.  Coyote's cartoon eyes do the same when the Roadrunner smashes him over the head with a frying pan.  Marlou has been shutting the affected eye, speaking with a sort of permanent wink.  She's going blind.  My wife is going blind, losing the power to see.  And something about this is so wrenchingly sad that it crushes the tears from my own eyes like juice from an orange.  This development apparently fits within the hospice's keep-the-patient-comfortable parameters, but not within mine.  It is 7:45 AM.

The night nurse and I had a talk.  Who was the night nurse?  My eyes are not circling, but my brain is spiraling, but now I see him.  Rod.  I want to die, Marlou told him, I can't take this anymore.  Rod folded his arms respectfully and said he was sorry.  He said he was very sorry.  Actually, I was not sorry someone had heard this.  Some official needed to hear.  And now, maybe finally word of my wife's horror and abandon will reach a responsible party.  One with an M.D.  And there's Rod's question.  Should we consider heavy sedation?  Just knock Marlou halfway out and let her coast in a pharmaceutical sleep until the end.  I have decided I am all for this.  I am convinced this is what Marlou wants.  And what I want is for the doctor to call and discuss what laughingly might be called next steps.

The doctor calls in person.  She's not terribly keen on this matter of sedation.  She asks Marlou about the vomiting.  What if we can control the vomiting?  The medical team will inject Marlou with something that will dry up her stomach and cease, or greatly reduce, the retching.  Marlou is on an endless cyclical path...overcome with thirst, drinking water until she is sated, then throwing up the contents of her blocked stomach.  This goes on all day, vomit emerging without warning and with considerable force.  My wife, my private and decorous wife, lives in a world of bile-stained nightgowns and sheets.  The doctor is keeping her comfortable.

The doctor is taking her time, talking to Marlou's parents and hardly rushing off this morning, one must acknowledge that.  All of us, Marlou, her father and mother and me have talked it through, this pharmaceutical road to oblivion and decided it sounded just peachy.  Only this morning, while Marlou's cousin knelt beside her on the bed, I asked Marlou if she wanted drugs.  I asked this more specifically, in fact, twice.  With a lawyerly thoroughness and a stentorian voice, I told Marlou that it was possible to give her terminal sedation.  She would sleep until she died.  Did she want this?  I asked the same question another way, specifically referring to phenobarbital and its sledgehammer effects and going into a deep slumber until the end.  What about this?  Yes, Marlou said.  Yes and yes and yes.

Which got me on a sort of phenobarbital roll, somewhere between resignation and relief.  But within a few hours the doctor was at Marlou's bedside and asking a very different question.  What if?  Drying up her stomach, ending her vomiting.  Shouldn't we give this a try?  Marlou said she wanted to die a natural death.  This sounded utterly ambiguous to me.  Very well, the doctor said.  She ordered a costly and difficult-to-obtain injectable from some distant realm.  Someone called to say that a courier was on the way.  No one can claim these hospice people are slouches.

I am convinced that Marlou's desire to please people is so deep-rooted that even now she will not easily say what she wants.  I think that I should be able to intervene here, help her speak her mind.  But this is like a Greek drama, and the leading character is fate.  At this juncture, her psychology is part of her destiny.  She has spoken her lines, delivered her part, and the doctor has done the same.  And now I have to exit.

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It turns out that ordering Domino's pizza takes considerably longer than calling in home healthcare staff.  We can get you someone in an hour, the agency tells me.  I have decided that Betsy and Liz and Laurel and Susie and Debbie comprise an impressive cast, but they need understudies.  The first arrives in late afternoon.  She is a Tongan, with shoulders wide enough to get her into the NFL.  Call me Bo, she says.  She has a plastic name badge, promises to stick around for the next 12 hours, and that's good enough for me.  I roll into the bedroom and introduce her to Marlou.  From the front room, I hear Marlou's father ask in his hard-of-hearing voice if this woman is a nurse.  I have no margin, no tolerance for anything, nothing but fatigue and general ire.  I want to tell him that Bo is not only a nurse, but a qualified brain surgeon.  She has been called in to perform an operation.   Bo will separate the halves of Marlou's skull with her bare hands and pluck out the brain tumor like a rotten olive.  It's very impressive, I want to tell him...you might want to have a look.  Another phone call, this time from the hospice nursing office.  There's a night nurse on the way.  We are staffing up around this apartment.

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At dusk something creeps in through the window cracks, slips under the carpet and emerges fresh and cool from our uninsulated plaster walls.  It is the future, tinged with the dread I carry from childhood.  Things shift an angle.  I roll to Marlou's bedside, adopt the familiar hand-holding pose, and she yanks her hand away.  I ask her what is wrong.  Oh, Paul, she moans, stop it.  I reach for her hand.  It is not clear to me if she can see or what she can see.  She jerks her hand away, what is left of it, bony and light as an emaciated feather.  Go away, she tells me.  Honey...I begin.  She tells me this is stupid.  Everything is stupid.  I ask if she is in pain.  She manages a surprisingly loud no.  And, she adds, go away. 

Things are ramping up, heading a certain direction, and even the home health aide, this one a Filipina, is looking alarmed.  I decide that none of this is going to hit me.  I do something manipulative and self-preserving.  I ask a leading question: would she like her mother and father?  Yes, she says.  Yes.  Now.  Okay, I say, and send the aide upstairs.  When I hear the footsteps of the parents, I roll into my office, mutter something to the father and shut the door.  A bedroom colloquy ensues, the hard vocal edges reaching me, but not the words.  There is vomiting.  I roll into the bedroom and offer to lower the bed.  Marlou nods wearily.  We have transitioned into night.

The night nurse is named Jean.  She arrives fresh and enthusiastic.  How this is possible at 9 PM eludes me.  I tell her Marlou has been angry.  I also tell her of what has more recently transpired, that Marlou has told me she is frightened.  News of the latter washes over my face like sad clown paint.  My wife is paralyzed and blind and frightened, and the night is young.  Jean and tells me she is going to remain in the apartment for several hours.  What the hell.  I tell her that I am going to bed.  Not to sleep, of course, for that hails from my now distant past. 

With all this staff present I go for maximum assistance.  The aide helps me off with my clothes, positions my legs under the sheets, and I throw a T-shirt over my eyes to block out the full-bore medical illumination.  Presently, Jean turns down the lighting.  She pulls up a chair and talks to Marlou.  She asks about pain.  Marlou grunts.  Jean tells me the room reminds her of a restaurant in Honolulu.  I mention that Marlou's parents live on the north shore of Oahu.

Jean begins talking about her days as an Army nurse, how she liked walking in the sand near the hospital at Kaneohe.  Does Marlou like the warm sand?  Can she feel it now?  All granular and squishy....  I say that Marlou always loved Hawaii.  I'm using the past tense, and I can't help it, because this is creeping into everything these days.  She loved Hawaii and the way the air felt, she said, like body temperature.  The amniotic climate.  Can you feel the sand, Marlou, asks Jean?  Marlou says yes.  She smiles.  This is the first time I have seen my wife smile in what must be a week.  Her face even in the dim light is open and childlike.  Marlou squeezes my hand.  She loves the warm ocean sand, she says. 

And it has always been here, all this time, whatever this is...hope.  It is something I do not easily experience.  I have endurance but lack a natural belief in tomorrow.  Which is exactly what Marlou has brought to me and now am losing and have to find again. 

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The new supports for my tomato plants arrived in the post this very afternoon.  I have pumped so much blood meal into the California soil that the lettuce wriggles its roots in anticipation of a salad plate.  Avery is gearing up for a weekend trip to Disneyland, wearying his mother with a six-year-old's account of the afternoon.  Inside, Marlou has been breathing watery and irregular breaths.  A nurse and a psychologist, here are on separate missions, have both told me in the most unobtrusive ways that this long afternoon, with California bursting with spring life, that this will be the last for my wife.  Joan, her mother, Dick, her father, hold one hand while I hold the other.  Marlou's rattling gasps would sound ghastly but for what has transpired in this bedroom over the last few weeks.  This is it, says the nurse.  There are no breaths.  And now there is no Marlou.  She is dead this second day of April, 59 years old.