Chapter Eight: Just Like “The Notebook”

 

Let’s talk for a moment about my qualifications as a potential medical proxy:

 

  1. I’m the next of kin[1]
  2. I have no fear of medical personnel or situations, so I’m not afraid to question if something seems off. Loudly, when necessary.
  3. I manage the shit out of any situation I walk into; it’s just my nature.
  4. I have an actual medical background beyond a street pharmacist on speed dial
  5. Fucking all the things
  6. This thing I’m about to tell you in particular.

 

And this thing?  Jesus.  If I did this thing for you in your hour of need you would beg me to take control of your shit.  Which is why I waited until now to talk about it—I needed y’all to understand the kind of stress I’m under, and why I can’t go around performing miracles for all of you.

 

But I did perform a miracle in Colorado, right before I ended my first visit.  And I will likely never get credit for it, because other people are assholes.

 

 

Dad and Marsha were in two different facilities—ten minutes apart by car but the gulf fixed between them was formed by greater barriers than distance: their mutual fragile condition, medical bureaucracy, financial considerations, insurance companies, and possible mental health ramifications all flung themselves into that middle distance as if all the universe ever really wanted to see was a pair of geriatric star-crossed lovers.

 

After speaking with Marsha’s lead physician, her care manager, and the chaplain at her hospice, I learned that her timeline couldn’t be fixed any more firmly than weeks-to-months, or thereabouts.  Basically, she wasn’t going anywhere in the next few days—and everyone wanted a piece of the hospital doctor who’d told her that—but I needn’t bother with holiday plans.

 

I had, without realizing it, bought my last Mother’s Day card.

 

Marsha had tumors in her jaw, neck, chest, abdomen, and pelvis—possibly infiltrating elsewhere, they stopped imaging after that.[2]  The one in her jaw might or might not have spread to her brain—again, they weren’t going to bother finding out.  Further testing to find out what sort of cancers or how fast the tumors were growing was ultimately deemed unnecessary: nothing could be done for her in any case, and any diagnostics or attempt at treatment would only cause more pain, which she did not want.  So she was granted free access to all the drugs and a full dessert menu.

 

There are worse ways to go.

 

My father, on the other hand, was suffering from CO2 toxicity and a bad attitude.  He didn’t want to cooperate with treatment, didn’t like having things on his face or in his mouth or having to sit up or do anything.  He wanted, he said, to see his wife and then die in peace.

 

Never one to let anyone do anything in peace, I waded in with the tough question:

 

“So you gonna make her watch you die, or will we just tell her we took you to live on a farm?”

 

The glare, y’all.

 

The GLARE.

 

But he relented, and agreed to outlive her.  After that… well, I already told you about the fight we had over “after” so let’s back up to what I was doing about his first request.  Because I really didn’t see the problem in getting these two people together in the same room.  I mean, none of Marsha’s cancers were contagious,[3] and Dad hadn’t yet developed an opportunistic infection[4]—though I warned him he was well on his way to one if he didn’t shape up—that could kill her before the cancer got its turn.

 

I bargained with Dad’s facility, where his doctors were worried that seeing her all sick and weak would be detrimental to his mental state.

 

ME:  Have you seen your patient lately?
DR:  (looks away)  Yes, he’s in poor spirits now…
ME:  He bit a guy last week!
DR:  Which is exactly why we don’t want to upset him further.
ME:  (narrows eyes)
DR:  (sighs)  Besides, we can’t take responsibility for her; there’s no way her facility—
ME: Leave them to me.  We’re talking about here, and you, and my father.   Who is screaming to see his wife.
DR:  …
ME:  (looks to ceiling, as though this only just occurred to me)  You know, it might even make him more complacent…
DR:  Hmm?
ME:  Well, you’re the ones who brought his wife in.  You might bring her back… if he behaves.  Cooperates.  Stops scratching people.
DR:  … We can’t feed her.
ME:  We’ll handle the food.
DR:  I’ll see what I can do.
ME:  You do that.  And cut his damned nails while you’re at it!  Jeeze…
DR:  (scuttles off)

 

 

I don’t know if you’ve ever tried bullying the care team at a hospice, but as a strategy I wouldn’t recommend it.  They work every day who are dying and worse, know they’re dying and nothing is being done to prevent it—the fact that they chose this (ideally) doesn’t make the reality any more palatable.  The nearly dead are a cranky bunch, and hospice workers are used to meeting shouted demands with patience, compassion, and impassivity.

 

Fortunately, I’m adaptable.  Realizing quickly that my usual tactics wouldn’t work—I couldn’t even get them to move quicker, though they never once tried to chase me out of a room or chastised me for putting my boots up on Marsha’s bed, so clearly there was some level of mutual respect—I switched gears and leaned into their natural empathy for dying people and orphans.

 

 

ME:  It’s just…  (looks away, tears up)
DR:  It’s so hard.  I…
SOCIAL WORKER:  I can’t even imagine… [5]
ME:  (shaky sigh)
DR:  Have they said anything about your dad?  His prognosis?
ME:  (shrugs)  They say it’s “up to him.”  Whatever that means.
DR:  (nods)  COPD, you said?
ME:  (nods)
SOCIAL WORKER:  That’s so hard.  And… it sounds like he’s really struggling emotionally?
ME:  Well, you know… he misses her; she’s his soulmate.  (bobs head)  They thought they had more time…
DR:  (sniffles)
SOCIAL WORKER:  (misty eyed)
ME:  I talked to his facility about trying to get them together… you know, maybe let them be in the same room.  Like The Notebook?[6]
SOCIAL WORKER:  (nods)
DR:  (nods)
ME:  But they said he needs his BiPAP and you don’t really do that… and—
DR:  No, we don’t… but—
SOCIAL WORKER:  Well, they could visit, couldn’t they?
ME:  (shakes head sadly)  He’s so out of it unless he’s had a good six or eight hours on the BiPAP.  And then he tires—
DR:  Sundowning… [7]
SOCIAL WORKER:  Yeah…
ME:  Yeah.  (looks down)
SOCIAL WORKER:  What if…
ME:  (looks up)
SOCIAL WORKER:  Well I’m just thinking… (to Dr)  Couldn’t we get (hospice) to transfer her to his facility for a day?  Just to visit?
ME:  (wide-eyed)  Do you think they would?
DR:  …
ME:  That would be perfect!  They could visit, chat, hold hands… we could get one last photo of them together…
DR:  I…
ME:  Oh, I’m sure it would give them both just the boost they need.  It might even add time!
SOCIAL WORKER:  (nods sympathetically)
DR:  … It… Well, his facility would have to—
ME:  (waves this off)  Oh, they already said they’d be fine with her visiting; they just can’t take her, you know?
SOCIAL WORKER:  No, of course not.
ME:  And, I mean, she’ll have to bring her own oxygen… but I’m sure that’s all in the ambulance, right?
SOCIAL WORKER:  (to Dr)  I  think so, isn’t it?
DR:  I’m… not sure.  I can ask.
ME:  (raises eyebrow)
DR:  … When I ask about having (hospice) pay for transport.
ME:  (beams)

 

 

And then you know I fucking baby-stepped both sides through every bit of the process.  No slip-ups.  No delays.  This was happening before I left.  Because I was rapidly approaching my maximum capacity for dramatic bullshit and couldn’t mediate one more argument between Mark and Ben over the deeper meaning of the lyrics to Hotel California.

 

YES, REALLY!

 

And when I finally got to tell my father that it was set, and his wife was coming the next day?

 

He didn’t believe me.

 

Why?

 

Because someone had been telling him every day that she would be there “tomorrow.”

(South Park) Kyle pulls the head off a VERY dead Kenny

Fuck you, Kenny

 

He fought his BiPAP that night, and when I arrived the next morning we had to scramble to get him semi-coherent before she arrived.  I ran around that LTAC stealing respiratory therapists from other patients for early treatments, hunting down the really good pulmonologist, everything I could think of to get my father up and functional for his wife.  The love of his life.  The most important person in his world.

 

Yeah, that still stings by the way… one of our painful come to Jesus shouting matches led to his tearful confession of just how much he loves me.

 

 

ME:  I want you to look at me and say, “I have something to live for.”
HIM:  …
ME:  …
HIM:  Since the day you were born, I’ve had something to live for.
ME:  (smiles)
HIM:  Next to my wife, you’re the most important person in my life.
ME:  (smile falls)
HIM:  (pats hand)
ME:  (looks at Offspring)
OFFSPRING:  (steps in)  Here’s something that might help you, Grandpa… (says things)[8]

 

 

You know what just occurred to me?  He knew how she felt about me when he said those words.  I didn’t, sure… but he did.

 

Let’s play it back again, with full Relationship Interpreter Mode on:

 

“Next to my wife, who hates your fuckin’ guts and wants me to cut you out of my life forever since she was unable to do it while I was in the hospital, you’re the most important person to me.  Behind her.  Second place.  I do rank the people I love, and you’re not on top.  Just… you know.  Be aware of that.  And grateful!  Because you were born with a vagina, and thus a terrible disappointment.”

 

But he woke up after she’d been there only a few minutes, giving everyone[9] a chance to tell both of them that all he’d really needed was to have her near again.

 

They shared ice cream, held hands, talked… I’d brought a photo album of their first trip to Vegas in case they wanted to stroll down memory lane, I got yelled at about the DD-214 (that’s still a whole ‘nother thing, I swear) and had a breakdown in the hall… good times.

 

When Marsha was wheeled away by the babyfaced ambulance driver (whom we joked was sweet on her, he was so reluctant to leave her and spoke so kindly of her) she gave my father one last sad, worried look, as if after all her fussing about needing to get back to the hospice it was only just now occurring to her that she might never see him again.

 

I waved to her as she turned into the hall and said, “Love you, Marsha—I’ll see you again.”

 

And the expression in her eyes as they passed briefly over mine was indecipherable.

 

 

 

Next up:

The dam breaks…

 

 

[1] Assuming we’re still talking about my father.  If you want me to do it for you… well, we’ll have to talk.  Because it’s a lot of work, and I don’t really know you—statistically speaking.

[2] My theory was this: the woman had been beating cancer for twenty years, and cancer was embarrassed.  I mean, a teeny woman like that kicking its ass over and over without missing a beat?  Nuh.  So it came in with all the reinforcements.  But hey, it still only killed her once so who’s the real winner?

[3] Are there contagious cancers?  Someone google that for me—I’m afraid to.

[4] Shitty family excepted.

[5] I really wish people would stop saying this.  It’s fucking horrible; stop trying to imagine it.  Why would you want to imagine it?  Fuckin’ weirdo.

[6] HAHAHAHAHAHA… oh, fuck, how does that movie continue to tug at heartstrings once people see the reality?

[7] I’ve heard a lot about Sundowners since I started caring for my dad, and you can feel free to google it or just read this but the general principle is this: late in the day, old people are done.  In dementia patients (or those whose illnesses cause similar symptoms) we get increased confusion, aggression, etc.

[8] He’s a good one, that kid o’ mine.

[9] Oh yeah, the full fucking entourage showed up in time to claim credit for her arrival: all three of her real children plus two brothers.  Mark kept having to leave to lay on the lawn and stare at the clouds… Offspring took his keys away because dude was high AF.

 

Lost? Start at the beginning.

 

 

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3 comments on “Chapter Eight: Just Like “The Notebook”

  1. Rivergirl says:

    Unfortunately, I CAN imagine the emotional stress lingering deaths and family strife bring. Not quite on the level of your awful crew… but close. When my MIL was dying, there were times I just found a quiet corner of the hospital to cry. And scream. You have to scream… for your sanity. These types of situations bring out the worst in people… you can scream, or kill someone. Screaming has less paperwork.
    But whatever else happens.. know that you did the right thing in getting those two together for the last time. That was an act of pure love…. whether they deserved or not.

    Liked by 3 people

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