Mostly fair with scattered showers

That’s how I’m doing, with lot’s of help from those close to me.  Rich made sure of that, not that they needed his directives, but he was clear and made them promise.  These discussions came as a surprise to me after he was gone.  After 56 years it still never occurs to me that people waste time talking about me.  

The hardest blow was learning that he was telling others that the end was near.  He never told me that.  From his last admission to the hospital until he could no longer communicate he never told me he loved me, never called me pupshn.  His only personal words to me were the day of my birthday dinner, but still no “I love you” or “pupshn”.  Outside that brief window, he spoke to me like a caregiver he had not yet gotten to know.  

From his funeral service and the days following I learned that Rich had made his wishes clear on the care and handling of me.  I worked hard at understanding and ignoring the hurt, but each day became harder.  I managed quite well for 39 years before I met him.  I’ve done a damn fine job the past three years--being the warrior while he was the diplomat; being the bad guy so he good be the hero.  All of that evaporating in the last days of his life and I’m no more than a caregiver who needs guidance and supervision with spending.

I chewed on that for a while, but I just couldn’t swallow it down.  

Seven days after he died we had our first post mortem fight.  It was my third day back to work, and I learned from the first that I could get through the day until about 3 pm, when the dread would ooze over me, realizing I would soon leave work for the day, but I would not go to him.  He would not be at home, I could not get myself to his bedside.  The third afternoon was no easier than the first two, and I had only more days of chewing and choking.  

I can count on one hand the number of “fights” we’ve had in 15+ years, and they all go the same way.  It starts after days of trying to work  out my grievance  in my own head, playing both prosecutor and defense attorney.  Only after that has failed do I take it to the mat.    

I need to say “Ouch!”  I need to explain to him what hurts and why.  This post mortem fight went exactly as all the others.  I am met with absolute, set-jaw, refusing to look at me silence.  What woman does not feel THAT gasoline rushing towards her fire?  Rich has always told me (afterwards) how hard it is for him that I’m a “fair fighter”.  In the heat of it I can remind him that I’m angry at the situation, not him;  I’m fighting the situation, not the person; I’m scared and hurt; not trying to punish him.  It doesn’t matter.  All he can process is that I’m angry and he’s the cause.  Men are sloooooow learners.  He immediately goes into defense mode and his defense is silence.  Occasionally he’ll lob a panicked knuckle ball at me that has NOTHING to do with the topic at hand, lands just below the belt, and my mind reels.

Once I’ve covered everything from the prosecution table I deliver my closing summation, at which point frustration and exhaustion propels me to the defense table and I serve him to the best of my ability.  One of the Voices offers an occasional objection, always overruled and I slide into home with the defense’s closing statement.  Not unlike any other fight.  It lasted through the night.   I woke the next morning and got ready for work.  In love with him all over again.  

Now I can accept the last many days.  There were, after all, so many witnesses for him, explaining that he couldn’t handle leaving me, did his best to prepare me.  I just needed to say OUCH.  It requires a special skill set to fight with a dead man.  It seems I possess that skill set.  For what it’s worth.

Now I can smile to myself when his appointed people call to check on me.  I think they have an arranged schedule of shifts.  I’m no longer upset that I didn’t force the issue of my taking over the finances in the last few months.  It was the last thing he could still do and I couldn’t bring myself to strip that purpose from him.  Despite the fact that he made me promise never to use on-line banking (I promised with my fingers crossed), yet he left me with three checks and none on order, and the credit card expired in May with no calls to the bank to find out why the new ones hadn’t arrived.    Or the bill I got this week from his therapist for a $55 no-show fee even though he told me he called them about his hospitalization.  It’s all okay.

Because yesterday I opened and read the birthday card he gave me two weeks ago.  The one I opened at my birthday dinner and only pretended to read because I couldn’t at the time.   In his even worse than illegible writing he had written  “I will always be with you.”

I’m on top of the required tasks, I’m functioning with more ease than I anticipated.  I am aware and trying not to reference him multiple times in every conversation even though he is with me like never before.  I do not cry unless I’m alone.  

I am working through the finances, making necessary calls, downloading and printing necessary forms.  I have my two eye surgeries scheduled so that I can see beyond my nose.  I have started sifting through the rubble that a dead person leaves behind.  I am tending to everything Rich believed I could not (or should not) do by myself, reminding myself that for fifteen years he took care of me because I let him.

I cry a lot. Only privately.  I figure that as long as my tears do not exceed or prevent my functioning, I am entitled to all I want.  I cry for the things he did not share with me nearing the end, but there’s no more anger about that.  I cry for all the things I did not do well enough for him.  Mostly I cry because he is beyond my physical senses now and as much as he fills my soul, I ache for the sight of him and the sound of his voice, and the feel of his hand on mine.  

The many questions of how I’m doing will dry up long before the tears do.  I’m doing mostly fair with scattered showers.

The Beginning of the Firsts

I was surprised that I woke up this morning.  No reason.  Just mildly surprised.    I don’t remember any dreams--unusual for me.  I start my day normally.  Throwing up.  I thought that would end now that I have reached the post partum phase, but no bother.

Without thought I begin moving forward.  If I don’t go buy cat food today there will be a major riot.  And while I’m at it, there are a few other things, and Rich and I are all about being efficient consumers of vehicle petrol.  I’m starting to think this is a good idea.  I can still be alone, but I’m getting out of the house and dipping my toe back into Normal.

I soon discover that just like the obituary, no amount of prepping, proofing, and preparing  prevents me from making a few mistakes.

Our most favorite weekly errand is grocery shopping.  We long ago fell into a thoughtless, comfortable  pattern, disrupted or modified  periodically over the past three years by the cancer.  I head out and it occurs to me that I have not been to the grocery store in four weeks.  Just now and then popping in and out of somewhere to pick up one or two critical items.  Not OUR trip OUR way to OUR store.  I am ten minutes out before I realize that cleaning out the fridge should have come before shopping. 

When You spend three years cooking from scratch, and that routine comes to an abrupt halt, there is about three weeks worth of stuff in the fridge that needs to be put out of my misery.   Oh well.  

There is a “landmark”  on our route.  We call it the estate (not really an exaggeration) that has a lovely pond in front near the road and a sister pond not quite connected that is further back and curves around behind the mansion.  Since the completion of the Estate, sometime within the past five years, a pair of swans took up residence in the ponds before the sod was completely laid.  Since that time, at least once a week we drive past to run errands and every time look for the swans. Season after season.  Every time.

Most times we see them.  Once in awhile they’re out of sight from the road.  But still, every time we slow and look, Their presence in that ideal setting started to take on meaning for us over time.  Nothing that we analyzed or discussed, just a special thread in our tapestry.  Like coins in a fountain, each insignificant encounter creating shiny speckles beneath the surface until  each speckle blended into the whole and it was lovely.

I near the estate this morning and automatically slow by rote, and there is the pair of swans in the middle of the front pond, their white feathers glowing in the brilliant sunlight.  Like to blind you.  Swimming with them were five baby swans, just as white, not quite as graceful.    All the air was sucked from my body and the tears gushed in wrenching silence.  Not because Rich couldn’t see the baby swans.  Because I couldn’t see his smile at the sight of them.  

Quick maneuver out of the tailspin and I continue on.  I spend too long in Pet Smart for cat food.  Just because I can.  I feel no panic to return to him as soon as possible, to get to his bedside.  I allowed myself a moment with the dogs needing adoption confident that I have the sense to know it would not be a good idea.    I spend a long time watching the birds.  A long time.  I pass the aisle with the pet rat food and giggle.  No desire for a pet rat but I I’ve got a couple of Voices who want to entertain me with the various reactions that would be elicited by my acquiring a pet rat the day after my husband’s funeral.  

Then the grocery store.   Like most people, we have a favorite, and I’ve not been here in more than a month.  As soon as the doors slide open for me, and the cool air and subtle, familiar scent hit me, I realize I may not have thought this through.  One of the voices stops me from switching from my Rx sunglasses to my regular glasses.  Good call.

How can something be so familiar and so foreign at the same time?   Right off the rip I am slapped up the side of the head that I am no longer shopping with Rich or for Rich.  I have to move past all the familiar, weekly items that are guided naturally into the cart.  Up and down the aisles without purpose.  I’m not shopping for us anymore.  Just me.  I have no one to cook for anymore.  I try to shift gears, glad I have my extremely dark sunglasses on,  dabbing at my eyes now and then, taking ease from the fact that I don’t look like a Diva-Wanna-Be;  clearly I have an eye problem since I have to hold everything 4 inches from my nose to be sure of what I’m selecting.

And thank gawd for the Voice who kept my sunglasses on.  Like everywhere Rich goes on a regular basis, half the employees here know and engage him at every visit.   They’ve seen him at every stage, and when they couldn’t ignore his appearance they would ask, and he’d lightly, smiling tell them “just working on some pancreatic cancer.  It’s going well.”  then he’d make a joke and get them laughing.

Please, please, please don’t let anyone recognize me and ask after him.

Thank you heaven above for the Voices in the Van (now just the Voices), because when I cannot bring myself to suck energy from another person, or my desperate call goes to voicemail, any one or more of the Voices steps up and moves me along.

I made it!!  I got through it.  I ran the gauntlet of our favorite grocery store, where Rich stepped, stepped, leaned onto the cart and rolled down the aisle like a twelve year old; where he would call loudly from the other end of the aisle to me, “Pupshn!  What size tampons am I supposed to get?”;   where just the right song came on over the intercom and he stopped the cart, grabbed me up in his arms and danced me between the  canned goods for a complete verse, kissed my cheek and released me to my giggling and blushing.  Where every baby who caught sight of him locked on, eyes wide and their little mouth opened with a silent “ooohhhhh,”

I made it through the rush of memories I thought were lost in the trips with him struggling in the riding cart, and the stubborn weakness that transformed the shopping cart into a walker.  I made it.  

I leave the comfortably cool air, nearly bearable canned Muzak, and the fear and endure the blast of heat and blinding sunlight.  Like a thousand times before I hit the button to open the hatch on the back of the van.  

Instantly the heat and blinding light are gone.  I’m gone.

Fuck, fuck, and double fuck. 

There in the back of the van that should be empty and waiting for groceries are the clear plastic bags.  The bags from the hospital with his clothes, shoes, hat and toiletries.  The clear plastic bags with his last belongings I removed from hospice.  The Britta water pitcher because I could not bare the thought of him drinking nasty tasting tap water.   The gift he gave me at the birthday dinner he arranged for me in the hospital.  The cheery bag with my birthday gift from the nurses on 5400. 

I hear the Voices hotly whispering and arguing about who dropped the ball here.  Just as I remember to breathe, I find myself  entering a strange place that scares …even me.  It’s one thing to spend energy trying to comfort other Humans;  now I find myself in an unfamiliar dimension where I am trying to comfort the Voices.  Unfortunately there was no one to dump a bucket of ice water on me.  I was instantly, deeply scared like a grown person should not even remember being scared.  

I start loading the van, on top of the plastic bags filled and visible with everything I’m thinking that I am not yet ready to see.   All the time whispering, “it’s okay, it’s okay, it’s okay.”  

The last item from cart to van is the little package of sushi.  Another thread of us.  A little, lovely tray of sushi that would sit on my lap like a reward after every weekly trip to the grocery store..  On the way home, a bite for me, then a bite for Rich, back and forth until it was gone.  Yum.  Magic energy to unload the van and put groceries away.   

Without meaning to I went home a different way.  I’ll see the swans again another day.  Baby steps.

I emptied the van, groceries put away, but the plastic bags sit on the floor behind the love seat.  Not visible from where I sit now, and as long as I don’t look down, I can walk past them without vaporizing. 

I’m going to be okay.  I have every intention of returning to normal.  But you can’t take a three year journey and expect to stop, turn around and return in the wave of a wand.  Today was the Beginning of the Firsts.  They’ll continue to come, one at a time, and I can only hope they are properly spaced.

Yesterday was beautiful.  But it was not closure for me, and luckily, I did not expect it to be.  My closure is not like the closing of the door.  I suspect that  it comes in drops, changing and continuous until suddenly the clouds part and you suddenly stand upright and see the world without rain for the first time in a long time. 

Okay.  I’ve seen “Forrest Gump” way too many times.

Day One in the Beginning of the Firsts.  

Three Years and Three Months. To the Day.

From the day he was diagnosed to the day we had to say good-bye to Richard was three years and three months.

I realized too late I had gotten his birthday wrong--It’s January 22, 1948.  Too late realized in my pathetic efforts to get the obituary from my Mac BookPro to a usable format for the funeral home that I had lost one entire line--“brother” Wade (Carolyn) Bloodsworth.  There were a couple of almost glitches with the music but here is where I have to tell you that Campfield-Hickman-Collier ranks right up there with Hospice.  As much as Hospice cared for Richard, that’s how much the funeral home cared for me.

Once arrangements were made, I had very little to do other than prepare myself.  That involved wearing Rich’s favorite green outfit.  Oddly it wasn’t until the night before that I remembered he had said he wanted me to “Please wear that to the funeral home”.  It felt wrong to put on make-up for the occasion, but I didn’t want to scare people.  Not to mention I’ve never done that with my hands shaking.  My only other pre-flight prep was listening to the five selected songs over and over and over again, until I felt fairly confident that I would not lose my cookies during the service.  

I positioned myself back against the wall.  Rich was laying to my left, just far enough that I would not be able to hear people at the casket.  Then it began and in no time I was in awe by the tsunami of people that came.  Their love for Richard was palpable.  There was not a free moment to go sit and have a quiet word with anyone. Many I recognized and was so happy to hug; most were people I had never met  On more than one occasion their first words to me were “..and you are?”

“The wife.”  I smiled.  Immediately they would offer both hands and I would take their hands or accept their hugs (depending on the span between their hands).   Every person needed to tell me that they knew how wonderful he was and with a few expected exceptions they wanted me to know how much he glowingly talked about me and deeply adored me.

It was not nearly as difficult as I had long feared. I felt like the King’s Queen   Still Rich’s Princess.

He wore his favorite flannel shirt, and at the last minute I found the “Bad Gas Co.” ball cap he wanted to be wearing.  I placed a pack of Beeman’s on his chest (See “The Right Stuff).  He held the pink topped sippy cup he wanted to take to Isabella.

Since diagnosis he head been telling me he wanted his remote controlled fart machine in his casket where it could not be seen, the remote in my hand, with detailed instructions on who to “blast.”  We had many laughs about it, but when the time came, I couldn’t bring myself to do it.   The night before his service I had a dream, and he was adamantly ordering me to “do the fart machine.”    No, Rich did not appear to me in a dream, it was just a memory of one of our more recent conversations when I had admitted to him that I didn’t think I could actually do it.

Yesterday morning, my son Nick called  to arrange my transport and asked “what size batteries do I need for the fart machine?”  I had just finished loading the batteries into it when he called.  I could never deny anything to someone who had asked so little of me.  And Nick was the perfect person to run the remote.

Early in the viewing, Barb (my funeral home angel) asked my permission to video tape the service.  The owner of this funeral home, one of Rich’s many friends, was out of town and could not be there to oversee things or attend and wanted it on video.  I had no idea that such a thing was a common request of families so I had not requested it, but Todd did.  I was thrilled at the idea.  By the time I left the funeral home Barb told me how many people placed an order for a copy of the video and my jaw dropped.  

Viewing ended, Service begins.  Once seated (it felt like there were throngs behind me), there was a Royal Moose Service.  Another totally new experience for me, and it was lovely.  Then the speakers, starting with an unexpected request from one of his trucking buddies to speak on behalf of all the men Rich  had worked with.  “Juan” did a perfect job.

Then Rich’s brother Ed spoke.  Lovely.  My son, Joe.  Lovely.  And Rob Pyett who was prepared to speak, but then stepping up to my last minute request to be the “Master of Ceremony”.    I was overwhelmed and grateful to tears.     The service could not have been more perfect,   It was purely “Richie”, gently spiced with pointed, subtle gifts for me that gave me total validation.

“Final good-byes” were bathed in “Songbird” by Eva Cassidy, and “Wherever You Will Go” by the Calling  (from “Love Actually”)  Close, close, but thanks to Lynn beside me and my sons and daughters-in-Law behind me, I held it together.  

Very soon afterwards I find myself sitting in Joe and Carrie’s house with just my immediate family.  I am split apart--trying to be present, trying to still be at his side.  I want desperately to lie down and sleep.  More desperately I want to infuse my gratitude into everyone present.  I am vaguely aware that I have just stepped through a doorway of no return, and I try not to be scared about that.  

Please, please, please, let the auto-pilot continue to function just a bit longer.

I am keenly feeling the weight this is for everyone around me.  Time and again I  start making “Good-bye” noises but it seems lost in translation.  It has been a long day for these people, a long three weeks.  A long three years.  They have endured and provided far too much and I want to bring it too an end for them, and am failing at every effort.

One of the Voices then reminds me that they need to do this.  Immediate shift of brain cells to their concern and compassion for me.  Now I feel like a bomb that no one knows how to de-activate.  I don’t know how to tell them that all the wiring has been cut and there’s nothing to fear.  Just as quickly the words and activities around me begin to wind down and as arranged by my three sons, Nick is driving me home and he gets me and all my funeral paraphernalia into the house, sits with me for a bit and we have a wonderful talk and then he leaves, almost convinced and fully respecting that I now need and want to be alone.

And then I breathe.

"if it weren't for my horse, I never would have spent that year in college..."

If you’re a Lewis Black fan, you know by the title  exactly where this post is heading.    If not, I can only explain it as a beautiful story/joke Lewis tells to explain that sometimes you hear or read something that is so insane that it will cause a terminal loop in your brain, and if you don’t have someone to help you work it out, you will shortly die of a brain aneurism. 

Enough with the introductions, let’s start the show….

I have spent several hours since yesterday working on the terminal loop the nurse injected in my brain when she responded to my pain of leaving Rich’s  bedside with…. “That’s okay.  Not everyone can handle this.”

I will spare you the details of my efforts (although I did attempt to make a song of it in hopes I could sing it to conclusion, but I couldn’t make a rhyme for “handle this”.)

Lewis is right.  You need another person to discuss it with in order to make it go away.

Today, I have to encounter that same nurse again, and she now scares the shit out of me.  In the hallway, before I get to his room, there she is and she wants to give me report.  Since 93% of communication is nonverbal, I assure you that without the words it was like I was picking my child up from day care and she was telling me all the amazing new things Susie did today.  

I sat with Rich a while.  And yes, he’s “doing” new things.  I stop on my way out to let her know I’m leaving and she smiles brightly and says, “So what do you think?”  I confirmed every “new” thing.  And then, coward that I am, I said, “well, I’ve got to be at calling hours for a friend at six.  In Canton.”   Luckily that’s okay and she’ll call me when it’s time.

Give a  big round of applause for our opening act, folks.  And now the headliner!

Last night, after I posted that last entry, I poured a glass of wine for me and my own best friend, and started flipping through the stack of mail that has been sitting since Monday.  Just in case there was something that needed immediate attention.

There was a card from the hospital.  I read the return address again, but it is a card.  I know this because it’s not an official No. 11 envelope.  It is the size, weight, and feel of a greeting card.  It’s addressed to Rich but I’m in the mood to break some federal laws so I open it.

Yep.  It’s a card.  

On the front of this sky blue card is the name of the hospital, the hospital’s logo, and the hospital’s “tag line”.  I love the tag line.  “the choice you can believe in”    I love this line because the use of the word CHOICE in any way related to medical care just makes all the Voices in the Van giggle.  

I’ve been three years down this road, and I work in a medical office.  If there’s one thing I know, its that the only, the ONLY one who has choice in medical care is the insurance companies.  I don’t know who the hospital’s ad agency is, but I hope they’re getting big bucks.  Because if you can sell that client on that line, then you’re selling something.

I open the card.  Printed on the inside, identically, is the hospital’s name, logo and tag line.  Just in case I missed it the first time.

There’s more.  Someone.  Assumably a primate with an opposable thumb and a basic grasp of the English language has written in cursive, in ink,  the following……

“Rest Well.  Feel  better soon!!”

Take a minute to let that sink in.

It was signed,  “the staff of 5400”.

I read the card again.  Again.  And one more time.  I closed the card.  Stared at it.  Opened it and read it again.  I looked at the envelope again.  It was postmarked Jun 1 2012.    I studied the card.  I read the card again.  Because I for damn-shit-sure do not need another terminal loop seeping into my brain.

I could understand a computer generated faux paus.  But a two-legged person had a hand in this.  immediately I start formulating a defense for this well-intentioned act.  Okay, they didn’t know he was going to hospice.  Still, it was generated by the oncology floor, so I knew they knew he was going to hospice if he didn’t die in ICU first.   I can make no sense of this.  I can feel the terminal loop carving a comfy spot in my grey matter.  Shit.

 I can rattle off six preferable warm, fuzzy sentiments far more appropriate for a patient leaving the oncology floor for any reason headed to god knows where.

“Thank you for allowing us to care for you.”    

“Our thoughts go with you.”

Blah, blah blah.

I pour another glass of wine.  Because there ARE the two of us here--me and my own best friend.  And while I’m thinking of it, the Voices now leave the van when we get home and wander about the house just to keep me company.  Hell.  We could kill the whole damn bottle.

I read the card again.  I examine it thoroughly just shy of dusting it for finger prints.  I am that intent on trying to make sense of this before the terminal loop starts playing like a song you can’t get out of your head.  I’m so desperate I start singing the entire theme song of the Brady Bunch.  I move straight to the opening song of the Big Bang Theory.  

By the time I finish  Barry Manilow’s classic tribute to the Big Mac I collapse on the couch in exhaustion.  I’m fucked.

Today I took the card to work.  Waiting for a lull in the insanity, I casually hand it to my boss with a big smile and say “I want you to see this card I got in the mail,”  Just like I’m telling her the amazing new way Rich is breathing and how his feet are now a more lovely shade of purple.

She opens it exactly as I did.  I watch her face and get to see exactly what I looked like when I opened it.   The stunned silence, the disbelief, the total examination of what cannot possibly be real.  The shock and awe.     YES!!!  Vindication is MINE!!

Then she went absolute ape shit.  

THAT’s what friends are for.  You have to have a friend  who can help you kill the insanity worm  in your brain before it eats more brain cells than you can afford to loose, then burrows  it’s engorged, satiated self in the exact spot that will result in an aneurism.   An aneurism would not be convenient right now.  I’ve still got shit to do.

Thank you, Ladies and Gentlemen!  Don’t forget to tip your waiters!

"you're such a coward I can't believe they let you wear the uniform"

Four or five times a day a I get a text message requesting an update on Rich.  I’m always warmed by how much he is loved.

I always text back “no change” and then try to shine it up with something reassuring.

It’s a lie that does not even resemble the truth.  It’s not even a sugar-coated truth.

He’s been completely unresponsive since Sunday night.  Since then there has been plenty of change.

As of forty minutes ago…

His eyes are two little pebbles sunk back in gouging sockets.  His right lid only closes halfway, allowing you to see that his once shining eyes are now milky and lifeless.  His hands are hot, his face and neck “normal”, and his feet are ice cold.    He’s getting tylenol suppositories because his body has now learned how to run a fever, and they have to bathe and change everything 2-3 times/day because periodically he oozes fluid through his skin.

His feet are beginning to turn purple.  His left hand and forearm are swelling.   His scrotum is less swollen--now only half the size of a soccer ball, but the excoriation has begun despite  the many measures taken. As I watch him breathe I see that only his left lung expands now.  With my ear against the right side of his chest I cannot feel movement with breath, nor hear any air flow.  The only sound he makes is guttural moans as we near his next dose of medications.  Maximum air flow is 8-10 breaths/minute, slowing to 4/min shortly after meds.

He does not respond to my voice or touch.  He does not squeeze my hand.    Not the slightest twitch.

I come straight from work and sit with him, holding his hand, stroking his brow, giving kisses and whatever words of love flow out of my mouth.  I do this as long as I can bear it--a range between 75 and 113 minutes.

I know it’s time to leave when I begin to feel the sight of him is burning a permanent shadow on my brain like the TV station sign off signals back in the sixties.  (Most of you are too young to remember that).  There’s a reason computers have screen savers.  

Staff is always aware of my presence and always magically appear about fifteen minutes after I settle beside him.  They assure all my questions, which is adequate since I know they don’t have answers.  This is how he is.  They even vocalize that no one understands how he’s still alive a week after he stopped receiving the 70% dextrose that barely prevented hypoglycemia; how he’s survived the absence of antibiotics that were barely daunting the lung infection; how his heart refuses to lapse into tachycardia,  A-fib, V-fib or any other Fib given that he no longer receives his very necessary cardiac meds, combined with the strain it’s under.  How is he continuing to produce lovely yellow, clear urine when he began refusing sips of water days ago (not even mouth swabs) no one knows.  His infected lung has been without vacuuming for a week, yet somehow it continues to barely drain.

When I can no longer bare this I know it’s time to go.  I’ve never enjoyed horror movies, and I flat refused to see “The Last Temptation of Christ” because I’m just not into watching someone I love suffer.  Even though they assure me and I believe in my soul he is not suffering.  It’’s time to go, and I suddenly long for vindication, at the very least permission, to leave.  The best I get is, “you have to do what’s right for you.  You don’t need to see this.”

I leave feeling drained and guilty.  Really guilty.  Not because I’ve left him.  He is SO not alone.  Between this saintly staff and the wonderful energy that flows around him,  I know he is not alone.  At times I feel like an intruding voyeur.  I feel guilty that I am not sharing his work, cannot bare to watch him at his work.  

I drove home to the much needed and welcome Voices in the Van.  

They’re permission and words of consolation get on my nerves in one 4/minute breath, and they quickly change tack.  I do not chauffeur stupid voices.

“Yo, bitch….just one week in pre-paradise and you forget the past three years?!  Give it up!  That’s what I’m talkin” about.”

“You only did ten years Catholic, so no matter how many times you slept on a straight backed chair with your bag as a pillow in ICU waiting rooms; on cranky recliners beside his bed;  on a slab of concrete masquerading as a bed; or didn’t sleep at all (too many times than WE care to count)….you ain’t getting your sorry-ass to sainthood.  So what’s your deal here?”

They went on and on, each in their way.  Replaying the last three years, highlighting the moments when Rich slept and I fought, cleaned, prayed, knitted, cooked,  served, and comforted.

Just sounded like massive rationalizations to me.  

“Even if it were possible for you to climb into that bed, which the swelling  precludes, with your crazy -mis-matched socks, he’s not going to feel a thing and you’re going to be pressed up against the side rail and we all know how many times THAT left a mark.”

“More than three times medical professionals have told you it was time to say good-bye, please sign these papers.  Three times you have found him in a hypoglycemic coma, and more than four times you have barely interceded before same.  No less than seven times you snatched him from harm by jumping ugly on doctors, residents, medications, lab results and even Rich himself.  You’re on a first-name basis with local EMS, WAY too many nurses and assistants, AND certain doctors ooze the correct level of respectful fear in your presence.”

“Seriously, Miss Crazy Person, hospice staff does not keep a score card on you for Rich to deliver at the pearly gates.”

“And  those who are watching and judging just need to get a hobby.”

It seemed a longer drive home than usual.     No more comforting than any previous commute.

I still felt guilty, but determined to work on it.  It’s just stupid to come through the last three years as I did and start feeling guilty now.  Rich wouldn’t want that.  I think that if he knew at any point in the past where he’d be now, he would not even want me to see him.  

“Cut yourself some slack, Baby Girl.”

Hey.  Just trying to keep it real.

"..breathing out, breathing in...."

Friday I talked to the Hospice Doctor.  It’s not at all like talking to doctors who are fighting to heal him and keep him alive.  It was a good talk.  No answers, and I didn’t expect any, but she did “suggest” that maybe it was time to give Rich some Quiet and Privacy.  What human being doesn’t need THAT from time to time.  So I went home.

Saturday he turned down the road she said was soon coming.   

Early afternoon a very nice VNS nurse came in and offered to give him a massage--just hands and feet.  How lovely.  I left the two of them alone with soft spa music playing and took a walk.  I returned in what I considered the adequate amount of time for the massage.  She was sitting in a chair at the foot of his bed.   We talked about how lovely the garden view was just outside his french doors.  She told me the strangest thing had happened  Through the entire massage, all she could think of was faeries.  It seemed important for her to explain that she’s “NOT a faerie person.”  Equally important for her to tell me how strong the thoughts and images of faeries were as she massaged his hands and feet.  She seemed almost unsettled by the experience.

I smiled.  And explained that our home, especially our bedroom and garden are full of faeries.  Everyone assumes that it is my collection, but the faeries are all Rich’s.  We both believe in them, Rich collects them.  She told me she had goosebumps.  I smiled.  Was the message for her or for me, or both?  He’s not done touching people.

As the afternoon wore on it was clear he had reached the point in this journey where he had always made me promise I would not allow anyone to see him.  For months he has been adamant that once he reached the point of no longer being able to communicate, no one but me, without exception was allowed to see him.  He made me swear.

Not pleasant or easy but I did it.  You owe me one, Richard.  I’ll find you to collect.

Sunday was possibly the worst day for me in the past three+ years.  The effort it took me to get to a point that I could get myself to his bedside was nearly more than I could bear.  There was a constant flow of tears all morning.  I tried to accomplish something, anything; succeeded at very little.  After the floors were mopped and and some clutter put away, I found I had lost hours wandering from room to room, always starting with a purpose that evaporated once I reached my destination.  Must have wandered miles through this empty house.  Absolutely could not bring myself to walk out into our garden.

Sometime in the afternoon I found myself at his bedside, not clear on how I had gotten there.  He had clearly progressed since the day before.  I held his hand, must have kissed it a hundred times, stopping only when the sobbing overwhelmed me.  There was nothing left to tell him.  We did not waste a single moment of the past three years.  I was just unconsolably, selfishly sad.

I came home and curled up with a book.  A delicious pleasure I have not enjoyed in nearly a year.  It was like he was just away on one of his golf trips--those times when he could be the people person he is and I could be the recluse I am.

Then I went to bed for the first time in two weeks (the couch needed a break).  I slept without listening for my phone.  

When I woke up this morning things seemed different.  I felt clear. I was ME again.  Brand new thoughts settled upon me like butterflies, and I was reminded of what I’ve always believed.  

I remembered why I’m not a “good Christian”.  “Devout Christians” just confuse me.  Everything I’ve witnessed from them on the subject of death and dying seems to run counter to everything they claim to believe in.    To think that when none of US are with him, that Richard is alone….well that just makes my head hurt.  To view this journey as a sadness, saddens me.  People get happier when someone boards a cruise ship than when they start down the path to Bliss.  I have never understood how one can claim Faith and view death as an end.  

I realized I have spent the past few weeks trying to perform the role that I feel constantly is expected of me.  I have focused on Richard, but in these past few weeks I have spent too much time and energy focusing on the grief of others and the comfort I should give them. 

So here it is.  I’m happy.  I’m happy that Richard has walked this path with such amazing grace, dignity and strength.  I’m happy he opened up and embraced this journey the way he did.  I’m happy for all the lives he touched and the joy he felt in that.  I’m happy he struggled through the darkest moments in the Pit of Despair, triumphed,  and not once complained, whined, or questioned.  I’m happy for every single moment I was allowed to share of it.  All of it.  I am happy that his suffering and struggling is over.  

Now he is moving down another  birth canal.   No one can say when or how long before a child leaves it’s mother’s body and takes it’s first breath.  It is a miracle that happens in it’s own time.  Richard is not dying.  He is giving birth to his soul.    

I sit at his bedside this afternoon.  So much of him is gone from me; so much of him never can be.  I feel peaceful.  His body now looks foreign to me.  Swollen in some places, sunken in others; his complexion still rosy.  I hold his lifeless hand.  I talk to him without sadness about our future--his and mine in different places.  His breaths are now four per minute.  

I will miss him.  I will go through the agonizing, joyous  pangs of postpartum.  I will grieve the absence of his touch, his smile, his tenderness, his crazy, funny ways, until the memory of those things weave their way back into my memory.

I don’t feel that he’s leaving me.  He’s just going somewhere else, where only my physical boundaries will keep us apart.   

When you love someone, “There’s No Such Place as Far Away.”

does anyone have a sharp pencil?

It is not yet 09:00 and I am blogging.  There’s your first clue.

At 07:20 Rich is awake and agitated.  Alert and oriented?  He’s 2 for 3.  A bit confused about location.  He wants medication, he wants answers and he wants out of here.  I get him calmed down, and while we’re waiting for the nurse to bring his medication, he looks me square in the eye and clearly asks

“Why are you pushing me to die?”

  …….here in round 334 of this tremendous bout, we see the contender, slowing a bit, but managing to stay off the ropes….not quite as fast with her footwork, and we’re noticing some hesitation on her dodge and weave…….   OOOooooh, ladies and gentlemen, she just took a terrible blow to the jaw….blood and sweat sprays across the ring……looks like her knees are buckling…….will she go down?…….can she survive another 10-count? ………..wait, wait……she’s staggering……she bounces off the ropes…..staggers back to  center ring……..ladies and gentlemen……unbelievable……the crowd would be on their feet but they’ve all gone home……

“I’m sorry, Richie.  I thought you wanted to ‘go’.  I’m not pushing.”

“Yes you are.

“Sorry, Captain.  I misunderstood the orders.”

“I don’t need you pushing me around here,”

One of the Voices says, “Alrighty then!  We’ll head on down the road.  See you at the funeral home!”

While I remain silent.

He tells me, less clearly now, that he’s working on a Plan.  I ask if I can help; he tells me to stop pushing him.  For a split second I think “yeah!  my work his done.  I can go.”

His eyes are getting glassy, words increasingly slurred.  Familiar ground for me.  If there’s anything I know well it’s how to communicate with a falling down drunk and this is close enough.  (Thank you for that skill set, Mom and Dad).  

He tells me he’s working on a plan….take a few days….working on a plan….what is this place?……

He wants water.  He closes his eyes.  He raises his head and looks around the room, lays back and 

closes his eyes.    “…not sure how to do this…..makin’ a plan…….be about a week……..”

As of 18:00 on May 19, 2012 my husband pulled several threads out of our Tapestry.  Since that time he has not told me he loves me, he has not called me Pupshn.  He will not maintain eye contact once he recognizes it is me.  He continues to flow politeness, gratitude and boons upon all who enter his room.   For me there are only requests and directives. He reaches for everyone’s hand but mine.  

STOP RIGHT WHERE YOU ARE.      DON’T YOU DARE PICK UP THE PHONE TO CALL ME.  

Because if one more person tries to comfort me by reminding me that “you know Rich really DOES love you.  You know you can’t take in anything he’s saying now.”   blah….blah….blah…..  I swear to god I will throw up on your shoes.  And if you’re not standing in front of me, I will navigate my way to your closet and I will throw up on ALL our shoes.   

 I’m not stupid.  I know.  Sometimes knowing a thing just don’t make it better.   If that doesn’t make it clear, then I guess  you just have to be there.

There are two.    2.      TWO  people on this planet who are allowed to advise me on what I’m experiencing and how I’m processing this and they both have the decency and common sense to offer that advise in the form of a QUESTION.   They are my ground control    Unless you have received a message from Alanis Morrisette,  Ben Affleck, Matt Damon, Chris Rock AND Alan Rickman, please assume you are not one of the TWO.  I do however greatly appreciate all other kind words, prayers, well-wishes, blessings, hugs, and wisecracks directed at or about me.  Keep ‘em coming.  And it’s okay to tell me I look tired.  You can tell me I look like shit.  I’m the kind of warrior that takes no offense if someone comments on my war wounds.  Please don’t feel obliged to state the obvious.  Not only do I not require your directives to eat, sleep, take care of myself, the volume of such directives has reached critical mass.  I assure you.

I would, however,  appreciate it if you’d let me know if I failed to properly wipe my nose, if I’ve gone a bit too far past bath time; if one of my cowlicks is out of control to the point of distraction; if my fly is open; if there is toilet paper clinging to my shoe or waistband;  or if I’m starting to scare people.

Actually, just about everything that comes from those close to us has been greatly comforting.  My knee-jerk with the shoes a-la-vomit comes from the occasionally friendly intention gone awry and for those I will spare their shoes, but I am at the point where I will retort with “Really?  Ya’ think?!?!”  

Those at greatest risk are the complete strangers who have mysteriously acquired the Right to interject themselves into my marriage and interrogate me on my flight plan.  

Doctors’ signatures for hospice were not yet illegibly dry on the paperwork when there appeared at the doorway of Rich’s room in ICU a hospital chaplain.  At his heels was a junior hospital chaplain.  I assume she was his junior because he talked, she listened, and occasionally he looked over his shoulder at her with a look that I read as “see how nicely I did that?”

The first time he appeared my eldest son had the bad luck of being in the best position to intercept him before he could come in the room to see me.  Joe was polite, explained this was not a good time,  family was not in need of outside spiritual counseling because we already had that covered.  All of this was relayed to me shortly later because I asked, quite certain that I had caught the scent of a religious figure head in the  nearby vicinity.

Thirty minutes later I am standing outside Rich’s door to give him the private visit he had requested with two people.  Lucky me, here comes the chaplain.  I must have been wearing a sign that read “The Wife”.  He zeroed in on me like a starving mosquito.

This guy had to be at least in his sixties.  He introduced himself to me as “the chaplain” --(no names please) and said  “and YOU are?”

“The Wife.”

His mouth starts moving, there are sounds---something about being alerted that the patient is going to Hospice and this is the service they provide.   I thank him very much but we have that service covered, and he responds with  “and the Patient’s name?”

“The Richard.”

He’s talking again, like he’s explaining all the many things I’m ignorant of…  Like what CCO means, and what the word hospice means……   I try to stop him a couple of times with assurances of my deepest gratitude and most desperate wish that he not trouble himself further, and we most certainly have all of this covered.

He talks over me.  Apparently it is absolutely critical that he is convinced that I “know the proper words to use with Richard at this time”, because he refuses to let that question to me go unanswered.

Family and friends are leaning against the walls outside his door. I decide it best I not make eye contact with any of them, because any second now the Death Ray may start shooting from my eyes.  I stop eye contact with The Chaplain because I don’t know what state penal code has to say about murder by ocular death ray.  I stare at his tie, certain hat he believes I am hanging on his every word.  I’m trying hard to maintain calm and prevent harm, but this is reaching the level of the absurd, and another two failed attempts to assure him of the sanctity and privacy of our marriage is dragging me towards anger.

Out of the corner of my eye I can see that my brothers Irish complexion has gone fire engine red, I know he’s coiled, waiting only for my signal.    I almost want to ask the chaplain where he got his training, because that’s some shit that needs to be investigated.  I’m aware of my brother’s readiness, I’m aware of the shock and disbelief that has descended like a fine mist in this hallway.   Unfortunately none of this is enough to block the receptors in my weary little brain that are still able to receive and process the words that are coming out of The Chaplain’s mouth.    My responses are no longer necessary.  He continues to fill the air with the most self-righteous, holier-than-thou, vaguely Biblical, thoroughly putrid, saccharine-coated load of crap that I have been forced to listen to since I was nine years old  and got dragged to a tent revival meeting so a pentecostal preacher could scare the evil out of me and save my wretched soul.

Maybe my grandmother was right.  She always told me the strawberry mark on my forehead was the Sign of the Devil, proof I had evil in me.  That would explain the beacon I am for all persons with higher training in certain religions.

I am frozen.  Except for one teeny, tiny muscle under my left eye that must have twitched.  All the sign my brother needs.  I’m staring at the floor, but in a nano-second before it happens, I know my brother is about to spring forward.  In the next nan-second I perceive the beginning of his propulsion towards the Chaplain and then….

This is one of those times when it is SO helpful to have a son who has ten years of experience as in inner city cop with SWAT training.  Now I’m aware that Joe has been watching this pot simmer, assessing, waiting, on the ready.  Instantly he is blocking his uncle’s trajectory, facing the Chaplain, calmly and politely explaining again everything he explained thirty minutes ago.  

The Chaplain ignores him like I’m the only one in the hallway and continues on with his interrogation of me…

One of the Voices says with a Yiddish accent, “Would someone PLEASE show this poor, dumb, asshole the way out of town?”  Once in a while I wish I wasn’t the only one who could hear the Voices.

A truly good cop is never out of uniform.  I watch Joe gently take the Chaplain by the elbow that will pivot him away from me.  “Sir.  You and I are going to step down the hall here and talk.”  IN uniform I think Joe might have gotten him a little further down the hall with a bit more ease.  But it was far enough that others could close ranks around me.  I could  hear Joe’s gentle yet firm voice like he was on the scene of a potentially volatile domestic.  Tense, precarious, but in the right hands still hope that no one would have to go to jail.  

I feel myself starting to tremble from the flood of relief, anger, awe, and something gushing from my open, gaping wounds…  The next few minutes were a blur, then I was re-focused.

After such an event you need a de-briefing.  It helps.  Trust me.  Two, maybe three times I needed to hear what others present saw and heard.  I needed them to tell me that I had not behaved poorly and they understood my perception of the event.  I needed vindication.

So here’s another TIP you can take from this blog.  I don’t care if you’re admitted for a head cold.  When they ask you on admission about your religious preferences.  “None”  is NOT the best answer.  Tell them something, anything that assures them there will be an official of YOUR religion  in control of your spiritual care and feeding.  The answers “none”, “atheist”, or “agnostic” creates an uncomfortable void that they WILL find a way to fill and correct.  Final warning.   I’m just saying’.

Short time later I am told hospice has a bed and transport is scheduled within the hour.  

Everyone wants to assure me that if the poor, dumb bastard shows up again they will take his learning to the next step.  I rear up on my hind legs and let it be known that if he comes back I will be the one to handle it.   So it is said.   So it shall be done.  I detect a glimmer of fear move across faces like The Wave in a stadium so I explain.

I get a glimpse of that man entering my space and I will totally ignore him as I call the nurse and ask her to please call Security.  Why?  Because I guaran-fucking-tee you that nothing any of you say will kick him as hard in the ass as a call to hospital security with a complaint  from family that they are being harassed by the hospital Chaplain.   I didn’t work here three-plus years without learning a few things.   This ain’t my first rodeo.

In no time this circus is packing up and ready to move on to our next destination.  I’m almost disappointed I won’t get the chance to kick this guy in the nut sack..  I shall content myself in the knowledge that he will pray for us. Pray that Jesus will unlock my cold heart and damaged soul that I might see the Light and be guided to Salvation.  Praise the Lord..

No, really..  There’s more,

Two days into the Pre-Paradise of hospice and I’m just getting comfortable when….  I step out of Rich’s room to give him a private visit with the person(s) at his bedside.  Ten steps round the corner to one of many lovely family rooms.  There is my brother and Alicia.  Sanctuary!

Think again.  There is a man sitting at the table in a a dress shirt and tie with an important looking notebook open in front of him and he’s taking notes, and clearly Christopher and Alicia are fueling his rapid scribbles.  

Fuck.  Double Fuck.

I will try to place this in a nut shell smaller than a cocoanut.

This is the hospice Social Worker.  I’m thinking a serious cringe is in order but Chris and Alicia seem calm and this guy, introduces himself as Dennis.  Dennis the Menace.    Because his name IS Dennis but he’s here to perform a task that the Government requires be done in order for the hospice facility to maintain their license.  “So I know I’m a Menace, but just a couple of forms for me to complete and then I won’t bother you again.” 

I love forms,  Just hand it to me please and I promise I will fill it out and turn it in before the end of the grading period so someone can determine if I pass or fail.

It doesn’t work that way.  He has to do official Social Worker stuff.  Thank you, Jesus, Chris and Alicia have already provided the fodder for most of the blanks so all that left are the blanks that can only be completed by information from The Significant Other/Family Member in Charge.  Fuck.  That’s me.

I’m not going to enjoy this but as a nurse I understand government/insurance demands, and he’s actually being quite pleasant about it.  I could almost like this guy.  The Facts about Me are pretty painless and easily recited.  This ain’t my first rodeo.  Just as I get comfortable with the game I know so well, he deftly guides me into his assessment of Me, Rich and this current Situation.

Hang on, maybe this guy can sling the same shit with a different spin.

Three questions later and I am no longer mildly amused.  Either Dennis’ questions stem from  zero background information, OR (and I’m going with option TWO)  If you have the soldier recount the battle enough times he will be magically cured of his PTSD.    Dennis.  you disappoint me.  Game On.

One of the Voices is whispering in my ear, “float,  just float.  Try not to scare the man.”

I float.  I try not to prepare split second responses meant to sound “normal”, but only sound canned. sound normal as you satisfy his government form and make him go away.  I suspect I am facing a worthy opponent.  I relax enough so that he can see I am relaxed.  I allow what I can only hope is the appropriate text book amount of emotion.  I am sucking energy from Christopher and Alicia like a junkie.  The anticipated questions of my relationship with Richard begin.  Dude, I would be more comfortable recounting for you the details of my distant memory of our wild hot monkey sex, than give you one tiny drop of the current intimacies of our last three years together.   I offer a meek smile, wondering if his skill set is adequate to read in my eyes how desperately I want him to shut the fuck up and go away.

But he’s so nice.  He’s so calm and easy and unobtrusive.  He’s Polite.  I love polite.   Feel like cutting you some slack, Dennis.

He wants me to tell him about Richard.    Oh.  You’re good, Dennis.  “he’s magical,” I say with reverence.  Yes, he’s heard that from everyone.  He knows about my birthday party.  He’s got specific information that can only come from certain sources and I know those sources.  My move.

“Well, there you go.  You know everything there is to know about  me.  And Rich. And our “Situation”.  Just sorry you didn’t get to know him for yourself.”        Because then I might not be dancing backwards in high heels.

We both dodge and weave.  Quite a lovely dance.  I am crystal clear  that he is Fred Astaire, and I’m just Ginger Rogers in high heels and dancing backwards.

Every question is couched in apologies and explanations and I’m feeling this guy is not a bad egg.  

Next item the government requires.  He has to present to me that there are services available to help me through “This”.   I feel the urge to channel Lewis Black--a one hour stand-up on “This”. 

There are   Counseling Groups.  Only I can hear my brother stifle his laughter, knowing that my knee-jerk response is “I wouldn’t join any group that would have Me as a member.”  I explain I am not a group person.  At this point even I can tell I have driven too hard a point on assuring one and all and the heavens above that I have a phenomenal support system (got the lingo going) and really, really, truly, I’m okay.  Got my peeps.  I’m close to assuring him that I am crying the correct amount of tears and expressing the healthy level of anger and fear.  And I swear to you on all I hold dear and sacred that my calm comes from the socially acceptable reliance and faith in the One True “God” most acceptable in this small sector of a Judeao-Christian society dominating this hemisphere on this planet.  Are we Good???   Can I go now?

Then he asks me if I plan to take Richard home.   Shit .I was SO not prepared for the whiplash resulting from THAT question.  Or you fucking stupid?  Deaf? Clueless?  Still working your government form check boxes? Or you still don’t get where I’m coming from?  Are.  You.   Kidding me….?

I might have laughed out loud.   “No.  We’re here for the duration.  Next stop funeral home.”

Shit.  Fuck.  Damn.  Wrong answer.  

He’s explaining and apologizing for the question but I’m listening to the Voices.  Breathe, float, breathe, float.  I have now disconnected and the conversation has drifted into what I pray is a satisfying end for him and his government form.    Nearing the Finish Line, I’m so relieved that I begin to gush gratitude and praise on all things hospice--nurses, doctors,  the staff, the volunteers, the gardens, and just when I reach the point of praising the light fixtures in his room one of the Voices channels Pyett and pulls me back by the scruff of my neck.

I grew up believing in the Nature of Life.  The mystical, basic, simple acts of Birth and Death.  I grew up with an understanding and reverence for the basic right to Privacy.  Bah-zinga!!

I’m at an age far enough removed from Birth that I can’t help you there.  An age that brings me to center stage with Death and I’m here to tell you that it is no longer personal nor private.  It is a play in which you are neither the author, nor the director.  You are merely an actor on the stage, and only… ONLY if you’re lucky will someone hand you a script so that you know your lines and the basic plot line.  Improv is a very exhausting way to spend each waking moment, no matter how good you are at it.  And I’m not that good at it.  

You might want to NOT be the next person to ask me if I need anything.  Because what I need and may request is a sharp pencil.  So that I could thrust it into my eye.  I’m thinking a sharp pencil in my eye is about the ONLY adequate, welcome distraction from this high-heeled, backwards, Ginger Rogers flowing, glowing dance through the fucking shit-storm bureaucracy of the natural act of dying.