A Lonely Tribute

Charles B. Pirrone

27 Oct 1947 - 2 April 2017

My father died.

It's been 11 weeks and 4 days.  I know.  I'm still counting.  I don't think that's a good sign.  At least my shrink says it isn't.

I remember sitting by my dad's bedside in the ICU, hearing the beep of the EKG, absorbing every whoosh of the ventilator hoping he would take a breath on his own.  But he couldn't.  He was brain dead.  I couldn't look at his vacant face so I kept my eyes trained on the monitors.  I studied his BP, pulse, oxygen levels.  I studied the little jagged line that showed his heart beating.  Alive, but no longer living.  A nurse came in to check on him.  She asked if there was anything she could do for me.  I shook my head.  As I squeezed his flaccid hand in mine I knew there was nothing more anyone could do for either one of us.  Before she left I looked up at her and asked, "What do I do now?"  She patted my shoulder and said "Whatever you would normally do."

So I get up every day, I go to work. I review financial statements.  I analyze data.  I prepare reports.  Then I go home.  I feed the cat and make dinner for myself.  I watch mindless TV.  Every now and then I see friends or go to dinner with my sister.  I keep busy.

But then night falls.  I lie in what is quite possibly the most comfortable bed in the world, but I do not sleep.  Questions spin through my head.  Was my dad proud of me?  I'm sure he was in the way that dads are always proud of their kids, but did I earn it?  Did I deserve his adoration?  I wasn't the best daughter.  I got frustrated with him every time he would lose his wallet or his car keys or forget something important.  I was angry because I felt like I was raising a child.  In many ways I was.  I knew he was dying, but I didn't take the time to realize that that meant he was dying.  That each day was one less day I had with him.  I thought we had a couple of years.  I was wrong.

Now I lie in my super comfortable bed every night and I think about the time dad chaperoned my class trip to Dawes Arboretum.  I think about the stories he told me about WWI so that I could pass a history test.  I wonder if I would've ever passed Chemistry without his help?  I remember how excited he was when the school decided to place me in the gifted program.  He always believed in me.  So much so that he bought me my first Calculus book when I was 8.  I remember playing chess.  I remember bike rides and car trips.  I also remember him embarrassing me in front of my first crush.  I thought I'd never forgive him for that one.

That's one of the great ironies in life.  People let you down.  They do things you swear you'll never forgive them for.  But at the end of the day, when all is said and done, it's YOU who you can't forgive, not the other person.  I remember every time I tried to act like I didn't know him in front of my friends.  I remember every time I said 'I hate you' out of anger.  I remember every hurt and every scar I put on his heart.  I know he cried.  Not in front of me, but alone.  And I hate myself.  I lie in that super comfortable bed with an ache in my chest that is so very real.  It's amazing how physical grief can be.  It's as though your heart is literally ripping.

I lie alone and think about what his final days were like?  Did he know he was dying?  The day before he fell into the coma his dementia was the worst I'd ever seen it.  He wasn't cognizant.  But was he able to tell that he didn't have much time left?  Was he scared?  Was he in pain?  These thoughts circle my brain and make my heart ache even more.  My entire life I've been fixing things. I'm a doer. I'm a planner. But death isn't something you can plan and it's certainly not something you can fix.

Night is definitely the hardest.  That's when my entire soul aches from within.  It's so quiet, but the silence is deafening.  It's almost accusatory.  I couldn't fix him.

My religion tells me about the wonderful place that my dad went to where there is no multi-organ system failure and his heart beats in joy.  He's been reunited with his own father which is something he'd been waiting on for almost 17 years.  I'm glad that he's found eternity, but I'm human and selfish by nature.  I pray over and over asking God why he had to take my father away so quickly.  But the answer is always the same.  He was never mine to keep.  My father was a child of God; on loan to this world.  He completed his journey and returned to be with the one true Father.  But, as selfish as it sounds, it only makes my heart ache more.

I'll see my father again in due course.  I just have to be patient.  Dad always said one of his regrets was that he never taught my sister and I patience.  I told him it's hard to teach something you don't know.  Ouch.  That was mean.  I was a terrible daughter.  That's the kind of thing that makes my heart ache more.  I guess patience is something I'll have to figure out on my own.

So...for now, and probably for a while to come, I'm going to allow myself to lie in my super comfy bed, the sound of silence filling my ears, and I'll allow myself to cry.  To miss.  To regret.  And to hope.

And when morning comes, I'll start all over again.

With a Little Help From My Friends

So, my dad is dying.  I think we've covered that.  What I'd instead like to focus on this time is the moments in between the doctor's visits and medication and blood tests.

In the Bible, Ecclesiastes Chapter 3 reminds us that our lives our cyclical; a time to be born a time to die; a time to reap and a time to sow, etc.  For those unfamiliar with the scripture, listen to the Byrds 1965 hit 'Turn! Turn! Turn!'  It's the same general idea and has a catchy tune.

The basic idea here is that we are unable to appreciate joy without suffering.  We must endure suffering, but if we wallow we deprive ourselves of the opportunity to appreciate the the good times.  That's why we need personal relationships.  Shared moments build our reserves to be able to survive the tragedies.

I have several happy memories with my father.  Like the time that my mom decided dad should take my sister and I fishing (why, mom? why?).  She gave us marshmallows for bait.  My mom SWORE that while living in Florida she once caught an alligator using marshmallows for bait.  There are two problems with this scenario.  First, alligators are carnivores.  They don't have an affinity for processed sugar.  Second, when's the last time you saw alligators stocking up on Peeps at Easter?  But Heather and I were too stupid to know better and my dad didn't want to pick a fight with his darling bride, so off we went to a nearby lake with 2 Snoopy fishing rods and a bag of marshmallows in tow.  Let's just say it was not the most productive excursion.  We didn't catch a singe fish.  We did, however, learn that ducks DO know how to laugh and that they can be cruel.  You haven't lived until you've had a duck laugh at you in a malicious way.  We might not have become successful anglers, but we came away with a story that keeps us warm on tenuous nights.

But sometimes you need to distance yourself from the patient.  I can't stress the need to develop a life of your own outside the patient.

I remember a night back in 1997.  My BFF and I had been invited to a party out on the sticks and figured 'Why not?'  You can do those types of things when you're 17.  Long story short, we got lost.  I'm a terrible driver and my 'navigator' has dyslexia so our journey had about the same odds of success as the Titanic .  Before I knew it we were driving on a desolate country road in the middle of farmland.  A dense fog had blanketed the road and surrounding fields.  All I could think at that moment was that this is the road where people die on in horror movies.

Suddenly we hit a bump.  Then another.  It might have been a body.  Then again it might have been a charming woodland creature the Disney had released to Nowheresville Ohio.  Now, I'm typically a very responsible person, but I was NOT about to get out of my car to see what we hit on the Murder Interstate.  That's how the monster's get you.  So we drove on.  We ended up in Lithopolis, Ohio.  Do you know where Lithoplis is?  It's okay if I you don't.  I don't and I'VE BEEN THERE.  There's only one place open in Lithopolis after 9 pm.  It's a pizza and beer joint appropriately named "Pizza & Beer".  The story DOES have a happy ending, though.  We somehow made it home safely and now, whenever one of us finds ourselves scared and lost in the middle of nowhere, we refer to it as 'Bump'.  We made it though the first Bump so I know we'll make it though the next,

You millennials have an extraordinary gift that past generations didn't have.  You have social media.  You get to reconnect with the people you knew years ago and realize they aren't the assholes that you once believed.  You have online dating to expose you to people you'd never meet otherwise.  You have sites like Meet Up to connect with like-minded grownups that can become your new best friends.  So...No more excuses not to leave the house.  Firefly might be having a marathon that night, but lets honest, you've already memorized all the episodes anyway.  And if you leave your house there will be nice people and alcohol to sweeten the deal.

I'm getting up there in years, but I'm not too decrepit to make use of social media.  I've reconnected with a ton of people who I thought (hoped) I would never encounter again after graduation.  Much to my delight, it's been fantastic.  These people support me when the reality of my dad's health is too much for me to accept.  They've also been there when I needed alcohol and karaoke.

After my last post I was overwhelmed (and eternally grateful) with condolences, prayers, support, love and compassion.  Caring for a sick loved one is very isolating,  As much as we want to hide in our homes and lie in a rut of 'what if's' we can't survive that way.

After mom mom's funeral I confessed to our pastor that, while I appreciated those that had come to say goodbye, tomorrow all those people will take their kids to school and go to work and go on with their lives.  She agreed, but she gave me the best advice I could have received.  That's what they're supposed to do.  They are supposed to go back to their lives just like I was supposed to go back to my life.  I could mourn my mother, but I could also cerebrate the life that she gave me.  It took time, but I have chosen the latter.

Now I face a similar battle.  I can mourn my father.  But I can also chose to meet with friends.  I can go out go out drinking and dancing.  I can celebrate birthdays and new jobs.  I can buy pretty clothes just because they bring me joy.  I just know that I can't do it without my friends.

So, my final advice, reach out to your friends.  Talk to them about how you're feeling.  Don't hide it.  It's a part of you.  Let them be there for support but, when they insist on taking you out, GO.  Have fun.  Flirt.  Make new memories.  But,whatever you do, avoid Bump.  That's where the monsters live.

The Tell Tale Heart

My dad is dying.

I know, I know.  That's a pretty blunt statement.  But that's kind of how you have to approach it sometimes.  My dad is dying.  My dad IS dying.  And there is nothing I can do to change it.

When my mom was dying I did everything I could to, if not stop, then at the very least, postpone the inevitable.  I started studying cardiology, pulmonology, nephrology, hematology, infectious disease, orthopedics.  I learned how to read a CBC report, a blood gas, a urinalysis, a 12-lead.  I researched medications, surgeries, alternative therapies.  I became a certified cardiac care giver.  I made sure to be there when her doctors did rounds.  I negotiated with the insurance company for more coverage.  I insisted on being a team member in her treatment plan.  I flipped God the middle finger and said 'I'll take it from here.'

But God had other plans.  He always does.

Nine years later I found myself in a private ER room exactly like the dozens of other ER rooms I had been in with my mother when the attending handed me a Do Not Resuscitate order.  I don't remember the doctor's name.  She was 40-ish with straight blond hair and dark blue eyes like mine.  I don't know why I remember that part.  Her eyes looked so much like mine.  She was kind, but perfunctory.  She explained each line as I initialed each one.  She didn't need to.  I had taught myself everything I needed to know by then.  But I was too tired to tell her 'I've got this.'  Truth be told, I didn't.  Yes, I knew everything that was wrong with my mother's body.  I knew that her mental state was deteriorating.  I knew her heart was failing, and her lungs, and that her kidneys were going to go soon.  I knew every physical mark and ailment.  But what I didn't know, what no one can tell you, is how to let someone die.  There is no textbook on deciding for someone else that their time is up.  I'm a firm believer in physician assisted suicide and dying with dignity, but this was not my life.  This was not my death.  This was not my call...until it was.  It was up to me to tell these strangers that my mother had had enough.  

Several months later my mother died. It was a Sunday.  My sister, Heather, had visited that afternoon.  Minutes after Heather left, my mother left, too.  That was almost 6 years ago.  Or maybe it was yesterday.  Some days my heart can't tell.

Now I'm caring for my father.  He has dementia, so it's very much like caring for a young child.  I zip his coat for him.  I wipe his face when has something on it.  I remind him to get a haircut.  Then I go home and I manage his finances and pay his bills.  I pay his cable bill because the only thing he loves more than my sister and I is Bill Maher and without HBO there's no Bill Maher.  I pay Medicare so that he has medical help to make the dying part a little more comfortable.  I pay the life insurance.  I manage the schedule and make sure he's at all his appointments with his litany of doctors.  Luckily my sister helps immensely with that.

He also has Stage 4 kidney failure.  The good news is, because of his dementia, he doesn't know he's dying.  The bad news is, because of his dementia, he doesn't know he's dying.  I could tell him.  Break it down as simply as possible to help him understand.  But there are only 2 outcomes to that act: 1. He forgets so I have to have the same painful conversation with him again.  And again.  And again. 2. He remembers and spends what time is left sad, desolate, depressed.  Can anyone say that either of those is a kindness?

I still talk with the doctors and discuss treatment plans.  But I no longer feel the need to BE his doctor.  I've signed a living will for him, but we did that together.  I explained each line as he initialed each one.  That was 5 years ago when he was more able to participate.  Now all that's left is to wait.

Once upon a time my father was the most brilliant man I had ever known.  He was very well educated and a subject matter expert in pretty much everything.  He was a chess master.  The town I grew up in had a chess tournament every year as part of the 4th of July celebration.   He came in second every darn year for a decade so he quit.  What he doesn't give himself credit for is that he came in second every darn year to a Russian expartriot.  Chess is kind of their thing.  Well, chess, vodka, and espionage, but dad was only good at the chess part.  Dad still plays, but only against himself or a computer game.

I do what I can when I can to engage him. We talk about the possibility of colonization on Mars.  We make fun of Donald Trump and discuss what disasters the next 4 years might bring.  We talk about the American Revolution and who our favorite American Presidents have been.  We discuss the Industrial Revolution and how it changed the global landscape then much like the technology revolution has now.  We talk about music and writers and even football until he drifts off.  See, when your kidneys aren't functioning you tend to fall asleep frequently.

I don't know how long my father has left.  I thought I had maybe a couple of years, but recently he's taken a turn for the worse.  The nurse said there's a chance he could rebound but that it isn't terribly likely.  I think she just wanted to give us some sense of hope.

All I have now is time.  Most days I hope for more time, but, more often than I'd like to admit, I wish this were over.  Grieving changes you.  It creates dark corners in your heart that hadn't been there before.  You can't understand what it is to watch someone die until you've done it yourself.  And even then, you're on the outside looking in on someone else's struggle.

My father is dying and I just want it to be over but I can't say that out loud because it makes me a terrible person.  Oh sure, everyone says it's okay to feel that way and it's normal, but that's not what I'm talking about.  I'm talking about how I feel about myself as a person and my soul.  Every time I look at him and think 'Can't you just die already?', I hate myself a little bit more.  I get a little more jaded.  I get a little more frustrated and helpless.  And each of those 'little bits' add up until you don't recognize yourself anymore.

So you avoid those thoughts.  But that bile has to go somewhere, and if you direct it toward the person that's dying, then you really ARE a terrible person.  So you take it out on everyone else.  You get pissed at your sister for bailing on something insignificant.  You belittle everyone else's problems because they can't POSSIBLY be as bad as yours.  You attack your pretty friends because they're so pretty that life must be easy for them.  Everyone else gets to go about their easy lives while you feel like you're trudging through sand.  You get angry that things are so easy for everyone else while you're slowly drowning with no end in sight.

Of course none of that is true.  No one has an easy life.  But those dark corners make it seem that way.  There is no cure or instant recourse here.  There's no healing.  The only thing I've come up with is that loves trumps everything.  Love trumps death.  It trumps hate.  It trumps desperation.  Love trumps the dark corners building in our hearts.  All I can do is to try to be generous.  In all things, be generous.  Be selfless.  Reach out rather than pull in.  Forgive others freely, but first forgive yourself.  Be angry.  But don't allow anger to consume you.  My father is dying.  I know that.  And there will be times when I takes things out on others who don't deserve it.  So I have to learn to apologize frequently and mean it.  There are so many tools out there to help me through this but I have to be willing to seek them out.  I need to hold on to those around me.  Maybe that way I'll be able to let go.