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.