Friday, January 13, 2012

An Update . . .

I'm not sure where to begin, so I'll just dive right into the middle.  Or maybe begin at the end.

Dad's condition is not improving.  He went through a brief stint last week and weekend where he was having longer bouts of wakefulness.  He was able to speak well and the "stinker" in him came back.

But . . .

His belly function has remained the same.  And by that, I mean.  It's not.  Not functioning, I mean.  At all.  He has a paralytic ileus.   It's severe.  It's permanent.  With it, he can't eat.  Nothing can go in if nothing can come out.    He's got a few over-riding and additional medical conditions, but that's the life ending, terminal diagnosis.  For the last two days, I've been having end of life conversations with his doctors.  I've been making logistical arrangements to get him into hospice care NEAR me.   I've been talking with discharge planners and care teams about what parameters he has to meet and what functions he must perform.  I've been talking about where his placement could be.  I've been figuring out if transportation is covered.

I've been busy.

Today, he had a PEG tube placed.  For decompression, not feeding.  Tomorrow, he will be transported to inpatient hospice care in my town.

It's a lot.  But I'm okay.  I haven't lived the last 12 years with blinders on.  I knew this day was coming.  I knew the decisions would be hard and that they would be mine.  I'm okay, really, I am.

EXCEPT . . . . for these three little stumbling blocks:

a.  Other people's grief.  Oh MY God.  Today during my visit, three of his best friends from the nursing home came in.  One is a man named Max.  On my visits to the nursing home, I had coffee and apple pie with Max.  He's a touch forgetful, but a beautiful soul.  He's my dad's best friend.  Together, they figured out a way to subscribe to the Chieftain and the News, share them both and save money.  They ate together and have been besties for the last ten years.  Max sat at my dad's bedside today and said, openly, warmly, "Get better soon, Roy, I miss you so much.  I just miss you so much."  And I lost it.  Seeing his forgetful self say that over and over while his blue and gold veteran cap tipped in grief was beyond what I could control.  My heart is aching for Max.  And for Richard and Floyd, who also visited.  The four of them are the boys' basketball team "Fans Of The Year."  They never miss a home game.  Because of walkers and canes, they get to sit near the bench.   I hurt for them.  More than for me.

b.  This little window of time where the current meds in his system will be working, but he'll begin to miss doses of medications due . . . . that window of possible lucidity where Pop might not understand where he is or where is going.  That sliver of time has me concerned.   He knows me, so I'll be there.  Of course, he also asked me for cherries and said a veterinarian came to visit.  Still, the point is . .  there's a possibility that he will be disoriented and afraid.  I don't want him to be disoriented, afraid or in pain.  That's all.

c.  Planning.  I'm a super good planner, but having never done THIS planning before, I'm struck at it's uniqueness.  I'm making decisions and trying to give him the best last days of his life.  I'm planning for the short number of tomorrows that he has.  I'm also planning for the definite and distinct phase where he is actively dying. What meds he will get, who will be there, where he will be, how long that will last.   That's a phase that's impossible to plan for, but impossible to avoid.  And I'm simultaneously planning for his care after death.   I'm not certain there's another part of life where someone does this for you . . . . where they make decisions for three distinctly different parts of life, all at the same time.  Homestead says, "Yes, there is.  It's when you are enormously, uncomfortably pregnant, planning for labor and thinking, 'crap, I'm gonna have a newborn."  She's right, of course.  But, I was never enormously pregnant, so there's a strong possibility I missed that part.  

And, because there are living people around me right now, I've just been invited to a tea party in the living room.  I must put on a hat, don a boa and go, go, go.  


freisia said...
This comment has been removed by the author.
freisia said...

I enjoyed reading your very candidly written blog, you have a natural style of writing making it an easy read. I also love your soft heart for your dads friends, very touching. Take care of yourself.

Elle said...

Thank you, Freisia. Please come again.