Chapter 12: Stepping down

I awake at 7AM and realize John hasn't called.

Oh shit.  I took his phone and the charger home with me.  I get up and frantically call the switchboard at NYU and am put through to the room where the phone rings and rings and rings.  I hang up.

I go about setting up to work from home in the morning.  I am uneasy and I feel like something is wrong.  I call the switchboard again and ring up to the room where the nurse answers and says "Oh yes, he's been looking for you - are you planning to visit today?"  I reply that I am planning to leave around noon and she says "Well he's a little agitated.  I can't tell you what to do, but sooner might be better since he's in a new place."

Of course.  Epic wife fail number 2. I'm on a roll.

I call Jeanie and relay the info.  She and I make a plan and she picks me up at 10 instead of 12.  I am trying not to panic and be crazy, but not knowing what to expect makes me a little crazy.

The drive in is pretty uneventful.  Good thing - these drives turn out to be the only down time I get. Every day and I mean every day, I am thankful to God and the universe for bringing people like Jeanie and Roberta and Irene.  I wouldn't have made it this far without them.

Jeanie drives us in every day. She stays with me there for 8-10 hours. She is my other set of eyes and ears. The few times she was unable to ( dear lord she HAS A FAMILY OF HER OWN!!! - what.), Roberta came in with me.  It's just a blessing to not go in there by myself.  I can't absorb all that gets said by the nurses, nurse practitioners, aids, doctors, surgeons, residents.  It's mind blowing.

We get in there and realize that he has the most exquisite view of the East River EVER.  Right next to the 34th street helipad.

He is so happy I am there.  He can't remember my name.  But he knows I am his wife.  It's a little unsettling in the beginning as he continues to call me by his sister's name.  He can't remember certain words. The remote for example.  That was now referred to as his "tag". It started to become a kind of code that needed breaking.  Not being really good at that sort of thing, I was guessing at most of it.

The one smart thing I did, however, was respond to being called by his sister's name with "She's not here now honey.  Do you want me to call her?".  He would look at me and insist and I would continue to respond the same way.  It didn't take long for him to recall my name.  I would ask him regularly.  "Whats my name?" and he would start to answer with his sister's and then stop, think and say mine.

I was panicked that this was cancer related.  I was assured that indeed this was electrolyte related.  As the balance improved over time, so did the recall and the memory.

This unit was fantastic.  Four beds.  1 nurse at all times. The cream of the crop.  They were like stepford nurses with personalities. He was never late on meds. Ever.  I didn't have to start asking 45 minutes ahead to get them in him.  I didn't have to constantly chase someone down due to an occluded IV line.  My job was to sit there and be the reassuring presence and for Jeanie and I to speak with the powers that be.

That day I left him with his phone and a charger so he could call as he didn't have a phone in that room.  A nice flat panel TV to use his "tag" with - but no phone. The menu every day was amazing - you could order everything on it - and they would bring it.  If it wasn't on there - you could write it in and they would do their best.  Food wasn't bad either  - for a hospital.

His room mates were in interesting and eclectic group.  We had the woman across from us, Clarissa, who would whine in a feeble voice, "Ow you're hurting me" every time they administered a specific IV drug.  The Orthodox elderly gentleman next to us would do battle with the nurses over whether the day was Thursday or Shabbos. And if it was Shabbos - our nurse needed to go home and cook for her husband.  As a matter of fact - he wanted a male nurse because women belonged in the home.   That went on for days.

That first night as we were getting ready to leave, John yells at me that he needed the tag on the wall to be where it was yesterday.

It's 10PM.  Tag is remote.  I got that part.

Remote on the wall?  to be where it was yesterday?  Two problems.

1, There's no remote on the wall or anything that could be construed as a remote and 2. we weren't here yesterday.

Completely at a loss, I maneuver his bed to a more comfortable position and eventually he calms down and goes to sleep.

We leave and were about half way home when it hit me....

The tag on the wall are the bed controls on the inner "wall" of the bed panel.

He wanted the bed set to a level that he had been at earlier in the day.

Thankfully I did that anyway but I was SO excited that I was able to figure that out.

I need him to get better - I'm really missing the man I married.