Friday, November 4, 2016


Ed's in the hospital and I've had to leave the last two nights because he's kicked me out.  Last night, he thought I had a knife and knew I was going to hurt him.  He said "you know I love you but I don't trust you."  After sitting with him for 10 hours, he thought I was going to kill him and I had to leave.

Tonight, he told me I was not a god-fearing woman, I should never touch him again and I needed to leave.  An hour earlier, I'd been massaging his legs, relaxing with him.  I have no idea why he turned to spewing biblical phrases, the ten commandments, he wanted to be baptized in the river and wanted security to escort me out.

My heart is torn, it's broken.  I know I know I KNOW it's not Ed, it's something else.  Ed's been hallucinating non-stop.  It's the craziest thing.  Most are paranoid and fear based.  He's constantly talking about being attacked, about atrocities being committed against children, that he's been set up, he's been falsely accused of crimes.  He sees people inside the dresser.  He saw a child spraying graffiti on his wall.  We spent an hour with a receiving line of his past co-workers; he introduced me and proceeded to have conversations with each person.

This morning, he spent hours directing a movie.  In some ways, it's amazing to watch him coordinate this thing in his head that he's actually seeing in front of him.  He had camera people, script writers, actors in front of him.  Three nurses walked in the room and suddenly he cast them as extras.  I'm not quite sure what the movie was about -- something to do with flying a plane.  Earlier in the morning, he was flying a plane with the nurse.

The doctors can't decide what this is.  At first we thought dementia.  There's a certain kind of dementia (frontal temporal dementia or FTD) affiliated with ALS.  However, dementia isn't hallucinations.  Ed's still as sharp as a tack.  He knows who people are.  He doesn't know where he is but he does... for example, he saw men in gas masks with weapons outside and said "you know we're in a military facility.  There's something going down."

So what causes hallucinations?  It could be medication related.  But he hasn't been on many meds for at least a week due to other reasons so that's questionable.  But it's still an option.  Last week he got a catheter and it became really read and icky within a few days.  Now he has a urinary tract infection, which can cause hallucinations under the right circumstances.  Maybe that's it.  They eliminated organ failure with a blood test.

So now it's a waiting game.  They're monitoring his meds and giving him antibiotics.  All I can do is wait.

I'm here, alone.  It's hard.  I wonder how he is.  That is my overriding worry and hurt.  Yes, for sure I feel awful he said these things to me but I know it's not him.  My worry is for him.  How tired he must be.  His brain is always, always working.  Even as I was massaging his legs earlier, I could see his eyes darting around, his mouth moving.  His body was still but his brain was on overdrive.  I don't think he's sleeping.

My wish is for him to be peaceful.  Relaxed.  His body has failed him and now, his brain.  My smart, loving, kind husband is in turmoil.  He doesn't deserve this.

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