Day 123

Tuesday Septembeer 24, 2013
Physical:
I still can't tell any difference in his brathing.  At times he sounds like he's struggling other times he seems to breathe as normally as anyone else.  The cough hasn't gotten noticeably worse that I can tell.
Mentally, he simply has no clue where he is any more.  Ever.  And he does know he's been told he's "home" - he just doesn't accept that.
But what scares me the most (and I'm sure I'm repeating myself - that's just an indication of how much the problem disturbs me) - is his not being able to realize what he can or can't do.  Even when he has to ask me to help him sit up on the edge of the bed - he still doesn't realize that he can't just stand up and walk to where he wants to be.  
The new sleeping pills seemed to work the first 2 nights - and then not.  I don't know if it's how they work or what, but DH had a totally weird schedule.  So last night (Tuesday) I did not give him one.  The thing is, he was ready to get up at 8:30 in the morning; and then about 1:30 had to use the commode.  (missed - huge mess for me to clean up).  Then he laid down - and went very sound asleep.  I tried multipole times from late afternoon into the evening to wake him.  I had lights on, TV on, and the head of the bed raised - and the best I could get was a slurred mumble about "tired".  But.  About 11:00 - he woke up.  And thought it made perfect sense for me to get him up to use the commode, and then wantd his supper.  And then wanted me to sit up with him since he was wide awake.  It was after 1:00 AM before he got drowsy enough that I could leave.  He did sleep, though fitfully.  How do I know?  Because I could not get to sleep at all.
People:
No one came here.  Not even my *friend* who keeps promising to come, and yet on 2 perfectly gorgeous days in a row she neither showed up nor bothered to contact me in any way.  DSS called - although, oddly enough, his calls seem to be as much wanting to just talk to me about what's going on as they are asking how his dad is doing.  DH's sister called - the one I don't like.  Says she's coming to see him soon.  I dread that, but can't tell her not to come.
Emotions:
Everyone keeps telling me that all these mental aberations are "normal", and "to be expected".  No one tells me how to live with them.  They say I should just go along.  Well, how can I do that when he says "it's time to go home, his car is in the driveway".  And I have no one to talk to at all but this stupid blog.  
I never know when the nurse is coming - and lately, I don't even know which nurse is coming.  The social worker and the chaplain had said they try to visit every 2 weeks or so .. but it's now been 3 weeks since they were here.  The chaplain did at least ask if I get any "me" time.   How can I?  I'm "on duty" 24/7 - and not only that, DH's sleep/wake patterns seem to change daily, so I can't even try to carve out any time (have had to stop twice this morning even just writing this).