Chapter 15 "I'm afraid I can't explain myself, sir. Because I am not myself, you see?"

This was a tough trip.  Is that the right word?  Not sure.  Taking Dave out of his element, out of his routine, makes his deficits all the more evident to me.  I think my son didn't really notice anything different then he has seen most of his life - Dave's disease started for him when Mike was 14 or 15.  The drive was uneventful - I did most of the driving, and could not relax when Dave was driving.  But he was content to sit and literally do nothing.  One of the first things he did when we arrived at my son's was to see if they had the game show network on their tv, which they did - so Family Feud was on whenever he got the remote.  There were times he would change the channel from something my son or daughter-in-law were watching - they didn't say anything, but I could feel that responsibility somehow for his behavior rising up in me.  I know it's not my responsibility - but I can't escape the feeling that I should be able to make him stop.  When asked to change it back, or when told someone had been watching something, he would sort of shrug his shoulders and seemed to have no sense of what others in the room were doing - yes, I know this is part of his disease - yes, I know he does this at home - but witnessing his behavior in front of others somehow makes me embarrassed all over again, makes me want to change it - which I can't.  Every one he met - anywhere we went -  he would talk in Spanish - so what?  Right?  I don't know why it bugs me so much - or maybe it's just hearing it five or ten times a day.  And so what if he's rude and changes the tv channel, or is really loud at restaurants, or chews with his mouth open?  So what?  Why does that bug me?  It's just his disease.    It's just his disease.   It's just his disease.

In part, I know it's because I realize how difficult it is to have him as a guest.  And though all would deny it, I know I won't feel comfortable staying at someone's house again.  Yes, his antics can be funny - yes, Mike's friends understand.  But I know I was embarrassed - and I feel it must make others in our company uncomfortable also.  No one will say it, but perhaps the next time, they just won't make it, you know?  Michael says it doesn't bother him - he just knows that's the way his dad is.  So maybe I'm the only "bad" person - I'm the only one who feels like wanting to hide under the table at the restaurant.  I feel a little bit like being back in the place where people are thinking - wow - she's making too much of this - no one said that - I think my radar is picking up signals that aren't there - I'm losing it!  I have seen the MRI - I live with his behavior every day.  I know that each isolated behavior in and of itself is nothing unique - it's all of them strung together.  UGH!  So I think I'm going to take a break from the blogging for now.  I'm tired of feeling like I'm complaining all the time.  I'm not in a good place with all this, so I don't think this can help anyone right now.  Or maybe I'm the only person it bothers - because it's my partner - my "other half" - actually a part of me this is happening to - I don't know.  Where is my self-proclaimed serenity when I need it?

I wanted to do this blog to share with others my experience - I know when I first started this, it was cathartic for me - and I wanted my family and others dealing with a loved one with FTD to maybe not feel alone in all this if they find my blog and find a shared experience and some hope.  But I don't feel a lot of hope right now.  I sometimes just want to cry and run away.  I'm not taking my own advice very well - to make the most of everyday, find the good in everything, yadda yadda yadda.  I have failed miserably this trip.  So frustrating.  I'm feeling a little sorry for myself, having a pity party.  And I don't like it.  I know part of this experience is the frustration, but right now writing about it is bringing me down even more.  I've tried to be honest and candid here - I felt it would be a good record someday for me to have of this experience - but maybe I've been too candid - put all my dirty laundry out there for whomever might stumble across this blog.  I don't like what this is bringing out in me.  I don't like coming face to face with all my shortcomings, all my weaknesses, my wanting to quit.   

Maybe in a couple of weeks I'll feel differently.  Maybe I'll have recovered from whatever bug or virus I have that seems to have run me into the ground.  Maybe I'll have time to get some perspective.  (I'm beginning to hate that word.)  This trip did not do what I expected - rather then recharge, I think it drained the battery.  There I go - complaining again!  Ugh. 

So three months since the diagnosis - three months til we see Dr. B again.  No significant change in my husband - just in me - and at this point, not for the better.