Day 77

Saturday August 10, 2013
Yes, I've skipped a few days.  I'm not even sure there's any point at all to doing this.   Even my "followers" - who ever they are - don't read it.  I don't doubt it's of no interest to anyone.  But every once in awhile I'll keep blogging away.
Physical:
I have not seen any significant change over the last few days.  The nurse came Friday morning, and said she could tell, since she only sees him once a week, that he is slowly declining.  Which leaves me to wonder:  Is she saying that because it's what she expects to see?  (because even though she sees him every week, she also sees many other patients, so how can she be *that* sure about him?).  Is she saying that out of kindness to make sure he remains under hospice care (if there were no change - if he were not declining, but just stable - he'd no longer be qualified)?  Or am I simply in complete denial?  Honestly, I don't know.
He isn't any "weaker" - but then, if he was, he really would be about completely bed-ridden.  As it is, he is up an average of 3 to 4 hours a day.  But part of that is because there's no comfortable place for him to sit that I can get him in or out of.  So really, he's being punished for my short fall.  Totally unfair. :(
He has almost no appetite, and at times simply refuses to eat at all.  Some days are better than others of course.  The neighbor thinks she can "force" him (and me???) to eat by insisting on making or bringing food and putting it in front of us.  All that does is annoy me; and he may or may not eat.  Today she refused to accept when we said it wasn't time to eat (in the middle of the afternoon), so she brought soup over.  Since she put it in front of him (and made a production of one of the girls helping move the rolling table to "just right" in front of him), he ate some of it.  And then wouldn't eat any supper. It was a perfectly good supper (although she acted like she thought either my cooking is no good or she was offended that I was fixing leftovers.  It's really none of her business!)
In any case, with the lack of appetite, his system isn't working very well.  I give him a Dulcolax every night now; but he only has a bm every other day, sometimes a 3rd day. (TIM?  oh wait, no one is reading anyway!)  So far it is not apparently causing him any problem (if he was constipated it would cause trouble with the dialysis; and if he was getting too much of the laxative, he'd get "the runs" which would be a major problem for me).  He also doesn't seem to always know if he has to go or not.  One day this week he had a mess in his underwear (fortunately pull-ups) and didn't know it.   Today he "had" to sit on the commode awhile - and didn't seem to be aware that he did not do anything.  He's nearly completely urinary incontinent; and I can't tell how much is lack of awareness, and how much is just not being able to deal with it in time when he is aware.  In any case, he's sleeping in pull ups; and may soon be wearing them day time too.  He's still resisting that part (except a day when we knew we'd be out many hours), so I don't know how that's going to work out yet.
He's coughing and wheezing more and more.  For some odd reason he has trouble keeping the oxygen tubing in place.  He says it gets "stiff".  But it's not "that" stiff.  I've threatened to tape it in place!
People:
Funny how so many people (sister, brother, cousin, friend) all wanted to come see him that first week.  And since then, only the neighbor, who is driving me crazy.  She keeps just showing up at the door with one or more of her kids (to translate), because she doesn't want me to be alone.  Occasionally I NEED to be alone!  But I've decided to just suck it up, and let her have her hour in the afternoon.  And try to be gracious about it.  I just need for her to stop acting like she thinks I'm an incredibly old feeble incompitent old person who can't keep house, can't cook, and can't take care of my husband.
The aide and nurse came this week as usual.  TGF and her boys went out of town on their annual vacation to Maine (at MY expense).  
DSS spent all of the morning with his dad so I could finally get out and do some shopping.  It's hard to shop when you can't see well, but I managed to get everything on a very lengthy list. (a lot of things I "stock piled" in hopes of not needing another shopping trips for several months at least).   
Since no one comes to see DH (except TN), I don't get to see anyone either.  TGF was going to take me shopping Thursday night; but she'd forgotten she had to take one of the boys to football practice, so she didn't have time for me (as usual).  It's OK, it got done.  My "GF" (and these days I use the term quite loosely) hasn't come this week.  The last time she came she made a huge production of how much her hip hurt; I'd just as soon she stay home in that case.  I take a couple of Aleve every moring, and frequently by night I'm hurting.  But I keep doing what I have to do, and don't say anything.  I don't need to listen to her.  She no longer acts like she cares how I feel.  (and I could go on and on, but tat is not what this is about).
I just think people, especially relatives, could be a bit more diligent about visiting.  He isn't going to live forever, even if I do believe it will certainly be beyond the 6 months time frame.  It would be a shame for them to all be wailing about how they wish they'd spent more time with him.  Really, it's already too late, in that his mind isn't what it once was.  He more and more frequently doesn't even know where he is.  He used to be a very interesting person to talk to.
So, enough, several days worth of catching up but nothing has changed all that much and nothing overly significant has happened.