Day 164

Day 164
Monday, November 5, 2013
Physical:
As usual, the last few days have been full of ups and downs.  Saturday DH never got out of bed all day.  He dozed off and on; but seemed in a more depressed than usual mood. Getting him to eat is hard, and getting him to take his pills was harder.  On Sunday, he didn't even want to get upp when DSS got here.  I left to do my errands; and when we got back (dark already, thanks to time change), he was demanding to get up "because it was time".  So, he was up around 6:30 and wouldn't go to bed until after 10:00 (which makes for a very long day for me!).  Monday morning he was ready to get upp.  The CNA didn't come until early afternoon, at which time he was ready for a nap.  He slept all afternoon, but then wanted to get up again.  He didn't stay up as late .. was settled down by 9:00 ... but at 2:00 AM he had another of his "episodes".  It was very hard to convince him that it was NOT time to get up and go somewhere.  I finally told him quite sternly to roll over on his side and go to sleep.  I think I sounded like his mother at that point, so he did.
Something else that's become much more pronounced in the last wee is that he's becoming very hard of hearing.  He keeps wanting the TV turned very loud.  I have to repeat a lot I say, and have to talk louder and louder. I need to ask the nurse if this is "normal progression".
People:
There is rarely anyone here on Saturdays.  On Sunday we had the usual family gathering (DSS, his girlfriend, her boys)  I believe those boys make DH a bit nervous.  They have not been part of the family long enough for him to have formed much attachment to them.  They frequently go in and out, back and forth (have to pass DH's chair to go to the bathroom), but rarely even speak to him.  I think that has his world grows smaller, and long past memories surface, his son (and the 4 "original" grandchildren) are the ones important in his mind.
Monday was only the CMN.
Emotions:
I sometimes wonder if I made a mistake by starting this blog.  It's mainly dreary and depressing.  But if I don't have somewhere to express all the feelings I'm going through, I think I might explode!
I *know* that sometimes the best thing to do is get busy with something.  Just knowing something doesn't necessarily make it easy to do.  It is frustrating beyond anything I can express to have such limited vision, and it growing worse at an alarming rate.  That makes anything I try to do so much harder.  And it's both frustrating and depressing to have things be piling up that I need help with, but no one has time to bother.  It appears there just isn't going to be any "volunteer" help for us, despite what we were originally told.  As the CNA pointed out, none of them "have" to go help anyone if they choose not to .. and it certainly feels like all the volunteers choose not to come way out here.  (the volunteer coordinator called me - can't remember if I said already - she asked me several times if *I* needed help or if DH needed something.  Although that's also quite contrary to what we were told, I don't think she wanted to find someone just to help me.  My vision has nothing to do with his care.  Apparently giving me anything vaguely resembling a "break" is too).  
On Saturday I made up my mind to at least try to do something.  I made a list of 7 items; and got 5 of them done.  And yes, it did help .. I was too tired to be sad! LOL!  On Sunday morning I finished the list, plus a few more things.  But then I had nothing to do but sit and wait for hours.
Monday was similar.  It was so late by the time I had gotten DH settled, and I was SO tired, I didn't get u early enough.  So a huge mess in the kitchen had to wait until late afternoon (during the winter daylight hours the light in my kitchen window is too bright for my eyes to tolerate.  I haven't tried wearing sunglasses to do dishes - maybe I will).  
I thought today (Tuesday) I'd get a fresh start.  But the 2 AM episode ruined my night's sleep, so I really had to struggle to get up.  Some things will get done .. others I will hope for tomorrow!
Meantime .. I still feel sad.  I spend many many hours here with no one but the cats to talk to.  And when I do talk (yell) to DH, he often has no idea what I'm talking about.  The man I used to know is long gone, and I think that's the most depressing thing of all.