Day 172

Day 172

(Tuesday and) Wednesday November 13, 2013

Physical:

DH has only been out of bed once in the last 2 days.  Both days when the CNA came, she had to clean him up .. so he doesn't seem able to tell, at least some of the time, when he has "to go".  And he often thinks he does, but thinks he didn't "do anything" when he did.  Yes, I know, TMI .. but these are the facts, folks!

Tuesday his appetite was way off, and he kept saying his stomach hurt.  He didn't even want any homemade soup.  By Wednesday night he did, and ate a fair sized serving (and with remarkably little spillage!).  Pills are still a little bit of an issue

He does have a lot of congestion; but that's not particularly unusual.  He hasn't been around anyone with a cold or anything.

His mental "trips" are getting worse.  He has started occasionally getting angry with me if I tell him he's at home.  It's getting tricky to figure out what to say at times.  Especially in the middle of the night when he throws the covers off and insists it's time to get up.

People:

The CNA comes around noonish each day.  Wednesday she got him shaved, and the sheets changed.  She's admised me that he's too weak to be getting up; but it's hard to argue with him when his mind insists he can do what he wants.

The nurse came (even earlier) Wednesday.  She noted the congestion, and how his speech was (often is) slurred.  His sats were very good and he has no temperature (which means his stomach hurting is probably not infection - and he says it's better anyway.  Perhsps he was hungry and no longer recognizes the feeling.)

Emotions:

I've been trying to keep busy so I don't sit around and feel sad.  Unfortunately, the biggest project I need to accomplish is get clear out paper clutter.  And it makes me mega frustrated to not be able to read things.  I may be tossing important papers, but I can't hold on to everything; and there is absolutely no one who has time and/or inclination to help.  I can't let all this clutter sit around until someone finds time and clearly volunteer help is not going to happen.

Day 170

Day 170
Monday, November 11, 2013
Rather than breaking it down for Monday, I'll just write a bit.  DH had a fairly good night Sunday.  But he just didn't want to get up.  He went through a period Monday morning of wakefulness; but around 10:00 or so he went back to sleep.  The CNA didn't come until late afternoon (which I knew about, so didn't have to sit around *waiting*).  She said he told her he was too tired to get up because he'd been driving all morning.  His mind wnet to the beach and back . sure wish he'd taken me along!  She noted that he seemed very weak; and we both noted that his speech was very slow and slurred - usually a sure sign he's tired.  I did take him a sandwich later (and today have to wash the blanket).  He did take his pills, but it was slow.
In the late evening he insisted he get up to use the commode (actually, his mind told him he should just get up and walk to the bathroom .. he got very annoyed when he couldn't get the rail off, and demanded I take it off!).  I had to stay with him, because even a brief time sitting there he was so tired he couldn't even sit straight.
He did eat another sandwich later, all I could persuade him to eat (only this one was ham so the filling wouldn't spill!!).  And just before going to sleep he ate a bowl of sjerbert (and I barely got there in time to prevent the bowl from going on the floor when he was done).
Several times during the day he kept asking about "Stacy and Idelle".  I had no idea who he was talking about.  Then while sitting up, he asked how long since we'd seen the pennies.  What??  Turns out he was asking about some people I don't ever remember even meeting.  He seemed very disappointed to be told it was over 30 years since he'd seen them.
All in all, a rather strange day.

Day 169

Day 169
Saturday November 9, 2013
PPysical:
While I don't especially notice any hysical changes (it's really hard to tell in someone who isn't ambulatory), he was a bit more fuzzy-minded.  His speech was slurred, and got more so as he got more tired.  He doesn't seem to be able to grasp things .. which is surprising considering his hands seem to remain very strong.  He tried to put his supper tray onto the side table, and wasn't able to get it up about 3 or 4 inches (maybe it's arm strength that's the issue, not hands) .. and in the effort, his plate went on the floor.  Upsidedown, naturally, with what was left of rice-and0gravy.  Again.  It's definately time to try something different, because he spills and drops everything any more.  At least he's eating a bit better lately.
He has been sleeping OK, but Saturday night (Sunday morning) he woke up around 2:30 and demanded to be allowed to use the commode.  The alarm woke me up, but I think he made it alarm on purpose instead of calling me.
The alarm went off several more times (he did not do that), so it was not at all a good night for me!  
People:
It's rare to see anyone at all on a Saturday.  
Emotions:
I got yet another disappointment - this one not exected.  I'm trying not to care, just move forward with what needs to be done.

Day 167

Day 1678
(Thursday and) Friday November 8, 2013
Physical:
The last few days have been fairly uneventful.   DH has been eating fairly well, sleeping through the night  His confusion stays about the same (most of this week he's thought he was in a church), but nothing extreme.  There have been no more episodes of loss of speech. His waking/sleeping are still somewhat at random, but he was up and in his chair most of the afternoons this week (which is good, since I keep forgetting to ask DSS to fix the over-bed table that I broke)..
People:
The  CNA came as usual.  On Thursday evening DSS came by.
Emotions:
I got some disappointing news, and totally over reacted.  I don't know why, since it wasn't actually unexpected.   But I think this is where my problem is.  I over react.  All my life I've been told I was "too sensitive".  I never understood why it was OK for anyone to hurt my feelings, but was not OK for me to care.  Now I'm finally beginning to understand.  The only way to survive in this world is to be cold and hard-hearted.  I don't know if I can be that, but obviously I need to try.  Or at least I can try to quit caring so much about things.
If I don't care so much about physical things, it's easier to keep giving stuff away - especially since I can't even see most of them anyway.  If I don't care about emotional things, then when I spend hours and hours sitting here alone .. no one to even talk to (except the cats) when DH is sleeping, and he usually has no idea what I'm talking about if he isn't I should be able to just work on cleaning dust and dirt that I can't see, or sit and stare into space, without *feeling* anything.   If I can learn to stop feeling, I won't be sad or disappointed or lonely or scared or tired or frustrated or anything. This is a challenge to myself: stop feeling, stop caring.  Just do what I have to do.

Day 165

Day 165
Wednesday, November 6, 2013
Physical:
It was not a "remarkable" day, which are beginning to be the "red letter" days.  After his bath he was up in his chair for several hours.  He had to have the TV so loud that I had to leave the room.  In the mid afternoon he was ready to lay back down.  I had gotten the bed remade with fresh sheets, so just got him undressed and back into bed.  He woke up in the late afternoon, but didn't want to get up.  After some evening TV (regularly watches "Big Bang" reruns from 7 to 8) and some super, he was ready to sleep.
He did wake up around 4 AM again, and throw the covers off  But when I went in and covered him back up, said it was 4 AM and no matter where he thought he was (for the last 2 days he's been "in a church"), it was time to sleep  He went back to sleep (took me much much longer).  
He ate fairly well too; and took all his pills without protest.
People:
It was actually a nice day.  The nurse came very early, as I sort of expected.  She spent more time here than usual .. I think she wasn't feeling well, and said she was "comfortable".  I welcomed the talk with her.  Except, of course, she started on again about how I need to talk to the "family" about how they've got to find a way to help me more.  I just agreed with her (and will talk to the boys at Thanksgiving); but nothing is going to change.  The only one even remotely in a position to spend more time here is DSS.  Not only is he too much in denial to handle it, his GF would resent it too.
The CNA came around mid day, got him washed up, and that's when he got up.
In the early afternoon, the chaplain came by.  Wow, someone actually kept a promise!  (when here last he'd said he'd come back in about a week and a half and tell us about his missionary trip to Ireland).  He is a delightful story teller, and just made me want to go to Ireland more than ever.  He also told us about the particular "outreach" program he was working with.   What a wonderful program!  I totally enjoyed his visit; and I believe DH did also.  After the trip, we also talked a lot about family, holidays, and such.  It was nice, and it was good that he was able to draw DH into the conversation a little bit.
emotions:
I wish I was better at expressing things.  I seem to only be really good at getting across the wrong message.  I don't like having to be "careful" what I say for fear of hurting someone's feelings.  But the truth is, while I do welcome visits from friends, I ache for more closeness with family  I understand everyone is spread far and wide, and all have very busy lives.   Understanding doesn't mean I have to like it!  Friends come and go (in my case, apparently mostly go); but family is a special bond.  
On the mornings when my sleep has been interrupted - especially rainy mornings - I get very weepy.  When I get back to sleep for short naps I have odd dreams (have dreamed about my parents often lately).  I check email, and there's nothing there.  And so another day starts.
As difficult as this is getting, I don't know how long I'll be able to keep up the blog, but I'll try.   

Day 165

Day 164
Tuesday, November 5, 2013
Physical:
What a weird day.  He stayed in bed all day.  I think he would have gotten up in the early afternoon but I goofed on getting laundry done, so had nothing for him to wear.  And, he went to sleep.  In the late afternoon (around 4:00) he wanted to get up to use the commode.  
I was trying to keep an eye on him, but the phone rang.  And in the short time I was gone, he deccided to get up.  He landed on his knees, leaning over the bed.  I tried and tried to get him up.  I tried to call DSS and TGF, but didn't get answers.  In the meantime, he lost his grip and slid over onto the floor.   In the process, the catheter got hung on the bed frame and came apart.  I caught it quickly enough, and got it clamped.  But then I had to call the dialysis nurse to come out here yet again and repair.  
Because of the antibiotic, I had to wait much later than usual to start the dialysis (to allow the antibiotic to dwell at least 5 hours).  He did eat well though, for a change.  
His hearing is getting really bad, that's a conceern.
People:
The CNA came as usual.  The neighbor brought over a plate of food (nothing he would eat, but I enjoyed it).   
I finally got hold of TGF in the evening, and she came with her oldest son to help me get DH up off the floor.  And, as mentioned, the dialysis nurse came out and got him put back together.
Emotions:
The nurse came early this morning.  She keeps telling me I need to talk with "family" (meaning sons) because I can't keeP doing this alone.  Well ... I can if I have to.  My DS lives 2 hours away, and has a job, a wife with health issues, and 2 very active teens.  DH's son is trying to run his own business; his GF is working full time, going to school full time, and has 3 active boys that are into sports, church, etc.  No body has time to be out here any more than they already are.  TGF sort of knows how it is; DSS is even more into denial than I am (at times).  
I just can't stop being sad all the time.

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.