Day 219

Day 219

Sunday December 29, 2013

Physical:

Sunday was, in general, a fairly good day.  DH was “up and down” a bit more than usual; that is hard, because I have to just sit there and wait for him … don’t dare leave him on his own.  He simply cannot “connect” with the fact that he’s no longer strong enough to stand and support his own weight.  At least he wasn’t quite as “off” in his mind as he’s been lately.  He did keep going on about cats escaping; I can only assume that seeing Maggie frequently has put that in his mind.

He didn’t eat as well as I expected for his supper .. even though I gave him some “dirty rice” which he loves.  But we did have birthday cake and ice cream in the afternoon; I have no idea if that had anything to do with it or not but I don’t think it matters that much.

He’s not sleeping well, mostly because of coughing.  But I have learned not to go check as often; I can recognize the difference in sound between just “resettling” and trying to pull on the rails. He’s still sleeping this morning (Monday), but coughing a lot.

People:

My brother, sister-in-law, and sister came over and brought birthday cake and ice cream!  Nice!!  I love when they visit,  and I believe Jimmy enjoyed it too.  He didn’t even doze as much while they were here, even though he rarely says much any more.  (he did tell them about the cats he “lost” and the one who sleeps in the car tail pipe).

Emotions:

As usual, very mixed.  Sad when family left but mostly because I know it will be a long time before I see them again.

Emotions:

I turned the TV off and turned on an audible book.  I thought it would put me to sleep, but it didn’t.  I will have to soon get more books downloaded .. it’s a bit of a relief to have something to “do”.  I did finally get my bobbins, so I can try to sew; it’s been so long that I don’t know how difficult it will be.  I have to “undecorated” the sewing table first.  But I’m hoping that between being able to sew some, and “read” again, I’ll be less depressed.  I won’t be less tired or frustrated – there’s just no way around that.  But we’re heading into a few winter months which tend to be a bit dark and dreary.  With S.A.D.D. on top of everything else, winter can be stressful.  I have to keep reminding myself to just take things “one day at a time”.

Day 218

Day 218

Saturday December 28, 2013

Physical:

The day started earlier than I would have liked; but after an initial frustrating start, he calmed down.  Today’s “subject” was cats.  He kept insisting that 2 cats got in the car, but then he lost them.  The “pretty one” (from his description, sounded like Maggie) jumped out of the car and he was sad about that.  There has to be some connection with the fact that Maggie has started hanging around his room again.  She really Loves his new soft fleece blanket!!

Once he was up he stayed up until mid afternoon.  I took him back for a nap when I left to go shopping, and got him up when I got home.  He ate a good supper (meaning he ate a lot, not that it was “good” – sausage dip and chips, potato salad, chocolate cake).  I think he ate too near bedtime again.  He didn’t wake up during the night, but he did have a hard time getting to sleep because of coughing and a lot of congestion.  It was later than usual (not by much, maybe 45 minutes) getting to bed; and once he finally got to sleep there was only one minor incident around 10:30 or so.  I had put a dishpan on the bed (going through multiple trials of ways for him to deal with coughing up phlegm); and he wanted a second one.  He got to sleep but woke again, and was calling for “mom”. L  He had thrown the pans on the floor (I think because he said his hands were full .. not really sure about that).  I picked them back up, and he did go on back to sleep.

He’s sleeping in so far Sunday morning .. chilly and very very wet (so still darkish). 

People:

It was another busy day, but only “super busy” for a brief spell.  For a short time we had all 4 of our “real” grandchildren here.  (Note: it’s not that I don’t consider TGF’s kids “real” grands .. but .. she is not married to DSS, and these boys were just thrust upon us a few years ago.  I call them “bonus” grands; but my son’s kids have been my grands since birth; DSS’s boys have been our grands since  very very young (the oldest boy who is now nearly 21) and since birth.)

With DSS and TGF as well as DS and DIL, plus 6 kids (including 2 of hers) it was crowded and noisy for awhile.  He coped with it pretty well; he has always been very attached to DSS’s 2 boys, and was very happy to get to see them again before their return to GA

DS and family were here until around 9:00.  DH did finally give up and admit he was ready for bed by a little after 8:00

DS tok me to pick up some refills, and to get groceries.  I didn’t print my list, and forgot a few things; but I’ll just have to manage for another week. (I’m a lot more concerned over trash piling up.  On Thursday they took some, but not much.  The outside can is full and – again – I can’t see well enough to see if they brought the other can back (I was told it was in the truck, and I *think* they were using the truck yesterday).  I have bags piled in the kitchen and in the front hall.  I’m not liking this trash situation, but othing I can do about it.

I got GCs for Chritmas, so at Wally I got a Scotty CD and some decent headphones (ear buds give me a headache). 

Emotions:

Confused. And really tired of the hospice people getting my hopes up for different things and then letting me down.  Tired of the boys helping lift DH, noting how heavy he is … and then not “getting it” that I do that by myself multiple times a day.

DS and DIL helped me look for my lost ipod (which they found).  DIL said she would spend some time with me either a weekend or spring break, to help me go through my “office closet” again.  I’ve made a huge amount of progress on it; but I’m still having trouble with finding things.  And I need to “let go” of a lot more.  I guess she doesn’t want to get stuck with doing that job someday when I can no longer see at all! LOL! 

I have enjoyed (and do believe DH has too) having company so much over the holidays.  It’s sad that it will soon come to an end, and things will go back to normal boring long empty days.  Finally being able to listen to books will help.  Getting my ipod back useable will help – except that most of my music has disappeared!  It WAS on this computer.  Now it’s gone.  DS still has my old one (was passed on to one of the grands when I got this bigger one) … the screen is broken; but he thinks my itunes is still on it, so he will transfer all data to an external hard drive, then see if he can transfer it to my lapto .. or at least download the missing music (there was a LOT).

(doesn’t it sound like I know what I’m talking about! Hahahahaha!)

I will have to start thinking about packing up the decorations .. in a few weeks I guess.  In the past this was when I got the upstairs cleaned out.  Since I no longer seem to have any help with things like that (that I did have in the past), I don’t know how much will get done.  I know I need to purge a lot of what’s up there; and again, it’s hard to let go of some things – and others, I can’t see detail and not sure if I want to keep or not.

It’s close to 10:00 AM now, and still dark and gloomy, rainy.  I keep losing my internet signal (no surprise there).  I still have more dishes to wash from yesterday; my kitchen floor is sticky (ewww); and I haven’t even gotten in the shower yet. I think I need to get this day going!

Day 127

Day 217

Friday December 27, 2013

Friday was a somewhat odd day.  DH slept until around 11:30 or so .. and only got up thenWhen I got him up because the chaplain was coming by. 

The chaplain and the social worker both came by .. and I later figured out they were going around more or less in tandom catching u with patients and also pairing with the nurse; the CAN later also told me she’d had to wait 45 minutes at one place while they talked to a patient.  That made it 3:00 before she got here.  Side note: somehow this visit didn’t feel as “special” as other ones have.  It was just a bit of a friendly chat.  No bothering to ask if we need anything.  And the S/W never said a word about any facility .. so I gather, once again, there is no help to be had for us.

DH actually dozed off and on while they were here. He continued to doze off and on (mostly “on”) until the CAN came.  After she got him washed up, he wanted to just stay in bed; and he never got up.  Around 5:30 I woke him to see if he wanted to get up a little.  At that time he decided the warehouse was too cold and he’d just stay put (he had 3 blankets at the time).  I fixed him some supper and took it to him, got dialysis set up, got him into dry clothes, and he settled in – and within minutes was asleep. 

He barely woke enough to take his last ills, and he did not wake  an hour or two later with a coughing spell.  He had a remarkably quiet night, up til around 3:00.  He woke up with coughing  (and, again, in a car); but I got him to settle fairly quickly.  He woke again around 5:30; he didn’t settle as quickly then, but he did go back to sleep.  But, by 8:30 he was demanding to get out of bed.  I really needed to get a few things done, but he was not going to quit trying to either climb over the bed rail or break the rail. 

Of course, once I got him up and into his chair, he went back to sleep.

There is no way to predict what his sleep/wake patterns will be from one hour to the next, much less day to day.  It’s frustrating – and exhausting – trying to keep up and also get the things done that I need to.

It seems this might be one of those “up and down” days.  But  since he got up so early, maybe he’ll be ready for a nap this afternoon when I get a chance to go shopping.

Geez, it just sounds like a 2 year old!!!

Day 215

Day 215

(Wednesday and) Thursday December 26, 2013

Physical:

I have a hard time pinpointing any change or lack of change.  He seems to change daily, but it goes back and forth.  Christmas morning he slept in .. roused barely enough to take pills, went back to sleep.  I even got to sleep until 8:00!  He didn’t really wake up until into the afternoon (although I did get him up .. he took his pills, then went back to sleep in his chair). 

He’s gotten to a point mentally where I can’t really tell if there’s change or not.  Some days he seems more agitated than others; but the things he believes to be “real” don’t really change.  On Thursday he was going back and forth between thinking he’d shot a deer and that someone else had given him one.  He woke up about 2 hours after going to bed, and was telling me there was a dead goat in the hall because it had been hit by a car.

His appetite is still a bit “on the edge”.  Some days he’ll eat well, others not so much – even when it’s something he does like.  There are several different snacks on the table by his chair, but he mostly ignores those too.

People:

On Christmas Day we didn’t see anyone at all.  Since he slept a large part of the day it’s just as well.  It did feel a bit lonely, but it really was best.  I did talk to my brother, to my son (rare!), and (very briefly) to my oldest grandson.

On Thursday it was late afternoon before anyone got here.  It’s hard not to feel a bit cheated out of time with the GA grandsons; but they are here to see their dad, not us.  Oddly, the CAN got here about the same time they crowd did.  She got him cleaned up and back … and maybe half an hour after she left, I had to take him back again to use the commode.  Grrrrrr.  I had trouble getting his pajama pants u (elastic waist, and sometimes they slip down to his feet when he stands up.  DSS knocked on the door and asked if I needed help.  He did help hold DH up so I could deal with the pants .. then he left.  He (DSS) has NO CLUE how hard this is on a daily basis, and gets annoyed with me when I get upset.

DSS and crew brought BoJangles, which was nice.  Before they left, DGS14 (and the younger boys) helped get trash gathered, and took as much as would fit in the trunk of the car.  DGS14 even changed out the litter boxes for me! 

Emotions:

It’s hard to separate holiday blues from day=to-day sad.  It’s not even remotely logical to want company “all the time”.  And sometimes when someone is here late,  it’s hard to have to “switch gears” .. because there’s always stuff I have to do before I can *stop* for the day.  And even then I don’t really get to stop.  Lately DH has been waking back up an hour or two after getting to bed.  I think the coughing is waking him up .. seems to me it’s getting worse, but the nurse doesn’t seem to be concerned (then again, she doesn’t actually see/hear it).  Anyway, I have to get him settled again; and then I have a hard time getting to sleep because I keep listening to be sure he’s sleeping.  And more often than not I have to get up at least once during the night to get him settled.  At least for the last week or so he hasn’t been so wired about car keys and stuff so that he wouldn’t go back to sleep.  I’ve not needed to try using the gel for a week.

The point of all my rambling is that I’m tired and that affects (effects?? I’m never sure which word is correct) my attitude.  I want company, and at the same time I just want time to rest without having to keep getting up.

I have had some “time off”.  But even then, I’ve had to make sure to deal with dialysis and pills before I can go off.  In just under 10 months now, I’ve had: one evening at a play (TGF took me and her mom for Mother’s Day); 2 half days and 1 full day with DS/DIL; one evening (less than 2 hours) to go see Lights.  As I said, each time I had to make sure dialysis was dealt with, and ills were at least set upp and clearly marked when they were due.  And none of the times has anyone ever had to deal with getting DH on and off commode (although that’s partly his fault – refuses to tell anyone he needs it but will just wait for me). 

The nurse hinted at finding a resite care facility that can handle dialysis – but she said the social worker would let me know; and I’ve not heard from her in over a month now (every 2 to 3 weeks????).

So complain, complain.  How do I feel?  Tired and frustrated.  And very sad that the holidays will soon be over, and we will go back to not seeing or hearing from family much.

I have an eye appointment .. but will have to (again) postpone it.  There is NO ONE who can take a day off work to just sit here with DH.  DSS can drive me .. but with the construction going on, the drive will be much longer than usual, so a long day for someone to be here.  I may even have to postpone my appointment until April, so someone on spring break can come here.

DH is sleeping in again today, so I better go take advantage of this time while I can.

Day 213

Day 213

(Monday and) Tuesday December 24, 2013

Physical:

There are good days and bad days, but from a mental standpoint, there are a lot more bad days.  Hints and guesses are all I get from the “medical people”; but from what I can figure out from what they say, he’s having a bit of a downhill swing, and sort of fighting it.  Like he knows he’s getting worse, and trying not bo do so.  Or more like, he knows he’s gradually losing control so he’s struggling as much as he can to maintain control where he can.  And that is primarily just when he’s home with me.  Even though wanting to “go home” is a constant refrain, he does realiz that I am constant and everyone else will go away.  Therefore, when it’s only me, he will use every means he can to force me to go along with what he wants.  That is mainly the getting in and out of bed, especially at inappropriate times.  Unless she just doesn’t ask he will tell the CAN he doesn’t want to get up after his bath, but once she’s gone he’ll insist I get him up.

I was asked why he can’t walk any more.  The best answer I can give is a combination of just not doing it for so long (because of balance issues plus right-side weakness) plus a general continuing weakness.  I also wonder, though, how much the dementia ha to do with it.  His mind persists in thinking he can get up and walk any time he wants to (and it constantly surprises and puzzles him to find out he can’t)  As nearly as I understand, dementia is basically a condition caused by loss of blood flow (for whatever reasons, blood vessels “close up” and cease to function;  in his case, presumably due to anti-rejection drugs and strokes).  It’s most noticeable in his thinking ability because there are so many more blood vessels in the brain.  But it actually does affect all areas of the body .. so * can only guess that it’s contributing to a weakness in his legs and knees.  There have been times, especially when he’s very tired, that he can’t manage to use his arms to hold on to me; yet his hands are still very strong.

He continues to have coughing spells; but I am still believing that sitting upright, or sleeping with his head a bit elevated, helps to relieve some of it.  He has progressively gotten to where he coughs up more phlegm, more often; but the nurse doesn’t seem to see that as a problem (she’s said several times that though his lungs are failing, the bulk of his ever present congestion is more sinus).

People:

On Monday the CAN came as usual.  In the afternoon TGF came by.  She helped me with a computer issue; but due to rain (and other issues as well I think), there was no trip (play on words! LOL) to see the lights.  Just as well, since she was (as usual) over booked and had things to go do.Just as well, as it turned out to not be a great evening here.

On Tuesday the nurse and CAN both came at the same time.  The nurse said it was time for his re-evaluation (6 months on hospice); but when she left she said we’d do it next week (the 6 months isn’t actually up until January 9^th). Unfortunately, the timing was “off”.  They got here only minutes before my family got here.  After getting him washed up, he said he didn’t feel good and wanted to just stay in bed.  So he really missed most of the visiting.  My brother, and sister-in-law, sister, and nice and her son came.  Even while feeling faintly guilty that he missed the visit, I totally enjoyed it!  I love my family dearly, and wish it was possible to see them more often.  Everyone works or lives too far away.

Emotions:

Today is Christmas Day.  I am feelings a bit forlorn, because (as in many other years), the boys all prefer Christmas at home with their family.  We celebrate on other days, according to what’s convenient for them. Since DH does get tired so easily; and since too much going on tends to get him more confused I’ve tried to set things up so that we only have “big gatherings” every other day.  So, as it falls, today is a by ourselves day.  But even though somewhat planned this way .. it’s still Christmas Day, and we will most likely not see any one at all.

I would like to try (again) to make clear my thoughts on visitors.  When family, or *close* friends come by, they are welcome no matter what.  Right this minute, for example, I’d be a bit embarrassed because I don’t consider my house to be as clean as it should .. but I wouldn’t turn anyone away.  I’m not one who only welcomes visitors when I’ve issued a specific invitation.  I do, however understand that people who live “far away” (meaning any one who lives far enough away to be annoyed if they “dropped by” and I already had other company or happened (rre) to not be home).  If someone asks if they can come on a specific date, unless I already know there’s a doctor’s appointment, I will say yes!  I will not tell anyone, ever, to not come because someone else *might* come here.

I used to have a friend who would just drop in at random times with no warning.  If I was busy she’d either help me or she’d go do something else until I got to a stopping point.  But she doesn’t come visit any more.

I do have a problem with the neighbor who had started just coming over .. with several kids including a 2 year old … and expecting me to just stop everything and sit.  While she conversed with her children in Spanish .. every once in a while a child would say “mama wants to know” something or other.  Then they’d go back to Spanish.  It’s a very awkward feeling to be expected to sit and politely listen to someone who leaves me out of the conversation .. and in my own home!  Anyway, I guess they finally figured out I wasn’t very happy with them just coming over (especially the little girls .. cute and all, but it really got on my nerves that they started just walking in without knocking, always wanting to borrow stuff). 

Family, on the other hand, is always welcome no matter what.  I will even be nice to DH’s “other son” (though I will have to grit my teeth to do so), who can’t be bothered to call his dad or even check on him more than 2 or 3 times a year. 

Today my Christmas gift was the luxury of “sleeping in”!!!  I got up at 8:00 to take DH a pill, then crawled back under my quilt for nearly another hour.  I took him more pills, and thought about my quilt again!  Instead I got coffee and came to the computer.  I’ve gotten dressed and fed the kittens.

I won’t wake up DH (I’m very grateful for the days he sleeps late!).  So I think I’ll go back to my chair and quilt and find something Christmas on TV.  Later today I know I’ll have to put things back in order for tomorrow.  Whenever DH does wake up, I’ll get him dressed and up and then we’ll open gifts.  I will try to find ways to make this day pass without getting weepy!! 

Day 211

Day 211

Sunday December 22 2013

Physical:

This was not even remotely a good day.  DH woke up  around 4:30.  He did finally go back to sleep off and on, but by 7:30 I had to get him up.  His mind was so far “gone” I just didn’t know what to do.  He was furious with me, and insisted on “going home”.   I even slapped him once.  Yes, I feel very guilty for that.  He kept trying to pull the sheets off the bed because he said he was looking for the car keys – and I slapped his arm away.  It was not a “hard” slap; but I forget how easily he bruises, so it left a big red mark. L

Once I had him up, he absolutely refused to let me get him into his chair.  He wanted the phone so “call the manager” to let them know he was leaving “this place”.  And at one point he told me he would not go to his chair because I’d “hide” his wheelchair and he’d be “trapped” in the chair.  At least he did take his pills and drink with no problem.

After about 4 hours, he finally wanted to go to the bathroom.  He *thought* he was going to roll himself in, but realized he couldn’t do that.  He decided to allow me to take him back to the commode in the bedroom.  And then after using it, decided maybe he would lay down for a little while.

I didn’t get him back up, but after napping for awhile, he again started trying to get off the bed.  I just kept telling him to wait for DSS who would be here soon.

Once TGF and then DSS got here (no kids this time, all at the other granny’s house), I left it to DSS to get him up.  He told me later he was talking “off the wall” all afternoon.

Oh, I forgot, after DSS got him up, I did make him a sandwich before we left.  I’m pretty sure DSS and DH had some sherbert during the afternoon (which is fine of course).

TGF and I got our shopping done, and stopped by Zaxbys for some take out supper. 

After we ate, they went on home.  DH was starting to say he was tired (by then it was close to 7:00).  I told him his favorite show was coming on, and then I hurried to get dialysis set up.  But then he said he wanted to keep watching TV .. and promptly fell asleep in his chair.

When I went to get him up, he was sound asleep, and I couldn’t get him really awake.  So when I tried to move him to th wheelchair, he just sagged .. before I could get him moved over.  He went down on the floor, I fell one way and the wheelchair went the other.  He wasn’t hurt; my knees are not happy, but no serious damage done to either of us.

I was not able to get DSS on the phone, so I called 911.  I also notified hospice.  The EMTs got here, helped me get him off the floor, and then stayed until I had gotten him safely on the bed.  Just after I had given him the last pills of the day, a hospice nurse got here.  She also checked him out.

He went promptly to sleep.  About an hour later he woke up (didn’t think he’d been to sleep), but was not agitated and went on back to sleep (had to assure him that we would take care of “closing the aquarium” in the morning.)  He was restless a lot during the night, but not enough that I had to get up again.

People:

DSS spent the afternoon with DH.  And the EMTs and a night nurse were here.

Emotions:

Drained exhausted, and scared.  Not of the falls (though it’s very worrisome .. it’s harder and harder to move him; and yet I really have no choice.  ).  But the mental breakdown is not something I have any clue how to deal with.  I keep being told to “just go along” with him.  But when he’s trying his best to get off the bed – to the point I’m seriously afraid he’ll break the bed and/or hurt himself, I can’t “humor” him.  When he is insistent on getting “in the front seat” and driving “home” at 3:00 in the morning, how can I “humor” him???    And I don’t know how to deal with his always wanting to “go home”.  The worse he gets the more alone I feel.

This morning he seemed closer to “normal” (though I’d not really sure what that is any more).  But when I took him his pills, he got choked and gagged .. could barely get his breath.  I raised the head of the bed, and he finally got settled .. he said it’s the pills.  For some reason when he takes the morning pills he frequently chokes .. even though he has twice as many at night and also while laying in bed.  But, I will have to start raising the bed up for him to take them.  Once he settled down, he asked me “how was last night”?  I thought he meant if I had slept .. so I asked what he meant .. and he said “at work”.  >sigh>

Time to go get a shower and get this day started .. much to do and no idea how much time I’ll actually have to do it!

Day 210

Day 210
Saturday December 21, 2013

I hate weekends.  Especially Saturdays.  There's not even hospice people coming and going.  
DH got up at 7:00 AM, but was ready to go back for a nap at 11:00.  He got up again about 4:30, and by 8:00 was more than ready to go back to bed.  He woke up briefly around 11:00.

It is now 6:30 Sunday morning.  I've been up for 2 hours.  He woke up around 4:30, and was absolutely convinced he was in a car.  He was gripping the bed rail trying to "open the car door" .. his hands are still strong, I'm afraid one of these days he's going to actually break the bed rail.  Around 5:00 I tried using the gel .. he did clam down a bit, but remained convinced he was in the car.  I think he finally fell asleep from pure exhaustion .. but I, of course, am totally awake.  A load of laundry is washed and in the dryer.  I'm on my 2nd cup of coffee.  Because it's Sunday, there will be no chance for a nap later.

His insistence on "going home" is so stressful.  It doesn't matter if I tell him he's home (which he doesn't believe anyway), or just go along and tell him "we'll go soon" .. or even if I try to find out where he wants to go.  He stays agitated and frustrated about not being where ever it is he thinks he's supposed to be.  
I keep thinking "I can't do this" but I don't have any choice.   There's no where else for us to be, and no one else that is willing or able to help any more than they already do (which doesn't actually amount to much "help").  I wish sometimes someone else would deal with his illusions in the middle of the night  ... no one has any idea how hard it is.

I think I'm just too tired and sad to be writing right now.  I won't delete, because the whole point is an outlet for my feelings.  
Unless they (DSS & TGF - no kids today) are late, as they usually are, the "plan" is to go to pick up med refills, then go to a shopping center much farther away.  Target is offering customers a 10% discount (and I was not at all effected by their computer issues) .. I can get what I need as well there as Wal-Mart, so might as well get a discount.   I desperately hope I can at least get enough of what I need to get me through Christmas.  I am hoping that if I have gifts, and on Monday can make a few goodies, I'll feel more ... something.  

Day 209

Day 209
Friday December 20, 2013
Physical:
DH ended up staying in bed more than half the day.  He got mad at me in the morning and refused to get up; then just decided to stay where he was.  His bath was much later in the afternoon than usual; but he wasn't offered an option of getting up then.  
As usual, he slept off and on in his chair, and was ready for bed by 8:00.  But then .. again .. he woke up only a few hours later.  He did settle and go back to sleep (without any gel); but he didn't sleep well.  He kept waking up restless, but then would go right back to sleep.
By 7:00 this morning (Saturday) he wasnted to get up (but a potty break first). His mind just keeps getting worse.  He totally cannot realize/accept that this is home and he lives here.  He also continues to believe he's been out walking around, coming and going .. so it's a constant effort to be vigilant and make sure he doesn't try to get up by himself.
His appetite is still not good; but he will usually eat if I give him something - especially if it's something he really likes.  But I have also seen him fall asleep holding a sandwich and forget to eat it.  I bravely tried a rice dish again, and of course he managed to get  sticky rice all over himself - even with a towel draped around his neck.
People:
The supply delivery came in the early afternoon; and the CNA got here about mid afternoon.  DSS called in the evening, but only talked briefly - said he was losing signal & would call back, but he never did.
Emotions:
It's probably a bad idea to be writing this morning.  I'm so stressed and frustrated.  DH demanding to get up so early after a not so good night makes me exhausted and very grumpy.  It feels like what tiny sliver of time I get for myself is being taken away.  It feels like I'm not even a normal human being with any feelings or rights.  I'm just a slave 24 hours a day.    I desperately need for his sons to step u and do a lot more to help out - and that just isn't going to happen. 
I know it's not reasonable or practical to want someone else here all day or every day.  I would not even like that .. but what I would like is occasionally someone to take over being responsible for him for a day or even a few hours.  On Sunday afternoons DSS is here; but the most he ever does is take his dad back to lay down, or maybe get him up.  He helps me get him to clinic, but he's not here to help get him up and dressed.  Every time I ask him to get here early; but he always shows up just when it's time to leave.  Not a single one of them has ever made any effort to learn anything about his medications, his dialysis, or anything.  And they (at least some of them) are aware how bad my vision is getting and how hard all of that is getting.  They simply don't see taking care of parents as their responsibility.
Earlier in the week I had a chance to ride with my sister to see Lights.  That would have been maybe an hour.  But at the last minute TGF was sick.  She called and said DSS would come over, because they were *trying* to let me go have some fun.  Well, there was a major communication problem.  He was at his shop waiting to meet with a contractor when DSis got here .. so I didn't get to go.  It was not that big a deal; and I might get another chance.  But it's just another example of how anything here takes a "back seat" to anything else.  TGF can never take me anywhere on Saturday, because she has too many things more important (like last Saturday - the church took her shopping for Christmas presents for her boys; then she had to take one to basketball and one to football; then she had to go to a party with her best friend.  Well, obviously, all of that was urgently important.  It's not that I expect her to drop everything - or anything - for me.  But seriously, it's a major hardship that I can't even ever go anywhere on a week day.  Oh yeah, she had said she didn't work Wednesdays in December so she could take me shopping.  Yeah, right.  That didn't happen .. she planned many things for all of those days.  She did manage a few hours one afternoon, but not to go anywhere.
Even with my decorations up, I just don't feel like I have any Christmas spirit this year.Even while I know it's better for DH to not have too much company, I feel alone.  His sister has frequently said she would come by .. and then never shown up.  She even said she'd come spend an afternoon here with me baking.  But that never happened.  I used to bake a lot at Christmas; but it's just more trouble than it's worth when I can't see well enough to even set the oven right. I finally came up with some no-bake recipes, but I can't even do those until after I get to the grocery store - which of course will not happen until Sunday afternoon.  I can't recall a time when we've had company during the holiday.  DS has out of state comppany - and he doesn't have heat, a kitchen, and only one bathroom.  So there must be something drastically wrong with us, no one ever wants to visit more than just an afternoon.   I'm envious of families who get together for long weekends, holidays, whatever ... I envisage them having good food, drinnks, laughing a lot, enjoying each others company.  And I stay here alone with someone who can't even carry on a conversation (he just told me a few minutes ago he had to be heading home soon).  There's no Christmas music or TV specials .. partly because he has the TV turned loud enough for the neighbors to hear.  My head is just thumping.  
I guess I need to go on and get a shower and get yet another long boring day started.

Day 208

Day 208
Thursday December 19 2013
Physical:
This was an odd day.   At first this morning DH was relatively calm.  He was in the aquarium, in a car, and briefly in an airplane.  He kept wondering where all the people were.  But he wasn't overly agittated.  Unfortunately the CNA was later, and by 12:30 he was absolutely adamant about getting out of bed.  I got him up , but she was here about half an hour later. (and he thought she was here to cut his hair).  After his bath she brought him back to the recliner.  I brought him his pills; and right after that he went to sleep!
This evening though, he keeps wanting to go home.  I explained to him 3 times that he IS at home; so he finally settled for asking me to call his mother and tell her where he is.  Not sure I can call that loud since she's been gone more than 20 years.  
He seems more distressed tonight.  The whole thing about this is our home is just not registering.
People:
The CNA, as I said, came a bit late.  I did finally get a volunteer.  A very nice lady came over, and we pretty much spent the afternoon talking.  I couldn't locate the recipe I wanted, but she said she'll come back again and we'll bake.
This evening the MK lady brought my order.
~~
I started writing last night but will try to add a note this morning.  I may not have much time as he's fretting a bit.  I got DH to bed around 8:30 (Thursday nights he gets an "extra" "Big Bang"! LOL).  By 10:30 he was awake again, and absolutely nothing I could say would convince him that he wasn't in a car.  And he was determined to get out.  He kept saying the seat wouldn't "fold" right; then he tried to sit up see where he was going.  I decided to try the gel - he didn't try to fight me on that at least.  He did gradually calm down and quit struggling; but   But even after he calmed down, and I had stood there a few minutes - he told me to "open the door and have a seat". :(
He woke again around 3:30, but calmed down and went back to sleep quickly.
This morning he's on a bus. :(
Emotions:
The whole issue with him either thinking I'm his mom, or wanting to call her, has me feeling really sad.  I hope he's going to settle quickly tonight; but if he doesn't at least I know I have the gel as a back up.
This morning I feel a bit depresssed, but probably just because I feel tired.  I did get back to sleep (eventually), but an interrupted night just is not restful. My knees and back are achy and I dread having to heft DH around.  And I feel guilty for feeling that way.  And I feel tired of feeling guilty.

Day 207

Day 207
Wednesday December 18, 2013
PPhysical:

This day is a little harder to define, as it was not our "normal" day.  DH had his monthly clinic, and that's always stressful.  Getting him up and dressed was not too difficult, though he was a little fretful about where was this or that.  DSS and I seem to have a good grasp of how to get DH in and out of the car (though we both acknowledge some days are easier than others).  
We did not have to wait too long to get taken back to the "exam room"; but once there, we were there close to 2 hours.  Because it's only once a month, everyone has to come in and out.  The social worker insists on "chatting" with us, and asking hard-to-answer questions.  She wants to discuss things I would rather not talk about in front of DH .. I see absolutely no advantage in getting him upset!  She did, however, finally get a glimpse of how his mind is these days, when he told her we had been at the aquarium before coming to clinic.  The nutritionist had to come in, but I think she has finally figured out that trying to pressure us about his appetite is a waste of time.  The doctor wasn't in there more than 5 minutes at the most (and I'm pretty sure it was more like 3 minutes).  He was told (and I don't believe he was aware) that DH is on hospice, mainly for his lung rejection; but that also his dementia is getting much worse.  The doctor said the dialysis is working and did not change anything.  The nurse talked with me about how things are going, took care of a few issues, gave DH an iron infusion and his epogen shot (a double shot so none will be needed in the holiday week).  
By the time we left, DH was miserable and so tired he could barely hold his head up.  When we got home he went straight to bed, and slept until after 7:00!  At one point he did rouse enough for me to get him to take his ppills.  Later I persuaded him to eat a sandwich; and he also ate a bowl of sherbert.  At 7:30 he wanted to get up!  I was not sure that was a good idea, but got him up with no trouble.  He wanted to just stay in the wheelchair; and was only up an hour and ready to go back.
The gel came yesterday, but I didn't need to use it last night.  He woke up around  4:00 AM wanting to call the police because the trailer smelled funny.  But I got him to go back to sleep easily, and he did not get all agitated.
This morning he still thinks he's at the aquarium, and I did have to tell him several times to go back to sleep.  But he's being agreeable
People:
Because of clinic, there were all the people listed above, plus DH.  I still have not heard from DH's sister (I wish she'd at least call - he wants and needs a haircut!)
Emotions:
Last night I got a crying spell, but I'm pretty sure it was mostly from being tired.  Well, and a little discouraged.  It's only a week to Christmas.  I can't shop on line because I can't see well enough.  I can't go shopping because I have to have both a driver and a "sitter".  I only get that for a few hours on Sunday afternoons (and even that often gets shortened because TGF has something else she has to do).  Now I'm down to only one Sunday afternoon, and having to juggle what I can do.  I'm "settling" for gift cards .. I think that's a bit of a cop-out (even though I love to get them! LOL).  But there's really not much else I can do ... so now have to figure out how to juggle things so that I can get the rest of the cards I need as well as get groceries.  The bank only allows me to access a certain amount of my funds (and the gift cards can only be purchased using a debit card.
Anyway, stressing about that, worrying about  getting rid of the enormous pile of cardboard on the porch, just general stressing over all the things I can't do for myself and no one is around to help with .. at times, especially when I'm tired, it's just all overwhelming.  
I used to be a "Christmas person".  Not so much anymore.  We'll be pretty much alone on Christmas.  I know it's probably better that way .. I'm not even sure how much of it being Christmas season is even registering with DH.  But "crowds" seem to bother him (he gets more withdrawn and quiet).  He seems to enjoy when we have visitors a few at a time, particularly family.
But since I had so little help with decorating this year (and isn't it odd how the more help I've needed the less I've gotten from the people who professed to "understand" and care so much!),  can't really see what I do have very well, and can't do the shopping or baking or sewing I've done in the past ..just seems like a lot of the joy has been sucked out of me this year.

Day 206

Day 206
Tuesday December 17, 2013
Physical:
It is weird - and sometimes disconcerting - how DH can *seem* to be alert and lucid; and then he will say something so very odd that one has to do a double-take, and have no clue how to respond!  Even the hospice people are more aware than ever.  It's really terrifying that his mental condition is deteriorating so much faster than the physical.
Monday night we had a very near calamity, because he can't accept that his legs won't support him.  He can't sit upp without support either .. and it's strange that at the same time he has a lot of strength in his hands.  When I had to try to get him from wheelchair to commode, we nearly missed, because he *thought* he was moving - but wasn't.He came very near to going on the floor; and it was a major struggle for me to keep him from falling.  I told him I will NOT do that any more - at night, when he's so tired, he will have to settle for wheelchair to bed only.
For the last few days he's thought he was at the aquarium, with a few times in the car.  
His appetite, at least, is OK as long as he gets something he really likes or wants.  With my difficulty cooking, that's getting complicated.
People:
The CNA comes daily (but not today).  Since the clinic appointment was changed to today, the nurse came yesterday.  I told her about the weekend, especially the one really bad night.  She is getting me something to help!!  She was trying to tell me about something in the "care kit", but I keep telling her I cannnot read the labels.  So she ordered a gel I can use when I need to calm him down.  
Nothing more was said about respite care of course; supposedly the social worker is following up on that.  But, again, it's been over 3 weeks and no word from her.  Plus, I got a call Monday afternoon that they had found me a volunteer.  She was supposed to call either that night or yesterday.  Naturally that didn't happen (though to be fair, a lot of times the phone line here just doesn't work - people frequently say they called and either got no answer or a busy signal, when no one here was using the phone).  
My sister came by, but a planned activity got aborted due to a combination of miscommunication and illness.  Hopefully another chance will work out.  DSS came by later in the evening (to get yet more $$ for car repairs - I am literally sick to my stomach at how much it has cost over the last few weeks to get the car running - but I have to have it.  I hope there's not another time, because the well has run dry!)
Emotions:
Lately I've not been sleeping well because I'm so afraid of DH waking up and another struggle to get him to calm down and go to sleep; and then I have a hard time getting back to sleep.  So, I stay tired and anxious.  I desperately hope the gel (that should come today) will help!  I never got all my decorating done (going by past year standards), but it will have to do.  I can't see much of it anyway; and most of the people who come say it looks fine.  I'm bitterly disappointed about not having anything in the yard (and it still annoys me for peopple to say "it doesn't matter" because it DOES matter to me!).  It seems we're having more visitors over the holiday season, which DH and I both enjoy.  I'm afraid January is going to be a major let down, but I have to get through the holidays before I worry about that.
I hope DH has a different doctor at clinic today.  Most likely he will, because it's a whole bunch of them that rotate.  The last one hinted at adding a daytime dialysis exchange.  I know I come across sounding hateful and selfish; but that's just not going to happen.  I really don't think I can handle adding something else; and that might completely cancel any faint hope of respite care.  So if they still hint that the dialysis is no longer as effective as they want (and odd how they are refusing to see the "whole picture"), perhaps we can add an exchange and make the dwell times longer for the overnight program.  The only time that would be a problem (assuming the gel works for keeping him calmed down on the days he demands to get up early) are the days that they want him into clinic too early.  If necessary, that one day I can cut off the cycler early if I need to.

Once again, I got distracted before I could finish a thought.  Now the day must begin.

Day 205

Day 205
(Sunday and) Monday December 16, 2013
Physical:
Saturday night/Sunday morning was a bad night.  But Sunday was a relatively calm day.  DH ended up being up a very long time (due to insisting on getting up so early).  Sunday night he woke up after only 3 hours, and it was very difficult to get him to go back to sleep; but once he did, he slept all night.  He did, however, again insist on getting up early.  He had only been uup about an hour when the CNA got here, and then he slept until mid afternoon.
This morning he was "at the aquarium"; but by afternoon he had sort of accepted that he was at home.  He's been very calm this afternoon, so I hope for a good night!
People:
On Sunday the kids were here as usual, but the day was different.  TGF had to take her oldest to the next town over for a date, and the smaller ones were to go to a Christmas party.  We got shopping done, but there was no time for any other projects (like reading mail).  Today the CNA came earlier than usual, and the rest of the day was quiet.  I made a call and was waiting for a reply, which did not happen - very annoying.
Emotions:
Well, I had the silly idea that I had a small slice of time I could sit here and write.  DH was in a weird place.  I couldn't figure out how to work the lift chair .. turns out he wanted to watch what I'm watching because "Big Bang" was a rerun (they all are!!).  So I changed his channel .. but he wanted me to stay in there.  But then it was time to get him to bed.  And things went downhill from there. No details needed; but I have to find some way to get him to grasp the fact that in the evening he is too tired for anything but straight from wheelchair to bed.  If he doesn't like it, too bad.  I can't deal any more.  Even the nurse and CNA aren't supposed to try to lift him because he's too heavy and too unstable.  
Right now I'm too tired to even think, much less write.  

Day 203

Day 203
Saturday December 14, 2013
Technically, it's Sunday morning.  We're having a bad morning.  A really BAD morning.  I wonder if he's gone completely "around the bend".  Up to now I've been able to either talk him out of whatever fantasy he's in, or calm him down enough to get back to sleep.  Not today.  He's convinced he's in a car (and has been since long before daylight 0 meaning, once again, not nearly enough sleep).  He dumped the water out of his cup and "threw it in the backseat".   He just told me he thinks his "stuff" (gun cabinets, bookshelf, etc) is out on the street, that I put it out there for trash pickup "just for spite".    So now I've turned into the bad guy .. because I won't get him his clothes (in the washer!!) and help him get into the driver's seat.  Absollutely nothing will convince him otherwise, and he refuses to even try to go back to sleep.  
It's times like this I feel so very deserted.  Not by family and friends.  But the * professionals* who are supposedly taking care of him .. bottom line, they think he should be in a facility.  But no facility will continue his dialysis; or at the very least - so far as I know yet - they'd insist on putting him back on hemo, blatently against his wishes.  They always tell me "call if you need anything".  But they don't actually mean it.  While they maintain that he absolutely does belong in hospice, and since his lung issue is non-treatable and will continue to get worse, he is in no danger of becoming qnqualified for hospice; but they aren't "treating" him for dementia.  And that's what is the absolutely worst. Technically there is something in the "care kit" they provide.  But I've told them and TOLD them that I can neither read the labels nor draw anything into a syringe ... so the kit is useless as far as I'm concerned.  And in any case, I seriously doubt he'd let me give him anything right now (they say there's something in the kit to "calm" a person if needed).  The CNAs drift in and out, are very nice and do their job well.  The nurse comes once a week, checks his vital signs, gives him an epogen shot, then chats with me.  Whatever I tell her, she says "it's to be expected" and asks what I'm going to do.  What??  I have a choice???  I don't think so. :(  She asks if I've talked to "the family" (meaning the boys and their wives) .. well, no, because it's not a discussion they are interested in having with me.  The social worker and the chaplain said they'd be coming by "every 2 to 3 weeks".  Well, that's not happening either.  It's not that they really *do* anything; but if nothing else, it's someone to have a conversation with.   But with the social worker, it seems like it's more once a month.  The chaplain said he'd be back (last week now) after his aborted visit, but that didn't happen.I know they've got lots of other patients, and probably most of them way sicker than DH is.  They've often said about having just lost a patient.  That's the business they're in - they always loose their patients eventually.  I don't know if they have any others who are as completely alone with caretaking as I am; but I do know many of them have multiple family members either living in the home or rotating responsibilities.
That doesn't apply here.  There isn't anyone else to do anything.  The one family comes as often as they can; but DH tends to just sit and stare at the TV, and doesn't join in any ocnversation.  The ones that live close enough to come more often only do so when I make it worth their while; and for the most part, that's only one afternoon a week.  And even then I often have to settle for whatever bit of time they can spare because there are other plans for Sunday afternoon. It's quite frustrating trying to remember all the things I need help with and then trying to hustle them together to deal with in a tiny sliver of tme.
And "friends"?  Forget it.  The one friend I*thought* I could count on most, has completely deserted me.  It seems like the more helpless I feel - between caring for and dealing with DH and my failing vision - the less help I get.

It is now nearly 8:00 AM.  After close to 2 hours of struggle, he finally got tired enough to lay down and pull the covers back over him.  He still believes he's in a car though.  But he's quieting down (I think), and if he can just lay quietly a few minutes he'll probably go back to sleep for a few hours.
One bright sot for me is DS and family.  They came yesterday (note: it's a 2 hour drive for them!) to bring fruit bought from the school band fundraiser.  I do that most years, but give away most of the fruit - way too much for DH and I to eat before it spoils.  Anyway, DS took me to the grocery store (in pouring rain!)  to get part of my list so that I won't have as much to get today when TGF takes me - since she has something else to do that cuts my time short.  Also, my DIL got 4 audible books (brand new releases by some of my favorite authors, plus a classic old one) loaded onto my Kindle, so I once again can have "reading" (listening) time.Even better, I recently had a "trial" of Audible, and got credits .. so my books were all free!  That's a blessing, considering the car is about to wipe me out. :(

I wonder if having company into the evening over stimulates DH?  He was actually so tired he was ready to go to bed by 7:30; but by 11:00 he was awake.  I did manage to get him settled back down fairly quickly then .. but it was a short night.  Now he's soundly asleep - and I'm wide awake and headachy again.

Day 202

Day 202
Friday December 13, 2013
Physical:
DH rarely sleeps "well" at night any more due to coughing and wheezing.  I have raised the head of the bed as much as he'll tolerate, because he seems to do it less when he slees in the recliner.  But other than that, the last 2 nights he did OK - at least no waking up determined to get out of *the shower* or *the car* or whatever strange place he thought he was.  As usual, he pretty much eats what I put in front of him; but if I give him too much, he just doesn't eat it.  
He continues to seem to have trouble taking his pills; but that also is worse when he's laying down, or even just sleepy.  He holds them in his mouth instead of swallowing; sometimes he tries to chew them.  When he finally does swallow them (with or sometimes without water) he sounds like he's strangling.  I hate to have to sit the bed up for those pills, but I think it will soon come to that.
People:
The dialysis nurse came, early in the morning.  I found out about the change in appointment (seems like I said this yesterday .. a lot of mornings it's late before I can write, and I tend to overlap morning stuff!)  The CNA came in the early afternoon.  She was a sub (regular lady had a vacation day) - a tiny person, so I had to get DH u and down.  Which, of course, I'm used to doing.
TGF stoppped by in the afternoon for me to give her some $$ (to pay back for lunch Wednesday, since it was my idea).  It always has to be worth her while to take the time to do anything for us.
Emotions:
I felt very depressed and weey after TGF left.  She was complaining about how busy her Saturday would be ... she *had* to go shopping in the morning because her church was buying Christmas gifts for her children (and this is over and above the tablets she put on layaway); then she *had* to take one to one sport and the other to another sport; then she *had* to go to a Christmas party.  Oh gee, how will she find time to clean house?  Oh, I know.  She'll just have to cut short the time they spend here on Sunday.  She knows I have a longer than usual list since it's been 2 weeks (plus I really want to *try* to do some baking if I can ever get anyone to help me at least print some recipes large enough); so that means there won't be time to cook, so *I* will have to provide takeout.  Again.  (the deal is I buy food for Sunday dinner, she cooks, with enough left overs for each of us.  If there's no time to cook, I still get to buy food.)  
I know, I'm starting to sound nasty.  I do appreciate that they try to help.  I don't appreciate that their help always has a price tag.
I have gotten a lot of decorating done.  I'm trying not to be discouraged about what I didn't get done .. but it's hard when I can't do what I wanted.  The outside of my house looks trashy and neglected.  I haven't even been able to get the Halloween decorations back to the barn (every time there's been someone here to watch DH long enough for me to do things outside, it's been either way too cold or raining).  I can only go through my Christmas boxes upstairs in the afternoon, because otherwise there's not enough light for me to see what I'm looking for.  There are several things I haven't found yet; and while I know perfectly well it doesn't matter to anyone else, it matters to ME.  It's very demeaning when people insist on telling me that the things that matter to me just aren't important.
I spend so much time here alone, that it becomes frustrating when visits overlap.  I'm greedy.  I want to stretch them out.  Then things change, and I'm trying to figure out what's going to happen when.
Today at least DS and family are coming.  It will end up being a very short visit.  They're not coming until early afternoon; but will have to head home before dark due to - again - rain.  If there's time - and before the rain gets here - I hope to at least make a run to the grocery store so I can shorten tomorrow's list.  It's just wait and see for now.
So I guess I need to get this day started.

Day 201

Day 201
(Wednesday and) Thursday December 12, 2013
Physical:
DH seems to be going through an odd sleep/wake cycle these last few days.  On Wednesday he was content to stay in bed, through the nurse visit, and until the CNA got here.  He then slept  about half of the afternoon.  On Thursday he woke me up at 3:00 AM (thought he was going to take a shower), at 3:30 AM (wanted to get out of the tub to go to bed), 5:00 AM (thought it was time to go home), at 6:30 AM (don't remember why; I was already awake anyway).  At 9:30 AM I gave up and got him up.  And of course that was a day the CNA came early; and after bath he elected to stay in bed.  He wanted up again around 3:00.  By 8:30 when I took him back to go to bed, he could hardly hold his head up; but he still fretted a bit and took awhile to get to sleep.
Although he coughed a lot, he did sleep all night.  
He has no particular appetite, but will eat if it's something he especially likes.  I'm still cautious about what he eats late at night.  On Thursday I made him a turkey sandwich, but he fell asleep and forgot it!  I heated it back up later, and he ate it.  But then he ate 2 bowls (shallow bowl) full of chicken & pastry.  That did not seem to bother his sleep at least.
People:
The nurse came on Wednesday as usual.  She noticed how "off the wall" he was talking of course.  He was not agitated or anything, but totally in his own little world.    She told me that the social worker is looking into a possible hospice respite facility that can handle the PD.  I refuse to get my hopes u, as I've been disappointed too many times.  And even if it would happen to work out, I wouldn't want to go anywhere before January at this point.  Well, unless just a small chance to see lights!  She also wants me to try to contact his doctor, who has been totally unresponsive.  I need to get her permission to switch his care to the hospice doctor.
The CNA came both days; Thursday she was unusually early (ironic since that's the day he got up so early).
Wednesday afternoon TGF came over for awhile.  She brought Subway sandwiches (yum!), and helped me with several things (mail, timers, pills).
On Thursday evening DH's sister and brother-in-law came over.  They didn't stay very long; but they brought food.  She had made the chicken & astry (it is SO good!), also brought otatoes, green beans, and some cake.  They brought the "toy" ppoodle .. and Maggie did not get upset.  Hmmm .. maybe I can get a tiny dog!  She picked out a stack of books to take (yay, another shelf cleared off).  She also said she'd come by one day next week.  I hope she does .. I'd really like to do some baking.
Emotions:
Much as I love my house, winter is a bummer.  The only heat in the back end of the house is one gas wall heater .. and it gives me a headache.  Between that and my eyes, I feel tired and headachy nearly all the time.  It makes me more short tempered with DH than I should be.  I KNOW what's going on is not his fault; but when I'm so cranky, I'm just not as patient as I need to be.  I hate to admit to what a terrible person I am, but that's how it is. :(
Sometimes when the nurse comes, I wonder if he'll even make it to next week (she's always telling me  to expect him to continue to "slow down", that this or that is a normal sign of his body shutting down.  But then she leaves, and he starts this wanting to get up and down so much .. and I visualize years and years stretching out of day after lonely day just like most are.  This time of year it's actually a little better .. because people seem to visit more around holidays.  I sure dread winter coming u!
**
I got interrupted when the dialysis nurse got here and lost my train of thought.  He told me he had to change the next clinic appointment, which didn't surprise me.  Now I have to figure out which date to go ... I'm thinking it will be better to go on next week and not worry about it over the holidays.  That might change a lot of things.

Day 199

Day 199
Tuesday, Decembeer 10, 2013
Physical:
I can't tell if we're entering a new "phase" or if we just circle around the same things.  For the last 2 days DH has spent far more time sleeping than anything else.  But when awake, he's back to thinking I'm his mother, and he keeps fretting about letting his wife know where he is.  Eliminating a heavy meal at night, especially beef, *seems* to have solved the problem of waking up at 3:00 or 4:00; but this morning he woke up close to 6:00.  He was convinced he was in a car on a railroad track; it took close to an hour to get him to settle down and go back to slee.
He eats what I put in front of him, as long as it's not too much.  He seems to be able to snack all day; so I need to figure out a way to offer him small meals more often.  If I just ask, he usually says he's not hungry; but sometimes I can hear his stumach rumbling ... and it makes me wonder if he's losing the ability to realize when he's hungry or not.    He's clearly on the way to lbecoming incontinent, though not there yet.
People:
The CNA came.  I enjoy chatting with her.  Many days she's the only person I see other than DH (who doesn't know who I am at times, or where he is, so a bit hard to carry on a conversation).
Emotions:
At the moment, frustration.  I had meant to get up a little early and get some things done.  Well, I didn't sleep well (for no particular reason, except I might have been not *quite* warm enough); and then he started with the car stuff around 6:00.  That shot down my whole schedule. He has finally gone back to sleep, so I have to see what I can do to play catch up.  This *could* be a busy day, which is good for me.  The nurse comes on Wednesday (but I never have any idea what time); the CNA comes daily.  TGF is supposed to come by this afternoon to help me sort mail and reset timers (but she has to go by social services this morning .. and I've never heard of that taking *only* an hour ... so I won't be overly surprised if she runs out of time to get here).  The chaplain said he'd come back by this week since his last visit got cut short, though I have no idea what day.    I spend so very many hours "alone", that keeping busy is necessary to help ward off depression.  A day that starts off like this makes it really hard!  I really just want to go back to sleep, but that's just not an option.

Day 198

Day 198
Monday December 9, 2013
Physical:
This was a bit of an odd day.  It started out very early with DH demanding to be "let out" of bed to use the bathroom.  I won't bother with details; but it was an hour and a half before he was settled back in bed ... and I could finally get some coffee!  He didn't wake up again until close to noon, just about the time the CNA got here.  She got him up .. and before she had even left, he was reclined in his chair and back to sleep!  He didn't wake up until nearly 5:00.  He only ate 2 chicken wings and a piece of peanut butter candy all day (he did drink his protein drink and take the pills before he fell asleep in his chair).  By 8:00 he was ready to go back to bed.  He only woke once during the night, around 2:00.  He thought it was time to go home; but once I told him it was 2:00 AM and raining, he was content to stay where he was and go back to sleep.  
People:
The CNA came, of course.  The supply delivery came around mid afternoon (DH slept through most of that too).
Emotions:
I still feel depressed and grumpy.  I really don't know how much of it is reaction to DH and how much is the never-ending gray or rainy weather.   And I know that myself and the weatherman are the only ones who think this way .. but ... I feel a little "cheated".  Major storms crossed the country, and places within a day's drive are getting more snow than they've seen in years.  We just get cold rain. I could See snow (well, if we got enough I could).    
Despite the cold wet gray day, I know I need to get busy *doing*.  It's the only way I can combat the negative emotions. That and take a nap.  Not because I'm tired, but because my eyes get to burning and I have no choice but close them awhile.

Day 197

Day 197
Sunday December 8, 2013

I don't usually write in the evening, but it's early .. and been a very odd sort of day.  It's been gray and cold and wet, so a good day to keep the doors shut and the lights on. DH slept "in", until late morning.  And then he insisted on getting up to sit on the commode.  So that was an hour to deal with everything.  Including changing the sheets!  Then he was tired and just went on back to bed, and slept for about 4 more hours.  He woke up with, again, insisting on getting up .. he actually managed to get one end of the rail undone.  That scares me!  So anyway, another 45 minutes or so .. and for nothing.  But since then he's settled down.
Most of the day he thought I was his mother.  I thought after I had come and gone a few times he'd revert back, but never did.  
He didn't eat anything until after 300.  But he took all his pills, ate a ham sandwich and a cookie for lunch; and a turkey sandwich and a few pieces of peanut butter candy in the evening.
I messed up the TV.  Again.  I am SO frustrated.  I was trying to move his bed tray (so he can have water within reach).  But, as always, the wheels got hung up with too many cords.  The receiver box fell off the shelf.  Even though I can't find anything unplugged or any loose cords, I can't make the Dish signal come in.  I am so fed up with having these kinds of stupid problems!
I took a long nap this afternoon; I guess I needed it.  Since then I've done dishes, laundry, and moved furniture around.  
Unfortunately (and what got me started on the moving stuff), one of the kittens got in the dining room window.  I got the window sealed up (cut out a LOT of the cold air coming in), but can't get the kitten out. :(  
I also got the rest of the lights to come on for the big tree in the den.  Now I can sit there at night and enjoy the lights!  

I sure hope tomorrow I wake up rested and ready to accomplish something; and that he wakes up at home!

Day 196

Day 196
(Friday and) Saturday December 7, 2013
Physical:
Friday was a quiet day for DH; he stayed in bed all day.  Partly because he didn't feel like "bothering"; but also because I couldn't get the remote in the living room to work, so he just watched his TV in his room.   He asked to have his hair washed, but the CNA can only use a chemical "dry" wash.  I don't much like the way it makes his hair feel .. but we'll have to wait for a warmer day to attempt a regular shampoo.  On Saturday he got up early, and stayed up until around dark.  He was still awake after 11:00 though.  I was told he ate pretty good, though a lot was snackis and treats.  
People: 
On Friday the CNA came as usual.  A friend came by and helped me with some decorating.  On Saturday DSS spent the whole day here with DH.  I spent the day with DS and DIL and grands 2 hours away.  TGF was here from mid afternoon until we got home.  I think it was a bit of an eye-opening experience for DSS to see what I deal with daily. When they brought me home .. 10:30ish I think .. everyone stayed and visited a bit.  That was actually very nice (at Thanksgiving the families were divided because of the space).
Emotions:
Getting Christmas decorations up helped my mood a lot.  I still have more to do, but I'm less worried about it now.  I don't even care if trees get decorated (although I think a lot of the grands plan to tackle that next weekend).  I got extremely frustrated with DH this morning.  But I had a good "day off", and I'm really trying to be more patient.
It's a very very cold gray wet day, and that makes it hard for me to accomplish much.  I have laundry to do; but thankfully tI did not come home to a big mess last night.  I may move furniture today .. that should make me tired enough to not get moody in this weather!

Day 194

Day 194
Thursday December 5, 2013
I believe I got my days mixed up yet again.  I don't think the actual number matters all that much since I started dating each entry anyway.
I think yesterday's entry got a bit jumbled .. that happpens when I'm too tired and get interruptions!
Physical:
Thursday was a bit of a better day.  Well, mostly.  I went to get DH up .. because he kept stirring around and fretting.  But then he didn't want to get up.  He ended up staying in bed until the CNA came.  Once he was up, he seemed OK, only minorly confused; and he was alert in between naps.
I changed the meals regimen a bit.  I gave him a pot pie around 4:00, and then a ham sandwich around 7:30.  I don't know if my theory was right or not; but once he finally went to slee, he did sleep through the night (other than the coughing).  About 11:00 (PM) he insisted on getting up to use the commode.  I was NOT happy .. could barely hold my eyes open at the time.  And then he did Nothing!
People:
A substitute CNA came, a lady we've had before and she's very nice.  We ended up having a long conversation.  The chaplain came.  I'm always delighted to see him .. he's one of those kind people who just make me feel comforted.  Unfortunately, timing was not great.  We did chat some, but then the CNA got there.  He went in to see DH before the CNA got started with the bath.  But then he got a page, so the visit was shortened.  That was disappointing, but it happens.  He did say he'd come back next week.
Emotions:
I've said before, emotions expressed when I'm tired are not "true" feelings, as they are colored by exhaustion and not to be trusted. I did get a better night's sleep, once I finally got to settle down.  I don't ever sleep soundly, as I'm very aware when he gets a coughing spell.  But if I don't have to wake up enough to get up, I am usually able to go back to sleep.  I did not want to get up, but it wasn't as hard as yesterday!
I have been able to make a bit of a start on Christmas decorating.  But the outside looks quite horrible.  The black cat from Halloween is still on the porch (under the glider).  An old worn out "bookcase" (that was actually the top plart of a china hutch that someone threw away years ago) is on the porch waiting to get to the burn pile - along with, again, many weeks worth of cardboard tht they refuse to put into the truck with the trash (but then, they keep ignoring part of the trash even when very specifically reminded).  I thinkTGF wanted it .. but they think I should just leave things in the house until it suits them to take them away.  I am NOT a warehouose, and I'm tired of doing that.  (frankly, I'm sick to death of the whole attitude that I shouldn't have or do anything that they can't have or do .. I think after having done the best I could to riase my son, partially raise DSS, have both of them along with wife and 2 kids (NOT at the same time!) live with us for several years, I've earned the right to try to have my home the way I want it.
I *might* have some help today (no idea with what .. decorating, books, yard, or what?) .. but I've been let down so many times that I won't count on it until it happens.  Also,  I still *might* get to go to the parade tomorrow.  At one point it was looking like the parade might get rained out, or at least the band not be able to be in it.  But it's sounding more like the rain will be earlier in the day (parade is not until 3:00) .. so waiting to see how things go.  I SO need that day off!!

Day 194\3

Day 194
Wednesday, December 4, 2013
Physical:
I don't know if we're entering a new phase, or if the past few "quiet" weeks were just a fluke.  DH is not sleeping well the last few nights, is restless, and is becoming more adamant about what he believes is going on; and argumentative.  I have not been able to "sooth" him into going back to sleep without a huge amount of stress.  Last night (Wednesday night)  was particularly bad.  To start with, he resisted going to bed until close to 9:00.  When I tried to move him from his chair to the wheelchair, he just went completely limp.  In the end, he just "sat" .. and there was no way I could lift him.  I tried to get him back down in the chair, but I couldn't hold him and reach the control; so he slid down to the foot rest .. which couldn't hold him, so he ended up tipping the chair over (not no top of him) and slid to the floor.  I had no choice but call DSS to help get him up.
That made it after 10:00 before getting him settled in bed.  By 1`2:45 he was awake again, flippping the covers and trying to get out of the bed.  I got him calmed down; but around 3:30 he started again.  He was convinced there was a mortuary upstairs and he was NOT going to stay here.  It took nearly an hour to persuade him there is no mortuary and no up or down stairs.  And then he suddenly told me he didn't want to get up (as if I'd been trying to get him up!).  He did finally go back to sleep, but was restless the rest of the night.

I got interrupted and completely lost my train of thought.  The phone rang several times (non important calls).  DH couldn't make up his mind if he wanted to get up or not.  The chaplain came by, which is always a welcome visit even if short.  A substitute CNA came, very nice lady.
The nurse was here yesterday, chatted with her.
I'm too sleep-deprived to trust whatever feelings I have right now.  Hopefully I can sneak in an afternoon nap!

Another note: on Tuesday I made a pot roast in the crock pot.  DH ate that the last 2 nights.  I wonder if there's any relation between his "bad" nights and a heavier meal?  I think he'll have something light tonight, and see if it makes a difference.  If it seems to .. much as he loves beef .. I'm thinking it's going to have to be much more restricted, and only for lunch instead of at night.
Then again, maybe I'm just grasping at straws.