Day 252

Day 252

Thursday, January 30 2014

Physical:

As usual, I shouldn’t try to *guess* what will happen from one day to the next.  On Thursday DH was determined to get out of bed fairly early in the morning.  I put him off to mid morning (because the longer he is up, the greater the chance he’s going to be over tired and need a nap.  I’m trying not to be mean .. but the fact is, it’s getting harder and harder to move him, and I have to limit how many times that happens).  Once up, he stayed up until about 8:30 (extra episode of “Big Bang” on Thursdays).  At one point in the afternoon he stated he was going to “get up and walk to the bathroom”.  Fortunately, he was in the reclined position and had forgotten about the control button.  He asked me to “help him sit up” .. which clued me to what was going on.  I persuaded him he didn’t need to get up just then, but it was difficult.   I carefully explained to him that even though his mind says he can walk, the message doesn’t go to his legs and if he tries to stand up he’ll fall.  He said OK, he understiid wgat I was saying.  And that he was only going to walk to the bathroom. L

He ate about “normal” I guess.  A sandwich for lunch.  I made oven fried chicken for supper.  I had a package of “drumettes” instead of full wings .. and he loved that.  I only got a smaller pack this time, and he ate all of them.

He slept well, though has been doing a lot of coughing this morning (Friday). 

People:

The nurse called to check on us; that was it.  It was a rather long day, without talking to or seeing anyone at all.  Kind like most Saturdays.

Emotions:

I’m doing a lot better at keeping myself “under control”.  I guess I had to go through a period of adjustment; and on top of that, holidays are always an emotional time.

Things are sort of leveling out; and also I have something very positive to look forward to (2 weeks from today).  I’m still tired most of the time; but as long as DH has better nights, so do I; and that helps.  I’ve settled into a little bit of a routine ..  by the time I get DH in bed and has had all his pills, I can barely stay awake.  If he has a good night, I can get 4 to 6 hours; but then I’m awake.  As long as it’s not before 5:00, I have adjusted … I get on up, and have a couple of hours of good energy to get stuff done.  That’s when nearly all of the Christmas packing up has gotten done.  I quit fighting it, and give in to an afternoon nap (although once in awhile, to my surprise, I don’t actually sleep .. but it’s still a period of rest).

I’m not saying I don’t get depressed or discouraged still.  I get very weepy spells.  The silliest things can set me off on a crying jag.  And sometimes pure exhaustion can make simple things become huge obstacles.

I think lately I’ve been a little complacent.  DH has not had any episodes of extreme agitation (instating he was in a car, etc.).  And I’ve gotten better at dealing with it when he goes there.  Even on the days he doesn’t want to stay in bed all day, he’s sleeping more and more of the time.  And when he’s awake, he’s 150% convinced that whatever  he thinks he’s done or been is absolutely real.  (example: when I was explaining about his legs not working, he very indignantly replied that just “yesterday” he had gone upstairs and made his bed.  What an odd thing to say – he’s NEVER made the bed!)  On one hand it’s like things are going along fairly calmly and I’m dealing well enough (other than the getting up and down stuff).  But at the same time .. I’m waiting for the “other shoe to drop”.

My yard is still covered with snow.  Because of the orientation of my house, the sun doesn’t get to the porch and driveway so it’s going to take a lot longer for that to clear.  Schools are out again, for the 4^th day; back roads are still icy and dangerous.  It looks like our road is fairly clear.  As far as I know, the nurse is planning to try to get here today.    The CAN is coming, but not until in the afternoon.  So, it’s a wait and see what happens sort of day.

Day 251

Day 251

Wednesday, January 29 2014

Physical:

As I thought might happen, DH got to the point he was tired of laying in bed.  It takes longer and longer stretches (days) for him to get there; I wonder if it’s a matter of moments of clarity (relatively anyway) and he is still fighting against giving in to his frailty.  Then again, I could not get his mind to let go of the idea he had to go to work!  Even once he was dressed and in the living room .. he made the comment that he hadn’t realized that home was so close to the A&P warehouse! 

I couldn’t get him to eat, even with snack junk; and he only ate one bowl of soup.

He insisted all day that he didn’t sleep well the night before, but I don’t think he can tell the difference any more.  He slept well all last night, and has not had a very early morning wake up yesterday or so far (6:00 AM) today.

People:

The world outside our door is totally beautiful, pristine and white .. and treacherous.  The nurse and the CAN both called to check on us; and I had a long conversation with TGF.  But other than that, it was totally quiet here.  It was also kind of boring, because weather reporting pre-empted ALL morning TV.  DH “watched” it (I believe sometimes he just stares mindlessly at the TV – he wasn’t sleeping).  In the afternoon he switched over to the history channel.

Emotions:

At one point he got annoyed with me.  He said he was going to get up and go to the bathroom.  I told him he most certainly was not.  I explained (and yes, I know, it’s an exercise in frustration) again that regardless of what his mind is telling him, the message isn’t getting to his legs and he can’t just “get up”.  And further more, it’s become more and more difficult for me to get him up and down.  So bed to wheelchair, then to lift chair .. and all that in reverse .. is all I’m going to even try to do any more.  No matter how mad he gets, I refuse to risk hurting him or myself with extra lifting.  He’s not at all happy with being told “just go when you must and you’ll be cleaned up”.  But eventually, that’s what will happen; and more and more  he can’t tell what, if anything, he really needs to do.

I did get in a short nap; and I’m pleased with myself that I did limit it.  It felt so good to just sit back with my eyes closed, a nice warm blanket, and a cat in my lap.  But, I got up and spent a bit over an hour getting a lot of progress made on packing up Christmas and getting the upstairs room (not really an “attic”, but that’s how it’s being used) organized.

My weekend off is 2 weeks from tomorrow.  I have a list of things to get done by then to keep busy as well as to have the house presentable for the kids. 

Something I have been pondering lately, and wonder if there’s anything to my thoughts or just mere “coincidence”.  For the last few years, DH has had multiple visits to the hospital, usually for infections of various sorts.  The last time was early March of last year.  As best I can remember, he’s only had one doctor appointment (at Duke) since then, last spring.  He was still going to dialysis clinic weekly, but fairly limited exposure to other people.  In early July he was admitted to hospice, and that ended all doctor appointments.  After a few months, he also no longer has weekly clinic visits either, but just once a month.  So, my point is, he’s not had any infection or illness other than an ordinary mild cold in this year.  Is there a relation between no sickness and much less exposure to the public (and even to going outside)?  It’s not like we’ve eveer had any choices about it, but I still wonder.

We have a record matching low temp this morning; but with no wind, the house ranges from comfortable to tolerable (as opposed to yesterday, barely tolerable to downright cold).

Sometimes I get depressed about all the things I think I need to get done, and feel too tired to do them.  Some of my problem is simple procrastination; and sometimes I am genuinely too tired to tackle rojects.  But I have come to realize that there’s another aspect to this.  I get an idea in my head about something I want to do … and I have a really hard time making myself work on other things first.   Most of the time the “other things” need to be done first; and occasionally I just try to push myself to do things I don’t want to do before I “allow” myself to do something I really wanted to get done.

When I’ve had a decent night’s sleep (got 5 hours, woke around 3:00, back to sleep again until just before 5:00 – so woke up actually feeling awake and rested), I try to go on and tackle more labor intensive projects.  I tend to avoid “noisy” things .. but really almost nothing wakes DH up.  So, this morning – before daylight – I took another 4’ tree upstairs, and a small table, and rearranged a few pieces of furniture.  My goal was to get one small bookshelf to be not so close to the kitchen door because I keep bumping it (even though I know it’s there).   I did succeed, and believe I will be happy with this arrangement.  Of course, now I want to get out a bunch of framed photos; but I WILL resist doing that until the rest of Christmas is packed away.  I have 3 “large” (5’) trees and 3 “small” (4’) trees to go up, as well as 5 or 6 more boxes. My goal is to be completely done by Saturday .

Perhaps it sounds silly to some; but I think I will enjoy my weekend “off” a lot more if I’m content that my house is clean and organized, and will be comfortable for the kids staying here.

There will be no nurse or CAN again today, so I won’t be waiting for anyone or calls.  I have a hard time getting busy on something when I know I could be interrupted at any time.  I’ve actually made a lot of progress this morning, so I don’t feel “guilty” to stop awhile.  I have to get in the shower, take DH pills, feed cats .. and though I’ve washed dishes, I have more.  We had homemade soup the last 2 nights, but enough is enough.  I put the rest in bags (labeled!!!) in the freezer, and took out chicken to thaw.  Now I have to wash up the soup pot! 

One issue I still have to deal with is my eyes.  All but the one drop I use at bedtime have run out.  When we went to the pharmacy Sunday, they checked the computer (by “they” I mean the young man; I wish we’d been able to talk directly to the pharmacist) and said there were no refills due or ready.  But the next morning, drops ran out (no way to tell until I squeeze the bottle and nothing comes out but a bubble!).  I called the pharmacy, and this time talked to the pharmacist.  She said the drops had run out of authorization, and they have faxed the doctor to re-auth.  I tried to call the doctor’s office, but couldn’t get past a recording telling me to call later.  Then, of course, the weather crashed.  I will call the pharmacy today; but in the meantime, I’ve been 3 days (today makes 4) without them.  If everything is straight by Sunday, I’ll still have 12 more days until my next appointment.  I believe the red drops did help.  My vision hasn’t really improved much .. but my eys don’t burn and itch and water all the time, which is a great improvement!

I’ve worked hard already this morning, and I’ve babbled on a lot.  Not all of it has to do (not directly anyway) with DH … but I spend so much time alone, that the words just spill out.  I know there are a few people who read this (which always surprises me, because I’ve never promoted it; and I would think it would be pretty boring to most people) .. but even if no one read it, I still sometimes have to write out what’s on my mind.

The morning weather lady (and by the way, the ice desk is gorgeous!  I can’t see it well, but what I can see is impressive) said that the best way to celebrate record low temps is with cupcakes.  I wish I had cupcakes.  I wish someone would brave the weather and roads and bring me some cupcakes from one of those fancy shops that seem to be popping up these days.  Yeah, yeah, I know, NOT gonna happen! LOL!!  But nice to dream.

Time to quit dreaming and get this day in gear!

Day 250

Day 250
Tuesday, January 28 2014 
Physical: 
This was yet another stay-in-bed day; but this was mostly because it was the warmest place to be.  Usually DH’s room is quite chilly; but today (Tuesday) it stayed warm; plus he had his pile of blankets.  Since the rest of the house was tending to be chilly, he was mostly content to stay put.  Towards 6:00 or so he asked (demanded) that I take the rail off  Why?  He wanted to get up.  Why?  So he could take the food (a banana I took him that he didn’t eat) to the kitchen and make some sandwiches.  Yeah, right.  But when I said I’d go make him a sandwich, or better yet some hot homemade soup .. he said not yet.   It’s beginning to seem like maybe he actually can’t tell if he’s hungry or not.  He did later eat 2 bowls of the soup.  And he never got out of bed.
He was actually more awake than usual during most of the afternoon, and watched TV.  And he still slept reasonably well all night.
People:
The CAN came around mid day, and made sure we had enough supplies to last a few days.  TGF called to make sure we had plenty of water, in case the pipes or pump froze.    I’m a lot more concerned about them.  Even if they leave water running, so the pipes don’t freeze .. the water in the toilet bowls freezes!
Emotions:
I was antsy all day.  The forecast was for a major snowstorm.  It kept getting later and later, and nothing was happening.  Even though we are right smack in the area they originally said would get the highest snow totals, they kept changing it as the day went on.  It finally started here as sleet and icy rain .. and not until after dark.  I could hear it; but to my profound disappointment, I never could see anything – snow of slett – actually falling.  This morning the dining room (the only room with a good big window) is considerably brighter from all the white outside being reflected.  I can’t really tell, but it looks like we might have gotten 3 to 4 inches of snow on top of the sleet … which means we have a very icy mess here too.
The sun is supposed to come out later; if it does, I *might* get brave enough to put on boots, coat, hat, gloves, scarves, etc., etc. … and walk out to the mailbox!
Between watching for snow, and trying to keep warm in the house, plus not having to get DH up and down .. it was a less stressful day in some ways.  I did get bits and pieces done towards putting up Christmas and getting things back to “normal”.  Since I expect today will be a completely quiet day, and the sun should come out, I have high hopes of being busy enough to stop *thinking*.
I had a better night’s sleep than I expected.  I simply could not go in the den, where I usually sleep .. it was too cold.  So I settled into a not-quite-as-comfy chair in the living room.  I slept a lot better than I expected, though I’m sure being warm enough helped.  I was about 2 feet away from the heat exchange (or whatever it’s called, the big one with a filter that probably needs to be changed) … and it dried me out so much I couldn’t even swallow!  Plus the foot rest has a “gap””, so the back of my legs got cool; but there’s also a ridge that  so my legs were too numb to know they were cold!
It also helped that Mr. O put me to sleep!!!
In the last few days I’ve gotten emails from 3 friends .. 2 very old (silver) and 1 new one (gold).  I’ve long felt a little abandoned by those I used to correspond with (a year ago I had a penpal, and we wrote every single day.  Then one day she wrote that we no longer had anything in common, and she didn’t have time to continue the correspondence.  And that was that, I never heard another word from her).  I don’t always reply “promptly”, but I try to not be too slack either.  Talking to these lovely ladies .. each with a different set of memories or interests .. keeps me a little better focused.
I hope to be productive today.  I have a list of things I want to accomplish in my (16 days!!!) time until I get a break.  Keeping busy and with a goal in mind helps keep the blues away somewhat.  My one concern right now .. well, actually , 2 concerns … one is that the Monday I am planning on could turn out to be a school makeup day.  That would make it pretty clear that I’m being greedy and selfish to want so many days “off”.  The other is that the weather  - always “iffy” in February – could take a nasty turn and cancel the weekend altogether.  I know I have to just wait and see, and not “borrow” trouble. People tell me not to worry so much  My response is “why not? It’s what I do best!!”
I sit here in the early hours of the morning and babble on about whatever crosses my mind.  I try to remember anything significant from yesterday; but I never *quite* capture the feelings.  The stress, the concern, the sadness is always lurking in the “back of my mind”.  But I am getting better at finding things to keep the negative feelings at bay.  Having something to look forward to is helping a lot.  People who say they will call or come over, and then don’t, puts me back a step or two.  In the end, I can’t rely on most people and I’m on my own.  I do wish the people who can’t/won’t lend a hand wouldn’t be so quick to criticize.  But that’s just the way it is.  I also wish I could develop a “thicker skin”.  But if that hasn’t happened by now, it’s not likely to at all.
Funny side story:  I was so concerned about those kittens outside.  All day yesterday they – the little gray in particular – cried at the door to come in.  So last night I closed all the back hall doors, put some water in a bowl, and called them … and there was no sign of them!  This morning I tried again … they all came to the door; but wouldn’t come in!! LOL!!   So in the end I stuck a dish of food just outside the door.  Apparently they’re fine on their own, though I have no idea where or how they stay warm through the night.
The water did not freeze, so I’m going to go wash up a few dishes, get a 2nd cup of coffee and some breakfast, and answer some emails.  The dialysis should be finished in another hour, and I can take up the tubing and then get a nice hot shower.
Once I get all my morning chores out of the way, it’ll be time for the series of morning TV shows I watch.  I never used to do that; but I find myself turning on the TV just to hear voices .. and sort of get “hooked”.  By the time they’re over, it’ll probably be bright and sunny and about as warm in the house as it’s likely to get, so I’ll try to get a lot of progress made on packing Christmas and bringing the house back to “normal”.  Well, as “normal” as it ever is .. nearly time to decorate for Valentines! 

I was about to go on and post this; and it occurs to me, it comes out sounding like I’m ignoring DH a lot.  Not so.  But I’ll admit I encourage him to stay in bed, at least through the morning.  If he were to be upset or agitated about it, I certainly would get him up.  I also go in and check on him frequently.  We carry on some very odd conversations.  Yesterday he was fretting because he “lost the sunglasses lenses”.  This morning he’s fretting (but only a little) about not being able to move over enough to make room for me on the car seat.  How odd, how frequently he thinks he’s in a car.  I have no idea why that theme plays in his mind so much, but evidently it’s important to him.  I know that when he first had to give up driving it bothered him a lot.  He was told it was because of his heart condition, so he accepted it (he would have adamantly refused to quit driving if someone had said it was because his mind was starting to wander!!).  I guess now he’s happy again in that he can finally drive again.  Truthfully, it really is getting harder and harder to get him up and down.  He is less able to “help”, and isn’t even aware that he isn’t standing on his own, or mving when he needs to.  But regardless, I will continue to do so as best I can … I believe the nurse is right in that the day will come when he no longer gets out of bed at all (except when Medicare forces us to take him to the dialysis clinic).  And while he is spending more time in bed, I don’t think he’s really there yet.  He sits in his chair for shorter stretches of time most days when he is up.  He says his butt hurts and he wants to lay down.  That doesn’t actually make sense, because once in bed he never changes position.  He used to always sleep on his left side; now he’s not able to roll over.  It’s been at least a week, I think, since he’s been strong enough to toss the covers off and throw his legs over the rail in an attempt to get out of bed.  Yesterday when he told me to move the rail, in the end he didn’t put up any fuss when I refused (it was already way too late in the evening).  Theree have been fewer incidents of him getting extremely agitated over something.  That’s a good thing in a way; but it also tells me that the “spark” is getting dimmer.  More and more often (more so at night of course) he doesn’t know who I am.  And sometimes he gets so confused .. he seems to “know” who I am but at the same time refers to his wife as another person.
I guess, thinking about it, I am a little less stressed because he’s been less agitated.  But it is still hard to watch someone you love fade away and nothing you can do about it.

Day 249

Day 249

Monday, January 27 2014

Physical:

This was yet another *quiet* day.  Lately DH has been spending more and more time in bed – without insisting on getting up.  I don’t know if this is just temporary; or maybe related to cold (although the house really isn’t all that chilly most of the time). 

He woke off and on, but stayed in bed until he got his bath.  He was only up around 2 hours, and then called me to say he’d “had an accident”.  Now I really don’t know if there is a degree of progress about no longer trying to use the commode .. or is this just another step in the slowing down process (becoming more and more incontinent).  In any case, I got him cleaned up, but then he wanted to nap.  The bed wasn’t made, but I threw a blanket over him and let him sleep an hour or so.  I did get him up, but only to sit in the wheelchair while I got clean sheets on the bed.  Then he was content to get right back in the bed.

He did eat a slice of pizza for lunch, and 2 pot pies for supper.

He says he woke off and on all night; but I’m not sure if he actually knows the difference.  In any case, he slept quietly and still is.

People:

The old man who works for the landlord was here fairly early, and got the water heater fixed.  He also fixed the kitchen faucet.  The CAN came a bit later, closer to 1:00 (she has more patients on Mondays). 

Emotions:

Sometimes the best thing for me to combat stress is having a specific goal.  I’m at 17 days and counting towards the wonderful goal of a real rest break.  I spend more time making lists than actually accomplishing things; but even that activity takes my attention.

I have often said I don’t function well on cold and gray days; but today looks like it’s going to be a major exception.  Snow!!!  They are predicting a real snow storm … and I’m right in the area said to get the most.  Now it’s always possible something unpredictable will change and we won’t get the snow; but the talking heads are pretty sure (to the point of schools closing and brine trucks out) .. so we could get multiple inches of real snow!  (meaning not sleet or an icy mix).  It could begin here any time between noon and 4:00, so I *should* be able to actually see it!

I hear all the news reports about the horrible cold weather across the country – and I feel faintly guilty about thinking the 20s is too cold.  Then again … I would not choose to live in the north or mid west!!!

Some random man interviewed in Chicago said the wind was “disrespecting” his jacket .. that struck me funny.

I think I might be coming down with a bit of a cold.  Last night I was sneezy and stuffy and runny at the same time; and just felt exhausted and headachy.  But this morning not so much, so maybe it’s just a cumulative tired .. I’m always wearing down by evening.

I have a fairly long “to do” list for today.  I know I won’t finish everything on it; but I will try very hard to at least make significant progress.  I hope I don’t fizzle too quickly (woke up about 5:00).  I suspect DH will stay in bed most of the day (cold!) .. but then, he might surprise me.  Maybe he’ll want to get up and see the snow.  OK, I actually doubt that .. he does not love snow like I do!  And I admit, it’s easy for me to love it since I don’t have to go outside in it.  Then again .. I have boots and warm things to wear .. maybe I will. J

Day 248

Day 248

Sunday, January 26 2014

Physical:

For the 3^rd day in a row, DH was content to spend the majority of the day in bed.  He didn’t even want the TV on.  He told me he’d been at a flea market all night and was tired.  I got him up after getting home from shopping, and he watched TV for awhile.  He started watching a movie, and really wanted to see it all.  But by close to 10:00 he couldn’t hold out any more and was ready to go to bed.

He was wakeful, but not restless, in the early morning hours.  He didn’t know where he was or how he got there; I’m pretty sure he also didn’t know who I was then either.  Once again he wouldn’t eat much.  He took his pills with his nutrition drink, but went back to sleep and refused any lunch.  He ate one pot pie for supper, and didn’t even want another (usually he does). 

Eople:

DSS stayed with DH as usual.  He never got him out of bed, but did take him a glass of water.  TGF and I got grocery shopping done.  She fixed pot pies for everyone (they all love them too, and they were on sale.  I’m the “odd man out” who doesn’t care for them, but I had plenty of other options). 

The boys got all the trash out – didn’t forget anything this time.  In fact, I haven’t found anything at all left behind.  That is very strange!

Emotions:

Wow.  I’ve been through a lot (of emotions) this week.  It is easier on me physically when DH stays in bed .. but I worry a lot more.  I don’t know why .. is he just cold?  He keeps saying he has a cold, does he feel bad?  Is he really just “slowing down” that much?  He’s clearly getting weaker; but so much inactivity would make anyone weaker.  The nurse keeps saying his lungs sound clear .. but actually, no one is testing his lung function any more.  He sounds like he’s struggling to breathe a lot of the time, especially at night.

Yesterday I discovered a MAJOR mistake on my part.  I paniced .. this is completely unacceptable.  I know I’m over tired, and get distracted way too easily.  Still.  Apparently Saturday night I didn’t hit the “start” button on the dialysis machine.  On Sunday, I didn’t hurry to disconnect (other than close clamps) so I wouldn’t disturb DH since he was sleeping so much.  At noon I decided I had to wrap it up so I could finish bagging trash. 

Note: I cannot really “read” the writing on the screen on the machine.  But I can tell the different color bar across the top.  At the beginning of the process it’s blue, and I press “next” and it starts.  At the end there’s a blue bar, and I press “next” and get a beep and another blue bar screen.  I have to press “next” again, and get another beep, and then it begins a summary.  So, there was a blue bar, so I hit “next” expecting a beep.  Instead it went directly to a green bar .. and began the process!!!  So, he had no dialysis over night. 

Way back last spring a dialysis nurse told me tht if we stopped doing the dialysis he would probably only survive about 3 days.  That makes me panic over missing one night.  However, the current nurse indicated he thought that was a “low” estimate, that it would be longer (but not by more than a few days).  Nevertheless, missing a night is BAD.  I went on and let it start, thinking I’d just let it go until I got back from shopping, stop the process (he’d get about half the usual treatment, better than nothing).  But, on the 2^nd drain cyce (out of 6), the alarm went off.  And absolutely nothing I could do would make it continue the drain process.  I finally just turned it off.  Last night DSS did the heparin injections; but there wasn’t enough for but half the bags.  (I have requested more, but it hasn’t come yet).  In any case, it ran all night with no problem at all.   It’s probably got 3 to 3 ½ hours left to go; hopefully with no problems.

Last night I managed to stay awake for a large part of the gramy awards.  I watched the remaining Beatles perform, and felt nostalgically sad.  When did I get so old?  I did not enjoy the program for the most part; and parts of it I found extremely distasteful.  But I just *had* to see Ringo and Sir Paul.  They got old too and that made me sad.

I am having a hard time getting motivated to get this day going.  I had to push myself to go on and get up and dressed, because I have no idea what time the landlord will be here to fix the water heater.  Not at all likely this early – but who knows.  And I never know what time the CAN will come (and wonder if she’ll even be able to get here later in the week).  I haven’t head from the volunteer lady, from my SIL, or even from the social worker.   I really hate when people say they’re going to do something .. call, come over, whatever .. and then just don’t do what they say. 

I’ve been up about 3 hours.  DH is sleeping soundly and doesn’t get more pills for another hour and a half.  I think I need to try to take a quick nap!

Day 247

Day 247

Satursday, January 25 2014

Physical:

DH very nearly spent all day in bed again.  His room was very chilly, and instead of getting up he wanted extra covers.  I added a quilt to the 2 fleece blankets and 2 heavy cotton weave ones (one of those was doubled).  I would think all that would be heavy!!  I woke him up sometime after nooonish, so he could get his pills before so late in the day.  He watched TV all afternoon, dozed off and on; refused to eat anything, even snacks.  Around 4:30 I got him up by telling him it was warmer in the other room (it was). 

He was very confused all afternoon, kept wanting me to tell his wife where he was.  At one time he even told me he had 2 wives … he knew I was one, and the other was “Betty”.  I had to keep telling him she knew where he was!

Once I got him up, he did stay awake and watch TV.  I cooked a frozen pizza for supper, and he ate half of it … guess he was hungrier than he thought.

By 8:00 he was ready to go back to bed, and settled down quickly.  He slept well all night .. it’s now after 6:30 Sunday morning and he hasn’t stirred at all.

People:

DH never saw anyone today, although there were people here briefly.

TGF and the boys came by to help clear all the stuff in back of the porch that was blocking the water heater.  I didn’t think she’d have time on a Saturday, so it surprised me.  It didn’t take very long (although there’s an awfully big mess to get cleaned up – a lot of it in the yard now – as soon as it’s warm enough; maybe in April when DGS14 is here on spring break).. 

The boys went next door to see if their dad was home .. the oldest daughter came over and borrowed the phone to  call her dad, and he came right over.  He turned off the water (panic!), and gave us the landlord’s phone #.  Funny, in all the years we’ve lived here, I’ve never actually had his number (well, technically the landlord’s son, but he handles everything and has asked that we not disturb his mom with stuff because she has a heart problem).  TGF has it in her phone .. today I will get it so in an emergency I don’t have to wait until the gas company is open!

He came by, quickly saw that there was a broken water line behind the heater.  He turned the water on (YAY), and turned it off to the heater from inside the unit.  He asked if I’d be OK without hot water until Monday.  I guess if I’d said it was a big problem he’d have tried to find a way to fix it then; but it was late Saturday afternoon, and very cold.  Yes, I can get by heating water until Monday.    Once that gets fixed, maybe it will solve (or at least help) the horribly low pressure at the kitchen sink.

Emotions:

I was so up and down today I didn’t nknow what to do.  I made a lot of progress on packing up Christmas .. though I’m at the stage where it doesn’t exactly show.  But many trips up and down stairs really wore me out.  I guess if DH had wanted to be up at a “normal” time I wouldn’t have been able to handle all the stairs.  In early afternoon when TGF came by I went out and helped (not much) with getting stuff away from the water heater.  Even though I wasn’t outside long, I still managed to get chilled through. 

When I got DH up, I was surprised at how hard it was!  It was really a struggle getting him into the wheelchair (though by the time he was ready for bed it was a little easier).  I was so tired and shaky, I took a longer time than usual getting dialysis set up. 

Once I had him settled in and all his pills, I was finally able to stop for the day.  The wind had slaced off a lot, so the den was not so cold.  As usual, I fell asleep before the end of the 9:00 show I wanted to watch (probably at least partly because it was a rerun!!) .. and didn’t wake until 5:00 AM!!  That’s the best night’s sleep I’ve had in a long time .. but I can’t let myself get burnt out every day just to get some sleep!  There has to be a balance.

I think the nurse will say that DH is closer to the point where he’ll stay in bed most of the time.  He has more days like that, but I don’t think he’s as near that point as she thinks.  He has spells … several times a week .. where he wakes early and is adamant about getting up.  More often now I’m able to settle him and he goes back to sleep; but that’s not every day.  He does have fewer days where he’s completely “alert” … but that has nothing to do with his physical condition.  It’s really hard when his mind and his body are at such different places.

It’s now 19 days until I get a weekend break.  There’s still a part of me that feels guilty for going off and leaving DH … but I need the break.  He won’t be neglected; in fact there will be more people here (DS, DDIL, 2 grands) than are usually here, so he’ll get lots of attention.

In late February 2013 he went to the hospital with an infection.  It was actually being treated by the dialysis nurse; but the Duke doctors wanted him brought in anyway to evaluate his confusion and see if there was a secondary infection that hadn’t been detected.  I don’t remember how long he was there .. about a week, maybe a bit more.  I know it crossed over to early March.  It was during that stay that he was officially given a diagnosis of “vascular dementia”.  I firmly believe his doctors had known that for a long time, but it hadn’t been diagnosed until they had a neurologist test him.  In any case, it was at that time I was told very specifically that he could not be left alone at all.  At that time he was still ambulatory, but very unstable and subject to frequent falls. I’ve not had more than a few hours “off” since then.

For well over 2 years I’ve had to do all of the dialysis set up (and break down).  The only time I got a “break” was when he was in the hospital; but it’s now been the longest stretch in many years that he’s not been hospitalized for anything.  I can’t help but wonder if his lack of contact with “the public” … especially in doctor’s offices and clinics .. hasn’t contributed to him NOT getting sick!!  He now has a nurse checking him every week .. but she’s not preventing him from getting sick; she would catch it quickly if he was, and treat accordingly (although he has had a cold for awhile now, and nothing done for that.  Maybe there really isn’t any particular treatment).

I know I’m coming across as complaining all the time.  I’m just so tired.  Right now I feel “OK” .. but soon my day wil start, and I fizzle much too quickly.  If DH has a day where he keeps wanting to be up and down a lot, it’s even more difficult.  In the past week he had a couple of days where every 3 hours, approximately, he wanted to change where ever he was.  But then he went into a full day and most of a day in bed (although to be fair, at least some of that was the cold.  He has always really hated being cold!) 

It’s nearly daylight now.  I’m going to heat another kettle of water (already did dishes) and try to get washed up and my hair washed before DH is ready to get up.   Because it’s errand day, I won’t wear myself out with going upstairs.  Instead I’ll get trash all bagged and ready to be taken off.  Also I will go around and try to round up bits and pieces scattered around that need to be packed.

Today will be “warmer” (in the 40s – above freezing!!), calm (no high winds) … and sunny!!!  I’m hoping for a good day.

Day 246

Day 246

Frisday, January 24 2014

Physical:

This was a somewhat odd day.  It was SO cold, the house didn’t really warm up much until mid afternoon (and then chilled back down).  The kitchen/den area is very cold, even with the heater on it’s highest setting.  Cold air is just pouring in around the window.  The bedroom was also chilly, and that’s the main reason he stayed in bed.   Surprisingly, he didn’t sleep all day.  I raised the head up soon after he’d had a bath (a very abbreviated one due to the chill,) and it stayed that way until he was ready to go to sleep.  He watched TV, dozed a little but not much, and ate whatever I took to him.  He didn’t fuss about being there either.  At one point he started talking about getting up to go to the bathroom, and I simply refused.  He didn’t press the point; and in the end, he really didn’t have to yet anyway. 

He went quickly to sleep (though we waited later), and had a good night.

Around 6:00 AM I heard him calling out, and went to check.  He said he was calling the warehouse to tell them he wouldn’t be there.  He also said he’d been laying on a pallet but couldn’t get up.  I persuaded him that he was where he was supposed to be, nice and warm, and he went on back to sleep.

People:

The CAN was the only one today.  I am not surprised that my SIL didn’t come back this week in the cold .. her driveway is likely treacherous.  I’m disappointed the volunteer never called.  I half way thought the social worker might call, since she and the chaplain seemed to be on the same schedule; but I never heard from her either.  I think there are too many things she was supposed to be checking on .. and it’s not happening .. so she’s just simply not coming here.  Too bad she doesn’t know that in the end arrangements have been made without her help!

Emotions:

I didn’t wake up until 4:30, so about 6 hours .. very good for me!  It was so cold, I didn’t get out from under my quilts until  a bit after 5:30,. I just watched crummy Saturday morning TV for awhile.  Then I put a kettle on to heat some water, made a cupa, checked on DH, then came in to check email (nothing but junk as usual).  It’s chilly in here, but at least not downright cold! 

I don’t actually mind washing dishes with heated water.  I can bath using a basin of heated water.  I can even wash my hair at the sink using a pitcher of heated water.  But I have a very hard time bringing myself to do any of that in cold!!  At some point today I will manage personal bathing in the bathroom (that’s actually nicely warm).  The dishes .. not so sure.  And because I put off doing dishes, I tend to avoid cooking any more than I can help to create more dishes.  Well, that’s actually kind of normal anyway I guess. 

Friday I actually made a bit of progress: I moved some things around upstairs, located boxes I needed, and got ALL of the nativities packed up.  In the end I spent very little time napping .. apparently it did pay off.  But also, DH being in bed all day meant no back strain or achy joints from getting him up and down.  I think for a change maybe I was “too” tired to sleep well.  Unfortunately, that’s not the norm.  I seriously doubt he’s going to settle for another day in bed, cold or not.  And truthfully, I don’t want him to.  The nurse says – and I tend to believe her – the day will come when he is completely bed-bound.  But he’s not there yet, and I’m not going to try to force him to be that isolated.

I still get spells, especially when I’m really tired, where I just get weepy.  But with something to look forward to plus enough to keep me busy while I count down days, I’m doing a lot better.

I also think the inflammation in my eyes must be getting better.  They don’t hurt as much, and they don’t water all the time now.  My vision might even be fractionally better – although that could be just wishful thinking.  In any case, not having watery eyes all the time is definitely an improvement!   I’ve also noticed that when I have a sense of accomplishment (for example, so much stuff cleared out of the attic and out of the house; and making progress on packing holiday stuff) I feel better.  Well duh! It’s just hard sometimes finding the balance between enough energy to get done things to give me that feeling, and still handling all the things (meals, dishes, laundry, and all of DH’s needs plus getting him up and down).  Some days I succeed; more often I don’t.  And when a lot of those getting-nothing-done days pile up, I start getting depressed again.

It doesn’t help that I have S.A.D. and have a harder time functioning with so many cloudy cold gloomy days. 

I love this house.  This is the first place I’ve lived for more than 5 years in – literally – 50 yeaers.  It took the first 5 years to feel like we might actually stay awhile!  But I’ve worked on getting things nice.  I know it’s still a dump compared to the nice homes my family has; but it’s not bad.  I’ve been able to acquire *things* that make us hepy and comfortable.  Now, though, I’m becoming afraid we’ll be forced to move.  I dread that more than anything.  For one thing, I just can’t afford to move.  And we’re barely getting by on our fixed income (and what I have “put back for the future – not nearly as much as it should have been mostly due to medical bills – can’t be touched for a number of years yet), so finding a place even remotely comparable that we can afford is unlikely.  So either we are forced to give up most of all the stuff we’ve managed to hang on to after so many moves and get a cracker-box apartment (which *some* people think would be perfectly OK, with no regard to how unhappy we’d be there) .. or we find another cheap old house with only fractionally fewer issues. 

I can do without all the yard.  There’s no one to take care of it any more.  I can’t pay someone any more.  DH can’t use the riding mower of course; and I can’t see well enough.  All the gardens that were so lovingly build up and tended have now gone to weed.  So small or no yard is not a problem; but a porch for containers would be necessary.

Another thing I seriously have to think about is DH.  As long as we’ve lived here, he still doesn’t know where he is.  It’s like a home version of “50 First Dates”!  At least once a week or so I take him into the living room and he says he’s never seen that room before.  So how much more would it upset or confuse hm to move somewhere else?

I know I’m just rambling, and these thoughts don’t have much to do with DH.  But that’s just where my mind meanders in the very chilly early morning.

I took him the “early” pill (one he has to have at least an hour before the others).  He was telling me he’d gone to the warehouse and laid down on the cement.  Then he decided that since he already had a cold he didn’t need to work.  He got someone to give him a ride “here”; and his wife is going to call someone later because at home they have no water.

It’s really odd how bits and pieces of things come together in his mind .. like a kalaidescope (sp?).  It’s constantly forming different scenes, and they;re all very real to him.   At least he was content to a ccept that he’s warm and dry and where he’s supposed to be right now.

It’s daylight now.  I have to brave the cold kitchen and get some dishes washed up before the sun comes in my kitchen window (too bright for me to stand there).   And then see what I can accomplish today.

Day 245

Day 245

Thursday, January 23 2014

Physical:

This was another up and down day.  He woke in the morning; and while he did stay in bed without too much protest (the fact that it’s cold helped!), he still insisted on up and down multiple times.  Shortly after he was cleaned u good, he was trying to get up from his chair.  Since I knew he’d just been cleaned , I told him to relax because he probably had gas.  

He was more fuzzy-brained today (some days he sounds much more alert, regardless of where he thinks he is).  I gave him the last of the soup for lunch, and we waited for the chaplain.  But later he insisted he needed to lay down.  And, of course, about 2 ½ hours later he wanted up again.  He was going through a particularly insistent bout of “I can do it”, so I stood back and let him try.  He couldn’t even sit up .. but he kept struggling so hard to try, he fell back asleep!  I gave him a few minutes then got him up.  And, as I expected, he can’t grasp the concept of turning.  This gets more and more dangerous, and I really don’t know what to do.

It was nearly an hour later than usual gtting him to bed (and I was right, he’d only had some gas!).  He slept well all night but was awake by 6:00 (which really isn’t too bad although much too early for him to get up).  As frequently happens now, when I went in the room he asked how I found him.  He had tossed the covers, said he had to go home.  He did finally settle when I told him he can’t go anywhere that early and with dialysis still running and it so terribly cold outside!

Oh, and he ate a nice big serving of rice with turkey has for supper.

People:

What an unusual day it was!!  The lady I occasionally hire for cleaning came, and we made huge progress in the upstairs room.  She took all of the trash and give-away stuff with her (unfortunately, that also included 2 big bags that were not supposed to go!!  I’ve emailed her, and really hope she realized she had those and kept them!!!  Otherwise I’m going to have a really hard time replacing items that didn’t really belong to me!).  While she was here the CAN came.  Besides the upstairs, the lady also cleaned the bathroom and vacuumed all the “public” rooms.  After she had left too, the tech from medical supply came by to put a water trap in DH’s oxygen line.  Then .. around almost 2:00 .. the chaplain came for a visit.  I always enjoy his visits; but things were a ibt “off”, and I can’t exactly explain.  There were brief somewhat awkward silences.  I’m never as comfortable chatting with him with DH, because I’m careful what I say  Also, he requested to leave by a different door.  By this time of day 3 other people (actually 4, there was a delivery) had come and gone using the ramp; but he said it was a little slippery still.  So, I took him around to the back door.  That was unbelievably hard … one of Mama’s superstitions drilled into me was that a guest always has to leave by the same door they came in or they’ll never come back!

Usually he hugs me ehllo and/or good bye .. this time he didn’t.  I don’t think I treated him as sociably as usual; I hope he understands how tired I was by then. When he called I very nearly asked him to come another day – but I rarely do that, and knew the cleaning lady would be done by the time he said he’d come.

Emotions:

As always I have trouble separating feelings from just tiredness. Last night was actually a little better than usual.  I was so tired I dozed off and was a little late taking DH has last pills; but after that, I went right back to sleep.  It was a cold night .. even with the heat on a higher setting, 2 blankets and a cat, it was border line comfortable.  Still, I only woke once around 3:00, and wasn’t awake more than an hour or so.  I didn’t get up until 6:00!!  Unfortunately, this morning there is no hot water.  I have no idea if there’s just a line frozen and will thaw, or something else.  I do know there’s way too much junk in front of the heater.  I’ve been trying to get someone to help me clean the porch, but that’s just not happening.  Tomorrow will at least be out of freezing, so I’ll just have to do the best I can.

/as ifteb gaooebsm U get ubterryoted ub tge nuddke if wrutubgl abd then I’ve lost my train of thought.  It’s 9:00 and DH is still in bed.  He was sleeping soundly when I had to take him pills; I hope he’ll go back to sleep awhile.  The later he sleeps in the morning the better day he has.  The hot water being out is throwing my morning off, and I really don’t quite know why.  I have water; and I have a tea kettle and a gas stove.  I got dishes washed (though I’m glad there weren’t many); and I got a birdbath and dressed (not sure how long I’ll be OK with not getting my hair washed!!).  Laundry is done with cold water  So everything is actually mostly on track.  I still have to feed the outside cats .. but I’m only putting that off because it’s so cold!  Oh, and I went upstairs briefly, moved a few boxes around.  

Some days are better than others of course; but if I can make myself stay busy, the days go faster and I’m less likely to have a complete melt down by evening.  I’m usually so tired I can barely move;  but tired alone is at least better than tired and depressed.

Sometimes I think I just keep sitting here and writing stuff that doesn’t even make sense .. because the alternate is to get up and get busy.  It’s cold.  DH is stirring.  I have to feed the cats.  I want to hide my head in the sand.  21 days and counting.

Day 244

Day 244
Wednesday, January 22 2014 
Physical: 
This was another up and down day.  Meaning DH wanted to be up and down!  I guess he got rested up; by morning he was wanting to get up.  The hospice office was on 2 hour delay (because of weather), but not everyone followed that.  After getting a bath, he was clear about wanting to get up.  After about 2 ½ hours, he insisted on laying down.  He napped about 2 ½ hours and wanted up again.   He was up for 3 ½ hours before bedtime.  The one *good* thing was he did not insist on an additional up and down on the commode.  It almost feels like there’s a tiny bit of progress on getting him to understand that’s not a good option any more; but then, he may be only going through a cooperative mood.
He refused to eat any lunch, but did eat some chips after his nap.  I believe he just wanted to graze on jelly beans!  He ate 2 good sized bowls of his sister’s homemade soup for supper.
This morning (early Thursday) he was awake off and on since very early; around 6:00 I took him the early pill and got him settled.  He was wanting to get up.  Also, he had his O2 off .. said he “found” the tube coming out of his shirt and pulled it out.  Thank goodness he didn’t decide to pull on the dialysis tubing, though he did have it wound up a bit. He had also gotten the elastic band (supposed to hodl the catheter when not on dialysis so it doesn’t dangle and risk getting damaged) tangled up.  I have no idea how he did that, it wasn’t unfastened.  
People:
The CAN came earlier than I expected considering the weather.  She said her other patients had cancelled because of bad road conditions.  They weren’t bad here; we didn’t get much snow.  Not long after she left the nurse came.  
Apparently one of her patients (or family member) had complained about her.  She asked if she’d ever offended us, and would we tell her if she had.  Hmmm.  She never has; there have been times I thought her manner was a touch off-putting.  But she may not have felt well then.  Certainly she’s never been offensive!  But .. she does have a touch of briskness to her manner, so I guess I can see how someone could take offense.  But I don’t think I’d tell her .. but I also wouldn’t call behind her back and complain.
Emotions:
There has been more “company” lately for various reasons. I didn’t hear from the volunteer this week, but I did know she had car trouble.  I hope she calls today.  My SIL has come more often, and there’s at least an outside chance she’ll come today.
It’s a bit discouraging to not have many friends.  People I used to think were, turn out not to be.  There are 2 ladies I still can consider friends.  One has medical issues; and lives far enough away that it’s not easy to coordinate a visit.  I won’t try to organize anything around the medical people that come here.  The other friend .. well, it’s too cold.  And when it stops being too cold, I guess she’ll find other excuses.  She told me about a year ago that she completely “understood” my position.  I mistakenly thought that meant she’d be available when I needed help, or just company.  No, it meant she had gone through a similar experience and couldn’t bear to be around us now.  
I think there must be something fundamentally wrong with me.  I have tried to reach out to people .. like people I used to work with that I thought were friends .. and I just get rebuffed. If I’m not a nice person, I don’t know how to be someone else. I really don’t want to be sad all the time; but I don’t want to be tired all the time either, and there’s really no way around that for now.  
It was another early morning for me.  But a lady is coming today to help get the attic under control, so I have to get myself organized and ready to go.  If my SIL comes today, she will help too.  But who knows.  
For now, DH has gone back to sleep and I better rush to get a shower and get other stuff done while I can!

Day 243

Day 243

Tuesday, January 21 2014

Physical:

Clinic days are always exhausting, and this was no different.  If anything, they get worse .. DH’s weakness is more evident when each trip is a month later than the last. 

I got him up and dressed in the morning with no trouble; he’d slept well, and was reasonably alert.  

The appointment was quicker this time.  They were rushing because of impending bad weather.  The nurse did all the things he needed to do; and the doctor (the reason for the visit – Medicare requirement) was there less than 5 minutes.  We did not have to deal with the social worker or nutritionist.  Even so, by the time we left, DH was so tired he couldn’t even sit up straight in the car.

Fortunately, getting him in and out wa not a major problem. 

As soon as we got home, he wanted to go straight to bed, and he slept the rest of the afternoon.  I took him some sandwiches (he wouldn’t wake enough to eat earlier) for an early supper (that being about the only thing he can safely eat while sitting in bed!).  But, about 7:00, he suddenly decided he was tired of bed and insisted on getting up.  I’ve learned the hard way what happens if I refuse; and I can tell when trying to “talk him down” just will not work.  So, he got up; watched TV for just over an hour; and was ready to go to bed.

He slept fairly well all night, although I think he was disturbed, as I was, by that dratted barking dog just outside (on the side of the house where there are NO doors, so trying to run it off isn’t a viable option).

People:

DSS took us to the appointment.  He saw the nurse and doctor, then came home.  That was it!

Emotions:

I keep thinking a good night’s sleep will make me suddenly alert and energetic. L  Not happening.  I start out well, and tend to get a lot of things done in the very early morning – even though I really do not want to be awake then.  But by mid morning I’ve fizzled; and yet I still have the whole day … getting DH up and down, meals, pills, etc..  By early evening I can barely move; so within half an hour or less of taking DH his last pills, I’m asleep.  Which means I wake up in the middle of the night.

Last night, in addition to the barking dog, I believe there’s a litter of puppies roaming around that were on the porch.  I’m sure they’re starving, and were looking for any remaining scraps of the cat’s food. I don’t know what to do … I’ve already been told this county’s animal control will not come get them.  I was told I could bring them in .. and pay a ridiculous fee for EACH uppy to be spayed or neutered plus shots.  And then they will charge someone else to adopt them!  I think not.  But even if I would do all that, I have no way to catch and transport them.  If I did, I would have eliminatd at least 3 or 4 of the cats out there.

Every day I have every intention in the world of going upstairs and starting to make a dent in the cleaning.  And every afternoon, I sit down .. and fall asleep.  Then I wake up groggy and I just hate it!  But I feel so tired I just can’t help it.  The days when someone is here I do better of course; but as soon as they leave I crash.  At least *something* gets done those days.  It’s frustrating to have to pay someone to come help me tackle that room, but I just don’t see any other way to get it done.  I’m not tired of my Christmas decorations in general, but I’m ready to put up a few at a time.  I’m starting to have things piled up, and that is also frustrating.  I’ve worked very hard on getting the house at least neat and mostly uncluttered, and now it’s gotten junky looking again.

Even when I get up early and get things done, I seem to have a hard time sitting down and writing.  Actually, I guess I rarely just sit down to do something without having to constantly get up for something or other.  And if I don’t – I seem to fall asleep! 

Hospice is on a 2 hour delay today because of weather.  That shouldn’t make any difference at all since we never actually know what time anyone will be coming here.  I need to go find something that needs to be done while I can.  I’ll have to get DH up soon; clearly, this will not be a sleep til noon day.  

Day 241

Day 241

Monday, January 20 2014

Physical:

This was a quiet day.  DH stayed in bed until after noon.  He would wake a time or two, but was warm and decided to stay there.  He got up after getting bathed, and didn’t doze all afternoon; but off and on some.  In the late afternoon he informed me he thought he’d “had an accident”, so I took him back to his room to get cleaned up.  He wanted to stay there, and napped for between an hour and a half and two hours … got up just before 630.  I was afraid it might get his bedtime a bit off, but it didn’t.

He did wake up around 4:30 though.  And again at 5:00.  Then he seems to have settled back down. 

When I went in at 4:30 he asked how I found him.  I told him I’d heard him rattling and squeaking the bed.  He very indignantly replied that “this is not a bed”.  But when I asked what he thought he was doing somewhere else, with dialysis running, at 4:30 in the morning he conceded that I had a point! LOL!  I never did find out where he was then; but at 5:00 he thought he was in the bathtub.

It’s a bit odd (well, I guess it is), that when he thinks he’s somewhere else, trying to tell him – or even show him – where he is doesn’t have any effect on what he believes.  But telling him what time it is seems to calm him down a bit.

People:

The CAN was on the later side of noon, but since he was still in bed it was fine.  I do enjoy talking with her.  Later in the afternoon SIL came over.  She brought us some homemade soup (which is thawing for tonight when it’s supposed to be extra cold again), and stayed awhile.  She helped me put the blue balls on the white tree … when I get very close, it’s pretty.  I’m sad I can’t see it better.  While she was here the supply delivery came.  I wasn’t even sure he was coming since I never got the usual call with a time frame.  I didn’t know if it was a holiday for him or not  Also SIL and I went through some more books, and she went home with a sack full of cookbooks .. mostly the kind published by churches … and a promise to try out some recipes and share with me!

Emotions:

I got good news, and had company, and DH did not have a bad day.  So it was all together a fairly good day.  By evening, as usual, my energy level suddenly dropped.  I wish I could get that regulated; but since I have to work around his schedule, I guess I can’t.  It’s very frustrating that in the evening I’m suddenly so exhausted.  Plus the morning dose of Aleve seems to start wearing off, and my legs get achy. I manage to push myself through supper and dialysis set up.  But by 9:30 – after he’s settled and has had all pills, and I’ve had all my eye drops (or at least all I remembered), I just can’t stay awake.  My body seems to be tuned in to having around 4 hours of good solid sleep … which means I’m asleep by around 9:30, and waking up between 1:00 and 2:00.  Not good!!  Usually I can drift off and on from there to close to 5:00 when I give up and get up.  Last night it did not help that some dratted dog was running around barking right outside my window!  Grrrrrr.

Yesterday the children (next door) told me a puppy had run under one of the cars in the yard.  During the night I thought I heard, once, a puppy type Yipe.  If it’s a small one, those cats will run him off.  I hope it moves on somewhere else.  We’ve been through that twice already (stray puppies), and just don’t need it again.  Much as I love my cats, I don’t need all of them, but no way to do anything humanely about them.  No dogs please!  Not stray that is.  I’d love to have a golden; but obviously I don’t have time or energy to devote to a dog right now.

Yeserday I got news that put a few more pieces into what I hope turns out to be something great.  I’m really afraid to get my hopes too high .. and yet …. I’m counting down days (24) anyway.

Today (Tuesday) is clinic.  I always dread this day.  There have been more and more times lately that it’s been very hard to get DH up and down, so getting him into the car is a major issue.  Plus, by late afternoon the weather turns nasty.  As usual, they’re saying where we live is “just below” the rain/snow line.  So chances are all we’ll get is cold rain that will freeze.  If there’s any snow, it will likely be mixed with the rain, and after dark so I can’t see it anyway.  Nuts. L

The volunteer lady had suggested she might come on Monday, but I never heard from her.  Of course, it’s always possible she tried to call – my phone line is quite unreliable.  Ironically, the kids insist I keep the landline for emergencies since cell reception is almost non existant.  An option might be Vonage, which runs off internet.  But then, when the internet satellite is down, I’d still have no phone.  Wait a minute.  A lot of the time I have no phone anyway.   But, it would only be around $10 cheaper .. and I suspect it would make my internet bill go higher, so no useful gain anyway.

It’s still not quite 6:30 in the morning.  The dialysis won’t be done until between 7:00 and 7:30, and I prefer waiting until it’s done to take a showerIt’s not essential if I have a reason to be earlier, but today I don’t.  There are still over 4 hours until we need to leave.  There are no dishes to do, today’s pills are done.  I have no reason at all to be awake this early, so I’m going to go watch morning news and hope I drift off for a quick nap!

Day 240

Day 240

Sunday, January 19 2014

Physical:

This was a remarkably quiet day for DH.  He stayed in bed until close to 1:00.  He would wake a bit, say he was warm and comfy, and go back to sleep.   Once he did get up, he stayed awake most of the rest of the day, with only a few short naps (less than half an hour each).  He ate 3 tacos for supper .. a bit unusual for him.  And, he slept all night again!

People:

It was the usual Sunday “crowd”: DSS, TGF, and the boys.  TGF and I did our usual weekly errands, and picked up (the above mentioned) tacos for supper.  I know, not terrible “nutricious”; but we just wanted something different!

Emotions:

I’m awake way too early .. but that’s partly because I fell asleep too early.  Apparently I’m only “allowed” a certain amount of sleep .. it seems to average around 5 to 6 hours.  I got that much, though not completely consecutively.  Maybe tonight will be better, since I’m not likely to sneak in a nap today.

The volunteer is coming this afternoon; I don’t know what we’ll do yet.  I’m leaning towards decorating the tree that stays up all year (blue ornaments for winter – hopefully before winter is over!)

I’m still waiting to see if all the pieces will fall together for  … something. 

I’m doing sort of better at staying ositive; but I’m so tired by evening that it gets harder then.  I seem to reach a point in the late afternoon that I just crash.  But, I’ve had fewer recent spells of crying jags.  Dare I hope that the drops for my eyes are working and that’s part of it?  I think also, having fewer issues dangling helps (mail is currently under control, and starting next month a new – system in place to pay rent).    Also, I talked to the pharmacist yesterday, and it’s OK for TGF to pick up refills for me … which could make Sunday afternoons easier too.  (she can go by on her way home from school, and they know she has my permission to pick up any Rxs and put it on our express pay.  I know the pharmacist will call me if there’s any problem!).  So, a lot of things coming together gives me less to worry about.  The physical stress is not going to go away, so that’s just a matter of keep on doing what there’s no alternative for doing.

ore pieces fall into place.

I really don’t know if I’m feeling less depressed, or just tired to the point of numb! LOL!

Day 239

Day 239

Saturday, January 18 2014

Physical:

This was actually a fairly good day.  It started out messy (you don’t want to know!!!), once DH was up and dressed he was reasonably calm.  There were no incidents of trying to get out of the chair.  He didn’t eat “breat”, but he did at least eat a ham sandwich and then several pieces of chicken for supper.  I know – he’s not getting any veggies or fruit.  I keep trhying, but can’t force it down him. L  I’m looking for way around the issue (i.e., giving him juice instead of water with his pills, with the “excuse” that the pills won’t taste so bad).

Even though he slept most of the day, as usual, he had a good night with not much coughing.

People:

Our DDIL and DGD15 came around mid afternoon and stayed  3 or 4 hours.  DDIL helped me with a lot of the irritating little issues, like mail, that give me a hard time.  That also frees up time on Sunday.  I totally enjoyed their visit! I think DH enjoyed having DGD there – when he was awake at least.  She actually enjoyed watching something on TV with him, which was great.

Emotions:

When I am less tired, I am less stressed.  That’s just common sense.  But most days, even if I start out feeling rested, by the end of the day I’m totally exhausted .. and therefore a bit weepy.

The best days are the ones with contact with people outside of this house.  I don’t expect company every day.  I don’t even want it .. I do occasionally need my “down” time.  And I’m really not doing a good job of keeping the house “company ready”, so I need time to work on that.  But yet .. any day that I have company, or a phone call, or an email, is a bit brighter.  I believe DH has slightly better days when he has company (even though he tends to sleep through most visits).  And by company, I do not mean “duty visits”.  That’s what the visits from the social worker and the chaplain start to feel like, especially when they come tandem.  But, they’re doing their jobs.

I have slight hopes now of a light at the end of a long dark tunnel.  There are many road blocks still – a lot of coordinating needed, and some aspects may not work out at all.  But at least there’s that glimmer of hope.  And there is the comfort of knowing someone is willing to step up and offer to help out in a situation that was looking awfully bleak.  We’ll see what happens, and I’ll try not to get excited, at least not until a lot more pieces fall into place.

Day 238

Day 238

Friday, January 17 2014

Physical:

This was definitely an “off-beat” sort of day.  DH slept fairly late .. he stirred a few times, but went on back to sleep.  Then around 11:30, he decided to get up (on his own of course).  Although he had calmly agreed multiple times that trying to get on and off the commode was too difficult, suddenly nothing else would do.  And, of course, it was partly “too late” .. he can’t tell the difference.  Once I finally got him cleaned up and dressed, in the wheelchair shirt all buttoned … he wanted to lay down again.  And he hasn’t been out of bed since.  He said off and on that he didn’t feel good.  He had the TV on, but mostly slept through the afternoon.

He has a habit of “holding” his breath in short puffs, so he sounds like he’s trying to struggle to do something and getting short of breath.

He also didn’t want to eat; but I fixed him a pot pie (one of his favorite things) and he ate most of it.

People:

The only person here today was the CAN around noonish, or a bit later.

Emotions:

After only getting somewhere around 3 hours sleep last night, and some off and on cat naps through the afternoon, I now feel so tired I can’t even think.  The one “good” thing is DH staying in bed .. I just not sure I could lift him safely!  And I don’t know how to change this pattern. I feel like I’m being crushed, and no way to lift the weight.

And, as if I needed something else … the landlord knocked on the door today.  She was concerned because the rent is never this late but she hadn’t gotten it yet.  I was embarrassed and humiliated.  And of course, TGF continues to assure me it was mailed (twice); she says on Tuesday she’ll take the stub and start a trace (but I’m not sure the PO will actually do one that quick).  I’m hoping it will show up by then.  But clearly I have to come up with another way to handle this.  It’s more annoying than ever that she doesn’t want a check.  But then, I can’t even see well enough to write a check anyway.  I do have a glimmer of an idea about that; but I have to figure out how to arrange things without offending TGF.  As annoyed as I get with her (she rarely does anything unless there’s something in it for her), I have no choice but be dependent on her to even get to the pharmacy and grocery store once a week.

I’m trying to write tonight because I may have less time in the morning.  Hoefully, if nothing happens, my DIL is coming to visit and help with some stuff (like mail, computer issues, and maybe starting to pare down some of the junk in the “office closet”).  But I’m so tired I can’t think.  Just a little while more and I can take DH his last pills, and I can try to get to sleep.  And hopefully STAY asleep for at the very least 5 hours; preferably 7 or 8!!

ay will turn out.

It is now close to 3:00 AM.  He woke up around 1:30, trying to get off the bed.  He said he was going to the bathroom.  Only then he said it was too late.  He went back to sleep.

I didn’t.  As usual.

I have washed dishes.  Checked email (pretty useless in the middle of the night).  I’m really groggy and my eyes burn, so not at all sure what else to try to do. I desperately need some sleep.  Maybe I’ll try some hot chocolatep.

I did finally manage about another hour of sleep by moving to the guest room sofa.  Weird.  (I can’t sleep much more than that on the sofa, it makes my back hurt).   It is now 8:00, but not very bright out.  Supposedly it’s going to be sunny but very cold; but it’s starting out gray and that’s making it hard to wake up.  I’m going to try very hard to have a bit of a productive day .. the more tired  the more I’m able to keep busy, the less overwhelmed and depressed I feel.  Mid afternoon is the worst time, when I tend to crash.  Apparently a couple of hours nap then  (and unless I’m very busy, usually with someone else here, I can’t seem to avoid that) is just enough to ruin the whole night.  It would also help if I could figure out a way to turn my mind off at night … but if old episodes of Andy doesn’t do it, I don’t know what will!!