Day 18

I’ve not heard anything more from the Paliative Care lady.  Which, to me, IS an answer.  I believe that if she’d found any loophole through which Jimmy would be admitted to hospice, I’d have heard by now.  OK, granted she’s only had 2 days; then again, it wouldn’t take 2 days.  Doreen thought that there was aa chance they’d find *something* since it was a different company.  But, the same Medicare guidelines would apply; and Medicare quite clearly has decreed that only people on their deathbed are eligible for hospice care.  And since we have the nerve to keep Jimmy alive by dialysis – even though in all of his doctor’s opinions the kidneys and lungs are 2 completely separate medical issues – he’ll never qualify.  Personally, I don’t think they (hospice) are really tying all his conditions together.  I think that most likely Medicare has said that if a person is on dialysis, no matter what their medical conditions are, they are not eligible.   If you keep a person alive by “artificial” means, they can’t be admitted.  It’s just that simple.  I’ve said it many times lately, and I still believe: the government wants all of us “older people” to just die off and quit wasting resources.  Jimmy is no longer able to be a “productive” member of society, therefore he’s useless.  I guess that sort of explains the number of very old people in nursing homes.  There’s nothing “wrong” with them other than age.  But they’re relegated to inferior care, and limited options, because they’re old. 

I will probably not fall completely into that category – but only because I have insurance.  As soon as I became eligible for Medicare, I got a very good insurance policy.  It’s too expensive; and when the time comes that I have only my Social Security, I will be one of those old people choosing between paying for heat or buying groceries.  Or maybe neither, as the rent would take the bulk of my income.  Then again, once my vision goes, I suspect the kids will try to force me into one of those nasty crumby tiny government apartments.

OK, this is about Jimmy, not me.  There’s really no need to write caily.  Things just don’t change that much.  I’m totally discouraged at the amount of time he insists on spending in bed with the BIPAP; but there’s really nothing I can do.  It sounds wrong, but I’m really looking forward to when his lung function decreases enough to qualify him for oxygen!  Because, I believe that once he has oxygen available 24/7, he’ll actually be more likely to be *up* more. 

Last night after only being up about 2 hours from his afternoon nap, he was wanting to go back again.  He says he “needs to suck on some air”.  Nothing anyone says can convince him that he is NOT getting oxygen through the BIPAP.  He refuses to believe it is just room air (which it is – under pressure, but still only room air).  If he had gone back when he wanted to, it would have made the whole evening inconvenient to put it mildly (I was in the middle of fixing supper).  But … Carl came by.  He had promised to inject the heparin into the solution bags (which I had ready for him).  He stayed about an hour, and amazingly, Jimmy wasn’t too “short winded” to sit and talk to him.  And, he ate his dinner while he sat and visited with Carl.  So, my thinking is that he’s just bored; and not interested in any of the things we’ve all tried very hard to get him to do.  If there’s nothing on TV to catch his interest, he just wants to sleep.    He enjoys visiting with Carl.  Actually, he pretty much enjoys visiting with anyone but me … he too used to me (and I’ve become just the caretaker).  He is looking forward to Michael being here; but Michael isn’t going to just sit and talk to him.  He’ll try his best to get grandpa up and doing something.  (One plan already in my mind, is that on appointment days, Michael can push grandpa in a wheelchair in Wal-Mart so we can get things done.  That means an extra getting him in and out of the car; but Michael will help with that too).

Jimmy used to be interested is so many things.  Everyone has tried to get him to do some of them, but he just refuses.  I suspect that may have to do with the dementia, although we didn’t know it.  He frequently says about something (i.e. remembering how to use the TV remote) that he “just can’t wrap his mind around it”.  I think maybe he knows that he no longer really nows how to do those things (carving, painting, building models); but can’t quite grasp why he doesn’t know.  That’s got to be frustrating and depressing for him.  So I think the key to keeping him “active” (alert; sitting up) is people around him.  And I just don’t know how we’re going to manage that … people have other things to do than just come sit and visit with him.

This is going to take more thinking about, and discussing with the family!

Note: I've seen that I have 2 "followers".  Amazing!  I don't recognize the screen names, don't know if they are anyone I know or not.  I'm not sure if I read the information correctly, but it looks like this blog gets lots of "views".  Even more amazing! But, a reminder, comments are welcome.  If anyone has more than a quick comment to say, please use  olgramy@inbox.com  ... an email account I've set up just for use in connection with this blog.  I'd really be glad for any input, whether it's criticism or advice or just support.

Day 16

I just have a few generalized thoughts stemming from my frustration with “the system”.  Medicare’s general guideline is that you get sick, you get worse, you die.  For example, it’s relatively easy to progress from a walker to a wheelchair.  But, it’s a lot harder to go from a wheelchair to a walker, because Medicare in general doesn’t believe people get better.

So, Jimmy is thwarting the system. He got sick.  He got worse.  But he went on dialysis, which is keeping him alive.  And because of that, he doesn’t qualify for any sort of assistance programs.  It’s like the thinking is that if you don’t follow the program obediently, then we turn our backs on you and wait.   Even his doctors (all but the nephrologists of course) are restricted by Medicare guidelines so can do nothing more.

I’ve repeated it often, but still annoys me: in the hospital, one doctor blatantly said “all we’re doing is keeping him alive”.  The implication (not only by that phrase, but by the rest of her comments) was that we are wasting resources by keeping him alive, and they should be taking care of patients worth saving.

I’m willing to admit, at least some of my frustration comes from exhaustion.  From early morning to late at night, I’m “on duty”.  Well, technically all night too.  I don’t sleep soundly because there’s still a part of my brain listening for the alarm to go off or for him to call me for some reason in the middle of the night.  And I wake up way too early.  Yes, there are “breaks” in between.  But it’s hard to do a lot of things … frustrating always having to stop.  Plus, since he’s nearly always either in bed (maybe sleeping, maybe not) or watching TV, it’s really hard to get the “main” (public) rooms cleaned!    Anyway, my point is, I do it all.  My house probably isn’t as clean as it should be (dust is probably several inches thick – I’m allergic, plus can’t see it anyway).; but at least it’s not disgusting.  And I do keep it mostly decluttered and “decorated”.  I don’t vacuum or sweep the kitchen as often as I should, but it does get done.

I keep dishes done – even put away, not just in the drainer; I occasionally make the bed (hard to do with him IN it!), and change the sheets weekly.  I keep up with laundry, and do the best I can to keep trash under control (even though that frequently means “storing” it in the car … PPPPP UUUUU – until I can get to the dump).

I try to do all that stuff as best I can during my “breaks”, especially afternoon when he usually naps.  I also have to count out his pills weekly (including one pill that has to be cut in half, which is extremely hard for me; but it’s just always too inconvenient for anyone else to do it), and then sort them daily.  I have to try to make sure he gets the right pills at the right times (again, very hard to do, because he tends to drop them!).  There’s one pill he gets “early” (at least an hour before the others), which I take to him any time before 9:00.  Wen I take the rest of the morning pills, around 10:00, I take his B/P, disconnect the dialysis, and change the dressing on his catheter site.  Often I have to empty the commode chair and/or the urinal.  Eventually, when he gets up, I have to wrap up the dialysis trash, empty the unused solution.  During the day I try to get him lunch and dinner … occasionally problematic because he may or may not eat (for that matter, he may or may not be out of bed).  Any time he’s up (in the living room in his chair), if he decides he Must go back and lay down (usually meaning he thinks he’s short-winded and wants to get back on the BIPAP), he needs help getting up from the chair.  So far he’s not needed help getting up from anywhere else, although I suspect that time isn’t far off).  In the evening, practically as soon as dinner is done, I start setting up the night’s dialysis.  With no problems, and if I remember to shut the door early enough to keep the cats out, it usually only takes about half an hour.  Once that’s done, he’s ready to go back to his room anywhere between 8:00 and 10:00.  He resists a “schedule”, so it’s whenever he decides he feels like it.  Once he gets back there, and gets settled, and undressed, I give him a cup with some cleaning solution to soak the end of his catheter prior to connecting to the dialysis tubing.  After several minutes, then I get him connected.  On average, that ends up being around 9:30.  At 10:00 I take him the last of the day’s pills.

When I started writing, I didn't know where this was going.  But, this is how most days go.  I do see changes, gradually.  He gets weaker (takes longer and longer to take clothes off or on); he gets more confused more often.  He's had memory trouble for yers, but it's much worse - now he "loses" entire days.

It's not going to get better.  He's not going to get better. And yet ... as long as we're keeping him on dialysis ... we're "just keeping him alive".  

The "system" stinks. :(

Day 15

Oh yeah, I got way off counting days! LOL!

I started this thinking I'd be tracking our "journey" with hospice.  Only, that's not going to happen.  Then they came back with Paliative Care.  Well, we're not writing it off yet .. but the lady (nurse Lucy) who came said it would most likely be cancelled after a few home visits .. because realistically, there's nothing they can do.  He's not in pain.  They can't do oxygen.  We don't need help with medicine refills.  She actually said he'd benefit more from hospice .. but that option has been taken away.  

I'll keep on writing occasionally, just because it's an outlet; and I can look back and see progress (or lack thereof).  But really, it's all pointless.  We've pretty much been tossed out with the garbage.  His doctors seem to want to write him off.  Hospice will only "help" (how is that help???) if he stops dialysis.  

I keep getting suggestions that we hire someone to come sit with him so I can get out.  Really???  We have adult sons and grandchildren.  And we should *pay* a stranger to come here?

I don't think I'll write any more unless I feel like I have something worth saying.

Day 12

This was, in a lot of ways, a bit of a wonky day.  But, if I can overlook my stress and frustration (which I admit it hard to do), it wasn’t really too bad a day.  I totally think the kids being here was good for Jimmy.  It didn’t really keep him from wanting to go back and lay down too much of the day; but at least he seemed more “with us” when he was up.  During the afternoon we played a card game.  Alex played partners with grandpa, and we tried to draw him in.  He’s never been much interested in games anyway, and I think he found it very hard to keep his mind on the game.  It didn’t help that the TV was on .. on a news channel  (for some reason no one was willing to turn it off).  Still, we were at least all together, and tried to include him in the conversation (although, honestly, he’s never managed to grasp what’s so funny when the rest of us get fits of giggles over some silliness).

Brent and Cindy – at various times, separately and together – asked me some hard questions.  Some things I’ve given vague fleeting thought to; others, a bit more.

What is the starting point?  Jimmy has consistently refused to discuss such things as final arrangements.  So evidently it’s up to me to make decisions for him as well as for myself.  I’m really, really tired of having ALL the responsibility piled on me.  (I have sympathy for my brother, who had all the responsibility for my parents dumped on him.  But in self-defense, I have to say that tough he saw them pretty nearly daily, and was always there for what they needed – he did not have to care for them 24/7, and had his own home to retreat to.  And I’m willing to bet and he my SIL have taken care of their own arrangements, rather than refuse to acknowledge it will ever need to be done.)

I cannot worry about what will happen to me, where (how?) will I live “later”.  (I know my parents tried their best to leave me provided for, as well as some retirement.  But massive hospital bills, doctor bills, dialysis bills, and meds take precedence unfortunately for me).  Things will work out.

For now, I have to figure out what I need to do.   I did look up funeral homes online.  There’s one “main” one in town, that all of the family seems to use.  I sent an email request for “pre-arrangement” information to be sent.  I guess that’s my starting point (for both of us).

I started this “the morning after” again … Well, today got away from me, as usual.  For DH, it was not a bad day, other than the bath.  He used up a whole tank of hot water, and said he’d have to go back later to finish washing.  Of course that didn’t happen.

My DIL has offered to help me struggle through the hassle of “making arrangements”.  I SO appreciate her!  She also said her parents are going through the process too, and she’d ask them for advice.  That will be very helpful!

Tonight, DSS and crew came over, instead of last night.  They come here for dinner (shared .. but always shared more heavily on my side), to do dishes, the boys to get showers.  I understand the “why” of it (but that’s a story for another place).  But it gets on my nerves, some times more than others.  I want the house to look nice tomorrow when the lady (nurse? Social worker?  No idea!) comes in the morning.  Night is not a good time for me, I’m tired and stressed, plus my vision is even harder to cope with when it’s dark. Plus I have to get Jimmy settled.  So, I have to be able to get to sleep so I can get up early enough to get a lot of things done before 10:00.  But I have to wait for them to get done and gone.    Jimmy does perk up more when Carl is here, so I’m just keeping to myself in “my” room.  As soon as they leave, I’ll have to get Jimmy hooked up so he’ll be done before the lady gets here.

Day 11

Once again, I'm actually writing the next morning.  Lat night was an unusually late night.

Brent and Cindy and the kids got here about 4:00.  I had gotten all of the cleaning done I wanted to, but hadn't finished the potato salad.  Brent helped me peel the potatoes, and then I finished that.  He took me to the grocery store; we mostly got a variety of stuff to have sandwiches and salads for supper.  Going out this week might be a problem, but I'll figure out what I can do when the time comes.

Jimmy continues to insist on getting up and down at odd times.  He laid down around 1:30, and got up when the kids got here at 4:00.  But while Brent and I were at the store ... not sure, but I think around 6:30-7?00-ish ... he wanted to go lay down again.  He had to wait until we got back (Cindy is too small to help him stand up!).  I fixed a plate of supper for him, but he didn't eat much (as usual lately).  

I was late getting to setting up dialysis; but I still had to change up my "routine" because he was still in the bed.  But then after I was done, and we all went back to the den to try to watch a movie, he got up and got all the way back to the den.    Which only goes to proove he CAN do things when *he* wants to do them.

It was late before we finally started the movie (Life of Pi), so close to midnight before he got to bed.  Very unusual day.

During the day, I explained to Brent and Cindy about the hospice situation.  Later, as an offshoot of that conversation, we talked about making "final arrangements".  Well the fact is, that needs to be done regardless of hospice or anything else.  One, it should be done ahead so that when it's needed it won't be an additional stress when I need it least; Two, I won't be pushed into someone else's ideas; Three, it shoudl be done while there's still a little (VERY little) left of his $$ to pay for it.  I will have to try to talk to him about this; but I'm not sure it will do any good.  He's always pretty much refused to discuss anything like that ... he seems to think it's up to survivors to make all arrangements and he shouldn't have to think about it.   Plus, if I try now,  I'm afraid he'll think I'm planning to "pull the plug".  

I'm also concerned that if we talk about it, he'll tell his sister.  It's not so much that I'm trying to keep it a secret from her ... I just don't want her to know until everything is arranged and paid for.  Otherwise I am very much afraid she'll try to bully me into doing what *she* thinks is appropriate (with no regard to his wishes).  If everything is all done, I can tell her she's welcome to hold a "memorial service" and do it any way she wants.

Well, those are my thoughts from yesterday; it's time now to get on with today.

Day 11

I think I'm starting to lose track of days; but I guess it doesn't especially matter.

I actually had planned to call Dish Network to inquire about their internet plans.  It wasn't available here when I got Hughesnet; but they've been doing a lot of advertising about their expanded coverage.  But, then this morning a Hughesnet tech called.  He said he'd be here in an hour, and I was very surprised - until he he went to verify the addresss.  Seems he had mixed my work order up with someone else.  Hmmm .. karma?  He hesitated a bit, and then said he'd be here.  And, he was.  

The UPS truck had not only knocked the satellite so hard it lost the signal - the post it's on is wobbly!  Turns out the installer should have set it in concrete; and it really should have been set farther away from the driveway too.  He's going to submit the charge to their insurance, and we'll see what happens.  Also, he showed me (and saved it to my bookmarks) how to check for signal strength ... so I can get someone to help me set the post more securely (they'd charge me again for someone to come do it!).

Well, anyway.  I have internet back.  It's wrong to depend on it so much, but I do.  Even with poor vision, I can enlarge the print.  Every day I scan all the folders I have, hoping there will be some email.  And most of the time, all that's ever there is junk mail.  But I do send my newsletter.  And I check FB for any status updates or messages from family.  I pay my bills online too.  And I keep in touch with the clinic and the dialysis nurse too.  

I've been weaning myself off ... spending less time.  

This morning, just as the repair guy was finishing up and leaving, my brother called.  What a lovely surprise that was!  Seems my sister shared an email I sent her in response to her asking how are things *really*.  They ask what they can do ... and all I can say is to keep in touch.  I just get to feeling so very alone.

So, I've babbled on and on.  The point of this blog was supposed to be tracking Jimmy's condition .. for however long I have to track it.  He will never, ever be hospice, since the ONLY way he'd be on hospice is for us to discontinue dialysis.  I understand hospice is a very good program under the right circumstances.  But since it won't work for us, I honestly don't want someone - who is not available to help us when we need it - to be coming in at the last minute.  Yes, I know, it would be someone to handle things.  Well, his boys will just have to man up.

I know there will be a lot of stuff to take care of.  One thing Jimmy has consistantly refused to discuss is any sort of "final arrangements", other than to say he doesn't want to "be a vegetable" and he does NOT want a "big fancy expensive funeral".  Ha!  Like his sisters won't try their best to force me to do what THEY want ... and after all, funerals are for the ones left behind!  

I've been thinking about it ... I think perhaps the reason he's always refused to sign a DNR (refused by being passive .. simply not answering the questions) ... when he was earlier in the transplant program, he firmly believed they were going to work "magic" and make him better; and he thought a DNR gave doctors permission to give up on him.  And now, as he's slowly coming to accept that he won't get better .. he still thinks a DNR means they/we will give up on him.  I wonder if somewhere in his damaged mind he still thinks he will get better?

That's enough thinking for tonight.  Tomorrow Brent and Cindy and the kids will be here.  I really, really hope having them here will perk him up a bit ... maybe get him interested in something other than sleeping.

Day 10 (cont)

The rest of this day has not turned out very well at all.

OK, we finally got out of here and to Jimmy’s appointment.  I was able to have a conversation with the nurse about the Paliative care call.  She said she had previously had the same impression that I did; but that it’s actually a service for “pre-hospice”.  I’m still skeptical.  We’ll see how it goes.

I also had a chat with the nutritionist.  She me some ideas and suggestions for helping get more nutrition into him.  (for example, tonight I gave him baked chicken wings (his favorite part) and steamed potatoes and green beans.  He ate the chicken, ate *maybe* 2 bits of vegetables.  Then ate a nectarine; or at least, part of one and claimed it had a bug).  I’m going to try making smoothies with protein drink plus extra protein powder, and add banana and blueberries. 

When we left there, I went straight to the grocery store.  It was too hot for him to have to sit in the car too long, but the car indicated it was running low on water (even though it did not appear to be overheating).  So, I tried to hurry and just get what I needed for a few days.  We stopped at McD for a sandwich, and came home.

He got out of the car without any problems today.  But he got a coughing spell, which turned into gagging and heaving, before he could eat his lunch.  Then he laid down the rest of the afternoon. 

This evening the UPS truck brought me a package (some plants I had ordered).  He backed into the satellite dish … and I now have no internet.  I am Furious!!  I called Hughesnet, and was transferred 3 timees.  I couldn’t seem to get anyone to understand what I was saying the problem is.  Finally, a guy “got it”.  Though I have “insuance”, it doesn’t cover this, so they’re going to bill me $125 for a tech to come out and reset the dish (which means turning it a few inches to get the signal).  And they can’t come until NEXT WEEK.  I am So furious … 4 maybe 5 days without internet???

Day 10

It's early (relatively) in the morning, but I wanted to get a few thoughts down.  I got a call from a lady with "Paliative Care".  Well, as far as I'm concerned, this is just another program someone made up to suck more $$ out of us.  It's "covered" by Medicare - meaning more 20% co-pays from us.  

I let her set an appointment for Tuesday morning for an assesment.  I wonder how much that will cost to be told he doesn't qualify???  I did find out something "interesting".  She said the reason he doesn't qualify for hospice is the dialysis.  It seems that even though he has the chronic rejection, they still look at the ESRD becaue it was a by-product of the lung issue (because it was caused by the drugs).  So, he will NEVER be qualified for hospice unless he stops dialysis.  And I plainly told her, IF thaat were to happen - unlikely (unless he had a massive heart attack or something and was in a complete vegetative state), we wouldn't bother calling hospice becaue he'd be gone before they could even respond; and there wouldn't be enough time to bother with them.  And frankly, I still feel a bit kicked in the gut.  If anything were bad enough to stop the dialysis, the last people I would want hovering around are a bunch of strangers!

We have to get to town for Jimmy's weekly appointment with the dialysis nurse.  I had hoped to get out in time to go by the dump; but that isn't going to happen.  I don't even know if he'll get to his appointment in time.  At least I can cut out a few of the errands today.  Brent, Cindy, and the kids are coming this weekend, and I'll have a chance to get out and do errands without worrying about him sitting in the car.  

Perhaps I'll write more later tonight, depending on how the day goes.

Day 8

This day isn't even over yet, but it's been not very good at all!  

To start with, this morning Jimmy for whatever reason (and who can know what goes on in a damaged mind?) decided to "help" me by disconnecting his dialysis.  No mask, no sanitizer, and no cap on the exposed catheter~!!  Fortunately (for him), he didn't even disconnect correctly, and left the "pin" still in the catheter ... so at least it wasn't actually exposed to air.  Never the less, the dialysis nurse came out this afternoon and set up his dialysis for tonight with antibiotic in the bag that will stay with him tomorrow.

Earlier today I called the hospice lady.  She said she hadn't seen anything to qualify him, so had given the paperwork to her supervisor.  Great.  After all the worry and encouragement, we find out this.  She called me in the late afternoon (while Doreen was here) to say they denied him.  I'm so depressed - I just feel like we've been thrown away.  I get no help from anyone anywhere anytime.  The kids think coming to visit is "helping".  They have no clue how much I have to do or how stressed I am.  I guess the good part about his mental status is to not worry about anything.

But, one of the advantages of hospice would have been that he'd be allowed to have oxygen even if he didn't qualify by Medicare guidelines.  And yet .. part of why he's turned down is that he's not bad enough off to actually qualify for oxygen.  Is that supposed to make sense???

Doreen, and the dialysis center social worker, Brenda, are going to try to get more information.  I've sent them contact information for the pulmonologist and the coordinator at the transplant clinic.  They want to make sure that the hospice people have adequat information.  But seriously .. I just have a feeling that budget cuts have eliminated us.  We just don't fit in anywhere.  And if I can't get a break, I just don't know what's going to happen.

Day 7

Day 7 was Monday, but it's now actually Tuesday morning.  Before I could really get my thoughts together, I got interrupted.  That happens a lot, especially in the evening.

Jimmy woke up about 300 am Monday morning, and whatever it was making him sick Sunday seemed to have run it's course.  He was no longer warm to the touch, and said his stomach didn't hurt any more.  But, I ended up staying up with him an hour - so not such a good night for me.  I did get back to sleep; and barely woke up in time to take him the early pill.

Then I had a big mess in the kitchen to clean up, and laundry to do.  And it was a dreary rainy day, so I was not at my best.  I could not persuade Jimmy to get out of bed until well after noon.  Even then, he kept dawdling - it was 2:00 before he finally got up and went into the living room.

Since his "schedule" was off, he was wanting to go lay down again at an awkward time.  At 6:30 he said he wanted to lay down until 6:15.  I had a hard time getting him to understand that it was already later than that!  But, I talked him into waiting for dinner.  (I fixed pork chops, one of his favorites, and he ate the best he has in 3 days!).  I did get dialysis set up; but by 8:00 he was insisting on laying down.

About 9:00 I went in to get the dialysis started.  Some how during that hour he had an attack of stupid.  Yes, I know, that's very rude - I just don't know what else to call it.  The tip of his catheter is to be soaked in a cleaning solution (that has bleach in it) for 2 minutes before I connect it to the tubing and start the cycler.  When we were initially taught the procedure, they just take a packet of 2X2 sterile gause pads, open the top, pour in some solution, the just stick the catheter tip into that and hold it.  Early on I figured out that putting the packet of gause into a plastic cup was safer.  Normally he just holds the cup, with a finger holding the tubing so the tip doesn't fall out.  
So, I go in to get the soaking step started.  First he takes off the BIPAP mask.  Then he's trying to find the catheter on the mask.  What??  So, I get the catheter for him, put it in the cup, tell him to just hold it.  And I leave the room for a few minutes.  When I got back, he had taken the catheter out of the cup and was trying to figure out how to attach it to the BIPAP mask.  
Honestly, I haven't seen him that confused in a long time. :(  What happened during that hour nap???

I got the catheter back in the cup; held it and told him to put the mask back on (that took awhile because he couldn't figure out which was was right side up).  By then it was long enough, so I went on and connected the dialysis tubing and got the cycler started.  

I went back about 10:00 (more pills), and in that hour he had managed to sit up and get undressed (and considering he's been having a hard time with dressing and undressing lately, I consider that a good accomplishment) and put himself to bed. He was able to sit up enough to take his pills and drink some water.

And then, it was a quiet night.

I keep thinking I need to get things back to "normal".  Is this the "new normal", or as normal as it's going to get now?  I thrive on routine.  I need schedules and lists, and without them I flounder.  So this is really wearing on my nerves.  Not knowing what to expect - from hospiece, from family, from him - is making me even crazier than I already am.

Day 6

There's been no real point in writing anything for a few days.  It's just been a lot of same ol' same ol',  at least up until last night (as far as I can tell).

I never heard back from hospice on Friday; and didn't really expect to over the weekend.  So, still in limbo, waiting.

Yesterday was my once-a-year treat from TGF.  She took me and her mom out to a play.  We went to see "Sister Act".  DSS and the boys stayed here with DH. I had set up the dialysis before leaving; the only thing DSS had to do was give him his evening pills.

Well, turns out DH got to feeling bad.  I don't know what (if anything?) happened.  He just said he felt bad.  He went back to the bedroom (to use the commode first); when DSS went back to check, he (DH) was laying down.  He didn't want to eat anything.

When we got home, around 12:30, I tried to get DH to sit up enough to undess and get "in" bed (he was laying on top of the covers).  He managed to kick his shoes off, but never moved.  I finally hooked up the dialysis, put a blanket over him, and went to bed.

The alarm went off around 2:45 (don't know why); and again about 5:00 (still don't know why).  At 7:00 he called me; when I went to see what he wanted, he asked me where he was.  This is NOT a good sign.  But I talked to hiim a few minutes, then he went back to sleep.  I was awake by then, and did a few things I needed to do.  

At 10:00 I took him pills; he did manage to sit up, but after getting down about half the pills, he got nauseated and gagged.  Fortunately, he can't throw up, but he heaved and gagged a lot.  I put an anti-nausea pill with the rest of them, which he did manage to get down with a can of protein drink about a half an hour later.

Then he decided to get up to sit on the commode (and this is when he finally took his jeans off).  But, he refused to let me come help him stand back up, and ended up on the floor again.  Fortunately this time he was mostly on his knees, so we did get him back on the bed.  Once I got him sort of straight, I got him actually under the covers and left him alone for a few hours.  During the afternoon I took him a pot pie, which he did eat (though he "toppled over" a couple of times and I had to help him get upright again).  Then he laid back down.  It's now 7:00, and he's still down; says his stomach hurts.  It's the first he's been specific about something hurting.  Now I'm wondering if he's gotten another infection already.  That terrifies me - although, not as much as wondering if he'd had another heart attack!

At this point, my plan is to (1) call hospice if I don't hear something by noon, to find out what's the status; and (2) call or email Doreen (dialysis nurse) first thing in the morning to see if she can come out and give him a dose of antibiotic (just in case!).  I'm also going to use collection bags instead of just draining outside.

This has not been a great day, and I admit - I'm tired and discouraged.  And a touch guilty because *something* happened the one night I went out. :(

Day 3

Well, it's been an unusual day.  A front is coming in, and weather effects me (S.A.D.)  It's like I can *feel* the change in air pressure.

Anyway, today.  First thing this morning I got a call from Melodie, the hospice lady.  She had not yet received the medical records they need from Duke.  By mid afternoon when I still had not heard anything, I sent another email to the coordinator.  I thought I might have used the wrong email before.  Just before 5:00 I got replies from both of my emails.  He said he had faxed the requested forms (but it was too late in the day to be able to call Melonie to confirm she got it).  Also, he gave me a very detailed explanation of the areas I was unclear about.  The thing is, there's a difference between "actue rejection" (which did not show up in the boncostopy, and is treatable) and "chronic rejection, characterized by progressive decrease in lung function (which he has), and is not treatable.  It's the "chronic rejection" that makes him eligible for hospice.  That also means that if he developed "acute rejection" either it would remain untreated; or he would be discharged from hospice if he got treatment.  But, on hospice, I can't imagine any doctor would order a new bronchostopy anyway.
Now, I just have to wait to hear from the hospice people for the next step.

So, other than that, how was this day?  Last night we were very late getting things started.  Jimmy insists on staying up late (after sleeping all afternoon - knowing he won't sleep all night, especially if he goes to bed too early).  But everything moves slowly; and he almost always decides once he gets up that he has to sit on the commode before bed.  For an HOUR. :(  So, it was actually after 11:00 before I finally got him settled in bed and the dialysis started.  Fortunately, once we got that far, it was a quiet night, no alarms.  
I was SO tired ... I didn't wake up until 8:30!!  I Never get to sleep that late!  But, I had to go take him the early pill, and then get my morning started.

Even after the treatment ended, he didn't want to get up  I ended up getting mad at him.  I realize there are a lot of issues; but he knew perfectly well what he was doing when he chose to just stay in bed "because it feels so good".  It was noon before I finally got him to get up, and got him into the bathroom for a bath.  When he was done, I went in and scrubbed his hair good too.  Then I got him back to the bedroom, where of course he slept the rest of the afternoon.  
I cleaned the bathroom.
And did 3 loads of laundry (actually, there's a load still in the dryer - will fold it tomorrow).

He got up a bit earlier than he usually does from his afternoon nap.  After TGF and the boys came by, I fixed dinner.  Oh, no, wait.  Before that, DSS came by.  That was interesting!  He told Jimmy all about an on-going issue with *other family members*.  I was surprised he told it!    He's very mad; to be honest, I am too.  But, that's a discussion for another time, as long as it doesn't end up effecting Jimmy.

So, that's where we are tonight.  Waiting for the hospice people to review the medical records, and then determine if Jimmy will be admitted or not.

I'm really not very good at waiting!

Day 2

I suppose "technically" it's not day 2 since we're still waiting to hear from the hospice people.  I have no way of knowing how long it will take for TPTB at Duke to provide the requested records.

But, I might as well document, to some degree, the day by day progression.  I probably will not write something every day; only when I have time, inclination, and want to record my thoughts and observations.

I do hope it won't be long before we hear something - it's very hard living in "limbo".

Last night's dialysis was a disaster.  The problem really started the night before (Monday night/Tuesday morning), but I didn't realize it.  I did notice there was more excess solution to throw away, but it just didn't register.  Then last night, he wouldn't drain.  After 45 minuites, and only draining 15 ml (I thought it should be 2500+)  It finally sunk in that the reason for the excess solution was that the machine mysteriously repogrammed itself, and skipped the last fill cycle.  So, we tried to bypass.  But only 500 ml into that phase, and Jimmy said he was in pain, so I stopped the machine.  He sat up for awhile in pain, and was nauseated, choking and heaving.  Once he felt better, I started over with a new cassette, and programmed it to show no fill ... but again, 45 minutes later it alarmed with only 15 ml drained.  It was by then well after midnight, so I just turned it off.

This morning (way too early) we went in to the dialysis center.  The nurse couldn't really give us answers; but she was able to get several cycles done.  She also reprogrammed the flash drive, so hopefully whatever made it change is now fixed.

Meantime, Jimmy is not having a very good day; but a lot of that is from getting tired.  He took a 4 hour nap when we got home.  He didn't want to eat, so I gave him a protein drink.  When he woke from his nap, he was asking if it was time to go.  Go where? I ask - go to exercise.    I really have to learn to be patient; I just calmly explained that it's just a Wednesday night, and we're not going anywhere.

I fixed a dinner he would normally like - cube steaks with gravy - but he's barely eaten.  The nurse said we should use heparin in the solution tonight (he normally does the injections because my vision is too bad to do it).  He was trying to tell me that the heparin doesn't "keep", and that earlier ones have to be thrown out.  Again, I (patiently I hope) explained that we only inject the exact number of bags of solution to be used that night, never any "extra".  I'm not even sure if he understood.

There are also some family issues in the background causing a lot of stress; but I won't go into the specifics now.  If they become serious problems, I may want to "talk it out".  Otherwise, it has no bearing.

I guess thata's all for tonight.  I'm exhausted (up too early - got shopping done since we were out -spent too much time in the yard, although I didn't actually "do" anything (my friend did) - supper. Ad still have to finish the dialysis set up.

Day One

Technically, this is not the first day.  But today I signed the permission form to get medical records; so things "officially" move forward at this point.

The word "hospice" was first tossed at us back in February.  Thinking back, I guess it's kind of a surprise it wasn't mentioned earlier.  At a regular clinic  aplpointment in February, Jimmy's lung function was decreased.  The word "rejection" was said to him in some context.  Unfortunately, I had an eye appointment at the same time, so wasn't with him to see the doctor.  And his son, who I *thought* would be there, got misplaced.  So, we have only his "iffy" memory and the summary I later received to go by.  At his next dialysis nurse visit, he told them he'd been told he had rejection (again, I don't really know what he specifically said).  At that time I was presented with the option of hospice.  Well, of course, my immediate reaction was that they were over reacting, we were nowhere near ready for anything like that!
He was scheduled for a bronchostopy (sp?).  The results I later received stated "no rejection".  Meantime, he developed an infection.  We ended up taking him to the hospital again - not directly because of the infection (because basically, the hospital did the same thing the dialysis nurse had been doing, giving him antibiotic in the dialisate).  He was having some severe confusion issues, and his doctors wanted to run additional tests.
Now, for years he's been being told that his loss of memory and balance  were side effects of the anti-rejection drug he's been on all these years.  There are other drugs available, so we'll probably neveer know why they never tried a different one.  So, many tests including neurological were done at the hospical.  We were finally given an official diagnosis of "vascular dementia".  We are told it is a result of the drugs plus "mini" strokes over the years.  His general health - including mental - is gradually declining; but every time he gets sick, everything takes a drop down before continuging the gradual slide.
Once we had a diagnosis, I pushed to get him home.  There were doctors who were not completely in favor of sending him home (as opposed to live-in rehab or even a nursing home or similar facility).  They warned me it would be hard ... he should not be left alone due to confusion plus high fall risk.
When he was discharged from the hospital, hospice was mentioned again.  But, I was told he wasn't eligible due to being on dialysis.  One doctor even told me that they were doing nothing medically for him, were merely keeping him alive (with the dialysis).  She implied that she though we should "pull the plug".  I was not impressed (to be fair, she was nice, and perhaps she didn't realize how she was coming across).
After a couple of months of extreme stress (it's really hard to never leave the house except when he has an appointment, which then involves the hassle of getting him in and out of the car, plus having to just sit in the car and wait so I can run errands, pick up medicines, get groceries).  Then the dialysis nurse broached the subject of hospice again.  She said she thought the information I was given was wrong, so I OKed having someone contact me.
Last Friday a nice lady, Holly, came out and she and I had a long conversation.  She was able to answer a lot of questions.  Then I spent the weekend talking things over with Jimmy.  He may not remember much of what was said later , but he did seem to comprehend while we were talking about it.  I'm completely satisfied that he did understand (as best he's able) what would be involved and is OK with the whole process.
Carl came over last night, and had a discussion with him.  His concern (same as mine) was that his dad not think we were just giving up on him and throwing him away.  He was also satisfied.
So, as I said, today I signed permission for medical records.

I will try to use this blog to track progress from here on out, however long that is (or until my vision no longer allows it).  I will appreciate any comments; if anyone has experiences or information other than brief comments, please send to  olgramy@inbox.com

And if anyone is wondering why the odd name ... I had a hard time finding a name that was "acceptable" to Google! LOL!