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???