Day 38

Just a brief post this afternoon.  I'm just SO frustrated, and don't know what to do.  I don't dare get my hopes up (again) about any sort of help.  But I don't know how long I can keep up like this.

Today he just simply didn't bother to get up until way after 1:00.  I think the only reason he did then was to pee.  It was well after 2:30 before he decided to head to the living room.  So, I'm sitting in the den, and don't hear anything.  I can hear when he moves around in the bedroom through the monitor.  And when he gets to the living room I can hear the walker creak; and I can hear when he turns on the TV.  I didn't hear anything, so go to check.  I find the walker in the middle of the only "open" space he has to navigate - and he's laying flat on the floor in the doorway to the front hall.  I asked what happened, and he says he tripped over his feet.  Honestly, there isn't anything there for him to trip over ... I've moved and rearranged things many times to accomodate him and the walker.

We finally managed to scootch him on his butt up to the chair.  He insisted he had to have his "air" (absolutely nothing anyone says will convince him he's not getting someething "extra" through the BIPAP) and then he could get up.  He did, finally, manage to get turned over and on his knees, and then into his chair.  

So what am I to do?  I simply cannot watch him every single minute.  And he refuses to call me for help.  He says he doesn't want to "bother" me ... and yet, can't seem to grasp that it's a hundred times more "bother" when he falls.  And one of these days I'm afraid he'll fall and actually get hurt (once, over a year ago, he did have a small fractured ankle which resulted in being in a wheelchair for 2 months).  If he has a fall and gets hurt, will someone (TPTB?) decide I'm no longer able to take care of him?  What happens then?  Medicare won't pay for a rest home/nursing facility (not more than something like 20 days - not "permanently").  We don't seem to qualify for any assistance (and as I said above, we're waiting to hear something but without a great deal of hope; and in any case, we won't hear anything until after he sees his PCP next week and gets her to agree (or rather, the doctor she works under) to place the hospice order.  (we are thinking there's a possibility that the last time part of the problem could have been that the orer came from a nephrologist.  Since he doesn't have anything to do with lung issues, and the kidney issues "don't count", perhaps that was a bit confusing?).  

And just a minor "side note" for today.  This morning the power "blipped".  It was only for a few seconds; but that was enough to make the dialysis machine go off.  When it came back on, it did not go to the screen that asks if I want to "resume" treatment or "cancel".  It just started over.  .   It had run through the entire cycle except the final fill.  So, he spent one day without fluid dwelling.  He's had to do it before, like when he has a test or something.  I made sure to set the machine to "no dwell" tonight, and go from there.  Very annoying how we never lose power during storms, yet do for no apparent reason!

Day 35

I don't even know if I'm counting days right or not - and I don't know that it really matters anyway!

Yesterday the nurse, Lucy, from Paliative Care came for a follow up.  I fully expected her to say she wouldn't be by again, based on what she had told me the last time.  But I admit, she surprised me.  She said that just that morning she had talked to someone who said they still think they can get Jimmy admitted into a hospice program.  First they'll have to have an order from a doctor.  I don't think that's a problem; we can probably get an order from the nephrologist.  But, I think more practical would be an order from his PCP.  He goes to see her next week anyway.  Actually, she's a PA ... but the MD over her would sign based on her recommendation.  Anyway, after getting that, they'll send someone out to do an evaluation.  The previous attempt didn't get that far, so we'll "wait and see" this time.  I explained to her (again) that the problem before was that all his conditions were "tied together" because of the original lung problem.  Nothing has changed in that regard.  She feels that if someone comes to do an evaluation (apparently as opposed to just looking at the paperwork Duke sent), they will see things differently.  He's extremely weak, especially on the right side.  He falls frequently no matter how many precautions I try to take.  He insists on using the BIPAP nearly all the time, because he feels short winded, out of breath.  Obviously he *can* do without it at times: it doesn't go with him for doctor appointments.  But we never go anywhere else (other than he has to just wait in the car while I run errands while we're out because it's rare to get to do them any other way).  When we get home, he's anxious to go lay down and get that BIPAP going.  (the nurse said that when someone comes to do the evaluation, he should be wearing that ... not to "mislead" them, but just so they are aware of how much he has gotten dependant on it).

So, we are once again in a holding pattern to see what happens next.  Since he goes to dialysis clinic today (at least, I hope he does - dialysis has taken about 2 hours longer than it should; apparently only because he was laying on the wrong side!  So it's making our time frame really close!).  I'll request another hospice referral while there, although I don't think the doctor will be there today.  Then we still have to wait 3 more days until his appointment next week to discuss the issue with the PCP.

I'm still not convinced it will work out this time.  I suspect that if any agency does decide to accept him and disregard the dialysis, it won't be until his lung function is low enough to qualify for oxygen.  I have no idea if he's there yet or not   He's not as short winded as he thinks he is most of the time; but when he gets up to walk, that could be a different story.

Day 28

This has been an odd sort of up and down day.  This morning Jimmy didn't want to get up.  When I went in at 10:00, and told him he needed to roll over so I could do B/P, he just ignored me and stayed right where he was, all covered up. I just wasn't in the mood to argue so I left the pills and left the room.  I went on in to get my shower (and slammed the bathroom door.  There's something so satisfying about slamming a door when I'm upset! LOL!)  When I got out, he had gotten up, got dressed, took the pills - and then lay right back down.  
Later I told DGS to go in and talk to him since he wouldn't get up.  I don't know what he said .. but grandpa not only got up, but he walked all the way to the porch (more than twice the distance he normally goes at any one time).  He sat in the rocker on the porch all afternoon - I even took his lunch out there to him.
While he was out there, DGS helped me clean the area around the raised wood porch, and we took a load of trash to the dump.
Jimmy was tired and ready to come in and have the BIPAP on again. 
He ate a good dinner - because I fexed him somethng he likes (chicken wings).  He only eats well if he gets exactly what he wants to eat.  Not always easy!
Just before 9:00 I heard a change in the sound of the BIPAP (I'm in the next room over).  I went in to check, and he announced he was going to bed.  He frequently does that: just announces he is going to do this or that.   Maybe it's mean of me to make him *ask* for help - but as long as he's actually able to understand that and do so, I will hold out for some degree of respect.  But as we were getting him up - much wobblier than usual, but could be still tired from unusual activity - he started talking about how the room at the other end of the house didn't feel right.  When I asked what room he was talking about, he said the one he slept in last night.  
So OK, he's tired, so a bit disoriented.  It still tends to freak me out a bit; but at least I don't get mad at him over that.  I try (as near as I understand from what the therapists have said) to patiently explain that he's just a little mixed up, and what room is where or whatever it is that has him disoriented.  He doesn't really believe me, but he doesn't argue.  Sometimes that's as good as it gets.
So, as I said, a lot of ups and downs.  We know he isn't sick ... we were clearly told yesterday at his clinic visit that he does NOT have any infection.  The doctor discontinued the antibiotics (although only one dose was still left anyway).  
And so it goes.

Day 36

I started this blog to record Jimmy’s progress (or lack thereof); and a place for my feelings (though I need to be careful not to just come here to whine and complain).  In order to not be just a gripe session, I’ve backed off writing much.  But, it’s dawned on me … what difference does it make?  I’m not asking for or looking for followers or readers.  And, while it says I have 2 followers (don’t know who they are), when I check Google stats – it also says there have been NO views.  So if no one is even looking, I can say anything I want.

The weekend was pretty good.  We had Father’s Day on Saturday (the idea being that the boys would rather be home with their own kids than with their dad on the actual day).  DS and family got here early afternoon and spent the day.  DSS and crew came in the evening (an hour late, as usual).  So there were 12 for dinner, but I had enough.  And we all played a card game – 9 of us, ranging from 10 to 66!  I think Jimmy really enjoyed the day.  Of course, on Sunday he tried to sleep all day.  And on Monday. L

Sunday night, getting him up from his chair in the living room to head for the bedroom, we had a mishap.  He’s not able to remember instructions on how to do things safely; and in his mind, he’s perfectly able to just get up and walk where he wants.  So, after getting him standing, instead of standing still for a few moments to get his balance, he starts whipping the walker around.  He goes too far around too fast, always.  This time he didn’t have his balance – and he cannot grasp the idea of leaning forward, holding the walker, to get his balance.  Instead when he feels wobbly, he just lets go.  Usually it means he falls (hard) back onto the chair or bed.  Only this time he had already started turning … so he missed the chair, landed on the arm of the chair – and just flipped right over it onto the floor.  I had to call DSS to come help me get him up again. 

On Monday the nurse came to do a round of antibiotic.  She called at 11:00, and wanted to come right then!  I told her he wasn’t even up yet.  That seemed to bother her – well, too bad.  We’re old, we do NOT have to get up early just because she does.  (well, he doesn’t anyway).  She ended up coming a little after noon.  I didn’t see much of her (she came to the front door; and left by it too, without saying anything to me).  She did tell me that the tests were showing he has NO infection.  She said they’ll check with the doctor (he has to go in tomorrow) if they’re going to give him the last 2 doses or not.  I wonder what’s going on … how can there be a “false alarm” about something like this?  How can I trust them???  I’m extra glad now that I made him an additional appointment for the 26^th (since I have to go for my appointment, and couldn’t find anyone to stay with him)  It does make me feel less …. Not sure of the word I want.  Ineffectual?  I had not seen any of the “usual” signs .. no confusion, no additional lethargy, he hadn’t even said he “felt bad”.

I’m just so exhausted.  He does what he wants, when he wants.  I am “on call” 24/7.  The kids all think they’re “helping” by coming to visit.  Well, it helps in that Jimmy likes having company and is more animated, more interested in what’s going on around him.  But it does nothing to help me (in truth, it makes more work, what with cooking and dishes).  They have absolutely no concept of what it’s like to have to do absolutely everything.  At times I have to help him undress even.  I can’t leave him alone, and basically none of them really have time to do anything.  Carl has come a couple of times so I could go to the grocery store (but unless I’m desperate, I hate to ask, because TGF is always complaining about the time he spends away from his shop, which means he isn’t making any money.

Last night the alarm went off around midnight.  He had somehow gotten his catheter tubing wrapped around the elastic belt he wears (to keep the tubing from just dangling when he’s not on the machine).  So, got that straightened out.  But then I couldn’t get back to sleep.  It was well after 4 AM before I finally got back to sleep.  I woke up around 8:00 (and I could swear I heard my GF call me, that’s what woke me up!).  So of course, there’s dishes and pills to take care of.  And the alarm has gone off 3 or 4 times this morning – something is wrong with the last drain, it’s taken well over 2 hours so far (normally under half an hour).  I told him he HAS to sit up and take his morning pills (he doesn’t seem to want to wake up this morning either – but he gets the “option” of staying in bed.  I don’t).  I’m hoping the change of position will help the drain go on and finish (I just can’t get him to change position in the bed).

So, it’s much later in the evening now.  I just walked away for the day.  He was a bit late, but did finally get up.  During the afternoon he asked me to bring in the BIPAP; but at least he went several hours without it first.  (later I walked by and saw him completely dozing!).

It’s at the edge of dark.  I have to go put food away and get dishes into the sink.  Dialysis set up is done.  He’s probably going to be ready to head for bed in half an hour or so (but seems like it takes 30 to 45 minutes most nights to get him settled and hooked up).  But it’s time for me to walk away from the computer for the day anyway.

Day 28

I haven't written for several days now.  While I am recording my feeling, I don't want to turn this into just a venue for complaining.
Last Thursday when Jimmy was at the clinic they said his fluid was "cloudy" (I think I mentioned it in a previous post).  Over the weekend he's been very lethargic, weak, and refuses to give up the BIPAP for more than a few minutes at a time (I insist he take it off when moving from one room to another - so afraid it would be a trip hazard!). This morning he said he felt like he was trying to breath under water.
Also, his B/P has been going up and down - but then, it's always been doing that.

This afternoon the nurse called.  They had the results of the fluid testing, and wanted to come by to give him a dose of an antibiotic.  When they (our regular nurse, Doreen, plus one she is training, Barbara) got here, Doreen said the tests showed something about white cell count.  I didn't really grasp it (I got the feeling she didn't either); but any way, the doctor ordered the antibiotic for 3 days a week for 2 weeks.  She's trying to see if the Paliative Care people will consider handling that .. I sort of doubt it, as it doesn't seem they do anything helpful.  Doreen also seemed to me to imply that the doctor ordered the antibiotic but she didn't necessarily agree.  But, it might just be she's not happy about having to come way out here so many times.  Again.

I'm hoping the round of antibiotics will perk him up.  But I'm also concerned, because no matter how careful I try to be, he still gets another infection.  It's depressing and discouraging.  (DGS told Doreen he thought the peanutbutter made grandpa sick! LOL) .. because seriously, I try SO very hard to do everything right.  I'm super conscious of masks, hand washing, sanitizer.  I don't know what else I can do.  I'm also afraid that if he keeps getting infections every few months, eventually (sooner rather than later) a doctor will start trying to insist he go back to hemodialysis.  He's said multiple times he does not want to do that.  It would be a major issue on so many levels!  They can't force him to accept the change of course.  But they can refuse to continue to accept him as a patient.  If it came to that, I guess he'd agree to the hemo - but then he'd be so miseerable.  And if getting him to eat now is a challenge, I can't imagine how much harder it would be with those restrictions!

OK, I don't need to "borrow" trouble.  For today, this is just a brief update.

Day 24, cont.

Jimmy had his weekly appointment with the dialysis nurse today.  It took an extraordinarily long time - I didn't find out until he was ready to leave that they had done a manual exchange (never occurs to anyone to come let me know what's going on).  They said his fluid was "cloudy" and also he had some fibrin.

The nurse knows the heparin is an issue for me, so they gave him some in the exchange.  I don't know if that will be enough or not.  DSS came very early to pick up DGS ... again, never occurred to anyone to let me know he'd be coming early so I could get the bags set up for him.  I think he truly has no clue how important it is to his dad.  But then, even if he does, I think they all just think it's MY job.  They'll help out ... IF it's convenient, and IF it's something they're willing to actually do.

The cloudy fluid could mean an infection (they'll let me know as soon as they get test results).  That would explain why he felt bad yesterday.  But there's no way of even guessing where an infection came from.  I suppose that's probably my fault too, since I have to do everything.  I try so very hard to be super careful; but apparently it isn't enough anyway.

As soon as we got home he laid down.  He said for "an hour"; but it was 1:30 to 4:00.  Then I warmed up one of the pork chops.  Around 7:00 I heated the other one and a baked potato.  As soon as he was done eating, around 7:30, he wanted to go back .. but then he did wait until 8:00.

At 8:45 I went on and hooked up the dialysis (which, fortunately, I had set up earlier.  Seems I have to seet it up earlier and earlier).  He hasn't even gotten undressed.  I won't be surprised if I go back at 10:00 with pills and find him still lying on top of the covers in his clothes.  When he doesn't feel good (although he's not said a single word today about not feeling good, just needing air, but that's normal every day now) he's not willing to make any effort.

And because he's not willing to try, or to make any effort, I foresee the time coming when I can add getting him in and out of depends, bed-bathing him, etc.  I suppose we'll eventually have to have a hospital bed for him.  And if he continues to get weaker (because nothing has ever convinced him that exercise prevents weakness, and now I have serious doubt about what he's even capable of doing), we'll have to get a hoyer lift in order to get him from bed to wheelchair for appointments.  How we'll manage from chair to car and in reverse is completely beyond me.

I guess I won't have any chance to get out again for a couple of weeks.  DS & family are coming again; I don't know yet if for the day (day before Father's Day) or an overnight.  If it's only for the day, I'm not likely to get away, because I'll haveDSS & his crew here too.

I guess I'm just going to have to wait and see how things work out.

Day 24

It seems I write more in the morning than in the evening.  I have more time (since I wake up too early); my eyes aren’t as tired; and in general, I’m in at least a little better mood.  I know I seem to be turning the blog into a whine-fest.  I don’t mean to do that … but I seem to be writing more about my reactions to any given situation than the actual situation.

Yesterday was not a very good day.  To start with, the morning B/P was very high.  If it stayed that high several days I’d definitely be contacting a doctor (haven’t taken it yet today of course).  But, Jimmy got on up (DGS was here).  At lunch time I made him 2 sandwiches, but he only ate one.  More food wasted, as the other will only get eaten by the dog.  By 1:30 he was wanting to go lay down.  Well, that’s pretty normal.  I was waiting for GF to get here, so that with GF and DGS here, I could leave for a bit. 

There was a slight hitch to my plan.  When I went out to start the car, the battery was dead.  I’m quite sure I must have accidently left an inerior light on (when we came home Monday it had been raining).  I called DSS, and he came over and jumped it.  I didn’t actually expect him to come right away; but he said he did so I could take advantage of DGS being there.  It was around 3:00 when I finally left (all I did was go to the bank, pay storage rent, and go to grocery store.  Nothing “exciting”, but I was ALONE!).  When DSS came, he went in and talked to Jimmy before he left. 

I got home around 5:00 or so.  Jimmy had the quilt partly over him, and had asked DGS to turn off the a/c, said he was too cool.  Hmmm. 

Around 6:00 I sent DGS to tell grandpa to get up.  Jimmy wouldn’t get up – he told GDS he’d “felt bad” when he first laid down.  Well, first thing he’s said to anyone about that!  So I went back to see if he was going to get up or not, and he told me too that he felt bad.  Nothing specific, no pain anywhere, but he felt bad.  He never did get up.

I finally went on and got the dialysis set up started.  But in the middle of that, he decided he had to sit on the B/C.  I had to help him stand up to get to it (he cannot seem to grasp that he cannot remain seated and “slide” over onto something that has arms.  He continually tries to do that, in several different circumstances.  He’s very weak, but also not willing to make any effort).  I had to wait – nearly an hour – before I could finish the set up.

For awhile there I wasn’t sure if I should call DSS to come take him to the ER.  I was so stressed .. I just HATE being in the position of trying to figure out what’s the right thing to do.  He doesn’t seem to be able to be specific about feeling bad … I have to try to ask if anything hurts, etc.

It really felt like I was being punished for actually leaving the house by myself for 2 lousy hours.  The last time I got out (my once-a-year treat, TGF takes me and her mom to a play for Mother’s Day), he also got sick.  He stayed “sick” from Saturday night until Monday morning.  But this time I was only gone 2 hours instead of 9.  I’m not saying he gets sick on purpose; but I really do believe at least some of it is (maybe not deliberately) pouting.  And I know, even as I’m saying this, that it doesn’t make sense.  For one thing, other than all the *stuff* I have to do, he’d WAY rather have DSS’s and/or DGS’s company!

Today is his weekly appointment with the dialysis nurse.  I had to use drainage bags last night so we take in fluids (they test regularly to be sure there’s no infection as well as to see how well he is dializing).  He was also supposed to pee in a jug, but didn’t.  Anyway, since he was already up on the B/C earlier, he won’t be telling me he feels too bad to get up.  If need be, DGS and I will get him up and dressed; he WILL be going in today!

OK, getting back to this later.  The car is crammed full of trash, and we will go by the dump first.  With help from DGS, Jimmy is not only up and dressed, he’s out on the porch (don’t need to leave for 10 more minutes!).

I used to get very annoyed at this weekly visit.  But lately, seems the nurse and the social worker are the only ones I can actually talk to who seem to comprehend what’s going on, and my frustration.  There’s really nothing they can do; but they keep trying at least! 

So, we’re off for another “adventure”!

Day 23

My frustration is growing by leaps and bounds; but I think it’s just a cumulative thing of not being able to adequately deal with the issues that come up, and not being able to get out.  And then when I do get out, I have to drive.  Of course, until this stupid toe is a lot better, walking wouldn’t be a good option anyway.  But something has to change.

I love this house, and the yard.  I can’t take any credit for the yard (other than occasionally buying stuff for it).  But slowly slowly, the gardens are coming together.  Ours will always be later than everyone else’s because of the limited time GF can spend on it – even less this year, since I can no longer drive over and pic her up (I used to pick her up about 11 am; we’d go eat “brunch” at Waffle House, then come back and she’d work in the yard off and on until around 5 or so and I’d take her back.  Now she rides her scooter, but rarely comes before 2 or so in the afternoon, and still has to leave by 5 or 5:30).

The house is old and quirky, and has a few major issues (like the sagging floor and wall in the front bedroom from leaks; places in the kitchen and back hall where the floor is buckled from leaks; lousy water pressure; wonky electric in some places); and a really odd layout.  But I’ve lived here longer than any place since I first moved out of my parent’s home, and I’ve worked hard to get it decluttered (once all the kids and grands moved out) and reasonably attractive.  Right now the way we’re using the rooms isn’t as convenient (or attractive) as I’d like, but it’s what works for Jimmy.  I work around that the best I can.

And all of that to say, the down side is I have to drive to go anywhere or do anything.  And that is fast going from a problem to a Major problem.  And I don’t know what we’ll do.  DSS of course wants us to move to town.  I suppose we could manage the higher rent for a slightly smaller house; and most of my plants (but not the trees I’ve planted) could be moved or divided.  But I don’t want to move.  And I really don’t want to live where it would be SO *convenient* for me to be a free babysitter again (no, they’ll never *say* that .. but much too easy to say “just run over to grandma’s house”).  In any case, I just don’t want to live in that town.  Not only would I have to pay higher rent for smaller space; the water is ridiculously high (and not nearly as good as my sweet well water); the electric is high; and then they tax you on top of that.  And we’d have all their silly rules about what you can and can’t have in your yard.  Nope.  Just don’t want that.

And yet .. how long will I have a choice?  Jimmy  does have to have his weekly appointment; living closer to DSS *might* mean a ride ... plus some of the grands are getting close to old enoough to be able to drive.  It still wouldn't solve the problem of being able to get out ... though in theory, being closer means DSS or TGF would be able to come stay with Jimmy so I could walk to a store.  Maybe.

I just don't want to think about it right now.

DGS is here, out mowing the grass.  I have a load of laundry in the dryer to go put away.  It's almost time to go take Jimmy his morning pills and get his day started.  

Day 21

As I’ve said before, not writing every day since there’s not always much to say.  There are little things.  Like one night he went to sit on the bed, and missed, fell flat on the floor.  We got him up, but he did scrape one arm.  It wasn’t bad or deep, but he does bleed easily now; I got it cleaned and bandaged (he took the bandage off the next day, insisted it was fine.  I’m always afraid of him getting infections; but there’s no way I can force him to keep a bandage on his arm). 

Saturday some friends came for a visit.  He sat up while they were here (2 hours), and long enough for a sandwich after; but he was laying down by 7:00, and never got up again.

Yesterday DSS picked up his son at the airport.  We spent all afternoon thinking they’d come over; but not until around 5:00.  DSS was sick and didn’t come; and getting to see Michael meant we got TGF and her 3 as well as DGS.  At least I didn’t have to cook, they brought pizza.

Today TGF brought DGS over when she took the 2 little boys to school.  He couldn’t cut grass, it was rainy.  So he helped  DH get into the car, and we all went out.  First to drop off some trash, then get gas in the car.  Then we went to pay the rent.  It started pouring – really hard – on the way.  What a horrible nerve-wracking day of driving this was! 

We got the rent paid; picked up some med refills, and went to Wal-Mart.  I asked DGS to get a wheelchair for grandpa.  Well, for whatever reason he decided to get him an electric wheelchair (and I found out later they had talked about that at home last night, and he’d been told that wasn’t a good idea!).  DH had a hard time .. not good at direction, and kept going much too fast.  But he didn’t even realize he wasn’t *driving* well.  At one point DGS had to go to the restroom, and told grandpa to wait for him.  Gues what.  DH went riding off on his own … and it took DGS and I both going through the whole store twice to find him!  I was NOT a happy camper.

On the way home we also stopped at the Boost store to get my account number so I could change phones.  Geez, ridiculous how hard it was to get my own account number!  (Side note – not so sure if I’ll like the new phone; but, it has a bigger screen so I can see it better; and it’s a cheaper plan.  The rest I’ll figure out).

Right now, I just feel tired.  I’m depressed, discouraged, exhausted.  It was nerve wracking driving today (I shouldn’t be driving under any circumstances; but the chauffeur quit, so what can I do?).  By the time we got home I was SO tired; and really wasn’t able to get everything I wanted to (Wal-Mart just does not carry some of the items I prefer to get from Food Lion). 

When TGF came to pick up DGS, one of her boys was whining about “not fiar” that his older brother is out of school earlier than they are.  I nearly lost it!  I told her she needs to tell them “Life’s not fair, get over it”.  I told her it’s not *fair* that I feel like I’m in prison, it’s a major pain to get out of the house to do things that need to be done and never mind any hope of having any time to myself.  It’s not fair that I’m exhausted and frustrated and all of the family is too busy to help out.  It’s kind of like talking to a brick wall – she doesn’t “get it”. 

OK, I guess I’m just venting now.  Nothing is going to change. There’s still no word from the P/C lady – I didn’t expect there would be. There are no “rules” that apply, so we’re on our own.  I know the nurse and social worker at the dialysis center have recognized that help is needed (they see us every week, not every 3 to 6 months).  But there just isn’t anything, and I really don’t know how long I’m going to be able to hold on.

Oh, and tonight I tried to do the heparin injections.  I know DH can’t do it any more (last time he tried it took him 2 hours because he kept forgetting what he was doing).  DSS is “willing” to help.  But willingness isn’t much good if he’s not here (now he’s sick).  So, I figured I’d give it a try.  I don’t think I even got it into the syringe on several; I couldn’t get the needle into the valve.  This is another issue I’ll have to discuss with the nurse.