Day 158

Day 158
Tuesday October 29, 2013
Physical:
Over the last week or so, DH had spent much more time in bed than in the ast.  On Tuesday he only got up around 9:00 PM to use the commode.  And even then he was weak enough that getting him back on the bed was harder than usual.  He's feeling better than over the weekend, but just doesn't want to bother getting up.  During the afternoon he had the TV on, and dozed off and on.  He didn't communicate enough to see if he was disoriented or not, but only seemed to be a little "off".
His appetite is lower to the point that he only seems to eat one meal a day, and it's usually not a big one. Occasionally he does better, especially if it's something he likes a lot.
People:
The CNA came very early Tuesday (that meant DH wanted to stay in bed longer, which might be why he never wanted to bother to get up).  Late in the afternoon the neighbor girls came over .  It's very disturbing ... the storm door was locked and the wood door pushed mostly closed.  They jiggled the storm door until they forced it open and just walked right in.  I hope I get the signs soon!
Wednesday (today) the nurse came very early, so I'm including this since I'm very late in the morning getting to recording this.  She backed up my decision not to give DH the appetite stimulant.  She explained that as he gets weaker, his body is gradually shutting down, and he simply needs less fuel.  She also agreed with my *guess* that part of what's going on with him is relaated to the kidney failure.  I had originally assumed that any toxin build-up would result eventually in another infection.  But, it could be that the toxins that don't get drawn out by the dialysis could be going to other parts of his body.  That totally makes sense, in that those toxins would also contribute to the causes of the dementia.  But it also affects (effects?) his strength, his appetite, etc.  Yes, this is all a bit of guess work; but at least I have a professional opinion that it's likely this is what's happening.  
The nurse said that even though he is only qualified for hospice  with his lung disease (chronic rejection) (and according to the social worker, if the lung disease reaches a plateau - even though we know it could only be temporary - he'll still qualify because of the dementia), the kidney disease is likely to be terminal before the other things are (unless he has another heart attack).  
Another thing discussed with the nurse this morning is the clinic visits.  She is going to contact the dialysis nurse (as a starting point) about why does DH need to actually go into the clinic.  Even though he's not on hospice because of the kidney disease, he is nevertheless on hospice.  The doctor *should* only need to see the labs without needing to see him in person.  It's like the clinic is ignoring his physical limitations.  Unfortunately, my suspicion is that they will insist he has to come in in person - and their "solution" is for him to be transported by EMTs.  Of course with no regard as to how expensive that will be.
It's all too much to think about.
Emotions:
The insurance issue has been taken care of, so that's a relief.  Last week at clinic when the social worker insisted on discussing what my future plans are (which I thought was awfully tacky to discuss in from of DH, even though I doubt he remembers any of the discussion), I really didn't say much.  But a few weeks back the CNA did put an idea in my head.  When the day comes that I'm alone .. and hoping we've not been forced out of this house I love before then... I could consider taking in a "housemate" who could exchange assistance with what I would need (cooking, ride to store or doctor, etc) for room and board.  Lots to think about there; but with at least an idea, I will quit worrying about it.  Or rather, quit worrying about people insisting on asking me.
On the other hand, I got some news that made me feel very sad.  I'm trying to just not think about it, as there's nothing I can do.  I'm not very good at just accepting things the way they are and letting the rest go.  I just feel lonely.  No one really understands what it's like to be here 24/7 (all but 2 or 3 hours on Sunday).  Nurses and CNAs and others pop in and out, and while they're here I feel briefly brighter.  But they leave.  The family (kids) that are supposed to be helping out really don't gras what it's like.  DSS is starting to get a picture; but he has his shop to deal with (and his girlfriend who constantly nags him about bringing in money).  He worries about DH (and me to an extent), but it only keeps him up nights and gives him heartburn.  He doesn't do very much to fix the problem (he does try some at least).  DS lives too far away, and they have way too much going on.
I have friends who live too far away and have very busy lives.  I have other friends who just ignore me.
I spend way too much time feeling sorry for myself.  But, I spend way too much time doing nothing at all and feeling frustrated because everything in my world is going dark and shadowy  I can't really read what I've written (I occasiionally try to check that I don't have my fingers on the wrong keys again!).  Reading email means copy into a word doc to enlarge.  I check blogs, but mostly I go through the pictures - which are blurry, but I can sort of tell what they are.  Reading a book is out of the question; even the Kindle doesn't get big enough.  I will switch to audible books when my DIL can help me set that up.
It's all pretty much irrelevant anyway.  Whether I'm here at the computer (less and less) or cleaning or just watching (listening!) TV, or even sleeping .. I have to stop to see what DH needs.
I'm just tired.  Right now I feel like nothing much matters.