I am writing because I need to write...
...but I can't yet write coherently about what is now going on at the facility with my mother, so I'm just going to write, just to get stuff out. My decision of yesterday crumbled and blew away when I arrived a bit before 0700 this morning at the facility and discovered that she was running a fever, 99.1, but that's a fever for her. She was lethargic. Didn't want to get up. The CNA, the one who usually insists that she arise, didn't push it. I didn't blame her. I wouldn't have pushed it either. Apparently she sweated a lot last night. Sometime in the middle of the night she was changed out of her pajamas and into one of those open-at-the-back gowns. She ate breakfast well but her enthusiasm was low. I managed to get her bathed, including in her usual position of sitting on the edge of the bed. She stood for changing, using the vanity for support. The Day Floor RN gave her acetaminophen for the fever, 650 mg, I think, which seemed to address it, but it did nothing to improve her energy level. She dozed, sitting up in her wheel chair, all morning and finally roused just before lunch. Unbeknownst to me a Urinary Analysis was called for and run yesterday. I found out about it this morning when the Day Floor RN told me as we passed each other in the hall that Mom was "negative for a UTI". Not a surprise. The woman in on maintenance nitrofurantoin. He mentioned to me that he thinks it's a pulmonary infection. But, of course, her white cell count from last week is normal.
    At 1000 Mom's temp was down to 98.2. I left to buy a thermometer (couldn't find the one we had at home) just so I could keep up on it. By the time I left her in the hands of the PT at 1400 her temp was 96.something; I forgot to record it. However, the report from the OT was that she was weak and faded quickly when standing...very little physical energy.
    As well, before I left this evening, even though I pushed liquids as much as I could and so did her therapists, even though I've been doing this daily and have been sneaking her Benefiber, as much as I can get into her, she was constipated to the point that the RN inserted a suppository up her rectum before dinner. I mean, I'm not surprised about all this. I was never able to get across the fact that at home she's on a high roughage, really low refined carb diet; she gets 6 teaspoons of Benefiber and orange juice every day; she was moving a lot more at home than she ever does at the facility; of course, this was also before the pneumonia knocked her legs out from underneath her. And, despite the fact that she is on a "carb controlled" diet at the facility, the amount of refined carbs in her diet is so high that MPS and MPNC and I joked about what "carb controlled" actually means.
    Then, this afternoon, I talked to the OT. After she delivered the news about Mom's lethargic session I asked her, trying to hold back tears because I am now so sleep deprived that I don't know whether I'm coming or going, what she thinks of Mom's prospects. She tells me, kindly but bluntly, that, considering the up and down status of Mom's performance that these recurrent "infections" are causing, her progress cannot really be called "consistent". When she isn't battling something or other she does great. But, here we are, the third week into therapy as of today, and she's had two battles with "let's not call them infections because we can't find any evidence that they are" infections without any help from Medicine, thus, her progress cannot be considered consistent. Medicare needs evidence of consistent progress. Bottom line: "Without consistent progress we need to start looking at a date..." for Mom's release. Which is weird for me because, on the one hand, I am beside myself that the facility, while promoting therapy, isn't promoting conditions that will help her progress in therapy, thus, I've had thoughts about pulling her out, but I know Mom has it in her, with even just the help of a course of oral antibiotics, to help her fight whatever keeps attacking her (it could be the mold in the bathroom that MPS smelled, which I mentioned to the staff over a week ago in writing and I'm still smelling in there) I believe Mom could rally and gain a bit more strength to build on at home. At this point, I'm not sure she has enough strength to build on.
    Besides which, how am I going to handle her at home???? Hospice is not a 24/7 service. Mom has a Home Health Care policy but, I'll tell you, considering what I've observed in the last five weeks of nursing care of all stripes at all the facilities, I'm afraid to hire anyone to help me; I'm afraid I'll be battling someone who thinks they know Mom but has no interest in what her profile has been over the last eleven years, let alone recently.
    And, in the meantime, everyone seems to blame everything on "lung cancer"...which, if this were true, would have created these patterns long before she was diagnosed with lung cancer on May 21st and it was declared that she's been developing it for probably four years.
    And then, add to that, her spectacular labs of last week. Jesus.
    And me. Ai, yi, yi, I'm concerned that I am no longer in any shape to think clearly about all this. So, again, this evening, all evening long, I've been praying, to Whatever, Whomever, Who the Fuck Knows, for some sort of intervention...
    ...and, in the meantime, I have absolutely no idea how I am going to approach all of this tomorrow...
    I need to get some sleep. I've got my alarm set for 0500. It's necessary. I'm soooo, soooo tired...and yet, I can't settle my mind down. I initially went to bed at 2115. I started this post at 2153. It is now 2230.
    Now I understand what that dream I had a few nights ago indicates...I go to bed every night doubtful that Mom is going to survive until morning. Not that she won't...but this little spin in rehab is becoming the most ridiculous medical episode we've ever experienced; and that includes her recent hospital stay, which was ridiculous beyond measure, and my dream self is taking my anxiety over it to the extreme.
    I'm ranting. I know. I think it's time to rant.
    Later.
- posted by Gail Rae @ 22:32   email  this post