"Clowns to the left of me, jokers to the right...
...here I am, stuck in the middle with you." I don't know who to credit for these lyrics. Some sources say Bob Dylan; some say J. Egan and Gerry Rafferty. To whomever, I'm grateful. They exactly express how I'm beginning to feel at the rehab facility.
    Brief summary before I try grabbing a few more hours' sleep:

    Mom has been doing well at the facility in rehab, despite the fact that it is woefully understaffed and I've essentially been pinch hitting as an unpaid aid. She was downgraded from "two person max assist" to "one person assist" on Friday. This was not undeserved. She was, indeed, participating well with transfers from bed to wheelchair, doing very well in her two therapies (physical and occupational; the physical focusing on lower body strengthening, the occupational focusing on facility, especially when performing normal, everyday tasks). Then, yesterday, she appeared to be lagging a bit. She was unusually lethargic in the morning, although I got her up, fed, bathed, in her wheel chair and fundamentally interested in what was going on around her before 1030, which is when she was taken in for a therapy session. I headed out to get some decent food for my lunch. Her therapy sessions generally last about an hour and a half. When I returned at 1130 she was already back in her room watching TV with her roommate. I tried to find out how her therapy went but all therapists were busy and the one who picked her up wasn't there. Later in the day I was able to waylay a therapist but nothing was noted about her session in the therapy books.
    Mom ate lunch and settled in for a long nap. She continued to seem a bit pale and lethargic.
    During her nap, the facility doctor finally visited us. I mentioned my concerns about the continuing of the metaclopramide, which I've been able to countermand dose by dose and was finally discontinued. I also addressed her hypoglycemia as it appeared on her blood draw, taken early Thursday morning (which also indicated that her renal functions were back to normal, a nice surprise). The low potassium that showed up on the draw had already been addressed. I was not, however, worried about the lethargy. Both the nurse and I were chalking it up as her reaction to her intense therapy, in which she has been enthusiastically participating. We were both thinking that yesterday was "just" a day when her body was letting down from all the work. I'm still hoping this is true.
    When she awoke and needed to go to the bathroom it became apparent that she was needing, again, to be classified "two person max assist". Her legs just weren't working as well for her as they had even that morning. This worried me. As well, I noticed some slight swelling in her legs and feet, despite the fact that sleeping kept them elevated. Once she was changed, although she expressed a preference for sitting in her wheelchair and eating in front of the window, which has an interesting view and which we've been enjoying most of every day she's been there, it was clear that it would probably be best if she ate in her bed and she didn't argue. As well, her hearing seemed to have degraded a bit. I took note of this because once her pneumonia was well addressed in the hospital her hearing cleared up noticeably.
    After dinner, during which she ate well, she was completely uninterested in anything and wanted to go to bed. She'd also been feeling warm to the touch (although this happens a lot even when she doesn't have a fever). My concern notched up another level. By the time I prepared her for bed, had her changed and she was settled for sleep I was really worried. I mentioned all my concerns to the evening nurse, punctuating them with "something just doesn't seem right", found myself bursting into tears a couple of times before I left and secured a promise from her that "if anything happened or she called out for me during the night" that I was to be called in immediately. I also speculated that maybe Mom really is just letting down from all her hard work and, as well, my continual exhaustion is getting the best of me.
    So far, so good, tonight, except that I just awoke, about a half hour ago, with that song line quoted above running through my head and the idea that perhaps her pneumonia wasn't completely addressed, that she needs to be back on the antibiotics, the prescription for which was ended the first day of her facility stay, and could probably use a small (15 mg at most) dose of furosemide to draw off the unaccustomed but still mild edema, which is probably not isolated to her legs. I'll address this tomorrow with the nurse if her feet are still swollen in the morning. This swelling was apparent the first day of her rehab stay, too. The nursing supervisor said it "wasn't bad" but I countered her by telling her that Mom just doesn't swell much, so any swelling is worthy of note. I don't think the Nursing Supervisor paid attention to me, though.
    She is scheduled, at least, for occupational therapy tomorrow/today. I will, of course, be back at the facility early, hopefully as early as 0800 or 0830. And, as usual, remaining, to keep her spirits up and keep an eye on her, most of the day with very short breaks to check back on the house and the kitties, who are, now, pretty much into the routine of being left alone but full of complaints about the situation, especially Mom's absense, every time I return to the house.

    I'm keeping my fingers crossed about today, hoping that yesterday was just a sort of recovery from some very hard work Mom's been putting it and to which she is unaccustomed. My concerns, though, remain, especially since, at this facility, which is not a hospital even though it is staffed with nurses and a floor doctor, thus, changes in medical routine take a longer to be implemented than is true in a hospital. For the first time in the entire episode in her life, for the first time, in fact, in my entire involvement in her life, I find myself thinking things like, I wonder if the mishandling she experienced at the hospital, which was fairly flagrant and revolved around an initial incorrect diagnosis of "failure to thrive" which treacherously delayed any medical investigation of the leg weakness and other attendant problems for three days until, finally, I pitched a fit and the pneumonia was discovered, is continuing and I might have to pull in a lawyer before this is all over. I have delivered lectures to just about everyone about the inappropriateness and treachery of the "failure to thrive" diagnosis, which, I note, in her chart, continues to follow her like a bad penny. And, yet, I cannot help but think, especially in light of yesterday, that those who are directly responsible for her medical care are continuing to ignore everything else except this.
    I do not believe it was wrong to put her in rehab. She clearly needed it and has clearly been responding well, until yesterday. Maybe yesterday is just a blip. But, if it appears, this morning, that it isn't, then, whoa, well, I guess ratchet myself back up to super-management mode. And, it is hard to express how tired I am: "Too tired to yawn, too tired to sleep..." ahh, that's right, I need to look up the source for that. I promised my mother the other day I'd do that. Hold on...ahhh, here it is.
    There was another cool incident involving a quote two days ago. The "Care Plan Meeting", which was somewhat disappointing but, then, I may well have had expectations that were completely my invention. In order to prepare for it I filled out a questionnaire about Mom's care, with Mom's help. One of the questions involved soliciting her opinion of her quality of life at home. When I asked her the question she immediately responded: "The quality of life is not strained. It droppeth as the gentle rain from heaven upon the place beneath." She also correctly (except for the word "life", which is actually "mercy") identified it as having been written by Shakespeare, although neither she nor I correctly remembered the play, which I researched that day.
    So, you know, this woman, this mother of mine, she's hanging in there and I am determined not to suffer any of the "clowns" and "jokers" who seem lately and often to be crossing our path.
    Her pressure sore, in answer to one of my faithful, well appreciated readers, is healing nicely and, yes, you are right, I've been all over the staff like a bad suit to keep an eye on it and treat it appropriately, as well as believing nothing that anyone at the facility is trying to tell me about how inconsequential these things are.
    And, for one of my sisters who may be trying to get ahold of me, I am almost never here, if you've been trying to call except before 0800 and after 2200...sometimes I leave earlier, sometimes I get home later.
    Think I'll try to get a few more hours sleep.
    God, how I hate the medical industry. So much unnecessary energy and effort is required just to negotiate a lot of shit in order to get a little appropriate attention. I even told those professionals present at the Care Plan Meeting that Mom and I have left medicine in our dust before and we are very likely to do it again before Mom finally decides to cut out and turn toward new adventures. My hope is that I can keep the medical industry from hastening her decision to cut and run before she's really ready. I'm not interested in mopping up with a lawyer. I'd much rather avoid the need for a mop up. I just hope that my exhaustion does not somehow play a role in what may be my inability to do this.
    It's so weird. I want to shake someone, anyone, until their brains rattle back into place.
    Later.
- posted by Gail Rae @ 03:32   email  this post