Ai, yi, yi, my head hurts!
    Figuratively, that is. It seems that my mother is in danger of losing the gentlest, most appropriate medical care she's ever had (through Hospice) because she's not dying fast enough. Shaking head. Closing eyes. Despite the incremental declines I see in her, Hospice sees her as "stable". She clearly isn't. But, she's just not declining at a Final Gifts rate, I guess.
    So, this last night I started researching all kinds of information about hospice. I found some good sites.

• This one (it's a pdf) gives an excellent technical overview of how terminality is figured in time. According to the Karnofsky Performance Scale, there was good reason to sign my mother onto Hospice as, her cancer, profile, alone, indicates that 60% of patients in her category are dead in 6 months.
• This site (which is clearly dated) and this site (an excellent site for a quick, dirty introduction to Hospice funding) both talk about funding and gave me an idea that perhaps the Hospice my mother is with is having a funding problem...perhaps they are over taxed with patients and, despite the fact that, at this time, my mother's Hospice funding profile is surely covering her with plenty to spare, if her Hospice is experiencing a "Cap" problem, this could have no insignificant effect on their desire to get rid of her at this time, since she has a 40% change of living beyond 6 months.

    The Hospice RN, when he ran this possibility of my mother being pushed off Hospice because she is too medically "stable" for Medicare to continue to fund her, assured me that we wouldn't be left high and dry. Hospice would find us an appropriate local doctor (I have no idea how they're going to do this, considering my lack of success, but I assume their network ensures success where my lack of a medical network here ensured failure) and, of course, "she can always come back on Hospice". The problem with switching her back to any non-Hospice doctor is that if she has an acute episode, I believe anyone can safely lay money that she will be sent to the hospital, where experience tells me she will be dangerously mishandled. Maybe, as I have before, I can successfully fight the mishandling...but, the further along she travels with her tumor, the less likely I'll have the time to successfully fight on her behalf. Aside from the fact that all hospitals and all doctors, across the board, since I've been her medical advocate (and before, for that matter) have had periods of dangerously mishandling her, this hospital in particular seems to corner the market on misdiagnoses and mishandling. This scares the shit out of me, now. I almost feel as though, if we are kicked off Hospice, even if we're assigned a doctor and, additionally, that doctor and I are able to come to an understanding that is beneficial to my mother, if she has an acute episode I should just try to deal with it at home, hope for the best, and that scares the shit out of me, too.
    There's more, much more, that I want to write about, here, but I need to finish dinner and get The Mom up from her nap. Suffice it to say that, over this weekend, I'll be compiling a well researched and well documented plea questioning my mother as a "stable" Hospice client and pleading for compassionate care, as well as a compassionate decision, on this matter, while it's still stewing in the Hospice office soup.
    I gotta tell ya, people, it is a wonder to me that the USA isn't lower on the international health quality scale than it is. Maybe, in truth, it is; maybe the numbers that make it to these places that produce these measures are fudged. Shaking head. Closing eyes.
    I am reminded of something I read when I was in college in a book by A. Alvarez called The Savage God (I think that's right, I'll have to look it up). It seems that Greco-Roman attitudes toward suicide were involved with the idea that there is a right time to die and it is the height of good manners to take oneself out when that time has come. I can't help but consider this bit of information while contemplating and trying to work through the irony of our current medical dilemma with Hospice.
    Later.
- posted by Gail Rae @ 20:40  0 comments   email  this post

 
Wow! Six days Away!
    Actually, I've been fooling around with these journals but it's been my continuing effort to transfer everything over to my newly acquired domain. I've got a few of the less visited journals over there already: The movies, the first archive. I transferred, as well, all the histories to their own Blogger archive. I'm pleased to mention that, as I transfer journal sections from Blogspot to the domain, Blogger sets up a redirect service for the blogspot address. It's not automatic. If you reach one of these redirect pages you'll need to click a "yes" button to be redirected, but, thank the internet gods, that'll be an easy process. I hope this redirect service is indefinite, although I can't find anything in Blogger's help section about how long it continues, primarily because there is nothing there about the service.
    Mom and I also took a six day vacation (through today) from statting. I just logged an informal report of those six days over at The Dailies. Nothing spectacular. About the only major change is that, at the Hospice RN's suggestion, I've added a glass of prune juice to Mom's evening meal in order to try to avoid using Phillip's Milk of Magnesia. I also took a six day vacation from reporting on her movement. Nothing spectacular has happened with that, either. We've used the wheel chair about as much as would be expected in any six day run, although it has seemed to me that Mom's been a bit more iffy in the movement arena than usual, so I'm thinking it might be time to do a hemoglobin check, in case it's bouncing around a bit. Otherwise, though, she's doing fine; not sleeping any more or less, no change in behavior or habits, etc.
    She surprised me, though, a couple of days ago. Some months ago I rented the movie Aguirre, The Wrath of God because MFASRF had claimed it as his favorite, I'm familiar with both Herzog and Kinski, and was curious about it. I was so mesmerized by the rental viewing that I decided to purchase it, even though I suspected that Mom would not be particularly enthusiastic about it. I thought she might appreciate the historical depiction of the journey, but, if she were able to follow the story at all, she'd find it not to her liking. Was I wrong! She leaned forward with astonished interest from the very first frame. She talked back to the screen or engaged me in conversation about scene detail numerous times...most notably during the last several scenes as people on the raft were being picked off by poisoned arrows, to which she'd say, "There goes another one!" As the movie ended with Aguirre alone on the raft surrounded by a horde of marauding monkeys my mother exclaimed, "Well, that's some crew you've got there, boy! That's what you get!"
    Almost time to awaken The Mom from her beauty sleep. We are working our way through the HBO series John Adams. I watched the entire series when it first aired, but that was pre-hospital/interim care facility/rehab for Mom. Her interest in just about everything was severely restricted by what turned out to be her pneumonia, so, although she viewed some of the episodes with me, she had a hard time concentrating and declared that she "didn't like" any of it. When the series DVD's went on sale, though, on a hunch I asked her if she was interested. She was. We've made it through Part 1, so far, today, which was as lively an experience as watching Aguirre, The Wrath of God with her. In addition, she mentioned that she'd like to purchase a set to use in her classroom. "Wouldn't this be wonderful for the kids?" she asked.
    "I agree, Mom," I told her. "If I'd been able to see films like this when I was taking American History in grade school, my interest in history wouldn't have been latent for so long. We don't need to purchase an extra set, though, you can use this one."
    "Well," she said, "I want to leave it there so that it's always handy."
    Good thought. "Okay," I assured her, "I'll get you a classroom set." I can't help but wonder, will this be for a classroom in Iowa, California or on Guam? Maybe I'll find out tonight...
    ...later.
- posted by Gail Rae @ 19:12  0 comments   email  this post