Regarding side effects of erythropoeitin shots:
    Now that I'm thinking about it, I should have remembered it from the branded advertisements that ran on TV for awhile when erythropoeitin was a popular booster of red blood cell production for cancer patients,: "mild to moderate bone pain". MCS tweaked my memory...but it took my brain a good 24 hours to suddenly produce the phrase from the ad. As well, she speculated that a drop in energy could probably be expected while the bone marrow was scurrying to produce more red blood cells. What is important to know about this is that it is the long bones, from shoulder to elbow and hip to knee, the ribs and the sternum that are the most lively producers of red blood cells. These are also the most likely to twinge when production is stepped up. For how long? Good question. In the case of regular shots, my mother's experience seems to be a sort of intermittent schedule.
    Do I wish Mom's hematologist had mentioned this, rather than answering my question about expectations in this area with a smile and a shake of the head? Well, it would have been nice, but, frankly, I'm so tired of Medicine, as it is these days, that I don't care, anymore. I know. I should. It's funny because, last night, after running through The Conversation segment of the PBS program Caring for Your Parents (I have more to mention, by the way, regarding some of what the various panelist said, but, that can wait, I'm pretty much not inclined, at the moment, toward excitement over The [Caregiving] Literature, right now), I decided to download the caregiving handbook offered in conjunction with the program. I scanned it this morning, especially the medical section. Jesus Ef Christ! First of all, I'll bet there isn't a directive I haven't tried, including attempting to interview prospective physicians before employing them (even though I have Health Care Power of Attorney on behalf of my mother, no physician has ever allowed me to interview them for any reason), multiple times, not always but usually without significant effect on physicians or our relationship with them. More to the point, though, the entire booklet seems to be designed to scare possible avocational caregivers away from even attempting the role. In the meantime, I continue to recall the fairly oft repeated phrase from the program, "you've got to have a plan". People, let me tell you, if I'd bothered to read a handbook like this, or any of the many others, if I'd sat myself down and attempted to design a plan and actually counted on following it, guess what, I would have said, "No way, Mom," when she originally asked me to do this and would have hot-footed myself in the opposite direction. As it is, it's lots harder than I ever imagined, but, without a plan and without prior coaching, I, first, took on the role and, second, have found it a much more flexible and much less onerous role, overall, than any of The Literature would have had me believe. Oh, it's really hard, all right, but it's nowhere near as hard as The Literature can make it sound.
    I'm not saying that this stuff is best ignored, certainly it's a good idea to be aware of as much as you can handle, but, you know, read it askew..."through the glass darkly". Don't ever imagine that you must completely recreate yourself in order to fit the role. It is much more likely that you'll be creating the role to fit yourself and your care recipient. My sympathy is not only with all those who do it but all those who refuse it. But, know this: It is a role that invites reimagination, with every caregiver who attempts it and every care recipient who receives it. The role thrives because it is so easily reimaginable. Go ahead, read the books and pamphlets. But, if they scare the hell out of you, throw them aside and turn, instead, to deep thought about the person for whom you are considering caregiving, your interrelationship with them, your relationships with any other people who will be intimately involved in your caregiving adventure, then, write the rules that suit you!
    Final sidebar regarding all that great advice about how to control the medical aspect of your care recipient's life: Medicine has lost control of itself in the last decade (or maybe a little more). Believe me, when Medicine can't control itself, you're foolish to think you can control it on behalf of your care recipient, even if that care recipient is yourself. Don't stop trying, but don't expect more than glimmers of success. In this country we've got a looooong row to hoe before Medicine, especially, at this time, Geriatric Medicine [Did you know that the number of Geriatricians is declining rapidly in this country, at the moment, and Geriatric research is at a stalemate?] becomes trustworthy, again (assuming that it was, once).
    Hmmm...seems like it might be a good idea for me to go eat some worms, right now, huh.
    Later.
- posted by Gail Rae @ 18:39   email  this post