Saturday, March 17, 2007


I can hear my mother's deep breaths...

...held for a moment at their apex and whooshed out, as I pass her bedroom. This tells me she's retained what I told her several times last night, that I'll be awakening her "earlier than usual" in order to hustle her in for a blood draw. As I usually do, I bribed her memory with the promise of a sausage and scrambled egg breakfast, seasoned with MPBIL's Southwestern Fire, accompanied with an apple-maple-walnut pastry, which have become one of her favorites since I introduced them in December of last year.
    I'm always amused and relieved on mornings like this. They remind me that my mother's memory isn't as fey as usual in regard to some things: Favorite things, I think; like Bible Movies, for which she'll forgo a nap and in which we've lately been indulging, since I ordered two series for her; the promise of a trip, which we'll be taking on Thursday, down to Mesa for her six-month, routine doctor's appointment; the possibility of a flower delivery...
    Time to awaken the Mom. It should be a rousing day, today.

Friday, March 16, 2007


I just directed myself,

through a comment left on The Tangled Neuron, to a sparkling blog, The Trip Over, published by Don Hayden, who is living with Alzheimer's in his brain, rather than in the brain of a relative. This is not the first blog across which I've stumbled written by someone with dementia. There's something about Don's writing, though, that pulls me into his experience and makes me wonder more deeply about my mother's experience with dementia, as well as wondering forward into the future of my own brain. It's been awhile since I've searched out Alzheimer's online journals, so I can't say whether Don's journal is one of the many or one of the few, but it's definitely one of the intriguing. In a curious way, it also dispels, rather than heightens, fears about developing and/or dealing with dementia. I'll be adding it to my list of Honorable Alzheimer's Blogs to the right.
    Thanks, Don. Because I don't deal with Alzheimer's and my journal is chiefly about caregiving for and companionating an Ancient One, demented or not, I had come to the end of my personal "Alzheimer's Blog" rope. Your blog has brought me full circle, to a new beginning regarding my interest in dementia.


Label it "Forbes"

    It seems that several online journalists and their readers have been keeping an eye on the recently mentioned article about how to run a nursing home, checking to see if comments we know have been left are being published. "Sue" left a comment on my previous mention of the article indicating that she's also been watching. To no avail, it seems, although, as I mention in a responding comment, I'm not surprised.
    I came up with a strategy, though, that may drive some readers to reactions to the article. If you've posted about this article, make sure at least one of the labels is "Forbes". Technorati has what I imagine is a spider that searches and catalogs posts by label. My uninformed guess is that other specialized search sites do this, too. May as well take advantage of all resources at one's disposal.


When I was a junior in high school...

...and having difficulty determining what sort of higher education I should pursue, Mr. Eschbach, the junior counselor, offered to administer a test to me that promised to sift through my many skills and interests and narrow them down to a field of study and career that would be appropriate for me. I jumped at the chance. The test contained what seemed like thousands of questions designed (without the following inserted tongue-in-cheek) thus:
If you had a gun pointed at your head and were told that you had a choice to indulge in one of the following activities or die, which activity would you choose:
  1. Rebuild a carburator.
  2. Lead a group of Downes Syndrome youngsters in directed play.
  3. Invent a better mousetrap and market it.
  4. Promote someone else's career.
  5. Paint a picture in watercolor.
  6. Paint the side of a building.
  7. Perform nursing duties in a hospital.
  8. Perform an appendectomy.
    Although I applied myself with stark seriousness, the test wasn't easy for me. Sometimes, considering each group of activities, I'd rather rebuild a carburator than invent a better mousetrap, depending on the type of mousetrap. Sometimes I'd rather paint the side of a building than paint a picture, depending on the medium offered for painting the picture. Occasionally, the only suggested activity that looked interesting was performing surgery, even though I had, at the time, no interest in medicine. Never, though, was there a group of selections in which the activity that most interested me involved any kind of caring for any type of people.
    My results were disappointing. No preferences emerged. The results were so askew that Mr. Eschbach joked that, although cheating wasn't possible on such a test, it looked as though I had. The only result that was so clear as to be incontrovertible was this: "What ever you do, you should never go into the helping professions. It would be best if you chose a career that involved solitary labor."
    I wasn't surprised. If you've read a fair portion of my journals, you aren't surprised, either. I'm not a natural caregiver. Never have been. Never wanted kids. Never wanted to marry. Never even played with dolls. I tried living with a couple of lovers and succeeded only in kicking them out. I've been known as an excellent friend but only because I have a talent for advanced listening. I don't listen because I want to help or comfort people, although solace for the talker is often a fringe benefit of the skills involved in advanced listening. I listen because I'm a natural observer, keen to know everything I can absorb, consider it, combine it with other observations, play with a variety of stored observations mixed with new ones, see what I come up with. I have no problem doing this for an audience. My preferred environment, though, for observation (including listening), consideration, combination and play is an environment in which I am alone, or, at least, left alone.
    I've always been a loner; the kind of loner who admires and aspires to the lives of legendary hermits. I slept through my birth; that should tell you something about how interested I was in making contact with other humans. I haven't always thought I could live alone, but that wasn't because I was afraid of being alone; it was because I was afraid I wouldn't be able to support my lone self. Once I realized, in my early 20's, that I could, I was free, and satisfied to freely remain alone. I've always been annoyed with communal living rituals such as bonding chatter; bonding recreation; bonding meals. I find them distracting. Although we had many pets in my born-into family, I never took care of them, never really bonded with them, although I liked all of them and loved some. On my own, I had only one pet, a cat who preferred to be outside, so much so that he refused to use a litter box. I used to call him my dog-cat. Pets need care. I've always preferred to take care of myself, only myself. I'm not anti-social (which is odd, actually; I'm unusually socially adept, not only for a loner but for most non-loners) and have managed to nurture and keep my share (not other people's share, mind you, my share) of friends but, you know, my preference, on any day, is time alone over time with a treasured friend. As well, if I lose a friendship because the friend's demands are too great for me to accommodate or vice versa, oh well, I've still got my best friend: Me.
    Why am I telling you this? To severally underscore the following point: If there is anyone who does not come by caregiving naturally, who does not have a talent for caregiving, who was not made to be a caregiver, it's me. Want to talk caregiver challenged? I even prefer that other people not try to take care of me. I'm proud of these idiosyncrasies, still am, even though I'm, clearly, entangled in intense needs caregiving for my mother. I continue to cherish the memories of the days I figured out I didn't want to have children; didn't want to marry; didn't want to be a constant part of any one community; didn't want to live with my lovers; didn't want to live with anyone, even roommates; didn't want pets; didn't want friends who might consider me something to do if they couldn't think of anything to amuse themselves...
    Why is it important to me to make this point? Recently, a regular reader of my journals, someone I consider an online friend, expressed, in an e to me, concern about my recently published essay over at The Unforgettable Fund Blog. The concern was this: " occurs to me that some people are just not made to be caregivers, and then the question is what should they do to support those who are?"
    Interesting question to pose to someone who isn't made to be a caregiver but made one of herself, anyway.
    Here are my considerations in response to this question, in no particular order and not necessarily related, except by the circumstance of being the considerations of an unmade caregiver:    I think we're all shell shocked, right now, by this business of caregiving. We are being forced to become aware of the care needs of our elderly parents, even as we're already aware of our inability to adequately meet the care needs of the families and communities we've created. The most poignant awareness we're experiencing is that, somehow, we've managed to build and nurture a society that does a horrible job of building and nurturing us. It's already obvious that it's going to be incredibly hard to make caregivers out of an entire society of people who weren't made that way from the get go. We're not yet convinced that we're going to have to do it anyway but, let me tell you, it doesn't matter whether we're convinced of this, we're going to have to do it because we are so care poor that we can't produce enough adequate professionals to handle caregiving for us. Sweat and suffering will be involved. Blood will be shed, as it usually is during birth. When the hard part is done, though, we just might find ourselves with children who won't even understand the question, "What should those who aren't made to be caregivers do to support those who are?" because, well, everyone will have a vested interest in caregiving for those about whom they care and no one will perceive caregiving as such an onerous task that they will assume they are not made to give care.
    Will I live to see that day? There's another good question...

Thursday, March 15, 2007


Yesterday, someone looking for information on aloe vera gel...

...happened upon this post of mine and left a comment asking for more information on the product mentioned within. Since the poster remained "Anonymous, no reply", but asked for a reply, I left a very detailed response about not only the mentioned aloe vera juice but about the product I now use and why I switched. It occurred to me some minutes ago, though, that the person wanting the information may not check back on the original post but might look to the index page for a response. Thus, I'm mentioning the informative comment I left in response and posting the above mentioned link to the specific post, in case the searcher returns.

Wednesday, March 14, 2007


Better Living Through Chemicals

    In February of last year I wrote a post in which I came out against the use of antidepressants by caregivers. Thus, it is with a bit of chagrin that I find myself now writing a post admitting that, about a month ago, I decided to try consciously using chemicals to realign my neurological chemistry.

    A couple of months ago an excellent, long time friend of mine decided to try prescribed antidepressants for a limited period in order to realign his neurological functioning. I expressed critical interest and asked him to keep me posted, in part because he is meticulous with such requests, so I knew I'd get a blow by blow description, and in part because, well, I closely identify with some of his perspectives and wondered how they would be affected. As he was being switched from one medication to another he mentioned to me that his therapist described him as "severely depressed, just functioning well". I shivered. It sounded like a fairly accurate description of me. As his dissertations continued, he admitted that despite some unsettling side effects (acute "fogginess", "apathy", physical fatigue; I quote the two out of three because his definitions of these are other than those typically assumed), he was pleased with the results. His descriptions provoked me to question my insistence that caregiver depression, an implicit aspect of caregiver burnout, is best addressed by the society surrounding the caregiver, chiefly so that those of our current assumptions about caregiving which lead to high levels of frustration, anger and depression can be swept out of the picture.
    Although I have not changed my view on this, waiting for the delivery of these enlightenments and corresponding actions within society has become yet another exercise in Waiting for Godot for me, in which society plays the part of Pozzo and all those associations for and advisors to caregivers play the part of Lucky.
    After multi-faceted consideration of what my friend was telling me (which did not include, at this point, his personal definitions of "fogginess" and "apathy") coupled with my own circumstances and my own preferences for neurological alteration, I reconfirmed for myself that the hammer-to-head effect of prescription pharmaceuticals is contraindicated for me. My ability to care appropriately for my mother would be severely hindered by fogginess and increased levels of physical fatigue. Further, I remain uninterested in developing an apathetic response toward those societal forces which conspire to destroy the spirit of everyone compelled to provide care for others. But, I decided:    Maybe, I thought, a little gentle chemical provocation might be in order, here.

    Many years ago, soon after it became apparent that I should become a full time, in-home caregiver to my mother, if for no other reason than to seduce her from drowning in sleep (at that time her increased sleep was not due to CRF but, I think, boredom and mild depression over feeling as though she was no longer completely capable of independent activity, that she needed the boost provided by a life companion), St. John's Wort was introduced to this country in a flurry of excitement (no doubt part of the PR campaign engineered by the pharmaceutical company responsible for obtaining permission to distribute it) and in the form of a pilled, packaged preparation commonly sold OTC in Germany (and probably other western European countries). The hype was compelling. I read lots of literature on that preparation. It occurred to me that this might be exactly the gentle chemical provocation that could jump start me into meeting what were then the requirements of my personal full time caregiver journey and, as well, might help nudge my mother out of the cloud inactivity (both physical and mental) that had descended upon her during the last six months or so of me working full time outside the home. I saw to it that she and I stuck with it for at least 90 days. At the end of 90 days, although we both noticed that our companionated life had picked up, neither of us felt that this was due to taking St. John's Wort. We strongly suspected that the 90 days of pill-popping corresponded to the period of time it took for us to readjust our lives to being each other's companions. To test this theory, we stopped taking the pills. A few weeks later, during a day spent with MPS in which I was experiencing somewhat more than mild frustration and taking it out on her, MPS commented satirically that I ought to consider taking St. John's Wort. I responded that both Mom and I had, not so long ago. "Well," MPS responded, "I guess that stuff doesn't work, does it!?!" This further confirmed my mother's and my decision not to look back after our trial run with the herb.
    Since that time I've become more savvy about alternative medicine, including a variety of herbal preparations and the best types to ingest to induce desired effects. One of those lessons was that tinctures prepared from extracts are usually the most effective means of using herbs. Thus, I decided, perhaps if I consider taking such a preparation of St. John's Wort and consult with an alternative healer well-versed in herbal therapy, I might have more success with it. That's how I started, a little over a month ago. Since that time I've:    The dose I'm currently taking:    I should probably note, here, that I am not administering St. John's Wort to my mother at this time. I am not convinced that she needs it and, as well, I am leary of how it might interact with her current medications, supplements and health conditions.
    I should probably also note that, while I should have marked the exact day I began, I didn't. I'm not concerned about this.

    Once I began taking St. John's Wort, I stopped casually thinking about it. This was easy for me to do, considering all the other things I have to think about during any particular day. The only circumstance which caused me to occasionally consider whether it was affecting me was my continued, sporadic conversation with my excellent friend comparing and contrasting his prescription antidepressant experiences with my herbal antidepressant experiences. "Sporadic", by the way, translates into approximately once a week. Following are some of my formal observations:    Over the next few weeks I wondered if I was understanding my friend's terminology for his experiences. He spoke of a return to "happiness". I rarely use the word "happy" (or derivatives thereof) to define felicitous, euphoric states of consciousness, even though I frequently experience(d) such states, pre- and post-St. John's Wort. I tend to consider and identify them as varieties of flow experience, which seems to me like more accurate terminology than the word "happy". I wondered if he was referring to states that I had not stopped experiencing; thus indicating that he and I were hoping for and experiencing, different antidepressant effects.
    Upon my request he provided me with a wonderful explanation of not only what he means by "happiness", but "fogginess" and "apathy" as well, since I'd expressed concern about the latter two effects prior to my decision to try St. John's Wort. My distinct concern about "apathy" was based on an episode of Sex and the City in which Charlotte finds herself involved with a man who is on Prozac. Aside from the sexual side effect with which she finds herself dealing, my recollection informed me that her partner not only wasn't concerned about this, but, more alarming to me, not concerned about much of anything, which I interpreted as the apathy response. As well, in an earlier conversation, my friend mentioned that his therapist alerted him to the possibility that, as a side effect of Prozac (I believe he has sinced switched to another antidepressant, although not for this reason), in particular, he might "stop giving a damn about anything." He speculated that this would please "the government".
    As it turns out, his experience of "happiness", which he likened to feelings he'd had when he was a child but not since, are experiences I've never stopped having. His definition of "fogginess" is strictly mechanical and similar to what I'm experiencing, although the volume of my experience is so much less than his that I'm only barely aware of it. His definition of "apathy" does not include a lack of concern for those social concerns he entertained previous to embarking on the antidepressant road. It involves, rather, not stressing about the effects of the "fogginess". He admitted, in fact, that, if anything, his social concerns are now more, rather than less significant and that he feels freer to act upon them than previously.
    In response, I told him that my hopes for St. John's Wort were primarily to become more effective in my life by getting out of my own way. Last night, during private consideration, I further amended this hope to include increasing my desire to be more effective. Both appear to be happening. In comparison with what he told me, I responded thus, based on a little over a month's use of St. John's Wort:    About a week after this discussion, just a few days ago, I delivered to him the following report:
    I just went through my first bad day on St. John's Wort...successfully. It was a really bad day, no doubt about that. This time, there was a cause, my inability to publish on only those journals which were housed on my domain server. It wasn't a random bad day. I don't seem to be having those anymore. I also noticed the following differences:
  • Although it could have involved me screaming through live chat at my domain ISP, I was able to control myself.
  • It took three previous days of publishing problems for me to have a bad day because of it.
  • Although I did all I could to see if I could solve the problem myself while they were also trying to solve it (something I usually do; sometimes I'm successful; this time I was not), I never became frantic. I anticipated the frenzy, but it never occurred.
  • Despite the fact that it was such a bad day that I indulged in some typical bad day behaviors like insisting on watching Sex and the City all day and serving what we call "junk food" (a household with a diabetic is stocked with junk food that is only borderline junk food), I also found myself writing two warm, friendly emails (something I would never have previously thought to do during bad days) to a couple of strangers who happened upon my site over the weekend.
  • I did not indulge in plotting the destruction of the world or certain people in it and didn't fantasize about owning a gun and randomly shooting strangers passing by on the street, which are among my usual "bad day" thoughts.
    Thus, this bad day was almost revelatory.
    I can tell that I'm still in for some effects. I continue to slow mentally, although it doesn't yet feel like what I would describe as fogginess. I'm noticing that I'm forgetting relatively insignificant things, like, for the past couple of nights I've set up the dishwasher then forgotten to activate it. Napping seems to have become an every other day habit, which feels weird. Awakening from naps still feels like coming back from the dead, but that effect is no longer as pronounced when I awaken from night sleep. While considering the sleep circumstance, it occurred to me that it's possible that SSRIs of any type interfere with REM sleep, just like marijuana does. I've noticed that I no longer remember my dreams. It feels rather as though I'm not dreaming. I don't think this is true, but the effect may be because I'm either not having as many as I should or the dreaming process is interrupted.
    Overall, I'm pleased. I think, this time, I'm taking a form and dose of St. John's Wort that is doing something neurological and, overall, I like what it's doing.
    I continue to contend, in conversations with my excellent friend as with myself, that I'm willing to accept that I may be experiencing more of a placebo effect while on St. John's Wort than an interactive effect. I'm undisturbed by this, as I've always been undisturbed by possible placebo effects. I don't care, frankly, if it takes a inactive substance to trigger self-chemical-neurological realignment and produce particular effects. If I have to trick myself into retreating from the edge, I'm more than willing to do this.
    My only concern is the possible development of a "happy idiot" effect, for which I continue to watch but has yet to occur.
    Will I continue to report on my experiences with St. John's Wort? Definitely, I expect the conversation between my excellent friend and me to continue, as needed. Whether I'll mention any more here, except, perhaps, when I stop using it, is debatable. I will, of course, if I notice anything that significantly alters my companionship/caregiving adventures. As well, I think it important to reiterate, I still look with a wary eye on the current activity of antidepressant pill pushing upon harried caregivers. I consider it an easy and dangerous social fix for problems that need to be addressed through changes in societal attitudes about and circumstances regarding caregiving. I am a bit more understanding, now, about the need for individual caregivers to assent to such personal fixes for caregiver frustration, stress, depression, burnout. I am also better informed about the possible definitions of antidepressant induced apathy and relieved that this apathy doesn't always deliver unprotesting subjects to their governmental monarchy; it might, in fact, sometimes, increase protest and effective action against prevailing government and societal strictures. I continue to contend that if we don't fix the society, we won't fix the problem; we'll just mask it and allow our society to become less, rather than more, human friendly. This is why I chose a gentle personal fix. This is also why I am determined to stop that personal fix if I notice that I'm becoming immune to observing the abysmally skewed caregiving atmosphere in this society and others. My hope is that, as I perceive myself as more effective and more interested in being effective, my personal fix will enhance my ability to trigger and cooperate in societal fixes (other than tainting our water supply with SSRIs). Maybe this is already happening to me; at this point, it seems likely. If so, praise the gods and pass the pill plate a few more rounds, please.


Still catching up...

...which is becoming a "catch"-22, as, the more I catch up, the more stuff I think to post. But, oh well, I've heard the way to eat an elephant is one bite at a time...seems appropriate to what I'm trying to do here, with a slight modification: a continually growing elephant.
    This first catch up is meant to bring your attention to the third E[xcellent] E[ssay] guest hosted at The Unforgettable Fund, published yesterday, written by Bert Piedmont. Bert is the author of yet another noteworthy journal, Had a Dad (intriguingly accurate name), in the loose and unofficial Online Alzheimer's Journaling Community (of which she recently admitted to me she was unaware...that's how loose and unofficial it is; it's possible I'm the only one who recognizes it). One of the unique aspects of her journal is that she often writes while jumping off the ledges provided by bits of information in the media about different aspects of Alzheimer's. It's yet another journal that features the hard, unvarnished truth; and another I've added to my Honorable Alzheimer's Blogs section to the right. Yes, I changed the name, a few weeks ago, from "Caregiver" to "Alzheimer's". It wouldn't be beyond my desires to also set up a links section for homegrown, online journals detailing the journeys of caregivers/carers and their beloved Ancient Ones, like myself and my mother, who are dealing with intense needs care issues excluding Alzheimer's and including other types and levels of dementia and other circumstances, as well. I have yet to run across any. If you visit here and know of or are writing one, let me know, I'll jump over, check it out, and maybe refurbish and reinstitute the title Honorable Caregiver Blogs.

Tuesday, March 13, 2007


I've got a few more minutes...

...of semi-free time (Mom's watching the news), and want to insert yet another post on which I've been planning for a little over a day but forgot to mention in my review of upcoming posts; or, maybe it could be said it's inferred in the "Probably some other stuff, as well" category.
    Mike over at Fading From Memory recently published an amazing piece of confessional literature entitled Pathetic that is heartrending and absolutely on the spot in regards to it's subject, which is caregivers' reactions to the increasing incomprehensibility about, helplessness toward and estrangement from one's parents' lives as they slip deeper into Alzheimer's country. Not only is the post excellent, so are the comments, particularly the one left by redcedar. This is the kind of writing that is so good it allows those who are involved in caregiving for Ancient Ones with Alzheimer's and those who aren't but know of someone who is (which is most of us, now) to feel, as redcedar puts it, "the demoraliz[ation]", under our skin.
    Get your ass over there and read it.


"I Hope I Die Before I Get Old"

    This is the subject title for a comment I left regarding an eight part article in about "The Fundamentals of Running A Senior Living Home", about which I was alerted by Mona at The Tangled Neuron [11/14/08 Update: Mona has deleted the post to which this link directs since I've published this post.]. Not only did she write an excellent, thought provoking post in reaction to the article, she mass mailed others of us online journalists who have an interest in such subjects, urging us to the following tasks "If you find the series as offensive as I do...":
  1. "leave a comment about my post"
  2. "write about this on your blog"
  3. "send a comment to editors by scrolling down to the comments button" at the site of the article.
    I not only found the article offensive, I found it downright frightening, which I mentioned in the comment I left on the page containing the last section of the article. In case my comment isn't posted (I think it was under 500 words, which is the requirement), I'm publishing it here:
I Hope I Die Before I Get Old
  1. For an excellent response to this article focused on the use of "Sunrise" as a model, see: [Mona's post] [11/14/08 Update: Mona has deleted the post to which this link directs since I've published this post.]. [I'm not sure if comments section allows for html, so I boldly cut and pasted all urls listed in this comment naked].
  2. I'm frightened that the customers for a nursing home are also considered its greatest external threat. Is this what's wrong with capitalism, I wonder?
  3. Why wasn't The Eden Alternative used as a model for such businesses?
  4. Interesting that this story is not among the "Most Popular" [referring to a sidebar box to the left of the article that lists the stories that are most popular at any particular time]. What does this say about our attitude toward compassionate caregiving?
    It occurs to me, now, that I probably should have left my comment on the introductory section of the article, but, oh well, I didn't realize each section was going to have a unique comment section. I did click through the comment link to all sections, including the introduction, and notice that, so far, no comments have been published (I'm not about to say that no comments have been posted...I rather suspect that I am not the only person who has thus far commented on the article).
    I know this first post after my enforced hiatus was not mentioned in the post's sort of an ER post. If you're at all interested in how your business minded children are being encouraged to package your old age for maximum profit, click over to this article. To be fair, there are sentences (only a few) here and there that attempt to lend a little dignity to the enterprise of professional elder caregiving, but not nearly enough to keep your blood from running cold.
    The Mom's grabbing my attention.


Finally publishing again!

    If you've checked in over the last 12 hours, you've noticed several short posts questioning whether I can, yet again, publish here. Finally, around 0100 this morning, my publishing ability returned. I've just deleted all those "Am I publishing?" posts here and will get around to doing so at the other journals hosted on GISOL's website later. Mom's awakening time is fast approaching...but I wanted to mention that I'm back in business. I've got loads of posts to write, or finish writing (I took to TextEdit on some of them while waiting so I wouldn't lose my train of thought), so, over the next few days, probably, I'll be catching up with myself. In the meantime, stay tuned for posts about:   Gotta go, now. More...

All material copyright at time of posting by Gail Rae Hudson

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