Mom & Me Four Archive

    If you've visited within the last hour or so, you probably noticed a sudden splurge of "test posts", all of which I just deleted. Since last night I've had a bizarre problem publishing to this journal. Everything appeared fine through Blogger.com, the posts showed up when I ftp'ed my site, and yet the posts, and comments, of which I am finally receiving notification, were not accessible through the web.
    I was about at my wit's end. The email problem was finally solved, but suddenly I had a more serious problem.
    Well, although the email problem was not something I could have solved, as it turns out, the access-to-published-material problem was. During the recent server upgrades (all of which are finished on my part of the server, thank the computer gods), my ftp server name was changed by one digit. Although, as you know, I was obsessive on checking upgrade progress, I didn't notice this change until today, after contacting everyone I could at GISOL, checking permissions on everything (which were all okay) and establishing a trouble ticket on it.
    It's solved, now, and, I have to say, GISOL was unsually courteous with me, even though, as it turns out, it wasn't their problem. So, I was lavish with my appreciation of their efforts, apologized for the unnecessary trouble I caused, and, as well, suggested that perhaps a tiny note should be inserted into their help files indicating that, when servers are upgraded, it's a good idea to check to see if one's server name has changed. This was something I had to discover on my own. While I am fairly competent with the basics (and only the basics) of server protocol, this one went right over my head until I'd tried everything else to solve the problem on my own, even after notifying GISOL of it, collapsed in frustration and then suddenly remembered, "Server name, oh, yeah, that's one more thing I can check." Bingo.
    So, I consider it an obligation, since I published the name of my domain server company in a previous post and slyly hinted that they created problems where none should have occurred (which, as far as the email problem is concerned, is true), nonetheless, they rose to this last very bizarre challenge and stuck with me, right through to my realization of what the problem was, fixing it, and notifying them of the fix.
    I could have done without the lost emails, none of which have been recovered. I know this because two of my visitors resent emails that they thought might have been eaten, and they were right. Thank you for doing this. But, you know, we all try, sometimes we fail, then we try again, and again, and, our failures do not diminish our successes. This applies to GISOL, as well as to me.
    So. Email service is fine. Publishing and access are fine.
    Mom is fine. I am fine. The cats are arguing with one another, as usual, although it's almost Sacred Nap time, so that should end, soon.
    I've got some serious updating to do over at The Dailies, which, I believe, also contains a "test post" that I now have to delete, but, I need to get back to The Mom.
    With a huge sigh of relief...
    ...later.

    I'm not a happy camper. Several minutes ago I sent and myself an email from another address, and sent myself an email to another address, and this domain's server seems to be eating them; or at least taking a loooong time to get them through. I'm going to watch a movie with my Mom and check back in a little while. Since I last posted, just in case you want to check and see if anything you've sent me is getting through, I've received one email from Patty. No notifications of comments, as well. That's it. Hopefully, Patty is the only one who's sent an email to this address and no one has commented.
    The movie, and my mom, are calling.
    Later.

    My mother is not ready to be aroused. Yesterday was an unusually fey day for her. Not sure why, but it was: She looked for "mother" a lot; asked me, repeatedly, where "Gail" was but seemed unable to clarify for me who I was, despite my questions; exhibited unusually sly, playful countenance and mannerisms all day, as though she was intimating that she had the goods, now, on the Universe but had been sworn to secrecy. When she retired last night (which reminds me, I've got some Dailies updating to do), she was up and down so much, engaging me in coversation about such a variety of subjects (most of which she related, in some curious ways, to animals...she spent a good part of the day insisting on watching Animal Planet) that I would have to say she finally retired at around 0200 this morning.
    I'll try her again in a few minutes but, I wanted to mention, as I contemplated her falling immediately back into sleep after attempting to awaken her, I was suddenly struck by how much courage it takes to be Ancient. I've heard and read this before, even thought I'd considered it, but, damn, it takes a lot more than I'd ever figured. Her day, yesterday, was a study in courage, and it wasn't fraught with all the courage-dictating demands that are implicit in the lives of lots of Ancient Ones in nursing homes and assisted living facilities, separated from long-lived-in community.
    Do I have that kind of courage? I wonder. I know, from observing my mother, that quite a bit of it is manufactured on the spot, as few of us, including my mother, can (or were able to) realistically anticipate, even in this era of information glut, what Ancienthood will ask of us. I know that when I think about specific circumstances in my mother's life and her responses, my frequent reaction is, "Whoa, I could never adjust to that!" I'm sure millions of Ancients have, pre-Ancienthood, thought the same, and yet, here they are, adjusting and continuing, regardless of, well, anything.
    Maybe the trick is this: Anticipation is all right; prophecy is not. I've often, throughout the past five decades, at least, considered my mother unusually, though quietly, courageous. I know, though, that she has not considered the same of herself. She considers that she's simply done what is required of her. Something tells me that if a video of her future life had been played for her when she was, say, in her 30's or 40's, she would have said, "Oh, no, I'm sure I'll be cut down long before that happens to me! I certainly hope so!"
    And, yet, despite our desires for our future lives, those lives have their own complicated, ever changing, mysteriously influenced agenda. In so having, and in so continuing their indomitable march, they reveal qualities within us we would never expect ourselves to display.
    At the very least, I hope I have the courage to decide to explore what my Ancienthood, should I be destined to cross the threshhold into it, has in store for me.

    This is a quote of something Dr. William Thomas said in this interview about his newly published book, In the Arms of Elders: a Parable of Wise Leadership and Community Building, to which Mona directed me through a comment and which I have not yet read. I was searching some information about it to determine whether I want to attempt (since I am often unsuccessful, these days) to read it when I stumbled across this quote. I couldn't resist publishing it. How well I know this. I also want to point out, I consider that this quote refers not only to night-sleep dreams, my mother's of which always fascinate me because I suspect she is not 'merely' dreaming (which is to say she is not just reassembling, clearing out or taking instruction from brain bits), but actually visiting a reality not yet available to me; but I think it also applies to her Ancient Day Dreams, as well.
    Listen. Enfold. Try to inhabit. Don't simply try to interpret. This is my counsel on how to approach the all the dreams of Ancient Ones.
    Almost time to awaken The Mom.
    Later.

    Less than a month ago, Mona, author of The Tangled Neuron, received a comment soliciting her opinion as to whether the commenter should seek a neurologist in regard to medical care for her mother. I know about this because, in her reply, Mona referred the commenter to my journals in regard to medical record keeping and advocation and copied me on the reply. She was careful to refer the commenter back to her mother's PCP for the definitive answer on whether her mother should be taken to see a neurologist. When acknowledging Mona's referral to me, I responded off the top of my head to Mona as follows:

    Funny, but a couple of months ago [in May, to be exact] I got an e from someone in similar circumstances to everyone in the Memory Lane Webring (which hadn't yet started) asking for specific medical advice about what medications would be good, or not, for her mother. I was taken aback. Although I responded, I was very careful to stress that I didn't know her mother's "case" and it would be not only impertinent but irresponsible of me to offer advice...thus, I directed her back to her mom's doctor, after looking up some of her mom's conditions and referring her, as well, to sites that might be much more helpful. It's very strange that such requests are beginning to circulate among "patient consumers"...but I have a feeling that you and I are experiencing what will prove to be the minute tip of a huge iceberg. It's probably a good idea for anyone who writes a blog or journal that speaks to any kind of medical management from the patient/advocate side to establish, for themselves, certain ethical criteria in handling such communications and requests.

    I also mentioned that I thought I'd write a post about this. Mona responded by agreeing that it is, indeed, "weird" to be asked for medical advice when one is not a medical professional and sent me the following link which she thought would be helpful in such a post: HONcode: Principles - Quality and trustworthy health information. The site lists eight "Codes of Conduct for medical and health websites", elaborating on them in links below and to the right of each code. It's sobering reading for anyone who writes about medical care.
    As I read through the Codes of Conduct, I evaluated for myself how well I have stuck to them. I also thought about how closely an informal caregiving website can and should hold itself to some of the Codes. I've decided to list each of these codes, verbatim (without their elaboration, into which you can click on the original site, if you're interested), and a bit about my upholding of and thoughts on them:

1. "Any medical or health advice provided and hosted on this site will only be given by medically trained and qualified professionals unless a clear statement is made that a piece of advice offered is from a non-medically qualified individual or organisation."
       I'm not sure that it can be said that I give "medical or health advice". I certainly cover my medical and health practices on behalf of my mother in great detail, including links to medications and practices and my observed results of such. As well, I'm sure I'm always careful to mention when a practice, medication or medical regimen has been discovered, adopted and/or altered on my own without prior professional medical advice.
       I'm not completely in compliance with this, though. Once I've linked to additional information about a medication or practice, it's not uncommon for me, in further mentions of it, not to link further. Knowing how voluminous my site is and how unlikely it is that anyone is going to use the intra-search engine to seek out further on-site information about anything in particular, this is probably irresponsible of me. Whether I address this irresponsibility is another matter. It's time consuming for me to track back for my readers and I often feel I don't have the time to do this. Bottom line, I don't believe the informal nature of my journal requires this scrupulocity of me.
       Further, I think it is clear to my site visitors that I am not a medically trained professional, which is why I don't specifically recommend medications and practices I've tried, although I do recommend certain advocation procedures for those who feel the need to advocate medically on behalf of themselves and others.
2. "The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician."
       Well, certainly, I hold to this in at least a few ways, not the least of which is that I publish all my communications with my mother's doctors, usually verbatim, all of which show how meticulous I am about including her physicians in my decisions and practices. As well, I often publish physician responses, usually and merely as hearsay, for a reason: Most of their responses are in verbal conversation.
       I cannot, though, find any evidence that I have ever said in this journal, "If you're considering using/doing this, consult with your physician first." Should I do this? I'm not sure. I don't always consult with my mother's physician(s) before trying something or after observing something. My purpose in writing about my involvement with medicine on my mother's behalf is to provide a detailed example of how at least one caregiver deals with medicine "informally", so to speak, and record the consequences. I know I am not the only caregiver who does this and I believe using myself as an example will give other caregivers the affirmation they need to know that they are not "the only ones".
3. "Confidentiality of data relating to individual patients and visitors to a medical/health Web site, including their identity, is respected by this Web site. The Web site owners undertake to honour or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located."
       I certainly adhere to this in regard to data about visitors. However, I certainly don't adhere to this in regard to my mother's medical data. I believe that it is essential that the specifics of my mother's medical data be published, here, so that anyone who is curious about how I come to my conclusions in regard to medical management is not left in the dark as to what criteria I use when I make medical decisions on my mother's behalf. In case you're curious, I have my mother's permission to do this.
4. "Where appropriate, information contained on this site will be supported by clear references to source data and, where possible, have specific HTML links to that data. The date when a clinical page was last modified will be clearly displayed (e.g. at the bottom of the page)."
       See my evaluation of "1." As far as dates of modification are concerned, I can't help but date the material: If it's test results, they are dated according to when they were done; if it's information, it's dated according to when the post was written and, sometimes, within the post, according to when I encountered the information. It is not uncommon for me, as well, to indicate within a post when I've significantly modified that post. This applies to posts of both a medical and non-medical nature. I do not, however, change dates and times when I've corrected spelling or grammar on a post. As well, all the stat posts at The Dailies are artificially dated. Somewhere on that site I recorded my decision to do this; as my mother's daily stat information should be dated as per when it was taken and according to the day for which it applies.
5. "Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in Principle 4."
       Since this is not a medical journal and my "claims relating to...benefits/performance" of anything medical are clearly individual and informal, I do not work hard to fulfill this ethic. However, I notice, in scanning through my journal, that I often mention, not infrequently with links, other sources of results, as well as speculating about how any particular medicine or treatment might be further modified as my mother's medical profile changes.
6. "The designers of this Web site will seek to provide information in the clearest possible manner and provide contact addresses for visitors that seek further information or support. The Webmaster will display his/her E-mail address clearly throughout the Web site."
       I am meticulous about this, to the point of mentioning when something about which I'm writing has simply been overheard and I can't remember the source. I consider the practice of unidentifiable hearsay legitimate for this journal because, well, this journal is informal and not meant to be nor advertised as a professional medical journal (although, in a sense, I suppose, since I'm listed on Medical Blog Network, it is "advertised" as an informal medical journal; I was careful, in my description, though, not to describe my journals as a medical journals).
7. "Support for this Web site will be clearly identified, including the identities of commercial and non-commercial organisations that have contributed funding, services or material for the site."
       I'm in compliance with this. I can't help it. This journal is "supported" by no one but me. When I cite information sources I link to them, if I can. In most cases, I can.
8. "If advertising is a source of funding it will be clearly stated. A brief description of the advertising policy adopted by the Web site owners will be displayed on the site. Advertising and other promotional material will be presented to viewers in a manner and context that facilitates differentiation between it and the original material created by the institution operating the site."
       I suppose, in a sense, I do advertise: The carnivals within which I've participated; the journals I read and to which I refer and sometimes recommend; the listing services I've sought on which this journal appears. There aren't very many of any of these. My outgoing links in my links section are few. The reason for this is specific to this ethic: I don't want to appear to support something for which my approval may, at some time, be withdrawn. This is the primary reason I go to great lengths to read the journals to which I link. It is also the reason why, when I attached and then changed site statistic facilities, I mentioned each and explained that each is designed to deposit a cookie on a visitor's website. It is also why I changed site stat facilities: My previous one decided to attach advertising pop-ups to its service in order to fund itself. The one I use now doesn't do this.

    So. Where do I stand on discussing medical matters on informal caregiver/etc. websites? Well, obviously, I do it and have, occasionally, gotten credible medical suggestions from other informal sites. As well, I recognize that informal healing/medical advice is probably the foremost way that we humans go about diagnosing and healing ourselves. We tend, I think, to solicit professionals when we recognize that our efforts don't or can't work or we're beset with a condition for which we have no personal referent. Without informal medical discussion, for instance, it's likely that I would not have discovered and tried Niferex-150 on my mother in an attempt to control her Anemia Due to Chronic Disease. My mother's doctors never recommended it, nor did they know about it previous to encountering my mention of it. In fact, I decided to, and started, using it on her before contacting her physician about it, although I did this after doing lots of research on it and informed her physician immediately after I began administering it. My initial knowledge of this medication came from our yardman in Mesa, who is my mother's age and has anemia and CRF experiences very similar to my mother's. There are, I'm sure, if I gave the matter critical thought, tons of other medical treatments I've used and continue to use with my mother that have come from discussion with lay people and/or independent research. As far as recommending prescriptions and treatments to her doctor previous to him considering them, I've only twice done this, once successfully, once unsuccessfully. I have manipulated her prescriptions on my own, though, always informing her doctor when I do so. As well, my observations and concerns have been responsible for taking her off three medications and changing the medical directions for a few others.
    This is the thing about informal healing/medical information: It is an activity in which we humans indulge that pre-dates our humanity. Animals pass along healing information through instinct and by example: Off hand, I can think of hearing about chimpanzees, gorillas and baboons doing this. It is one of the fastest and most effective ways of figuring out how to heal many maladies. Perhaps I overreacted when I speculated to Mona that such requests made of informal websites that seem to have something to do with healing are "strange". Not strange at all, really, when you think about it, especially since a fair burden of our community activity is being handled through online communication, these days. No doubt, online communication will become even more important to us as our sense of community continues expansion which includes those who don't live in our vicinity. Thus, I think it is perfectly appropriate for online journalists to talk about what they've tried, how it has worked and even, occasionally, to recommend to others, with caution, the use of this or that.
    I continue to think, though, that it is wise, when someone asks me for specific healing/medical advice, to trace for the inquirer how I would go about solving their dilemma if it were mine, perhaps even provide them with initial sources, then refer them back to a physician. I certainly am not interested in hanging out a shingle and I don't want to be a pioneer whose "practice" gains the distinction of initiating the necessity for malpractice insurance on informal caregiver journals!

...more so than yesterday. I doubt that we'll be getting outside to walker, today, since she had such trouble with the wind yesterday. We will, however, do some house walkering, assuming that Mom's feeling good, which I expect. Our project for today will be to clear the hearth and the firebox of our fireplace. We've decided to try using it this year, since we are using fewer fans and our open/closed window arrangement is much different. It's still much too warm to use it, but, considering that we've been using it for storage over the last few years, today's a good day to clear all that out. It's been used only once since our last chimney sweep so I'm sure it doesn't need another.
    Mom talked, yesterday, excitedly, about the possibility of snow. I couldn't believe my ears! I teased her about this and she said, "I'm getting tired of summer. We need a change."
    Good, good, good! She also talked about going back to "the Christmas store", so I'm feeling pretty jazzed about this fall, at least.
    As we talked about yesterday being "Rabbit, rabbit" day for October, she remembered that my birthday is at the end of the month. She hasn't remembered this for some years. I'm pleased about this. If her memory of it continues, I'll see to it that we make a fairly big deal of it, maybe even go out to dinner. Over the last few years when she hasn't remembered it, I've made plans and cancelled them, just because I couldn't get interested in more than a private, internal celebration. This year, though, maybe things will be different.
    Surprisingly, she also remembered that we don't get trick-or-treaters around here. We didn't in Mesa, either, although that was a gated, adult community, so that wasn't a surprise. It's a surprise, here, in the sense that nothing is keeping trick-or-treaters away except that kids are discouraged, if not expressly forbidden from doing that, now. We speculated, some on why this is so. I mentioned that parents seem to be much more afraid of sending their kids out to explore their vicinity than they used to be. We talked about how, as kids, we (her children), had a huge and partially wild area of neighborhood and boonies over which we roamed. We reminisced about the period after Typhoon Karen in the early 60's on Guam when many of the structures had been blown to bits in our neighborhood. For months us kids spent inordinate amounts of time exploring construction trash and discovering all the new frog pits that developed in the foundation sinkholes of the razed buildings. We talked about how Dad resisted moving us to the "planned and cleared" community of Oceanview for so long that, finally, we and one other family who'd resisted leaving the semi-overgrown quonset community of Old NCS were finally and reluctantly forced to move. She also talked about roaming "the hills" (meaning The Black Hills in South Dakota) and "the fields" (meaning the fields around Mechanicsville, Iowa) when she was a kid.
    "Too bad," she mused, "that kids aren't allowed to do that, anymore."
    "I know," I agreed. "It seems like kids have a natural affinity for less civilized areas."
    She nodded and rocked. "If I decide to have kids," she said (I love it when she replans her life in warped time), "I think I'll bundle them all up," she opened her arms and scooped up her imaginary future passel of kids, "and we'll all move back to The Hills."
    "Good idea," I said. "Can I come, too?"
    She gave me a startled glance. "Oh, of course! They'll be your kids, too!"
    Cool.
    Later.

...specifically journals that are listed over to the right in my Honorable Caregiver Blogs section. Last night I caught myself up on Karma's journal, JewBu Quest. I'm glad I did. Nothing like a dose of hard reality to strengthen one's resolve. The link connected to the words "hard reality" is to her September archive, which describes her extraordinary difficulties in monitoring the bleak and insufficient level of care her mother has been receiving in an assisted living facility. In order to get the full effect I recommend reading back from the time Karma's Mom was placed in this facility, which happened in early May of this year. The entire time frame provides a lesson in what can happen when one places one's loved one in an assisted living facility; not to mention a nursing home, which, ostensibly, provides, by law, better intense needs care but, well, I had some problems similar to those of Karma's with the one Mom was in for two weeks in August of 2004 for short term therapy and can not only imagine but have documented that many of the problems Karma is having and to which she refers through other articles cannot be counted out in nursing homes. The only difference seems to be that there might be, in one's home state, better, more available "remedies" through state oversight, if such a word can be used.
    Karma also lists some on-point links that I'm going to repeat here, simply because I expect most of my readers who haven't traveled over to JewBu Quest won't read Karma "from cover to cover", so to speak, and may miss these important links:

1. SmartMoney.Com's review of 10 Things Your Assisted-Living Facility Won't Tell You
2. A short personal review and verification, at AlzHub, of the above mentioned article
3. Further documentation, courtesy of AlzHub, of horrifying experiences at the hands of assisted-living facilities; read the comments on this one, especially this one, a rallying cry, which has been posted on at least one other website.

    These timely links were put into particularly sharp perspective for me because I read them not 24 hours after reading an optimistic short article in the Goldman Mature Market Report talking about the Green House Project, a nursing/assisted living facility alternative that has also been championed by Dr. William Thomas, author of What Are Old People For?. The article quotes Mr. Robert Jenkins, president of the NCBDC, that "within 10 years double-occupancy nursing homes will be 'obsolete.'" That sounded a little too optimistic for me, so I decided to punch "Green House Project" into Google. Up came 13,800 entries, among them this story on the AARP website that mentions: "The nation's 16,000 nursing homes have reason to experiment: Their number has fallen by 800 in the last several years, and they still have an 11.5 percent vacancy rate. Though industry-wide change can come at a glacial pace, especially when it requires reinvestment, 20 facilities around the country have announced plans to build Green Houses. Even before the study results were out, nursing home personnel from across the country were coming to Tupelo for monthly training seminars." As well, in comparing the Green House in Tupelo, Mississippi, with a traditional nursing home across the street, despite the many quality related differences: "What do private rooms and a staff-to-residents ratio double that of the Cedars do to operating costs? The national average monthly fee in a nursing home tops $5,000. In Tupelo, Green Houses cost about the same. Medicaid covers the cost for 90 percent of the residents." In other words, quality care costs the same as inadequate, dehumanizing and clearly dangerous institutional care. Initial constructions costs, the article mentions, are what will slow down the pace of industry wide change.
    Let's hope, against the backdrop of the depressing topical links above which I borrowed from Karma's website, optimism is warranted.
    All in all, my hard dose of reality involves a rhetorical question Karma asks in her journal, after experiencing the insane level of frustration over monitoring assisted living facility care for her mother: "How do in-home caregivers do it?" [paraphrased, as I'm not sure exactly where she asks this]. After reading of her trials, I have to say, I have a feeling my frustrations and anxieties are nothing compared with hers. When the day is done I am here, with my mother, knowing exactly what kind of care she is getting, why she's getting this kind of care, and who's ultimately responsible: Me. There are lots of circumstances about which I can do little or nothing: The medical-industrial complex; reluctant relatives who've become afraid of my vociferocity on behalf of my mother's and my life; my society's and my government's misunderstanding and lack of support of my companionship of my mother, my motives and my desire to continue; the V.A.; etc. Finally, though, because I'm my mother's side-by-side, hand-in-hand, in-home companion, the quality of my mother's life comes down to me, and I can always do something about me. Always. It may seem as though I have "given up a lot", both in the present and future, to do this but, you know, I've got peace of mind. Those who know and love my mother have peace of mind regarding her life, regardless of any annoying, ephemeral vagaries of relationship that my frustrations create between me and each of these acquaintances and loved ones. It's this overall peace of mind that keeps me on track and continuing at my mother's side moment by moment, day by day. Call me crazy, call me misdirected, call me completely unrealistic and due for a miserable post-caregiving afterlife, but I, truly, wouldn't trade this for anything.