Saturday, August 26, 2006


The Dailies...

...have been caught up, such as they are. There is a review, dated today, of what's been going on over the last few weeks and the last few days. I've been a little anxious over the stats taken the last few days, especially today, but, you know, I'll let it ride for another few days, watch her stats, take her stats, which is something I haven't been doing much, lately, and see if this passes. I've already thought of one possible reason for it happening; the three doses of furosemide over the last three days. I'll stop that, though, now, make sure she gets enough liquid, keep her refined carbohydrates very low to nothing and we'll see how this shakes out.
    I made the mistake of taking her BG when she awoke from her nap and scared the bejesus out of myself. I'll take them again before dinner, of course. She chose, today, not to have lunch. Wasn't hungry.
    Anyway, for a more complete overview, if you're curious, take a look at today's review post for the past few weeks.


Rambling Ketchup

    In the meantime, the actual caring for my mother has provided me with a break from the presently not-quite-there mental jumble these thoughts are producing. What a surprise it is to discover that caregiving can sometimes be "the vacation", "the relief", "the break".
    Time to start the Mom's day, a half hour earlier than her usual 12-hour-sleep mark. Time for surprise relief.

Thursday, August 24, 2006


After days and days of struggling... get my mother up, keep her up, seduce her, again, in the middle of her day, from naps, suddenly, today, she scared the bejesus out of me by coming up behind me in the kitchen while I was emptying out the dishwasher at 1100. My joy knew so few bounds that I convinced myself this meant I was going to be able to usher her through an "active" day. I was wrong about that. It took only a few spirited suggestions, that she come out with me and supervise weed pulling, that she accompany me to the grocery to buy fresh vegetables, before she said, "Do I have to do something today?"
    I laughed, remembered her note to MFS, and told her, "No, it's not required, I'm just pleased you're up early, today."
    She was awake for most of the day, right through to 0015 this morning, when her light went off, and took only a 45 minute nap. Since "lights out", too, she's been to the bathroom twice and both times we've had extended discussions about her school years and her mother.
    Even now, after all these years, her revivals catch me delightfully off guard.
    We had one interesting smoking episode today that actually began yesterday. We've continued to cue episodes of Northern Exposure, working back from the fourth season. We're in the third season, now. About halfway through one of the episodes, my mother motioned for me to pause the DVD.
    "Where's my purse?" she asked.
    "It's behind you on the hearth, Mom, but it doesn't have much in it because you hardly ever go anywhere and when you do you don't carry a purse anymore. What do you want?"
    "I want to see if there are any cigarettes in it. I want a cigarette."
    I was startled. It's been several months since she's remembered cigarettes, or smoking, long enough to want one. This was especially surprising because she managed to get through our Bette Davis fest without ever "looking for something" or coming right out and mentioning that she wanted a cigarette, despite the fact that she was verbal with her reaction to Jerry Durrance's habit of lighting two cigarettes at once in Now, Voyager. Besides which, we haven't watched anything in the last few days, as far as I could remember, that featured cigarettes. "Mom," I said, "there aren't any cigarettes in your purse. We don't have any."
    "Then I'd like to go get some," she said.
    I didn't hesitate. "No, Mom," I said. "You don't smoke anymore. No one smokes in this house."
    She gave me a sly look. "Oh yes they do," she said. "That woman who visited yesterday, she smoked a cigarette."
    Shades of deeper dementia, I thought, immediately bringing to mind all the journals I've recently read that describe Alzheimer's episodes involving hallucinations of people who "aren't there". I've come to accept and work with her memories of the dead being here, but this was different. We haven't had any company, concrete or the illusory dead, for a long time. "What woman?" I asked.
    "Oh..." she fretted a little, "you know. I can't remember her name but I can see her plain as day. She smoked a cigarette out there," she motioned toward the dinette.
    "Mom, no one was here, yesterday, besides you, me and the cats, and none of us smoked a cigarette in the dinette."
    "I know. It wasn't us. You know who I mean..." she struggled some more, "she sat at the counter and had a cigarette."
    Ding, ding, ding! I realized to what she was referring, astonished at her memory of it. Yesterday, one of the episodes of Northern Exposure we watched was A-Hunting We Will Go, in which Ruth Anne, who has just celebrated her 75th birthday, is scolded by Ed for smoking a cigarette, who believes it will endanger her life, of which he thinks she has little left. When Ruth Anne smokes the cigarette she sits at the counter in her store. In response to Ed, she launches into a lengthy explanation that she started smoking when she was a child, rolling her own. Her habit continued through a high point of three packs a day during the Eisenhower years. She had, since, cut back severely on her own. She "now" smokes no more than one cigarette every other hour and has no intention, at this time in her life, of "going cold turkey". I remembered this scene almost verbatim for a couple of reasons: First, I was surprised to see cigarettes being shown on this show; second, as the scene played out, I held my breath, waiting for Mom to not only begin "looking for things", but, since the word "cigarette" was verbalized, to be aware of that for which I expected her to look. Nothing happened, though. The scene played out, my mother never flinched and our day proceeded without further mention, by words or pantomime, of cigarettes.
    Until today. I guess the scene's defense of elders smoking made a slow but solid impression on Mom, to the point where, this afternoon, she 'remembered' Ruth Anne sitting at our counter yesterday (which doesn't have chairs, by the way), smoking a cigarette in our house.
    My hard memory of this scene, though, allowed me to rally a quick, firm counter attack. Upon realizing that it was triggering not only Mom's desire for a cigarette but a self-righteous attitude about her right to smoke, I decided to face it head on. First, I explained who "the woman" was and where she had actually been, on our television set. I triggered the episode and the scene as an audio visual aid. Mom nodded her head approvingly as it played. I'd expected not only this but also that she was going to use Ruth Anne's defense as her defense for being allowed to smoke today. Thus, I launched my third wave. I reversed the scene after it had played once. I paused it and went through the entire history of Mom quitting smoking while she was in the SNF in late August of 2004. I was honest about all of it: That she had forgotten that she smoked and that I took advantage of this in order to encourage her health to improve. I explained to her that she does smoke, on occasion, when we visit MCF and her family, usually three times a year or so, becase they smoke. I told her I don't refuse her cigarettes when she is surrounded by smokers. I didn't mention that I ration her cigarettes in a variety of ways to make sure she doesn't fuck her lungs in one sitting. Finally, I play-paused the scene again and explained to Mom at each juncture exactly why I will not allow her to become a full-time smoker anymore, citing her excellent health for the last three years and telling her that if we introduced smoking back into her life her desire to be "poked and prodded by doctors as little as possible" would go down the drain. I pointed out that Ruth Anne had none of the health conditions that Mom has. I explained, in detail, why these health conditions transformed Ruth Anne's defense into pure folly for Mom. She would, I said, be on oxygen a lot more, be taking breathing treatments again, would probably be experiencing lots more doctor appointments and health crises, would probably be on much stronger doses of blood pressure medication and our life would, once again, be a living hell of recovering from one doctor visit while awaiting another every few weeks, not to mention the emergency room visits. I bluntly told her that the elimination of this one habit was responsible for our vastly improved quality of life and, for this reason alone, I was not willing to reinstate smoking. I added that she continues to forget that she smoked, most of the time, and I'm pleased about this. I brought it home by telling her that, although I work hard to make sure that she is allowed to live her life as she wishes, with two years of evidence under our belts that eliminating smoking has made both of our lives easier and has vastly improved her health and undergirded her desire to "live to be 120", this is one desire of hers I refuse to grant.
    She didn't argue. I could tell by the glare in her eyes that she was not completely accepting, but I could also tell that she understood my reasoning, agreed with it in theory and realized that I was not going to back down.
    After a few minutes of staring each other down, I said, "Mom, I'm not going to reverse myself on this, like I often do on your prodigious sleeping and your preference for a sedentary life." Hoping to place a subliminal suggestion, I finished with, "You may as well relax and decide to continue to let your creative memory work on your behalf on this issue and forget that you smoke. You did it before, you can do it again. If you do this, you will be continuing to do yourself a huge favor."
    She relaxed into her rocker and allowed me to close the issue.
    Twice more, this evening, she "looked for something", but her dementia kicked in both times and she forgot the object of her desire before she could name it.
    Bless her dementia. It can be counted on, at times, to operate in her best interests.
    Well, shit, I'm up longer than I intended, tonight. I'd better set my alarm. I want to be ready in case the miraculous happens again tomorrow (which is today) and she springs forth from the head of her bed before noon. Who knows what surprises lurk in the shadows of demented days?

Wednesday, August 23, 2006


Once again, over the weekend...

...I found myself explaining the purpose and thrust of my journals to someone, without, this time, referring to the the inadequacy of the word "tragic". I discovered that it's good to revisit one's motives and direction, every several years, to see if one has remained on target. It seems I have. After considering my explanation, I decided parts of it would function admirably as an apologia for my journals, which it recently appears they need.
    For those of my visitors who are having trouble finding the kind of support for which they are looking when my journals appear in searches or click-ins from a journal devoted to the experience of having parents with Alzheimer's, the following should help you determine whether to continue reading further:
    I don't consider myself primarily a caregiver to a parent with dementia, Alzheimer's or not. I identify myself as my mother's companion. She asked me to accompany her through her last years in 1993. I assented. I also identify myself as my mother's caregiver and "a caregiver to an Ancient One". At least as often as I talk about taking care of her, I talk about accompanying her. I more often talk about the journey I'm on with my mother rather than the task of taking care of her.
    I do not identify my mother primarily as a woman with dementia. She exhibits a form of mild dementia which I call "Dementia-Lite". For a personal definition, click into the Who Am I? podcast. I identify her primarily as my mother, a woman, like all other people, with an eccentric spirit, character and personality, all of which I am more likely to take into account when writing about our journey than I am her dementia. As well, I more often fret about the challenge presented to me by her other health issues than by her dementia. I am more likely to muse about and describe her dementia. If anything, in regard to all her "conditions", I put the highest emphasis on her status as An Ancient One, not on her status as A Demented One or An Ailing One.
    I didn't begin my essaying and journaling with the intention of writing about what it's like to take care of a elderly parent with dementia. I have, over and over, described my journals, within these journals, as an account of my journey with my mother as she travels her Ancient years. In my audio introduction I begin by talking about my journals as being a report of my companionship of my mother in her Ancient Years. Only twice in my introduction do I use words related to "care". Only once do I refer to her dementia.
    My intention has been, and remains, to report what it is like to be my mother's companion in her last years. Yes, she is lightly demented and will remain so. Whether this dementia progresses is another matter. Lately, since her Anemia Due to Chronic Disease has come under excellent control, I've noticed a slight improvement in her dementia. Yes, she has health issues which are sometimes well controlled and sometimes flare. Yes, many of my reactions to her, my and our circumstances are triggered by her dementia and her health issues. Overall, though, my journals are not primarily about these.
    It is probably significant to my journals and my mother's and my journey together that my mother asked me to be her final companion before she developed dementia. It is probably also significant that I wasn't moved to write about our journey until it became obvious that it was important to become her full time companion, thus, leaving the world of "gainful employment" (although I consider that I am "gaining" a tremendous amount that I'm glad I haven't missed, "employed" as her full time companion) two and a half years after I came to live with her. At that time, she wasn't displaying signs of dementia but she was displaying signs of failure to thrive, which are documented in other areas of this journal. I wasn't moved to turn my sparse online writing and posting of essays (which began in 1998) about being her final companion into journaling until after her dementia had begun to have a significant effect on our lives. Still and all, my primary intention has remained to write about our life together, not her dementia.
    I believe it is important to the integrity of my writing and journalizing that they not be defined as something they are not. No doubt they contain support for people who define their caregiving as primarily to parents with dementia. No doubt they contain a lot of material about an elderly woman who is demented and who has a variety of health issues. Overall, though, they are about my journey with my Ancient mother through her final years, not about taking care of a parent with Dementia-Lite and health issues.

Tuesday, August 22, 2006


I've lately noticed and been spottily reading...

...a curious journal called Other Lights - Journey of the Liminal Being (site has moved; new link will be added later). I discovered it some nights ago when I was wandering the web looking for thoughtful information about the kinds of relationships Ancient Ones (there may be as many takes on this relationship as there are Ancient Ones) develop to death. As you know, if you've read me for awhile, because of my mother's intimate involvement in what I refer to as The Dead Zone, which is where she communes with all those she has known who have died before her, I also am often speculating on her relationship to death. One of my foremost speculations is that she has not yet faced her own mortality, which continues to astound me, considering that, as a species, we consider this not only an important task, but assume that it is something we all, at one time or another (sometimes not until the moment of death), must do. Much has been written about this. This task is even considered typically to be plied during a particular stage in one's life, the late middle years. I have even, at times, considered that part of the reason my mother remains alive is that she hasn't yet faced her own mortality.
    Well, today I strolled over to Other Lights and rambled through more of the posts. One of the posts upon which I lit (pun unintended but appropriate) was about death. Its first sentence attracted me. I savored it as I read, rereading sentences, comparing their contents with my own common thoughts about death evoked by my consideration of my mother's death...suddenly...
    I can't explain the transference. I can't tell you how I came to the following realization, but realize, I did, that she is understanding "the truth": That she is immortal. I am the one who has "not yet faced" something, my immortality. I may think that I have, and may think, as well, that I have moved beyond this to embrace the 'inevitable task' of facing my mortality, but I am mired in the intellectuality of mortality, in the reality of my mortality and hers and, thus, am the one who has it backward. She is the one who has 'moved beyond'.
    Now that I am thinking about this, I am also realizing that this is what I really mean when I write, as I did in What if I told you... that the caregiver to an Ancient One, if not Ancient herself, is always the child to the parent. Because we caregivers, especially those of us who care for those we describe as demented, believe ourselves to not only be adept but more adept than those for whom we care, we think we have something to teach, or reteach, our Ancient care recipients. In a limited way, this may be true, but we magnify this truth into a truncated myth when we also believe and point to evidence that our Ancient care recipients are doing something we call "going backward". We see only the linear, not the circular [, make that 'the spiral', further, the intra-connected spiral, oh! That's what the mathematical symbol for infinity describes, in its inadequately two dimensional way, isn't it! An intra-connected spiral!] we speak of decline, we mourn our care recipients' former adeptness, we fear the loss of our own and we perceive our task, as I often do, as "taking up slack".
    I'm wondering, now, if what we are really doing (or, attempting to do) is simply disabling distractions, and thus, providing a comfortable, serene environment within which our Ancient Ones, regardless of what we perceive, are able to go forward, in better words, go on.
    I'm considering, now, the complications of thinking this way: Are those in the deeper throes of dementia, in their agitation and their depression, "going on"? Are those who are fetalized and seemingly (perhaps actually) cut off from our reality, which we consider supremely important, by their dementia "going on"? Is this "going on" consideration simply a romantic notion we caregivers employ to deny our care recipients' reality because it is too incoherent, too painful in its implacability and we need to escape the prophecy it seems to contain for our futures in order to continue to deal with our present reality?
    I don't know.
    What I do know is that my realization has brought, on its heels, yet another measure of peace to me in regard to being my mother's companion through her Ancient Years, unto her death. I am grateful for this sense of peace. I'm hoping it will allow me to lessen any disturbances I cause my mother as she continues her journey, reaches her hand out to me and says, "See that? Doesn't that look interesting? I think that's where I'll head. Come on. Since I'm still here and so are you, would you like to go with me, as far as you can? I'd like you to. And, when we must be separated, I assure you, I will continue to feel and treasure the touch of your hand until we are both aware, again, that our hands never stopped touching."


I'm up...

...and so is the 100th edition of Grand Rounds. Once again, the submissions are featured in an unusual layout with handy, interesting write-ups to help you select what you want to read. Yes, one of my posts is in it, the third under the "Science" section (you'll understand what I mean when you click in and scroll through the presentation). I forgot to mention that one of my posts was also selected for this week's Patient-Consumer Parade; it's the first honorable mention post. But I'd be surprised if you hadn't guessed this, seeing as how I doubtless wouldn't have mentioned the PCParade in the immediately previous post, otherwise.
    Well, anyway, I think I'll finally head for bed.

Monday, August 21, 2006


Not for the faint hearted.

    This week's edition of Patient-Consumer Parade has been published. The topic, "The Fabric of Our Lives", described by the host Kerri at Six Until Me., the moderator, in her call for participants as submissions that weave our daily doses of patient-consumerism into our everyday lives, is thoughtful, timely and solicited some bone chilling posts.
    Highly recommended. Click into it from here or from my links section to the right.

Sunday, August 20, 2006


Couldn't resist this last post...

...just a few minutes before her 12-hour-sleep mark is up.
    I just clicked into sitemeter to look at search phrases, again, and noticed the following: "what to pray for for my mom suffering from alzheimer's".
    I would say, peace of spirit, for both Mom and child.
    Any other suggestions?


I finally rescued... intention to quote the two "interesting things" in the thank-you note my mother wrote to MFS for the birthday flowers (mentioned here and here) from my mental trash bin today while reviewing my old errand lists and ripping them out of my constant-companion-purse-sized-notebook. I'd copied the two items onto the bottom of an errand list. In the order in which these items appear in the note:
  1. "[Mom's dead older brother] is still in Chicago as far as we know and he's still not found the right girl."
  2. "It feels good just to sit and not do much of anything."
    Mom's brother, of course, long ago found "the right girl". The interesting thing about his marriage, though, is that no one in the family ever developed a smidgen of fondness for his "right girl", except for my mother, whose attempts at fondness were severely tested by Right Girl. Mom persevered, though, right up to the end of Right Girl's life, in line with her Jesus sensibility regarding always assuming the best about people, even when they can't seem to prove anything but the worst about themselves. After I read the note, once Mom had decided it was ready to send, without referring to the questionable correctness (I consider it questionable because, of course, to her, the note was correct, since her reality, at the time the note was written, was that her brother was still enjoying his bachelor days), I asked my mother about her family's feelings about her brother's choice of a wife and how the family initially reacted to her. Did they, for instance, give her the benefit of the doubt and like her, at first, until she had proven herself unlikeable?
    "[Dead brother's wife] told me, once, that when she met the family, I was the only one who kissed her. I hadn't remembered that."
    "Is it possible," I asked, "that the family actually didn't want [dead brother] to get married or were miffed that he did so without prior family approval of his Right Girl, and this might have colored the family's reactions to Right Girl?"
    "Oh," she said, "I don't think so. We were all beginning to wonder if he ever would get married. I think we were relieved that he did."
    "Well," I continued, "considering that a life-long bachelor tradition exists in your family (for generations, among both men and women), why was everyone worried that [dead brother] might be a life-long bachelor?"
    "I think we felt he needed to be taken care of."
    "Then, why so little rejoicing when he finally married?"
    "I guess we thought Right Girl wouldn't be able to take care of him."
    They were probably right. She was an unusually needy person, all her life. However, I'm thinking, now, it's possible that, consciously or subconsciously, [dead brother] may have been attracted to her extreme neediness in order to prove that he was not as needy as his family perceived and was damn well capable of taking care of not only himself but someone else, as well.

    Regarding the second interesting item: My mother has been trying hard to communicate this to me, over and over, for some years, now. Although there have been times, some years ago before her chronic health problems began to be addressed, that I believed her problem wasn't a desire to "sit and not do much of anything" but was related to depression, boredom and/or the catch-22 of increased lethargy, I'm now convinced that none of these is true. I now believe that when she's "not [doing] much of anything" she is, in fact, doing quite a bit, all of which is mostly invisible to me. Still, not being in or even close to the part of life through which she is traveling, being a mere observer, and a continually mystified one, at best, I tend to automatically resist her desire for "sitting" and outwardly appearing to "not do much of anything." She is mostly magnanimous with me when I try to prod her from her bed or her rocker when she's not interested in leaving either. Occasionally she'll get a little perturbed with me but I think she is as aware as am I that regardless of how beneficial my presence in her life is to her and regardless of how close we've become in the last twelve and a half years, I have only a faulty perception of her inner and outer life and her desires for how she wishes to continue that life. She is, in essence, as tolerant of me and gives me as much of the benefit of the doubt as she was of her brother's Right Girl. She likes me much better, true, and her love for me is much more personal than her like and love for Right Girl. But, bottom line, she knows I have as much difficulty fighting my way past myself to seeing who and where she truly is as Right Girl did.
    Bless my mother's magnanimity of spirit, which persists even in her phasing. It is responsible for making our lived-together-life much, much easier than it would be, otherwise.
    I love you, Mom.
    Time to get up.


O.K. I've run several tests this evening...

...and it looks as though everything has been straightened out in regards to me sending and receiving email through this address. I'm hoping I didn't lose any messages, going or coming, along the way but, well, if I did there's nothing I can do, now.
    It was, apparently, all due to my problems with my domain provider. Those really do appear to be resolved, she said, crossing her fingers.
    What a week it's been regarding all communications issues for me, especially those that involve computers. I used to "do" astrology, some years ago. The whole bit: Casting all kinds of charts, including but not exclusively natal; all kinds of things with those charts including progressions, transits, blah, blah blah... Although it's always been a bit difficult for me to "believe" in astrology, for some decades, since I was a teenager, I've been fascinated, first, with what I refer to as the psychological algebra of it; second, how it hones one's focus to a person or event or question, despite it's questionable reliability, and; third, I just used to think it was fun. So, naturally, I retain a whole bunch of astrological data in my head. Anyway, because this week has been so challenging for me from several computer-communication perspectives, this evening, just out of curiosity, I decided to pull down a tropical ephemeris for the week from what used to be one of my favorite hard astrological data sites and take a look at what was going on. Sure enough, on the 15th, when the domain problem came to a head and just 24 hours before I received the bulk of the comments on "the demon post", a Fixed Grand Cross, triggered by the Moon's movement through Taurus, discharged into my third house right on top of my natal Moon and Mercury, zapping a perpendicular opposition of Saturn and Neptune. First, Second, Fifth, Sixth, Seventh, Eighth, Tenth and Eleventh Houses involved by rulership. Shoot. Essentially, the interpretation is: Relax, you can't win for losing. "Breathe deep the gathering lights fade from every room." [Thank you, Moody Blues]. I didn't have a chance in communications hell, which is exactly where I spent most of the week. Even minor things were going wrong: POS debit machines malfunctioned as I was using them; my trusty iBook greeted me more times than I care to recall with the smiling idiot folder because my permissions were going haywire; my word processing software blew up on me (by that time I knew better than to try to reinstall it until things settled down); my mother and I misunderstood each other several times this week, nothing major, usually humorous, but definitely noticeable. The last episode of this happened tonight and kept my mother up until 0130 trying to figure out what tonight's confusion was all about.
    Whew. I'm glad we're into the weekend and things seem to be smoothing out a little. The Moon's moved on by a couple of signs, now, into, literally, my house of friends, hopes, wishes and dreams, putting it in a position to trigger lots of trines, including a Grand Trine in Water, my overriding natal element. Looks like Mercury may have a few tricks up its sleeve, but they're all of the T-Square variety and they're being modified by those nice trines. I can handle that.
    I know, probably no one who reads this will understand a word of what I just typed, but I wanted to record it for my own edification. It's been Shakes the Clown week, all around.

All material copyright at time of posting by Gail Rae Hudson

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