I didn't get back here, much, today...
...so am, once again, putting off my dissertation on Mom's colonoscopy and why we've decided to have that particular invasive test done. My explanation even has a web page address, but I am too tired to post it.
    I do, however, want to mention that I've entered one of two comprehensive blood and urinalysis tests. It isn't linked to anything, yet, but if you're curious about what she looked like on paper at a time when concern about anemia was abating (she'd been on iron for about a month at the time of the test), here's the link to the test results. All posted results are accurate.
    I'm tired, tonight. We, and I, have had a full day and evening, topped off with a viewing/taping of Mr. Smith Goes to Washington and part of a dog show.
    Note to Myself: I called Mom's oldest living cousin (90; she said to me, with a groan, "It's not fun to be 90,") by marriage in Iowa, the one with whom we went to the Grand Canyon several years ago, and Mom later called her after this cousin had rallied another of Mom's cousins, an inbetweener at 88. I want to mention that conversation. Those who know my mother will find what I witnessed on her end interesting, at least.
- posted by gail rae @ 23:47  0 comments   email...this post

 
Oh, one more thing...
...before I forget. Today, while driving around on errands and letting my mind wander, I suddenly realized that I am not just taking care of my mother, I am taking care of my father's best friend for most of his life, the woman who allowed him to be a father, his lover as well as his wife, and not only the passion of his life, but his partner in creating his four other passions. My father was nothing if not a man fundamentally devoted to family.
    Realizing this caught my heart by surprise and caused it to gasp, and correlates to another wandering-mind-in-wandering-car episode I had a few weeks ago: For absolutely no reason, because, although I can't remember what thoughts were wandering through my mind at the time, I do remember that none of them had to do with caretaking, my mother, family, family history, or gratitude, for that matter, I was, well, the only word to explain the feeling is "enveloped", gently, sneakily, like a slowly encroaching then receding presence, by an awareness that Dad was, during those transported moments, thanking me for being with Mom and looking after her, and, he added, doing this so well. None of this was in words, but its lingual translation is unmistakable.
    Most of the time I believe in life of some kind after 'death' for each of us entities. Sometimes, though, I doubt it, sometimes I even hope for none, so I am always skeptical of such experiences. I follow them, give myself up to them, allow my spontaneous understanding of them to be as open and automatic as possible, and yet a sly part of my brain is always looking for other explanations, usually having to do with my unconscious processes vomiting up something of my own creation. Today, though, as I contemplated the enhanced identity of the woman whose hand I now securely hold and will continue to hold until her death, it seemed to me that this realization also came from somewhere out of myself. Wishful thinking? Maybe. But I think these experiences, regardless of their origin, have completely benevolent consequences for my continuing relationship with Mom and to her life.
    And, I suppose, I am a person of sentiment, deep, sometimes profound, sometimes ridiculous sentiment. Always have been, but the nuclearity of menopause adds a density which seems to allow, I think, although I haven't done a definitive study, for more of such seemingly out-of-ego experiences that, in fact, may be so in-the-ego that we are incapable of understanding this.
    Still, I savor these experiences. They add a glistening element to the life I am leading, now, with my mother.
- posted by gail rae @ 18:44  0 comments   email...this post

 
Yes, I will be posting, later and...
...lots. I'm pretty busy, right now, and I have much I want to mention, so it may be a rather lengthy post, or, perhaps I'll chop it up by subject. Tonight's posting will include coverage of Mom's colonoscopy, the why (especially since we have been anti-colonoscopy up to now) how, when and where.
- posted by gail rae @ 18:15  0 comments   email...this post

 
I began the previous post at 2312 MST, 7/11/03,
(the same as PDT, at the moment, because Arizona, where we reside, does not observe Daylight Savings Time). It is now 0014, July 12th. About halfway through the David Letterman interview with the departing Enviro-Czar I decided to check Mom's feet, see if the swelling had gone down. It had been about an hour and a half since I'd given her the furosemide. Evening before last the quarter pill didn't work sufficiently fast. This evening it did and, as well, Mom drank some water and finished her coffee without me reminding to her. Good sign.
    I can feel her bone tiredness when it's afflicting her. Earlier this evening, as I rubbed her feet, I gave both her and myself a lecture about making mistakes on which days to let her remain prone and which days to get her moving. I think, now, that today a mistake was made and I scolded myself and explained, sternly, to her how it is that me giving in to her bone tiredness this morning (I very reluctantly canceled her hair appointment at her second request, although, truth be told, I knew when I awoke her this morning that it was going to be one of those days) led to the "unnatural" swelling this evening.
    When I checked on the egress of her foot swelling I settled down next to her with cups of Lemon Zinger tea for both of us and broached, again, the subject of using the wheel chair. She admitted to me that "...using the wheelchair makes me feel..." she paused for moments, looking for the right word, and I didn't supply it, as I sometimes do when her brain is sluggish, "...like I need it." Her face looked like she was a child again, being made to swallow cod liver oil.
    I understand this. I knew she was going to say this. So I approached her from the perspective that it is (and, it is) entirely possible that she will progress, when her anemia has been successfully addressed, to the place where she will once again put the wheel chair aside. "But," I reminded her, "it was a gift. From [MCF's father (who died in January of this year)]. He knew how you feel about wheel chairs. He knew how you feel about using a wheel chair. He used to feel this way, too. But if you use the wheel chair when you're weak to get out and stay in touch with the world you so love to watch (and, I said, and meant, this fondly; it is this affection for life that keeps her alive), it will motivate you to want to get out more because it'll be so easy. You already know this. It even makes a dynamite walker/shopping basket. And, believe me, when your anemia is cured you will want to spend more time up and out. Consider it a gift, Mom. It will actually help you get stronger faster because it will make it easy, when you're weaker, to get out and the more you get out, the stronger you'll become and the more you'll want to get out."
    She could blearily see some sense to this.
    "Mom," I said, "I'm going to repeat this wisdom to both of us over and over and over. I know there will come a time when what is now considered a dangerous condition that can be reversed will be an inevitable condition that must be managed. But, we're not at that point, yet, with anything but your diabetes, and that management has been wise and has not decreased the quality of your life [It has increased it immeasurably, but I'm not sure she remembers this so I don't mention it, anymore; that is one fascinating fact about the forgetting of the old: they are innately suspicious of that which they have forgotten; almost as though forgetting has erased the "item" and its influence from their lives.], nor has it put a cramp in your style. Let's trust that this will apply to your anemia, too."
    I will, of course, if I think it's necessary in the near or far future, need to remind her of everything we said and, in a way, vowed, to our conjoined efforts on behalf of her life. I confessed this to her and she nodded, acknowledging that, yes, I am one of her more pedantic daughters (although not the only one), and will no doubt remind her. Ad morpheum.
    Then, she talked me into a bargain. Sly woman. Since, she postulated, her body was doing all these strange things right now, and was pretty much beyond our management until we discovered a cause, wouldn't this be a good time, before the colonoscopy, to cash in that See's gift certificate?
    That she was even considering the possibility that the colonoscopy might prove to be therapeutic pleased me. So did her wiliness. I laughed. And sighed. Yes, I said, it would. But, I'm not going to do it without you. You have to go, too. And, you have to go with the wheel chair. You've done it before, recently, at Target, I reminded her, and Walgreens, and you really enjoyed yourself.
    "I know," she agreed, in a way that let me know she was choosing to not remember this. "Okay. I'll go."
    "You'll have to," I confirmed. "No go, no candy. That's it."
    "You're a cruel task master," she teased, in her most melodramatic presentation, all the while smiling like someone who knows they are well appreciated, well cared for, and well loved.
    Good. I like sending her off to bed feeling this way, feisty and grateful for the opportunity to have her feistiness appreciated.
    Time for me to turn in. Colonoscopy lowdown (pun not intended, but appropriate) tomorrow.
- posted by gail rae @ 00:44  0 comments   email...this post

 
I think I'll wait until tomorrow to post about the colonoscopy.
    I have something else on my mind, and, expressing it in my best Mom vernacular, "the colonoscopy will be there tomorrow."
    I gave Mom a quarter of a furosemide (10 mg) tonight. She needed it. She was swelling unnaturally. I can tell the difference now, and it has to do with when it comes on. If she is swelling a bit at the end of a day on her feet (so to speak...this often means simply being upright on her ass on a chair with her feet on the ground), that's what I refer to as "natural". Often, a vigorous, stimulating, shiver producing foot rub almost completely alleviates "natural" swelling in her left foot and makes her right foot more comfortable. As well, swelling from having a busy day is pinkish in color. The swelling that she is having this evening, swelling that follows almost an entire day either in bed or prone, very little movement, well, that's the "unnatural", dangerous swelling, the swelling that tells me fluid retention has already begun around her heart and lungs. It has a jaundiced tinge. This kind of swelling calls for furosemide.
    A few days ago, I think, actually, evening before last, I gave her a quarter pill, and then, two hours later, another quarter. Funny, though, she had been active that day, as well as alert, interested in being up, and we did a few things out of the house, including her doctor's appointment. She was also pink, though, and it wasn't her feet that led me to believe she needed some help releasing fluid; it was her belly. It's taken me awhile, but I can recognize the type of gut swelling that indicates cardio-plueral congestion. I'm not sure why it happened; usually, a day spent mostly vertical guarantees only on-my-feet-all-day swelling. She's quite anemic, right now, though, so her body is doing other strange things, as well.
    I am going to start another post to break this up.
- posted by gail rae @ 00:14  0 comments   email...this post

 
July 7 test results are up!
    I've changed the organization a bit. Since I expect I'll be uploading lots of results as time goes by, I've changed the Mom's Test Results page to a table of contents. The test results are listed by date and type. You can click into the entire page or go directly to the results you want to view.
- posted by gail rae @ 09:45  0 comments   email...this post

 
A note to MCS before posting later...
    Yesterday's test results aren't up yet. I should be posting them later today, possibly late afternoon. Exhaustion finally set in and I went to bed soon after dinner, and the oxygen guy is due today, so it'll be after he comes by.
- posted by gail rae @ 07:34  0 comments   email...this post

 
I am posting, today to say that I probably won't be posting, today...
...but, since I've made a promise to myself to post here everyday as an exercise in contemplation and review of my life as a caretaker I am posting my intention not to post. I am, I say, I am as I type, exercising, contemplating and reviewing, for today. For the rest of the day, I will be doing, with intensity.
    A NOTE TO MYSELF: Today is Mom's follow up doctor's appointment regarding last week's blood test and this week's follow up blood test. She was up very late last night, eagerly awake, so I'm letting her sleep in until the last moment. I hear her coughing, so I know she's awake...I'm letting her adjust to the idea of "awake". Last night she was pink and lively, although very dehydrated and a bit water resistant. I gave her 20 mgs of furosemide the night before last (10 mgs about 2 hours apart), as she was beginning a quick, critical swell and rubbing her feet worked only mildly and only on one leg. She tolerated the furosemide well this time. She did not leak in bed that night but complained in the morning that she was "up and down all night, busy in the bathroom". Good sign that she is alert enough to pay attention, in sleep, to her body's urges.
    We will also, today, be discussing the need for a colonoscopy. I've not heard from the gastroenterologist's scheduler and this is typical per last time, but this time I'm going to let my mother's primary care provider be responsible for harrassing them into scheduling my mother. He can clear the aisle according to how urgent he thinks it is.
    Pretty good job, I'd say for a no-post post!
- posted by gail rae @ 10:08  0 comments   email...this post

 
This is a quicky, this morning, primarily for my sisters:
    I have posted the lastest of Mom's blood test results here. You can also get there by clicking on Mom's Tests. All information will be indexed by the search engine attached to the appropriate site.
    I will do this from now on, posting the official results of all tests administered. I'll also, slowly (I expect), begin posting a history of her medical tests for those of my sisters and readers who want to compare Mom's historic results to her present results.
- posted by gail rae @ 08:12  0 comments   email...this post

 
This is familiar territory, but I didn't expect we'd visit, again.
    Although we don't have a doctor's appointment until Wednesday, Mom's doctor called today to tell me that, rather than improving, her anemia is getting worse.
    Getting worse. After pumping her up on iron supplements and iron rich foods, it's getting worse. It looks as though the next step is the step we avoided last fall, The Search for Internal Bleeding.
    My gut tells me that she is not bleeding internally but, then, it is her gut that is at issue, not mine. I've been poring over a lengthy article about anemia I got off the web, the one with the most information in it and the easiest for me to comprehend. I get it, now, why her doctors want to do a colonoscopy. On the one hand, she has some indices that point to Anemia Due to Chronic Disease, not due to internal bleeding. On the other hand, she has some indices that point to Iron Deficiency Anemia, usually due to internal bleeding. Her indices are confusing, at best, but because iron therapy sometimes works (it wouldn't always work if she had Anemia Due to Chronic Disease) internal bleeding finally has to be eliminated.
    She and I were both reluctant to have her colonoscopized (? on form) last fall. There are a variety of reasons, some of which were to-the-moment and no longer apply. For instance, she was recovering from severe dehydration and I was not willing to risk another blood pressure crash by making sure her colon was squeaky clean in one day. As well, although my mother tolerates tests well, she is not one who believes that invasive testing is a good idea. It was not that her colon was going to be invaded, it's that she was going to be invaded. As well, her anemia disappeared after iron therapy the first time. In fact, all problems disappeared. But, iron therapy isn't doing the trick, anymore, or, at least, sometimes it is and sometimes it isn't. So, it's time to start looking for internal bleeding.
    When we go through an episode like this (which is, as it turns out, a continuing episode that started late last summer) my thoughts often turn to what bodies do when they are on the last stretch. That last stretch can be a long one; in a relatively healthy individual, like my mother (when she is not anemic), it can last years, I think. At what point does one determine, either for themselves or someone else, when it's past time to try to make life better and switch to making life more comfortable?
    My gut is also telling me that my mother is still amenable to making her life better. I don't think I'm beating a dead horse by assuming that her anemia can be successfully treated. I know there is a good chance that, treated once, successfully, it will come back for treatment, again, possibly in a different form. Iron abnormalities are fairly common on my mother's side of the family and do tend to become worse with age. My mother, in fact, has had the abnormality, many years past, of having too much iron.
    The literature has wonderful tricks, though, for me. I want to see my mother more energetic and less apathetic, if possible. I want to see her move around more by choice with less hesitation. Here, again, in this literature on anemia, mention is made that symptoms of anemia in the elderly are, well, the same as with many diseases in the elderly; lowered alertness, fatigue, lethargy, shuffling gait. These are exactly what my mother is suffering, which give the appearance of a mild form of depression except that all are somatic and exclude the neurological. The underlying "promise" is that if the disease is addressed, the symptoms will decrease. But, there is no cure for aging. It isn't, at this point, nature's intention for aging to be cured. If, as humans, we find a way to cure aging, then, at that point, it will be nature's intention. But, we're not there, yet.
    I want all those underlying promises that I read in the literature describing my mother's dis-eases to be true. I want my mother's vitality to freeze at a point that allows her mobility and enjoyment in her last years, after which she simply falls over dead or dies in her sleep without warning. This isn't what usually happens, though.
    I am sitting here shaking my head, closing my eyes. All I can think is, here we go again. At least this time I think it is necessary. Last time I didn't think it was and, at that time, I was right.
    My mother is not thrilled but, she's a trooper. My only other thought, now, is that if it turns out that she is not bleeding internally but is somehow injured by the procedure of the colonoscopy, well, let me put it this way: I have done my best, I know I have, to see to it that this procedure, and any other procedures, are not done to my mother for such cavalier reasons as, "we could use the history", which was argued (unsuccessfully) once before when I expressed concern that it seemed a little suspicious to me that without being able to adequately explain why, doctors wanted to shove her onto the gurney and under a scope awfully quickly. I have researched more than most other medical clients, I am aware of the complexity of the issues involved, and I know I was right to disagree with the procedure in the fall and I know I am right to agree with it (as this point, anyway), now. So, if any physicians do harm to my mother in the guise of a colonoscopy that doesn't turn out to be necessary, my rage at the medical establishment will know no boundaries. This is the one aspect of this part of our current adventure that I know for certain.
- posted by gail rae @ 16:05  0 comments   email...this post

 
These entries are always off the cuff...
...although not always stream of consciousness. I take mental notes throughout the day of things that happen as I care for my mother that I think might be of interest to another caregiver, or someone interested in studying the caregiving relationship. When I next make it here I include these things, second mental draft, first paper draft.
    I read my entry earlier today and noticed I was bordering on profound stream of consciousness, so it is no surprise to me, tonight, that I have the urge to do something, here that I haven't felt like doing since I began this journal, which was begun to a purpose: I feel like wander-writing, tonight.
    I am thinking about my mother...who did, indeed, have a slow day, today. Although she was up a fair amount of time she sat in her chair so long this evening that, as she arose to go to bed, she complained of stiffness. Now, at 85 going on 86, stiffness doesn't need a night to settle in. She usually never complains about it. Tonight, she did. Her appetite was low so I followed it, since she was soooo sedentary. I considered giving her only 850 mg metformin this evening but, instead, I allowed her to eat light but tempted her to the things she needed with spices, serving her a small garlic and artichoke sausage and making sure that she drank 8 ounces of cranberry juice mixed with 8 ounces of carbonated water. A few hours after taking her medication she voluntarily made herself one of her nasty sharp cheddar cheese sandwiches with sandwich spread, which told me that, at least on a somatic level, she was alert and working smoothly, since she was regulating her blood sugar herself. Usually, when she's this tired and this stiff, it's easy for her to drift away from appetite.
    Although today has been a mellow day with no overt or subversive conflict, I am, for some reason, overwhelmed with a feeling of not quite doing all I could be doing, somehow being a bit stupid about how to stimulate her. I know people-watching is a favorite activity of hers. So is riding around in the wheel chair, which allows her to people watch in a sort of video form. Getting her out of the house to do these things, though, is overwhelming. I have, occasionally, followed more stalwart caregivers' advice to just do it, "tell them they're going then see to it that they go." Oh, how exhausting the resistance can be, though, for both of us. Sometimes, she loses herself and has a good time on these occasions. Sometimes, though, she is right about feeling as though she "shouldn't" go, as she usually goes offline at whatever the event is, but sleeps so restlessly that she has to recover from a bad sleep.
    I hear about NPH and I think, that could present possibilities, then read more about it and realize that those possibilities probably don't apply to my mother, and, maybe she's lucky they don't.
    I read those passages from Death Comes to the Archbishop and I think, let her teach me what it is she needs. And then she becomes pale and anemic and I think, no, if she wants to stay alive, I can't let her teach me, or, at least, I can't let her direct me.
    This is a foreign country, one that we can't visit, even as we take care of it's residents. How, I wonder, will medical science change these conditions?
    I'm done rambling. I'm going to bed.
- posted by gail rae @ 22:51  0 comments   email...this post

 
You know how some movies...
...operate like favorite poems or sayings...when you watch them, they have a mantra-like effect? They don't have to have much to recommend them: The acting can be wooden, the dialogue lackluster, the story more than familiar but, when you stumble across the movie, you cannot stop yourself from watching it until it releases you. I have an all-time favorite movie like that, Little Buddha. I've been hoping it would show up on cable without cuts or commercials so I can tape it. Last night, FLIX screened it, and another movie I thought my mother would enjoy (and I was right), A River Runs Through It.
    FOR THE RECORD: My mother's mantra movie is Dances With Wolves. Not only can she enter the experience of the movie from any point and be mesmerized, every time she catches all or parts of it (thank the gods it's a regular on movie channels) she can be heard to say, "Sometimes I think I lived like that, in a former life."
    Although my mother doesn't move much, she doesn't remain still, either. During any particular "awake" session she is shuffling from her rocking chair to the table, the table to the kitchen, the kitchen to the bathroom, the bathroom to the patio (to check on a plant I am miraculously keeping alive for the first time in my life), the patio to the mail box (regardless of what day it is, she still looks forward to mail delivery every day and insists on checking it at least once a day, regardless of whether or not its a holiday, and I let her, even though I now have methods whereby I make sure I see every piece of mail that enters our house). Last night, we'd planned on watching both of the immediately above mentioned movies beginning at 2000. We were out most of the day (a minor miracle in itself), and just made it home in time to "warm up the set", as my mother says.
    The truth is, although my mother still gets excited about having a "movie night/afternoon", it is almost impossible, now, for her to sit still and follow a movie from beginning to end. It's rather as though the less one's body wants to move, the more one's body wants to fidget, which figures. Thus, one way or another, she manages to distract herself and even movies I think will rivet her attention often fail to attract even a first intense stare through the beginning credits.
    Well, last night, my mother sat so still for four hours through two meditative movies that I was glad I was taping Little Buddha, as I missed a good quarter of A River Runs Through It because she didn't want to miss anything in either of the movies. She ordered me around to replenish her coffee, make her some "of that lemon tea that's a little sweet on its own"; "...do we have any popcorn..." (yes, we buy it by the case, now), "I think I need a napkin, here...", "just water, this time, please...". At one point she said, "I don't suppose you'd consider going to the bathroom for me?" then waited for another 45 minutes until the break between the two movies. My mother putting off going to the bathroom for anything is unheard of, anymore. Both movies will play again, one at my command, now, but my mother is on her last run. If I could have figured out how to relieve her bladder for her, I would have.
    I don't think she's ever seen River but she's seen Little Buddha as many times as I've seen it since I've lived with her. Last night, though, as expected, both were new to her. At the end of the last movie, as I was switching the recorder off, she said, "My goodness! Look at the time! [It was after midnight.] They just don't make movies like that anymore, do they?" Now, the really funny thing about this is that you'd expect her to be saying this about a rerun of a Tracy-Hepburn movie or The Bad Seed, a perennial favorite on which my mother and I have both doted for years for the unintended comedy effect lent by it's age. But, no, she said it about two relatively recent (considering her life span) movies.
    There is Something About Mary, this weekend. I'm not sure whether its the increased holiday activity (none of which involved relatives this weekend); the fact that (hopefully) my mother is reving up, again, for another round of life (she slept so much this week that she was ready to be alert and captivated by something, anything); it could even be the accidental position of the stars. But, she's had a good, active weekend, so have I, and although she's sleeping in this morning and something tells me she won't be up until around noon (I can see she was up in the middle of the night...she put the cheese away that I intentionally left out for her, just in case, because her appetite was hard to seduce, yesterday; cheese is the one food that my mother will eat even when she's incapable of being aware of whether or not she's hungry; popcorn is the other one of these foods), it feels like its going to be a "good" day.
    I have some errands to run, an overdue library book to return, and my mother will probably take it easy, today, remembering the blasts of intense heat she complained about yesterday every time we were between car and building. She won't, however, remember that she devoured the outside scenery every time we traveled from place to place, yesterday. She won't remember that she commented, late in the day before we got home, how nice it is to "make the rounds" on a regular basis. She won't remember that two movies absorbed her attention. She won't remember the impromptu July 4th dinner we had with MTNDN. But, today, I'll remember all those events and it won't matter whether or not she moves much. I'll be exhilarated because it seems as though we still have a ways to go together.
    It's, true. It's the journey that counts, not the destination.
- posted by gail rae @ 09:27  0 comments   email...this post