Mom & Me Two Archive

...I found it. However, it's too late for me to recover the dehydration post which was written on July 18th so, anyway, that one will be rewritten some day when dehydration is more heavily on my mind.

...in the publishing but I'll recreate it later. It's an important one. I've gotten in the habit, since losing the dehydration post, which I still intend to recreate, of copying before publishing. I was in a hurry, though, to take advantage of Mom's willingness to move today.
    Later.

...that of all my mother's behaviors described in the post immediately preceding this one are daily occurrences. It is not my mother's behavior that created a bad day for me, it was my reaction to all of these behaviors yesterday and my decision to allow myself to play out those reactions. In the inimitable words of Dr. Phil, "And, how did that work for you?" it worked splendidly, thank you, as it only barely affected the tenor of my mother's day, and then only for seconds and allowed me to release some of my built up frustration. In the absence of being able to rely on anyone to care for my mother while I take a vacation which, experience has taught me, will be fraught with concern over whether my mother is being taken care of properly, a bad day can be an adequate enough vacation for me at this time.
    I also want to record here that my mother's behaviors and others, many others, are not the sudden consequences of her back injury in October of last year, nor of her blood pressure crash due to medicated dehydration in the fall of 2002. Most of these behaviors such as her short term memory loss and her loss of the ability to concentrate in the moment have been building up since some time prior to the spring of 1997 when I discovered that, although she wanted to buy a house in Prescott, she no longer had the intellectual acuity necessary to participate in the deal and what it required of "the buyer". A few of the behaviors, such as her deciding to sleep away her days, began before this, sometime in 1996, when I was still working and she was staying in bed while I was gone. Loss of her sense of thirst, which undergirded the severe dehydration leading to the blood pressure crash (enhanced by dehydrating medications) started some time before the crash. I only became aware of it when she had the crash. Escalations and additions of other behaviors happened periodically between 1997 and 2000. For all practical purposes she's been as she is now since mid 2000. These behaviors I've described have gone through periods of escalation, plateau and, in some cases, recession, but recession never lasts long, although the plateaus can last for a long, long time, thankfully.
    All of these behaviors occur throughout the day in every circumstance including getting her up, bathing her, feeding her breakfast and on throughout the day. To give you a minor example, every time I take her blood pressure with the wrist cuff, which is now averaging three times a day, I have to remind her how to position her arms in order for me to get an accurate reading. She always starts out positioning her right arm as though she's having her blood pressure taken in a doctor's office. Although the reading takes less than a minute, at least once during one of these three daily readings, sometimes more, I have to remind her to support her right arm with her left arm, keep her right arm limp and not move or talk. When she sits at the breakfast table I have to remind her of the best way to approach the chair in order to not compromise her back. It's not uncommon throughout any particular day for me to have to remind her to go to the bathroom.
    This time I'm not complaining. It looks as though both she and I are going to have a relatively good, maybe even active (for her) day, even though I expected to be enduring bad day hangover. This time I'm doing what I think I should have done a long time ago in this journal, I'm recording exactly what the day of a caregiver who is involved in intense caregiving is like; the fact that the description has a "bad day" spin is incidental.
    You may think I handle all these quirks in behavior that define my mother's Ancient One Days by rote. I don't. First of all, I've never been much of a rote person. Although I've always been handy at repetitive behavior, the reason I'm good at it is that I don't consider behaviors repetitive, even such behaviors as data entry or, for that matter, negotiating my mother's days. Each moment, each requirement, each behavior, each response, stands alone for me and is negotiated as an act separate from and different than any act that may have preceded or may follow it. I think this "gift" of handling what others consider repetitive behavior (I don't even consider typing a series of repetitive behaviors) in the new-moment-by-new-moment way that I have is one of the reasons why I don't have more, many more bad days as my mother's caregiver. As well, I believe this "gift" is the main reason why I am able to handle her care at this stage of the game despite its escalation. It is why, more often than not, I'm glad I'm here and I can say without reservation that I enjoy what I'm doing with my mother, am aware of and take pride in the fact that I do it well and do not look forward to its end, with her, at least. I certainly am not considering doing this again once my mother's gone.
    As I pointed out in a recent post, all caregivers give care out of who they are. This is all that can be expected of any caregiver. I know that most people were not blessed with the gift of being able to operate by rote as though they are not operating by rote. I know that many people who received this gift received it over-abundantly and are typically labeled "autistic" [A footnote: One of the exciting recent discoveries about autistic behavior is that it appears as though it isn't a series of rote behaviors compulsively plied after all but is closer to a compulsive inability to have a "normal" sense of past present and future, which, coincidentally, allows those, like me, who are disallowed from rote behavior, to indulge in it. This is a simplistic explanation of recent discoveries, but not inaccurate.].
    Anyway, I just wanted to clarify exactly what happens on not only a daily but an hourly and, often, a minute-by-minute basis in the lives of caregivers who tend to the declining elderly or infirm. This is not child care and it is not child's play. It takes a different kind of awareness and flexibility typically not required in the raising of children or the normal caring of loved ones. This is not your father's Oldsmobile.

    Yesterday started out not just well enough but very well, thank you. Although I notice this morning that yesterday's post may strike readers as a bit raw, when I wrote it I was feeling very good. At some point the day began sliding downhill and I slid with it.
    I can't quite put my finger on what caused the turn in my outlook. Could have been a combination of the antibiotics, which knock me for a slight loop within an hour after taking them (I take them 3 times a day), combined with realizing I somehow strained the left side of my left knee and was having shooting pain upon rising from the floor, combined with having stepped on a bee outside in the morning and spending the day hobbling on a swollen left foot, could have been that I just needed a day's vacation from not only my labors but from worrying about whether my mother was doing well while someone else labored at her needs but knew I wasn't going to get one. The bad day didn't kick in immediately. It was sometime after Mom ate breakfast and during the time we played a couple rounds of Sorry and an aborted round of Scrabble; sometime before I tried to coax her into movement and she resisted. Usually when she resists if I fix her hair, bring her slacks out, put them in front of her and "order" her to put them on by simply expecting her to begin the task, this gets her moving. Yesterday morning, although it began looking bad for getting her in the car and out with me on a few errands, I was sure the fact that the rose bush she requested in the spring, Passionate, with the deep red blooms, was finally blooming would get her at least out on the driveway for a few laps. I left her to put on her slacks while I was setting up my bathroom for a much needed shower. When I checked on her progress with the slacks, knowing that she'd be unattended for a good 20 minutes and I'd better make sure she hadn't stopped her task with her slacks around her ankles, which she'd forget and which would cause trip over trying to walk away from the table for some reason, she'd traipsed into her bedroom, put her slacks back in a dresser drawer (they actually belong on a hanger in her closet) and announced that she "didn't need them, today". I gave up.
    As I showered I shed a few tears and realized my energy had sunk to almost nothing. I decided to leave the day up to my whims. This is how a "bad day" for us begins.
    These are the typical elements of our bad days, all of which were present yesterday:

1. I lost my ability to indulge her faulty short term memory. Just so you know exactly what kinds of information I am bound to repeat day after day, sometimes hour after hour, yesterday she repeatedly asked me:
   • about the skin infection for which I'm taking antibiotics and counseled me that I "really should get that taken care of";
   • about the arrangement and number of earrings in my ears and insisted on counting them each time to confirm my count;
   • what the "R/L" on my t-shirt stood for and why my t-shirt had the word "jeans" on it;
   • to go through the entire inventory of our DVDs under the assumption that we'd just acquired the collection;
   • when the last time was that we saw each of her other daughters and their families and why we hadn't seem them "lately";
   • to "go get the mail";
   • after spotting the sun tea jar outside the front window, why it was there and what it was;
   • every time I had difficulty getting up from the floor or rising from a chair because of the strain on the left side of my left knee, she asked me what was wrong;
   • pointing out that my foot appeared to be swollen, she asked me why, then told me I'd better take something for it because I've occasionally displayed allergies to certain types of wasp and bee stings.
   Instead of explaining or reminding her again of things I've explained over and over and of which I've reminded her millions of times, on one of my bad days I tell her, bluntly, "Mom, I've gone over that many times. You don't need to know that right now and I don't want to repeat it. So I'm not going to." Of course, I end up repeating this ad infinitum, too, but on a bad day it's more personally satisfying to say this than to repeat the requested information. Her reaction to me saying this is always amiable, several times a day, when I'm having a bad day.
2. Although I couldn't get her to move I was determined, because of the loaded-with-sleep days she's had lately, to keep her up all day so, not being able to even get her dressed to get out of the house, I gave up the errands and put my shoulder to keeping her from taking a nap. I finally gave up at 1650 but not before I warned her that part of her physical mobility problem was too much sleep. As well, which often happens, once she'd headed into the bedroom for a nap she forgot where she was going and why, turned around and toddled back out to the living room.
   "Look," I told her, "I've given up and this is your chance to take a nap. Are you going to or not?"
   "No, I don't think so," she responded.
   "Okay," I said, "final answer." At which point she arose and headed into her bedroom for a nap while, giving up once again, I steered her into the bathroom to pad her with three pairs of paper underwear so I wouldn't have to wash two sets of bed linens in one day.
3. Earlier in the day after breakfast during our Sorry tournament I found myself increasingly irritated with having to remind her of the rules throughout the game. After two sets, one win each, I suggested we switch to Scrabble. That didn't work for me. Her usual lag to figure out how to make a word from her letters and the constant reminders that she can't spell a word backwards or diagonally, can't reuse a "Triple Letter Score" space that's been used toward a previous score all irritated me. Finally, 20 minutes into the game I said, "I can't do this today, Mom. I just can't play a game with you today and continually remind you how to play it. I just don't have the energy." That was okay with her.
4. During dinner she couldn't keep her mind on eating, which is not unusual. As well, dinner had been preceded by a day of constantly reminding her to drink liquids, "Pick up the glass and take another swig, Mom," which also is not unusual. On a bad day, though, it's water torture for me as well as her. Finally, in frustration after flicking off the television (she'd wanted to watch something, I can't remember what, on TMC) and steering her from studying yet another spat between our cats so she would concentrate on eating I said, "Mom, look, I'm getting sick of having to 'eat' your dinner and mine, I'm getting sick of having to 'drink' your liquids and mine. You have enough presence of mind to concentrate on eating and drinking and you need to eat and drink. Tonight I'm tired of you relying on me to remind you to eat your dinner, drink your liquids. I'm not up to it. I think you can handle eating and drinking yourself for one night." My tone was not pleasant. The funny thing is, expressing my frustration is all it took. She finished her dinner and liquid on her own. The only other reminder necessary was that the pieces of chicken she was leaving in the bottom of her bowl were not pieces of potato, which she hates in soup that isn't potato soup, they were chicken, and she'd want to eat those. She appreciated the reminder and she ate them.
   There was one other frustration connected with dinner. She left a fair amount of soupy liquid in her bowl and I could not convince her to eat/drink it so, for the first time in our sojourn together (and, I hope, the last, for a long time), I fed it to her "nursing home style", as I called it, spoon by spoon, an activity which neither she nor I appreciated.
5. Since she was going on her fourth day without a bowel movement I administered a mild laxative dose of Phillip's Milk of Magnesia in the morning. This was another reason why I wanted to keep her up: I didn't want her to shit accidentally while she was napping and risk another E. Coli infection. Keeping her up generally helps stimulate a bowel movement when it is much needed. Although I finally gave up and let her nap, she did have a bowel movement after dinner. When she headed for the bathroom I set the scene, as I usually do, with cigarettes. After giving her time to smoke the first of two I went into the bathroom to see how she was doing. "Bowel movement yet?" I asked. Usually I can smell it but last night, for some reason, maybe because of the medication, I couldn't.
   "No," she responded.
   "Well, then, I guess we'd better get you up."
   "No, she said, I'm having a little trouble."
   "Trouble having a bowel movement?" I asked.
   "No..."
   "Well, then, trouble peeing?"
   "Yes," she said.
   My anxiety level shot up and my mind started calculating: 'only' three days of Cipro XR; maybe, even though it's powerful, that wasn't enough; I haven't noticed any cloudiness in her urine lately and it's smelling normal again but maybe she isn't completely over the urinary tract infection; we're headed into a weekend, I wonder if the urgent care clinic is open or if we'll have to go into the ER if it becomes obvious that her infection needs more treatment; I guess I'd better make sure that I have supplies handy for a long wait, etc., etc., etc...
   I began questioning her, "Are you saying you're having trouble urinating?"
   "Yes."
   "Does it hurt when you try to urinate?"
   "No."
   "But, you can't urinate even though you feel as though you need to?"
   "Yes."
   "And you aren't having a bowel movement?" Sometimes when she has a load to evacuate, as she surely did last night, she feels the bearing down pressure on her bladder and interprets it as difficulty urinating even though her bladder is empty.
   "No."
   At this point, I couldn't help it, I stood in the bathroom door and started to cry, thinking ...once again, medical treatment hadn't been adequate, probably because she wasn't an on-board patient with the doctors practicing through the urgent care clinic in Prescott Valley and didn't have a local PCP; and here we were, having to go back for an appointment to a place where we'd have to set up camp while waiting to be seen; go back on a course of strong antibiotics, have her stats go wild and since I didn't think I could put off the standing blood draw any later than Monday, show test results that were clearly out of whack; I'd have to wrangle yet again with her regular doctors to keep her from being over treated for temporary results due to infections and antibiotics...
   I figured, oh well, it'll probably help to cry about it for a bit, make me feel better, get rid of raucous enzymes that I'd been collecting for awhile that were "helping" me have a bad day. I left the bathroom after telling her four times to please not flush since I needed to check her urine to see if it was cloudy or pink.
   After some minutes I headed back to the bathroom. She'd finished, had headed toward her bedroom, and, thank the gods, had either remembered not to flush or forgotten to flush. I looked into the toilet. She'd actually been having a bowel movement, a healthy one which probably cleaned her out. She hadn't been able, for some reason, to sense or communicate that this was what she was doing. Or maybe she was just being contrary and wanted to preserve her personal bathroom dignity...this happens, too.
   Standing over a toilet full of shit, I resumed crying just to relieve the frustration I'd been creating over the possibility of having to seek more treatment for a badly handled urinary tract infection. In a minute I was over it, remembered that Mom had headed to her bedroom and realized I needed to deflect her from going to bed so early.
   Aside from telling her that I was not going to allow her to go to bed, I reminded her that on Friday nights Channel 38 had a two parter Deep Space Nine on from 2100 to 2300 and didn't she want to watch that?
   "Oh! I don't want to miss that," she said.
   "Besides," I said, "you're still pretty dehydrated, even more so since you went to the bathroom, you had a bowel movement, by the way..."
   To which she responded, a little indignantly, "I know I did."
   "...so I need to get a good quart of liquids down your gullet before you retire."
   She sighed. "I've had enough liquids, today."
   "Look," I responded, exasperated after a day full of everything else and coaxing and cajoling her to "drink some more, get that down, you've got another glass on the way," "I'm not going to argue. If I have to, I will stand over you and feed you the liquid myself but your only other choice is to dehydrate yourself and risk a variety of infections and death. Unless you tell me you're ready to die I'm not going to let you take that risk. Are you ready?"
   "No," she said defiantly.
   "O.K. Deep Space Nine and liquids it is."
   She was up until 2330 watching her shows and something else, I don't remember what, some half hour program, while I wearily screwed around with a template design for an adjunct food journal to compendium of sites. When she went to bed, I went to bed, hoping I'd roll out this morning on the right side.

    I'm still not sure whether I managed right side rolling this morning. That's the nature of my bad day hangovers. Mind over matter, "they" say. Well, sometimes, after weeks of days like the one above (believe me, yesterday was not unusual for my mother, I was the one whose day took a turn) all that matters to me is to sigh and ache and be contrary for awhile, to take a "bad day" vacation even while I must remain right where I am in the middle of my mother's life, so that's what I do, while carefully staying just this side of the thin line between expressed mental, emotional and physical exhaustion and elder verbal abuse and neglect.
    Time, past time, to get her up. I don't know what we'll do today. I don't know if I'll get her moving or even want to, although I'll definitely keep her up. I might need a day to recover from my bad day of yesterday. If I do, I'll take it. She'll be happy because I won't be bugging her to get out and get moving even though, as she celebrates days like this, I harbor a twinge of guilt knowing that I'm collaborating with her frailty when I don't attempt to coax her strength and immunity to higher levels of performance.
    My knee is still iffy, the swelling in my foot seems to have gone down a bit, I've taken my morning dose of antibiotics and can feel them creeping around my body pulling energy toward the infection site. Overall, I'm not on edge. I'm not feeling overwhelmed today, just hung over. I could have launched an earlier start to Mom's day but I needed to indulge myself by recording the truth about my bad days. I think I'm ready now for a somewhat better day than yesterday. We'll see.
    Later. Maybe.

...that, odd as it seems, bucks me up when I'm feeling as though I am incapable of negotiating the variety of difficulties involved in taking care of my mother. When my confidence is at its lowest I imagine my mother and I alone on a tropical island (Guam, actually, since I was raised there). I imagine that whatever the difficulty causing me to feel inadequate, whether it be health related, emotionally related, business related, law related or resource related, I have no choice but to handle it without the help of others. I imagine myself surveying the territory with an acute eye and flexible brain, figuring out ways to use the non-human resources at my disposal in as yet undiscovered ways. I imagine that I have very little time to survey my surroundings and find a solution to an what appears to be a problem impossible to negotiate. I imagine myself successful in negotiating the problem.
    This fantasy always works for me. It probably seems as though I should be fantasizing about innovative ways to solicit other people's involvement in caring for my mother but, believe me, I've learned over my years of caregiving that people not only demand but fiercely protect their rights to their own circumstances that put them outside the realm of helping solve the problems of primary caregivers. I've learned as well that those who are most likely to have the skills and knowledge necessary to lend a hand have their hands full with the demands placed on them by their own islands of primary caregiving.
    In a curious way, my conversation with the commercial deliverer yesterday strengthened my confidence in my ability to handle the demands of caregiving. I realized the island I imagine is one of scores of islands floating in the seas between the continents of human community we create. I realized that my island is not one I created but one I inherited. I also realized that I not only have a right but a duty to refuse help that is so ill-timed, inadequate and uninformed about my and my mother's circumstances that it increases the possibility of both of us drowning in the sea between my island and the continent over the horizon.
    Whether negotiating a crisis or the daily demands of our charges, we caregivers are not in the position, nor do we have the time and energy to peer toward the horizon looking for help. This is ultimately why it makes no sense to harass caregivers with the chant, "Caregiver, take care of yourself," or to threaten caregivers with the advice that if they don't take care of themselves they won't be able to take care of their charges. There are millions of us worldwide taking care of our children, our elderly and our infirm who fall well below the guidelines for "taking care of oneself" established by those who haven't been involved in intense caregiving and most often counsel us to surrender to the fact of inadequate substitute care of our charges in order to take care of ourselves.
    Yesterday, without isolating myself from my mother, I learned that not only am I not the only one on an island, I am not the only one who has discovered that remaining on this island and learning to ignore the misdirected shouts from the continent to find my own fiber and weave my own tow line, despite the fact that while doing so I will be neglecting my mother in some way, is usually the best way for me to provide the best care for my mother. I also learned that the most approbative support I can find comes not from organized groups of caregivers huddling in the ill-disguised stress of having to leave their charges to the well advertised but poorly experienced whims of professional spotters, but from fellow caregivers whose islands occasionally bump into mine as we go about our duties and our lives.
    Don't talk to me about taking care of myself in order to better take care of my mother. In the absence of your ability to offer appropriate, knowledgeable help that allows me stress free respite, at least grant that, despite what you think you perceive about what I am doing wrong, in fact, I am taking excellent care of my mother and myself. Trust me to know that I've surveyed and sampled the available resources, both human and non-human, and I know which are helpful to my mother and me and which are not, which are available to me on the island and which are unavailable to me on the continent. I know what it takes to do what I do and I know that taking your advice to "take care of myself" in the ways you deem appropriate is not only of no help, but is foolhardy, besides. Why do you suppose primary caregivers become so isolated in their tasks? Because we want to be? No, it's because, at this time, in societies where the value of primary caregiving is given little more than idealistic lip service, distinctly irritating greeting card sentiment and resources put so far out of our reach that it is wiser not to take our eyes off our charge to "take advantage" of these resources, we have to be isolated.
    As a primary caregiver I don't live on Fantasy Island. I live on the shoals of reality. If you can't bring yourself, for whatever well considered reasons, to meet me in the shoals, at least grant that my experience here outweighs the value of your perceptions and advice from there.

...excitedly comparing notes about our caregiving situations out on the heat radiating concrete of the driveway. It surprised both of us how many of our circumstances and experiences meshed.

1. She and her husband both have siblings. All of the siblings are married and have children. She and her husband are the only members of the immediate family who do not have children. They are also the only members of the immediate extended family who are taking care of elderly relatives (they are caring for her mother-in-law and father-in-law).
2. It is almost impossible for her to count on her extended family for caregiving help.
3. They have hired caregiving help several times through various local agencies (some of whom I had called a few weeks ago) and, without exception, have been disappointed. They are no longer confident that the business of caring is in any way able to spot them in caring for their parents without also adding a great deal of stress to their time away from their parents, wondering if "everything is going to be okay" when they return home, as, she says, it never has been.
4. She has not made the connection between she and her husband not having children and the fact that they "fell" into caregiving for her in-laws. However, she said something very interesting; that, of all the brothers and sisters she and her husband were and remain closest, emotionally, to her in-laws and she thinks that, all things considered, this is why their caregiving role "chose" them.
5. She has found negotiating the non-alternative medical establishment at least as confusing and maddening as I have. She has turned to the alternative healing community to assist her in caring for her relatives medically and finds that, while they may not necessarily hit a home run on the first try, the alternative healing community is "at least" willing to acknowledge when a particular treatment is either not working or causing a problem and will, of its own accord, research other possibilities. Thus, she trusts the alternative healing community more than the non-alternative medical community and wishes it wasn't necessary to remain linked with the non-alternative medical community in order to gain access to prescriptions, tests and insurance funding.
6. She and her husband both work. Since taking on the care of her in-laws, her husband has had to sacrifice raises and promotions in order for them to accommodate the needs of caring for her in-laws. She is worried, now, that she is going to have to sacrifice her retirement, which is due in 4 years, to the needs of caring for her relatives.

    She told me that her father-in-law, who is in his 90's, is "very sharp" and quite healthy physically except for continual pain from the scarring of previous hernias (which, she says "he bears with admirable reserve") that medicine will not touch, citing his lack of suitability for surgery. Her mother-in-law is somewhat fey, mentally, less so than my mother, and is frail physically in many of the same ways my mother is. She has been diagnosed recently with type 2 diabetes which this woman believes is either incorrectly diagnosed or is being treated incorrectly. Her pulmonary problems are being explained suspiciously and her muscular and bone frailties are not being adequately addressed by the medical community. However, the medical community "hounds" her and her husband to submit their mother-in-law to a variety of surgeries and procedures despite the son's and daughter-in-law's perception that her mother-in-law is a poor candidate for surgery and for certain test procedures.
    As far as being the closest, emotionally, to her mother-in-law of all the adult children within the extended family, this rings a bell with me. I feel much the same regarding my mother and her extended family. I know, however, as does this woman, that, as she said while I nodded vigorously, that it isn't that her mother-in-law loves her other children (blood and by marriage) any less, it's that, throughout the years, because she and her husband were unable to have children, she was more available to her mother in the intimately communicative ways that keep people abreast of the states of each other's souls and she had the time to nurture this kind of relationship. At this point I mentioned that it used to be that I thought I was the one missing out because I knew (as, I've been told by each of my three sisters) that they felt a special connection to my mother through having given birth and having become mothers and I had not. At this point she began nodding vigorously, so I continued: The funny thing is, though, I'm the one who has always known, for instance, what books my mother is reading; how she feels about what's in the news; about her business savvy and the immaculate decisions she made, at one time, in handling her stock portfolio; who her neighbors were and what she thought of them; that she had any relatives, at all, whom she disliked; unusual stories about her past...I could go on but I won't because I didn't. I didn't have to. The delivery woman said to me, "I know. That's how it is with me and my mother (she refers to her mother-in-law, appropriately, as "mother"). Her mother-in-law's other children and their spouses all live very close and, "they have always come to me to find out how she's doing and what she's doing."
    Before we parted she gave me a valuable alternative treatment tip that might help control Mom's diabetes without medication, as it has worked well for her mother: Soak a nopal (prickly pear) pad (without the spikes) in a gallon of "good" water for about a day and have my mother drink the liquid instead of water. Aside from being "very refreshing", it seems to boost the body's ability to process insulin. I informed her, since, occasionally, they find themselves relying on medication to control her mother-in-law's diabetes, of the little researched suspicion that there is a connection between several type 2 diabetic medications and three types of anemia.
    We also talked about how it seems that the non-alternative medical community seems to treat the elderly from a set of guidelines established for the middle-aged and that it is very slow in responding to the idea that a condition in an Ancient One is a different kettle of fish than the same condition in, say, a 50 year old. She admitted to the same suspicion.
    It is interesting to note that although this woman and her family are a from a non-Northern European background that has a reputation for extended family communities that care for their elderly, two distinctly nuclear conditions exist within their family: First, the insularity of each family unit to the point of not being available to help in the care of elders that have been left to one of the units; second, both her in-laws, some years ago, out of fear of being a "burden" to their children, were convinced that "when the time came" that they could no longer live independently they would voluntarily assign themselves to nursing homes. However, having had the experience of seeing other family members dwindle in nursing homes, when "the time" arrived they sought out the most likely available family unit to help them rather than nursing homes.
    As we finished our conversation, I mentioned to her that it sounded like her mother-in-law was the same woman as my mother. We laughed and she said, "And you are me!"
    "Well, not quite," I said. "I don't have a husband to help me and I abandoned my formal working life for this one. Let me tell you, whatever you have to do, hang onto those 4 years of work you need in order to retire. Harass your family to help you do this if you have to even if you think you might alienate them. Remind them that your ability to depend on retirement will allow their need to have you and your husband be your in-law's primary caregivers much more likely to be continued without any casualties."
    She cocked her head, startled. "You're right," she said. "I never looked at it that way. I think you've given me a way to approach them. Are you worried about what will happen to you when your mother dies?"
    "No," I told her, and that is the truth. "I've always been a little insane that way. I've never worried about what was going to happen in the future and, as it turns out, I've never had to. But, you know, that's just me. That doesn't work for everyone."
    "I don't know anyone that works for," she said. "You must be lucky."
    I am. That's also the truth. I am. Here I am, taking care of my beloved mother, getting to know her in ways no one else ever has or ever will know her and doing it with few distractions. You bet I'm lucky!
    In this country as it is today, as it has been for awhile and will continue to be for some time to come, cherish the singles and the childless partners among your families. These are, often, the dedicated keepers of the Ancient Ones, whether by default or design. These are the ones who are often best set to turn their attention fully to the needs of the elders in our tribe, protect them from the thoughtlessness of institutionalized care and medicine and allow them a high measure of personal dignity, safety, composure and the ultimate compliment, which all of us, regardless of age, crave: The compliment of being well known. These are the people who will one day be able to recount for you the nature of the astounding, life affirming secrets harbored within the dying flame.

...five minutes before I had planned on awakening Mom, our phone was triggered by a trip ring and, sure enough, it was out, again. I weighed whether I should awaken Mom and spend 2 hours bringing her into the day before I called repair. Remembering the repair debacle from Tuesday, I decided, no, I'd contact repair first. Forty-five minutes later I was finished reporting the same problem that was supposedly repaired at 0630 yesterday morning. Fed Ex pulled up to deliver Mom's breathing medications. I didn't expect this to delay me but I became involved in a conversation with the driver I'm now glad I didn't miss. Once it began I decided the conversation was important enough to me as a caregiver that it was worth allowing it to play itself out.
    The driver/deliverer noticed that the delivery was Mom's breathing meds and had questions for me. Did my mother, she asked, suffer from a lazy bronchial valve as her mother-in-law did? Had I ever heard of such a thing? She wanted to know because although her mother-in-law had clear pulmonary problems, her mother-in-law's sister had been diagnosed with the same problem although she suffered from cardiac problems. She didn't say this specifically but it was obvious that, based on her and her husband's experience giving care to her mother-in-law, who lives with them and is 87, she was suspicious of this diagnosis and wondered if it was being passed out willy-nilly to as many elders as medicine thought it could get away with.
    I assured her that my mother was receiving meds because of COPD/emphysema and they were to reduce acidity in the lungs in order to attempt to prevent the possibility of lung cancer. Because I picked up on her medical suspicions, though, I encouraged our conversation to continue by addressing exactly what I felt was her fundamental concern. I told her that I've learned over the past few years that although doctors are not necessarily maliciously inclined toward haphazard diagnosis and prescribing, they bear watching as, considering the state of medicine at the present time, I've found that medical mistakes due to overlooking or not looking at information about patients has caused me a lot of agony.
    To Be Continued

    Although many of the details are fading, the crux of the dream was that I was surrounded by doctors hounding me with the following discovery, "...but, there's blood in her blood!" Not so strange, I guess, considering what we're going through on behalf of non-alternative medicine. It wouldn't surprise me if one of her physicians actually hit me with this one in reality.
    Both of us retired late last night. I slept in until just before 1000 this morning. Amazing. I'm appreciating even more the power of antibiotics to take over one's body and have their way. I can't remember the last time I had almost eight hours of uninterrupted sleep. Mom's still snoozing. She retired about 0030 so I'm not feeling any qualms over letting her sleep until noon. I don't have it in me today to "whup her up" so I'm hoping that allowing her to sleep until noon will work a little sitting-up-under-her-own-steam magic.

...so I think we might wait until Friday or Monday. I expect that her Comprehensive Metabolic Panel is going to show the healing phase of her urinary tract infection. It seems to me that her anemia profile may have suffered from the bleeding from her urinary tract, although she hasn't been bleeding since Saturday. I want to give her some time to recover so that I don't have doctors conveniently forgetting (or not paying attention to) her recent urinary tract infection and trying, once again, to badger me into having her scoped, needled, iodized and radioactivated. I've been very optimistic about her recovery, perhaps overly so, despite trying to remember her Mesa PCP's long ago advice that, "She's old, she's been sick, give her time." Not that I think this will be remembered by her doctors. They are lathering to get me into a position where they think I can't possibly say no to a variety of tests that I believe would be torture for her and would turn up nothing about which they can do anything, anyway. She is not a good risk for surgery if she is bleeding somewhere and I feel that surgery should only be attempted on her if the other option was immediate death or extraordinary disability that would rob her of any decent quality of life.
    Believe me, despite the obvious thrust of my medical efforts on my mother's behalf I harbor a devil's advocate who is constantly chanting, "But what if she dies, an autopsy is done and you discover that she was bleeding internally and something could have been done? What if you are wrong about her surgery risk?" My only answer is, this could very well happen. If it does I am prepared to say that in one sense I was wrong but in another she doesn't like doctors fussing over her. She and I understand that at this point she'd rather leave the timing of her death up to the god in whom she believes and the optimistic frame of mind upon which we both count to get her through another night so that she can ask me, once again, in this life, face to face, eye to eye, "Why do I have to get up?" and she can hear me say exactly what she believes in her heart: To celebrate the day she's been given and to join me in celebration of the day I've been given with her. I know myself well enough to be sure that I will torture myself over some unintended mistake in making decisions about her medical care about as much as her doctors and nurses torture themselves when they make a mistake with her.
    Scotty, beam me down a tricorder, please.
    Otherwise, let's see, the day went well according to Mom. She enjoyed the trip to the bank to notarize the paper and was satisfied to sit in the car in the parking lot of Costco, people watch and smoke a few cigarettes without being harassed by me. When I returned to the car from my very short trip to pick up more paper underwear and replenish our meat supply she was full of wry observations on human behavior based on the people on whom she spied. She was ready for lunch when we arrived home, not at all dragging despite the surprise of her low blood sugar and stayed up until 1830 when she decided to take a nap, making me promise to awaken her at 2000. She was making her way down the two steps into our living room just as I was heading into her bedroom to awaken her.
    I discovered today that she has decided to use my bowel movement strategy to coerce a few more cigarettes out of me. The first time I tried it she told me that, yes, she was indeed moving her bowels and she needed an extra cigarette. She wasn't. I thought, well, she probably wasn't sure. Then, this afternoon after lunch, she headed into the bathroom. When I asked her, as I do whenever she's headed for the bathroom, if she thought "this was it" she replied, "Yes" and waited expectantly for me to dole her a couple of cigarettes, then asked for a third while seated on the stool. When I checked on her as she was arising she faced me, gave me a sly look and said, "Well, not that time," and I saw it as though she'd tattooed her fulfilled intention across her forehead: She'd figured out that using my strategy against me to suggest that she was "ready" to have a bowel movement would get her a few more cigarette breaks throughout the day. Wily woman. If she can figure out how to trick me in twenty-four hours I have a feeling she's snowed the doctors and the gods. Unless I miss my guess, this is a sterling indication that she's got a while to go, pun not intended.

    It didn't occur to me until just now as I set my mother up in the bathroom with a cigarette to stimulate a timely bowel movement in lieu of an accident while we're out, but the procedure I described yesterday is yet another example of using cigarettes as medicine with my mother.
    I don't think this would work if her cigarette consumption wasn't drastically less than it used to be. My mother was the type of smoker who would smoke everywhere, including the bathroom and during meals. She'd be very comfortable in France. The only place or activity in which I've never seen her smoke is when she was walking for exercise (although I've seen her stroll for pleasure with a cigarette) or mowing one of the many lawns that have been under our family's care. I've even seen her smoke in bed, although soon after I moved in with her I stopped that.
    At any rate, since I am noting, with pleasure, that the bowel movement stimulation strategy I started yesterday seems to be a strategy upon which I can count (even though using smoking to raise her blood pressure when she was tumbling into severe anemia didn't work) and that using cigarettes as a laxative is much more reliable, from the perspective of being able to time bowel movements, than using other laxatives, if you are taking care of a recalcitrant smoker whose consumption you've managed to diminish but you know you'll never stop, consider thinking of the positive duties a cigarette can perform as medicine. Doing this also heightens my mother's spirit and undergirds her sense of personal dignity, as she tends to think she's "getting away with something" when she's smoking in the bathroom.
    Time to check on her cleansing progress and get her ready to venture out into the world.
    Later.

    In the previous week someone performed a search on Mom & Me One Archived for the word "trapped". This piqued my curiosity. Had I, at some time in the years that I've been writing about my odyssey with my mother in her Ancient One years, ever mentioned that I feel "trapped"? I didn't think so but I searched all the areas to which I have search engines attached. No, I've never used that word to any purpose.
    I know that at times I've felt desperate. I believe I've mentioned this, most often before I realized that I was going through menopause and needed some supplementation to control the physical and emotional extremes engendered by the hormonal changes, my responses to which I inherited from my father's extremely volatile side of the family. Once I started supplementing, though, I calmed down quite a bit. Now, some years later, I am almost through menopause and almost completely off herbal supplementation.
    The reasons I haven't felt "trapped" by this situation aren't because I am some kind of caregiving saint. Firstly, it isn't in my nature to feel "trapped". I can't remember ever feeling this way in any phase of my life even when I haven't been particularly thrilled with my circumstances. Secondly, I chose what I'm doing, now. It took me a good six months to decide to do this once my mother asked me. I've always been quite independent and I seriously considered not doing this. Thirdly, my mother and I began this journey long before she needed the intensity of caregiving she now requires. I had some years to work into our current circumstances. So did she. She is, as well, an independent woman. Whether by accident or by design (I honestly don't know which, so I tend to call it "luck") we began our journey early enough so that we would both find it easier to make the necessary adjustments as caregiving intensified.
    Not everyone is suited to caregiving. For decades I didn't think I was, or to nurturing behavior of any kind. During those years I was right. My enduring decision, made at the age of 13 or so, that I would never be married and never have children was exactly the right decision for me while I lived from that decision. This is why it took me six months of serious consideration to decide to do what I'm now doing. At the time I made the decision I had no idea I would become as involved in caregiving as I am. If I had been able to look into the future I probably would have felt much as "Mermaid" feels: That there are professional agencies and people who are better suited to this sort of thing that I am. Had I made that decision, of course, I would have been basing it on ignorance and would have been in error. I know, though, in retrospect, that if I'd looked ahead at that time the glimpse would have scared the bejesus out of me and I would have run the other way. No one is more surprised than I am that I'm able to do this.
    The only aspect of my reactions to this kind of caregiving that doesn't surprise me is that I am not always confident of the "rightness" of this situation for either my mother or me. If you've been following this with some regularity you know that recently I've been wondering if my mother needs more "people" stimulation than I'm capable of providing. I wonder if it would be best if she was with another branch of the family that includes more than one stem in the same home besides her. I still haven't determined whether this is a good idea. My mother doesn't think so (yes, I always discuss my doubts with her). At times neither do I. It's easy, though, when one is used to a situation to think that changes are neither necessary nor desirable.
    Three years ago when I was deeply involved with someone I seriously considered leaving my caregiving circumstances to embark on a shared life with that man. I began making plans to turn my mother's care over to another branch of the family. I wasn't the one who backed out of these plans. The man was. I'm now glad this happened. The intervening years have been highlighted by an accelerated spiral in my mother's needs and I'm pleased I've been here to attend to that spiral.
    The thing about caregiving is, you can only give care out of who you are, whether you are doing so in what the caregiving industry refers to as an "informal" setting such as I am or you are doing it in a professional capacity. It is impossible, when giving care, whether 24/7 for free or eight to twelve hour shifts for pay, not to be swayed by your relationship history with the person for whom you are caring and by relationships similar to the one in which you are involved in a caregiving capacity. If you think that the quality of care given by health care professionals in, say, a nursing home isn't influenced by the quality of that professional's relationships with their parents and other Ancient and Infirm Ones with whom they've had avocational contact throughout their lives, you're seriously off base; dangerously so if you're committing to professionals the care of someone with whom you have a bond. This is why I am adamant that any changes that take place in this country in regards to caring for those who need care, including our children, have to begin with a fundamental shift in how we perceive and perform caregiving within our homes and communities.
    One of the shifts that needs to take place is in our fundamental sympathy with the caregivers in our communities. I can tell you that I often feel the insinuating heat from others (primarily, at this time, women) whose underlying attitude toward me is, "Ha! See? You thought by not getting married or having kids you'd escape the caregiving prison. You had another thing coming, didn't you?!? Me? Help you? I'm too busy giving care to my own people, care, by the way, I never should have been asked to give. Nah, I'm going to let you stew, just like me. Maybe then you'll learn your lesson. There's no escape."
    See, the other thing about caregiving is, there is a "way out". We need to attend to the fundamental attitudes within our society that allow caregiving to feel like a prison to the many people, primarily women within the Northern European influenced culture in our country who look to create a caring family but find themselves mired in the impossible situation of being the only true caregiver to those for whom they care. Although it sounds simplistic, it's still true: We need to step out of the nuclear zone and step toward the compounded substance zone, all the while weighing the advantages and disadvantages each approach has to offer. At this time, this country is a good experimental laboratory for this possibility. We are becoming more and more influenced by the more inclusive definitions of family and community inherent in a variety of other cultures making their weight felt upon what has been, for decades, the prevailing United States family/community culture. I have high hopes.
    In the meantime, I also have high spirits most of the time. When I have low spirits you'll know but I don't think you'll ever hear me say that I believe I am "trapped". Feeling trapped is simply not a part of my nature. This is not to say that feeling trapped is not legitimate for others. It just isn't legitimate for me. Believe me, there isn'at a day that goes by in which I don't pause at some point and thank my "lucky stars" that my nature discludes the awareness of traps. I figure, as long as I don't consider that I'm in a trap, I don't have to wonder how to get out.

    Seems optimistic that I received my first email regarding my efforts here a few days after receiving my first comment. The tracker doesn't show a jump in visitors. If anything, visitors to my site are on the decline but at least I'm getting some feedback.
    The emailer asked me to elaborate on the two times that I sought outside care for my mother and exactly what problems I'd had. I thought I'd written about these but I did a thorough search and can't seem to find anything. I e'd a friend about one of the incidents so that must be why I thought I'd talked about it here. So, directly out of that e and from memory, here are the two incidents:

1. A few months ago at the urging of the healers at one of the alternative healing clinics at which my mother has been treated I left my mother for an hour so I could make a trip to Costco to pick up supplies. I was positive that everything was going to be fine. These people are gentle with my mother and love her. I returned and discovered that they'd left her alone in the treatment room for the entire hour and she'd decided to get off the examination table, which stands about 3.5 feet high, by herself. Although she managed to do this without injuring herself, I was concerned and mentioned it to the two people who were supposed to be keeping an eye on her. Their response? "Don't create a bad reality by imagining the worst." Leave it to effective alternative healers to display absolutely fucked reasoning. If this type of reasoning worked there would never have been any need for infant and child seats in automobiles.
2. Maybe a month after the above incident I accepted the offer of yet another person with whom I was acquainted who had a reputation for excellent "respite" elder caregiving and who knew both my mother and me. I hired her to take care of my mother at her home for an hour while I took care of some business. When I returned my mother was in her wheelchair in the caregiver's back yard, unattended and confused. When I brought this to the attention of the caregiver I was told that Mom had seemed to be enjoying herself and the caregiver thought it would be advantageous to allow her "some time alone".

    If I had not known these people, if I all I'd had were references and recommendations by which to judge their ability to handle my mother and keep an eye on her, I would have blamed myself for not being more discriminating before the fact. As it was, because of much prior contact with all and much "advance publicity" about their abilities, including experiencing their services and/or watching them work and being pleased, I had no qualms about leaving my mother at either site. Despite everything, I was wrong.
    There. I hope that satisfies the emailer's curiosity, who specifically set up the message to allow "No Reply".
    Something I instituted successfully today in order to avoid bowel accidents, which are now of special concern to me since Mom managed to contract an E. Coli infection in her urinary tract: As her body is taxed while fighting bacteria she has not been as sensitive to her need to evacuate as she was previous to taking Cipro XR. Over the last few days she has, each day, evacuated in her underwear without realizing it. I realized yesterday that this happens about two hours after breakfast. Today at that time I followed this procedure:

• I asked her if she felt as though she had to have a bowel movement. She answered, "No."
• I reminded her of the bowel accidents of the last two days and explained that we were going to try something in order to attempt to avoid an accident today. I'd herd her into the bathroom, sit her on the stool, give her a cigarette (to stimulate bowel movement), and have her to sit there and enjoy her cigarette, drink some herb tea and think "down and out". we'd see if this might allow her to have a normal bowel movement someplace besides in her underwear.
• She agreed. I gave her a good 5 minutes to finish her cigarette and checked in on her. Sure enough, much to her expressed surprise and my expressed delight, she was in the middle of a daily bowel movement with no complications and no accidents.

    She did not remember that it had been a 'strategized' movement. I didn't bother to reinform her. I think I'll continue doing this for a couple of days until all her stats fall back into line and she seems to be recovering her energy and her internal sensitivity.
    No, she didn't go with me to the grocery today, although she mentioned, without being prompted that she felt "much better than she has for awhile." This afternoon after lunch, though, she began to nod off in her rocking chair. I decided to alert her and move her into her bedroom where she rests much more comfortably and successfully. I discovered that when she's dozing she temporarily 'forgets' how to move her body. This is a fertile insight for me. Although I already knew that it takes her a good quarter to half hour to get her moving out of bed after a full night's sleep, I'd never thought about why. During the time she takes to protest getting up and provoke me to coax her out of bed her body is, apparently, reminding itself how to work. Curiously, if I inform her the night before that she's going to experience an earlier than usual wake-up call because we have an appointment or function that requires a specific arrival time, she apparently retains this knowledge in her subconscious and her body snaps to much more quickly than if we have "nothing planned". This afternoon's insight will modify my approach to a normal awakening. I will, certainly, allow her body some time to remind itself how to move, as I've previously done without realizing that this is what is happening. Now, though, I know that there's a possibility that it might help if I perform a few gentle movement reminders on her as she is awakening to the day. Nothing ventured, nothing gained.

...after, "Good morning, Mary Sunshine," and, "Time to get up!" and, "How are you feeling this morning," were, "Let's see if we can't get you fed before noon, today." This, as it turned out, was a pipe dream. She's still dragging and her blood pressure reading tells me her body is busily at work fighting bacteria although her blood sugar tells me the process is winding down.
    She's having a few morning cigarettes before I do her hair. I'm talking up a trip to the grocery but already I'm thinking her accompanying me may not happen. We'll see. Her right lower eye lid is sagging this morning, she had some trouble controlling urination while we were bathing, fastening her bra confused her (although there was a legitimate reason...some of the hooks had snagged on something and been pulled open) and she had a little trouble negotiating herself into a standing position. All of these are indicators that her energy is not completely at her disposal.
    I continue to put off getting that one business paper notarized, as, hour by hour, day by day, it hasn't yet looked good for getting her out without her knees becoming iffy. I'll try again today and my spirit is hearty enough to exert some influence over her but, well, we'll see how much her spirit is willing to trust mine to hold her up and keep her moving.
    The urgent care facility called this morning, confirmed the diagnosis of E. Coli and asked how she is doing. I mentioned that the antibiotic appeared to have done the trick although on the third day of dosage and the morning after that last dose she experienced some nausea. "That happens," the nurse responded, "especially in the elderly. That's why the doctor put her on only a three day course." I also mentioned that it appeared, from some of her vitals, that the Cipro XR was still "working", and she confirmed that it does have a holdover period, which, as far as I'm concerned is good.
    Time to perform the full meal deal on Mom's hair and decide whether we're off to the races today, at least one race, the grocery. We need a few minor supplies, including a dosage spoon.
    Later.

    Last night as I was allowing my mind to whir down to a purr before sleep something occurred to me. One of the aspects of the media attention paid to caregivers that I never fail to find ironic in the subset of advice that I call the "Caretaker, Take Care... of Yourself" syndrome is the constant harping directed at caretakers to find someone else to do some of the "dirty work" in order for the caretaker to allot some time for her/himself. Aside from the fact that the more I find myself involved in caring for my mother the more obvious it becomes that in caring for her I am caring for myself, as some of you may have read here, the two times I did relent and have someone outside of family look after my mother for a mere hour each time I returned to discover that my mother had been dangerously neglected simply because the designated substitutes, both of whom were highly recommended and experienced, did not believe that my mother needed to have an eye kept on her at all times. Twice bitten, thrice shy.
    Last night as I was roaming through my brain data looking for reasons why intensely involved caretakers are being hounded to hire help by our society through both private and government sponsored commercials as well as private members of society I realized that this may be an effort to create jobs in a very shaky economy. If caretakers can be convinced that in the interest of their personal psychological and physical health they "should" be hiring help, well, considering that caregiving is becoming ubiquitous, an entire, robust industry can be created into which to shunt the unemployed. Forget that these people will probably be paid about the same as a counter jock in the fast food industry. Forget that their training will probably consist of little more than a familiarity with recently legislated dictates making various aspects of elder abuse a crime. Forget that money rarely creates the personal interest necessary to do justice to the role of caregiver. Forget that money is not creating a trustworthy professional health care environment, that it may be doing exactly the opposite. Let's see if we can't convince caregivers that professional help is necessary to their well being in order to get thousands of people off welfare rolls.
    Mind you, the two times I "hired out" my mother's care the people who were solicited both obviously had a heart interest in that vague desire to "take care of people". Didn't make a difference. How much less difference is it going to make if the bait is a paying job?
    Economy is, inagruably, one of the fundaments of any society. Based as it is in developed countries on an exchange of legal tender for work, it is not a reliable strategy for providing respite to caregivers and guaranteeing that this respite is not going to be harmful to the person in need of care. Nor is our current activity of legislating against neglect. I don't know any caregiver who believes that since caretaking neglect is now a crime the law guarantees that their charge will be safe and well treated. I don't know any caregiver who would trade a few hours of respite for the possibility of having to sue a professional caregiver for neglect. The caregivers I know are more suspicious than ever precisely because as a society we've found it necessary to highlight caregiving abuse to the point of legislating against it.
    If lawyers consider an ad on prime time television well worth the cost for offering their services in "going after" professional caregivers who've served up dangerous neglect, all I can say is that we're approaching the issue of caretaker respite from the wrong angle.

I told my mother, tonight, when she began hiccuping, again, just as I was settling her into bed.
    "I think I'd rather have the hiccups," she said.
    She's been experiencing the hiccups a lot in the last, oh, I'd say over a year. I've mentioned it to two of her doctors, her PCP and her hematologist. They cite her imaging studies, her lack of gastro-intestinal disorders (which, of course, is in direct opposition to their insistence that she must have some kind of gastro-intestinal bleeding going on because of her recurrent iron deficiency anemia) and tell me, "We don't really know why hiccups occur."
    This is one area of her health which I haven't researched. Today, though, she had five separate episodes, all gone within less than a minute or two. We've tried almost every suggestion of which she and I have ever heard, except drinking water from a glass backwards. Her hiccups seem resistant to anything but their own whims. I believe they are benign but could be controlled if we could hit upon the right technique. I mentioned this to her tonight and she said, "Don't worry about it. The only one they bother is you."
    Which is true. I'll probably research them anyway, though, within the next few days.

    This evening I realized that I probably should have been recording, along with what she eats, how much liquid I force her to drink every day in order to keep her hydrated. This occurred to me because, today, I think it took about a quart less than usual, and adequate hydration occurred a good couple hours before dinner. I was so thrilled I started to cry. She couldn't have been harboring E. Coli in her intestinal tract since October 25 and still be alive, but it is entirely possible that she may have had some other bug or two up there for some time and the Cipro XR wiped them out, as well as the E. Coli. Or, today could have just been a blip. I hope it wasn't. The next few days will "do to tell", as my mother says.
    Speaking of Cipro, we both caught something interesting, this evening on one of Mom's regular stops in her doctor show circuit, Strong Medicine. A patient in the ER was suffering from what appeared to be seizures (I was only half listening so I'm not sure of the details but the patient was flailing on a gurney). One of the doctors looked in her purse and found "doggy meds" that she had apparently been taking instead of the costly "Cipro", which another doctor had prescribed to her for "coughing". When I heard that, Mom and I said, simultaneously, "Coughing?!?" Everything I've read and noticed about Cipro and everything Mom has experienced from it caused us to both question this little bit of medentertainment information. Considering its power and its side effects, neither of us could imagine that any doctor would blithely prescribe this medication for simply "coughing". We both wondered out loud as a result how much of the medical information spewed through the set in the name of entertainment is not only incorrect but misleads people into badgering their doctors for medications that are clearly inappropriate and, for that matter, how often doctors give in to the pressure just to get one patient out in 15 minutes and another patient in. I know that my mother's PCP doesn't do this because he's used to me doing the research and questioning his choices. I know, too, though, that lots of patients who for one reason or another trust in doctors across the board or mistrust in their own ability to understand any research they might do on behalf of their own health aren't as circumspect as I am regarding my mother's meds. I didn't become adequately circumspect about her meds until my mother's blood pressure crash in the fall of 2002 from the simultaneous dosage of Prednizone and furosemide which were prescribed to bring severe feet swelling under control. Now, whether or not I mention it here, I research everything. If anything I read provokes the slightest bit of suspicion I immediately question the prescription and/or recommendation for treatment and/or modify the dosage requirements and instructions. Lots more people need to be doing this.
    This afternoon as our oxygen guy was packing his van preparing to leave we were finishing a discussion about the forcefulness of my e's to him when I inform him of the supplies we need on his next visit. I didn't apologize for this but, in an effort to explain, I told him that, over the last few years, I'd found it necessary to become so assertive as to border on aggressive with health care personnel, especially nurses and doctors, and that I tend not to notice when this assertiveness splashes over, inappropriately, onto those employed in the delivery of medical supplies.
    "With doctors," he said, "I just follow their orders and find that this works best."
    "If I had done that, my mother would be dead, now."
    As I expected, he gave me that, "You're exaggerating" look and changed the subject.
    I didn't bother to tell him that I wasn't. Until it happens to you, you don't believe others' tales of medically prescribed mistakes. And besides, take it from me, part of my continual exhaustion is due to all the work it takes to try to keep my mother minimally protected from both the non-alternative and the alternative health care systems. It isn't just the doctors, or the nurses, or the hospitals, or the insurance system. It is the entire area of health care that is the problem right now. Its current accelerated state of flux adds a touch of danger, as well, because everyone is trying to protect themselves from being accountable for the myriad mistakes that are, at this time, inherent in the system. I don't blame people who don't try to keep up with it. I can't assuredly state that my heightened efforts to both utilize health care to my mother's advantage and protect her from its tragic ruts won't keep my mother from being lost in one of medicine's pot holes. I hope this doesn't happen but it wouldn't surprise me if it did.
    Damn, it's four minutes after 0100 and the dryer just stopped. No wonder I'm tired. Time to recycle the clothes and go to bed.
    Later.

...makes the most interesting and amusing connections now that she is a fair distance into the mental creativity to which we often refer as mental decline. The most interesting and amusing and useful are the connections her mind forges when she wants a cigarette but can't get past the "want" phase prior to acting on the desire.
    Since I'm trying, right now, to keep her on oxygen as much as possible without warping her into directionless frustration I try to pick up on the signs that at a particular time she critically needs nicotine or needs to revel in her generational identity connected to cigarettes. Now that I've removed all means of ignition from her immediate vicinity her mind has focused on containers and their contents. I discovered this a few nights ago. Late in the evening she began rummaging through the items on the coffee table next to her rocking chair. Since this doesn't always mean she's looking for cigarettes I waited for a few more clues about her destination. She picked up a box of band aids, opened it, took out a band aid and scrutinized it.
    "Did you cut yourself?" I asked.
    "No."
    "Do you need a band aid?"
    She looked at me as though I'd lost my mind. "I must," she said.
    I decided to leave her to her own devices. She held the band aid between her index and middle finger of her right hand, just as she does cigarettes. It was then that I understood what she was looking for but decided to see what she was going to do with the band aid since she had no way of lighting it. After some seconds she removed the protective paper from the band aid, ripped off the flaps protecting the adhesive and fastened the band aid meticulously to the top of the TV table that holds her immediately necessary items. She sat back, examined her work, determined that one band aid didn't satisfy whatever craving she was misinterpreting, reached for the box, took out another and proceeded to fasten that one to the top of the table exactly parallel to the first.
    At this point I decided to stop her confusion. "Why are you doing that, Mom?"
    Again, I received her, "What's the matter with you, isn't you're brain functioning?" look. "Because I want to," she stated, just this side of defiant.
    "Mom, I think maybe you want a cigarette."
    She looked at the band aids stuck to the top of the table, considered the third she was holding between her index and middle fingers, looked at me and said, "What makes you say that?"
    "Well," I explained, "what you're doing right now may be fun, but it doesn't make an awful lot of sense and you usually like to make sense."
    "I suppose you're right," she said.
    I took her off the oxygen, turned the fan on her to disperse oxygen build up and handed her an ashtray, three cigarettes (three usually satisfies her) and a lighter I retrieved from a high cupboard in the kitchen. "Here, Mom, I think this will preserve our supply of band aids."
    "I suppose you're right," she repeated.
    Some time later, after cigarettes and a lively discussion between us about something she was watching on Animal Planet, she noticed the band aids on her TV table top. "Did you see these?" she asked.
    "Yes, Mom," I said. "You put them there."
    "Why did I do that?"
    "Well, although I can't read your mind I think you put them there because you wanted cigarettes, you were looking for them and the band aid box was the closest container to you so you 'did something' with the contents of the container."
    Once again, I got that look that told me sure was sure I'd lost my mind. "You think so," she said.
    "I could be wrong," I conceded.
    "We may never know," she said.
    Last night in the middle of an interview with Barbra Streisand we were watching on Inside the Actor's Studio she repeated her rummaging behavior. This time I understood the signal but wanted to see to what container she was going to turn her focus and what she was going to do with the contents. She found her sunglasses case, picked it up, studied it for an opening, unzipped it, examined the contents, removed her sunglasses and switched her "indoor" glasses with her tinted ones. She settled back in the chair, satisfied for the moment. When she began to rummage again I went into action.
    The room had only minimal light, as she prefers to watch TV in the evening with as little peripheral light as necessary. "Mom," I asked, "are your eyes bothering you?"
    "A little," she said. "I can't see the TV very well."
    "I think that might be because you put your sunglasses on. I was wondering if you put them on because your eyes were bothering you."
    "I must have."
    Although I was almost sure that the problem was that she had wanted a cigarette and was again focusing on the step where one finds the container and does something with the contents, just in case I was wrong I decided I'd better make sure that the problem wasn't really her eyes. I suggested that we try an "experiment". "Why don't we switch your glasses back and forth right now, so we can decide whether you're having a problem with your eyes?"
    "Good idea."
    She performed the switch a couple of times and concluded, "I can see better with these glasses," indicating her "indoor" pair.
    "You know what, Mom," I said, "I think you want a cigarette."
    "What makes you say that?"
    I explained how, now that she no longer has firebug materials at her disposal (and added, thank god she didn't so she couldn't accidentally set the house on fire) she is apparently focusing on the container aspect of cigarette packs when she's wanting one but is too distracted to determine the object of her desire.
    "That doesn't make much sense," she said.
    "Actually, it does. I think that at certain times your desire for cigarettes is so deep tha, when they aren't handy you manage the desire by following the path toward satisfaction rather than focusing on the end product that will satisfy that desire."
    "You certainly do a lot of thinking, don't you." She did not say this in a complementary manner.
    I laughed. "That's the world's complaint about me, Mom! May I remind you, since you made me and people's intellectual capabilities come to them through their mother's gene pool, it's your fault!"
    She laughed. "Well, may I please have a cigarette?"
    "Sure," I said, and performed the usual ritual surrounding her smoking.
    During the next commercial I, once again, apologized to her for the indignity with which I've found it necessary to saddle her of having to ration her cigarettes. "Mom, I know you'd like to smoke whenever you want and I know it offends you that I'm rationing your cigarettes but I'm in a difficult position here. I know you're not going to quit smoking. I'm not asking you to. But you need more oxygen right now than you were getting before. I don't know that this will continue for the rest of your life but I do know that the oxygen is as important to you physically as the cigarettes are to you emotionally so I'm trying to strike a compromise."
    "I know," she said.
    "It's not easy," I said.
    "I know, it's not easy on me."
    "Do you think there's another way we could handle this?"
    "You could let me smoke whenever I want."
    "You'd be smoking all the time, then, Mom, and we'd probably end up right back where we were before the blood transfusion."
    "What blood transfusion?" she asked, startled.
    I muted the TV and recited her recent history for her, as I find myself doing every couple of days.
    "I don't think I needed the blood transfusion," she said, when I was through.
    "I know," I said. "You told me that in the hospital. And, you know, I try to follow your wishes when it comes to medical treatments. This time, though, I had to agree with the doctors because I know how long you want to live and I'm bound to honor that above everything else. Do you trust me to do what's right by you medically?"
    "Oh, yes," she said. "I know you're doing right by me. If you weren't here I'd have doctors crawling all over me."
    She's right about that. "Well then, trust me on this issue. Right now, you need more oxygen than you were previously getting."
    "I know," she said. "I just wish I could smoke while I was on oxygen."
    "So do I," I said, "believe me, so do I. Then, I wouldn't have to monitor you so closely. One day, Champa, [reference to Little Buddha, which we watch enough so that she knows the reference] this may be possible, but not now."
    "I've been meaning to talk to you about that," she said, grinning.
    "And I've been meaning to talk to the medical-scientific establishment about that," I said.
    We both chuckled and turned our attention back to the program.
    Time to get Mom up. We've got the oxygen guy coming this afternoon. I'm using this as an excuse to readjust her waking up time.
    Later.

...Mom's Daily Tests and Meds. The link will take you to the first of the "ketchup" posts. Since I posted all this last night and I wanted the posts to fall in order by date and time, I had to invent times for each post. I included in these postings brief rundowns of how her recovery from the urinary tract infection is proceeding and her general reactions to the onslaught of the Cipro XR.
    I was up until 0245 this morning by choice. Despite my lack of sleep I felt like musing about the dehydration issue and the issue of negligence in regards to care of Ancient Ones in a very long post. Then, when I clicked the "publish" button, I somehow lost the post. Surprisingly, I wasn't upset. I remember everything I wrote and will probably readdress this issue at some time in the future.
    I also received a "comment", my first on any of my journals, on the post at which you'll arrive if you click the above link for a serving of ketchup, in case you want to take a look. It made me smile. It's from someone I think is quite a bit younger than me and has not yet been fully involved in the nurturing of others. The poster is sympathetic about the "stress" involved in what I'm doing with my mother, assumes a deleterious effect to me from the stress and advises me that there are agencies that can step in on my behalf and take care of my mother. I certainly appreciate the poster's nascent empathy; it's a promising beginning. I also appreciate the lack of knowledge and life experience behind the advice.
    Over the last few days I've been corresponding with a friend with whom I'd exchanged some mutually misunderstood e's. As we worked out the misunderstanding we both candidly copped to the stress in our lives brought on by family nurturing situations within which we are involved. At one point in the coming-clear part of our exchange, in response to him mentioning the stress in his life, I "joked" that I certainly forgave him for the stress bleed from him that stained our recent communications, as, I said, stress is pretty much an hourly companion for me and probably will be as long as I am involved in taking care of my mother and I "bleed" quite a lot, myself. After sending that e I found myself contemplating the definition of "stress" and its effects.
    Being alive is, by definition, stress. Complete lack of stress means complete lack of breath. The issue is how the "stress" of living is handled. There are times, as I take this journey with my mother, when I handle it well and relish the stress inherent in what I'm doing as well as the advantages of allowing myself to surrender to the dictates of that stress. There are other times when a particular situation arouses within me an antipathy that causes me to handle the stress badly, usually by trying to avoid it. In observing my history with my mother, my overriding consideration is that I'm grateful that I'm taking care of her and that I have the ability to do it as intensely as I do. I relish the molding of my character that the stress of caregiving provokes. My gratitude extends to those times when it seems as though I'm overwhelmed by stress. When I'm in the thick of it I'm grateful that my stress isn't generated from the sidelines where I could be wondering and worrying how my mother is, what her state of life is and whether she is in good hands. I'm positive, from my experience of having other people (not relatives and the few friends we have who have done this and know how to approach caring for an Ancient One) occasionally handle brief episodes of caring for my mother that if I were not doing this the stress of not knowing whether the care she was receiving was adequate for her would be worse, harder to handle, than the stress I experience as her fulltime caregiver. I cherish the opportunity to know and love my mother and the "stress" of her life in meticulous detail. When one has not been involved in intense caregiving of this nature, whether with a child, someone who is infirm or an Ancient One, one has no idea of the extraordinary bond created between the people involved and the rewards conferred by this kind of nurturing. Come to think of it, the word "stress" has two fundamental definitions, the second being "love". To live and to love, is to allow oneself to experience stress, both its challenges and its rewards. There are, I know, some subcategories of stress that are probably best avoided but overall, I think, avoidance of the stress of living and loving, no matter how intense, can become a prison in which, it is true, one may be relieved of a problem here and there but one also shuts oneself away from the joy that total involvement in the stress of living and loving confers.
    As the highest tenet of Buddhism states, compassion is the path to ultimate inner peace. Compassion demands total involvement to the point of surrender. I think the societal fear many of us carry of becoming so involved that we "lose" ourselves, thus our "lives", thus risk experiencing the "bad" fallout from "stress" is based on the belief that we can "lose" ourselves, and this is a bad. I think, outside of the experience of someone with Alzheimer's feeling the loss of oneself [and I consider it debatable whether this is a loss or a traumatic conversion], if you think you've lost yourself you're not recognizing yourself. The road to inner peace is to be so involved in the "stress" of living and loving that one cannot help but identify "you" and "it" as "me". At this point stress does not take us away from ourselves and our lives. It brings to us the realization that to be ultimately self-possessed we must know that, as Lennon/McCartney said in "I Am A Walrus", "I am he as you are he as you are me and we are all together." This means not only accepting our "oneness" but accepting that we are, for some interesting and not yet quite determined (at the level of critical mass) reason, living in a system of separateness, both of which are components of All. In essence, the stress of seeking to be completely involved is the stress of seeking to be completely uninvolved.
    I consciously accept the stress under which I now live within the context of taking care of my mother as she traverses the path of The Ancient Ones, even when I handle the stress "badly", even when I make choices regarding what aspects of this stress I will accept and which I will reject. The curious aspect of what I am doing is that the more I accept the stress of my choices in living and loving the less stressed I feel.
    I'm not saying that I don't have difficulties handling the stress of living and loving as I choose. What I'm saying is that, short of death, there is no way to avoid the stress of living and loving but to create another type of perhaps more easily handled and maybe less rewarding stress. Believe me, I make these choices many times a day, readjusting my choices as I observe their effects on my mother's life and my own. Sometimes my choices isolate me. Sometimes they usher me more fully into the "stress" of life. That's the bargain I struck when I said "yes" to life.
    "It's easy..." Lennon and McCartney say in yet another song, "All You Need Is Love". Well, it depends on what you mean by easy but, certainly, it's life, and it's love, and it's dynamic and I wouldn't want to be anywhere else, doing anything else right now. This is the "best" kind of "stress" I can imagine at this time. Blame it on my faulty wiring and my inadequate ability to express myself.
    Yes, I'll continue to use these online journal as therapy which will include accounts of being overwhelmed by the joys and the sorrows, the clarity and the confusion and the stress I've chosen. Yes, it is entirely possible that, as I continue others besides "Mermaid" will find my account disturbing, wonder why in the world I don't pass some of this "stress" off onto others and beleive that I need an escape. Let it be known, from this time forth, no matter how often I bemoan periods of exhaustion, no matter how often I wish, out loud, that I had a partner in this who is as equally involved as me, you must also take into consideration those posts in which I fully celebrate what I'm doing. Be assured, I really don't want an escape, even when I let off steam by howling that I wish for escape. This is life, my life, this is love, my love, and I have no regrets about chosing any of it. Looking back and forward I feel lucky that I've made the choices I have in regards to taking care of my mother. I'm pleased about all the choices I've made which led up to her asking me to live the final years of her life with her in total involvement. It may not be the wisest choice for others. This is the nature and mystery of the exultant separation of the One into the Many which we experience in this system of existence. It is the wisest choice for me.