Essaying the Situation

As of May 1, 2010...

2010-04-29T21:55:00.001-07:00

...Blogger will no longer allow FTP publishing. Updates to this blog, which may happen, can be found at http://essayingthesituation.blogspot.com. This section of the journal will also remain at in it's domain directory, so accessing links should not present a problem.

Report of Mom's Death

2008-12-27T12:52:00.002-07:00

My mother died on December 8, 2008 at approximately 0709. The immediately previous link connects to a description of her death, written a few hours after she died. I've "officially" closed off several sections of this group of journals, pulled together under The Mom & Me Journals dot Net. This section, however, I'm leaving "officially" open, for awhile, as I expect, as time goes by, I'll be wanting to sound off on a variety of aspects of my mother's and my adventure. If I manage to catch myself before I sound off from the seat of my pants, this section seems to be the appropriate place to do that. As well, I haven't yet come to a place where I am not posting in the main journal, linked above. So, you know, who knows where this will go, what will be added, and when? I'll certainly post links to new essays over at the main journal site, if and when they appear.

Untitled MBR Review for Mothering Mother

2007-07-03T12:36:00.001-07:00

    During a freshman college course in literature, one of my erudite professors suggested that novels dealt in truth more thoroughly than essays (Loren Eisely notwithstanding) because “truth is in the detail” and fiction contains profound, rather than reported, detail. I recall this as I set out to review “Mothering Mother”, a recent addition to the Caregiver Memoir genre. It is Carol O’Dell’s observation of narrative technique that is responsible for the sense of truth that soaks this book.
    Make no mistake, caregiving memoirs have become a genre unto themselves. Online journaling has, no doubt, hugely affected this development, although one of the initial in the recent wave of caregiver confessional published journals, “Elegy for Iris” by John Bayley, began as one of the offline variety. “Mothering Mother” by Carol O’Dell, is one of the newest and brightest (literally; the cover is a masterful eye catcher) offerings.
    O’Dell’s book is of the “old journal” school. My understanding is that these vignettes were fashioned from handwritten entries in a journal she kept while her family embraced her mother during her mother’s final years. I’m not familiar with whether the contents of an elder caregiver blog have yet been published. I mention that O'Dell's book originates from a journal because its organization is part of the reason the book is successful. It’s easy to pick up and put down; perfect for caregivers. I’ve often suspected that books written “for caregivers” don’t actually reach caregivers, who have little time for reading unless it’s of the technical variety. This book may actually make it to caregivers because of the ease of its organization.
    I wish I could say, for the purposes of this review, that I’m familiar with this fast growing genre and can compare offerings. I’m not. I’m a full time, in home companion/caregiver to my Ancient One mother. I write about our journey at “The Mom & Me Journals dot Net”. I don’t read much about caregiving because it’s what I do and what I write about. I probably won’t read about elder caregiving until I’m no longer doing it. Even then, though, I’ll probably favor reading about something else. I would not have read this book, probably wouldn’t even have known about it, except for a series of coincidental mentionings and sendings. I can’t say that if I hadn’t read it I would have been ignorantly bereft of enlightenment. I’m glad I read it, though. Ms. O’Dell is a keen and unembarrassed observer of her situation with her mother. There’s just enough history to impart understanding but not so much as to give a reader cause to wonder if the author is nursing a grudge through her writing. In addition, O’Dell’s writing is tight and flows well. O’Dell’s mother’s character and, eventually, her own and those of her husband and daughters, shine through. I did not identify O’Dell’s mother with my own. It was easy to differentiate circumstances and challenges, as well. I was grateful for this. The book allows a caregiver to absorb experience without comparing experiences.
    Some cover blurbs are hailing the intimacy and honesty of this book. I’m a regular reader of a few more than a few online caregiver journals and I’m used to brutal caregiver honesty, expressed well and with inspiration, so I can’t say any new frankness borders are crossed in this book. It is nice, though, to read a caregiving book that is not overtly or covertly instructional or obviously “meant” to be inspirational.
    I’ve often thought that, if I ever consider compiling a publishable memoir out of my online writings about my journey with my Ancient One mother, I would wait until some time after she was dead to compile it and consider publication. Carol O’Dell did exactly this in “Mothering Mother”. She did not, however, disguise the immediacy and urgency in some of her earlier vignettes in order to serve later direction, which is refreshing. It's easy to follow O’Dell’s journey to eventual peace with all facets of her final journey with her mother. It is reassuring for a caregiver who knows she will be taking this journey to read about it ahead of time. As well, O’Dell is peculiarly unsentimental about her experience, including in retrospect. She does not overtly discuss specific strengths that were developed as a result of her journey with her mother, but in the latter two parts of the book O’Dell’s changes are clear and clarifying.
    Would I recommend this book? I have, to specific audiences. Although I pressure myself to avoid caregiver literature, I’m glad I was introduced to this book. I think it would be particularly helpful to caregivers who are braving contentious parent-child relationships in order to honor to their elders. I believe this book would also be eye-opening for those who have a caregiver within their extended family network such as O’Dell, who is, I imagine, the epitome of sandwiching the generations, a process to which she refers as a “vise grip”. At the very least, browse it at a library or bookstore. The vignettes are neat and short. I timed myself: 1 to 1.5 minutes apiece. Better yet, click into The Mom & Me Journals dot Net and search the title of Carol’s book. You’ll be led to a couple of posts that quote directly from her text and discuss my caregiver/reader reactions. Plenty of opportunity to do some free reading while deciding whether to purchase or check out the book.

$25.00/hr - An Addendum to "I Can't Get It for You Wholesale"

2006-06-26T08:36:00.001-07:00

    A while back I discovered one of the prices (representative, I imagine, for area) being put on hourly caregiver labor, which can include almost anything avocational caregiving includes. The price came from a New York Times article published February 9, 2006, called Aging At Home about a community program that promises to be the "coming thing" in home care for the elderly and infirm. Beacon Hill Village is the neighborhood non-profit organization to which one can belong, within a circumscribed community, that will be your on-the-spot caregiver, for dues. The model is being lauded across the country. Beacon Hill Village will soon be publishing a how-to manual for other communities. As of the writing of the article, dues for the Boston community ranged from $550/year for "an individual" to $780/year for "a family". This, and you get to stay in your own home. "A la carte services", also referred to as "Concierge Service", are extra, although "discounted". "The cost of an aide," the article mentions, "about $25.00 an hour, would be prohibitive for many."
    I'll say. As far as 'round the clock care is concerned, "...as an organization, Beacon Hill Village made an early decision, for financial and legal reasons, not to own real estate or directly provide medical care. Thus, it has no homegrown solution for members who cannot stay at home." Or, for that matter, those who need a round the clock presence in the manner in which avocational caregivers serve.
    The point is this: Finally, an hourly price is being assigned to what I do: $25.00/hour. This, of course, is a to-the-organization cost. It includes profit, all taxes and the cost of hiring the employee, who probably makes anywhere from $10.00 - $15.00/hour, depending on experience. Still, that's a pretty penny. And, if I was contracting out as a self-employed "Concierge", I'd certainly charge, to me, what the organization is charging, in order to cover all my business expenses.
    I'm beginning to get the sneaking feeling that if we want to focus on taking care of our citizens within our communities and families, we are going to have to come up with another economic model within which to do it. Capitalism isn't safe and, anyway, it isn't working. While it's true, the per-year dues for Beacon Hill Village is not "prohibitive", the basic problem of what to do when a care recipient needs in-home community has not yet been breached, except by nursing homes and the odd subculture here and there.
    In the meantime, no one can afford me.

Paying the Bills

2006-06-25T18:59:00.001-07:00

You know my situation: I am the sole caregiver for my Ancient One mother. I pledged myself to her as her final companion in December of 1993. My level of care for her has gone from sharing a household and a sense of family to me doing just about everything for her, including being her (very assertive) medical advocate, handling all her life business and setting up and putting to bed her life for her everyday. I remain her main companion, her main stimulation, her main human connection with life. I am my mother's sole, full time caregiver. I do it all, including being her personal maintenance director, which includes such jobs as:

operating as her thirst;
setting her on an accident free visiting-the-bathroom schedule;
reminding her, several times a day, to blow her nose;
maintaining both her sense of humor and mine over how minute and thorough is my invasion into her life, now, to the point of being directly responsible for whether she lives or languishes.

The level of care my mother required racheted up very quickly beginning in 2000; although, by this time, I had already taken over her personal business. Medical affairs became involved. By the midpoint of 2001 I was foundering in trying to handle everything, including the personal, human detail of tending to someone who is old, ailing and isn't sure what physical or mental faculties she retains. One of my sisters, thankfully, noticed my predicament and, without judgment, began to coach me on how to solicit family help in order to make things easier on me.
There are a flurry of historical posts, listed below, describing this period in detail:

    Over the days in which the above emails were exchanged, MFS and I addressed, in detail, how to solicit family help, who we thought could best do what and how to rally the family. During this heavy duty organization, MFS volunteered to take over paying our bills, probably because I had lately and briefly gotten behind on paying bills and mentioned this to her. This was only a momentary aberration, though, connected with loads of other hectic business stuff with which I was suddenly struggling. I was a little surprised at her offer. I mean, no matter how bad things get, one can always pay one's bills; and, besides, she was in Florida, it would have been silly for her to be paying the bills for a household across the country within which lived someone who was alert enough to do this. After some consideration (maybe I was missing something here, I thought), I declined her offer but met her head on with a detailed list of how I would like various members of the family to help out: Such duties as taking over the handling of her stocks and twiddling with her financial profile to keep it healthy; taking over the handling of her taxes (which were challenging, at the time); taking over medical management (this was before I jumped into it feet first, but was still flirting with it; I was still feeling, though, that I would be damned if I became that familiar with her affairs); handling her military status and its effect on everything else in her life. Once I had given the matter of my mother's life and my caregiving some thought, I composed a list and even approached family members, individually, hoping to solicit the best qualified member to each task.
    Almost five years later, I am doing everything alone. How did this happen? I didn't ask this question until recently, provoked by a chance caregiver-article scrounge in which I decided to catch up on The Literature. I happened across an AARP article about "Involving the Whole Family in Caregiving". In reading it through I stumbled over the sentence: " A sibling who lives far away can still help with jobs such as paying bills, talking with doctors, researching local agencies, or calling regularly."
    Oh, I thought. That's where she got the suggestion of paying our bills. It was bizarre, but, it was a thoughtful suggestion in the middle of a thoughtful article respectfully encompassed within The Literature; The Literature about helping Mom or Dad to remain independent as long as possible. The thing is, our Mom was, by that time, long past independence. I vaguely (not well enough to reference, I'm afraid) recalled reading another article, some years previous, remembered because the following suggestion to caregivers and caregiver-helpers alike shocked me: Don't do anything you don't want to do, or you won't do it well and you won't enjoy yourself in the role of caregiver. The example used was: If you cannot face changing your Ancient One's diapers (which, admittedly, isn't nearly as sweet as changing an infant's diapers) hire someone to do it. No wonder, I thought, between the two Advisements of the Day, I had people volunteering to do things it's easier to do myself and people refusing to do jobs with which I was sure I needed help.
    I am living proof that it is not enough, as a caregiver, to try to never refuse offered help; to have a list of alternative jobs to offer if the offered help isn't necessary; to outright ask specific people for specific help for specific reasons. Now, we have to contend with potential caregiver-helpers deciding, under professional advisement, not to do anything they feel uncomfortable doing; to set up very specific safe zones and stick to them; for their protection.
    I didn't need help paying the bills. I needed lots of other types of help. I was specific about the help I needed. I explained situations in detail and how things in various areas had been handled up to the time of the need for help. The best I got were suggestions of how to make the task easier on myself (suggestions I had invariably already put into use); one sister fishing out needed military files which I've since used to conduct Mom's military business; to be fair, one offer to help me go through files, which I willingly threw to the winds in the name of enjoyment when that sister arrived here...by that time I was so sick of hearing about how to help myself, since I wasn't going to be getting the help for which I was asking, that I decided a vacation was in order.
    So, see, the thing is, if you are a potential caregiver-helper and live long distance from the caregiver and care recipient, it's important that, if you want to help, you initiate the situation with an openness to expand your boundaries and find out what you have to offer, rather than dictating, ahead of time, only what you think you can offer. Think generously with a willing-to-be-challenged attitude. Be open to giving more than advice; chances are the caregiver with whom you are dealing is aware of the advice you have to offer. Give time. Give involvement. Consider the overwhelming adjustments the caregiver has made and be willing to allow your life the flexibility to adjust for the inclusion of your family caregiver and The Beloved (By All) One To Whom Care is Being Given.

Why I Hate the Word "Respite"

2006-06-25T13:55:00.001-07:00

First, a definition:

Webster's New World College Edition Dictionary of the American Language © 1968
res·pite (res´pit), n [ME & OFr. respit; L. respectus; see RESPECT], 1. a delay or postponement, especially of something disagreeable; specifically, in law, postponement of the carrying out of a death sentence; reprieve. 2. an interval of temporary relief or rest, as from pain, work, duty, etc.; lull v.t. [RESPITED (-id), RESPITING], 1. to give a respite to. 2. to delay or postpone the carrying out (of a punishment, etc.).

    With that, you'd think I need go no further, right? Reason to hate the word "respite" seems to be laid out.
    The first time I heard this word in connection with caregiving was a few days previous to 3/17/01, uttered by MPS, whose husband, it should be noted, is an organ transplant social worker who has more than a nodding acquaintance with caregivers to the infirm. Thus, I shouldn't have been surprised at hearing the word in this context, but I was. I'd been so busy giving care that I hadn't had time to become familiar with caregiver-speak: I hadn't yet read any of The Literature; I was more than two years away from attending a Caregiver Conference; most of what I was reading was medical stuff, after having been abruptly ushered into the world of caregiving for An Ancient One whose health was quickly declining into a state at which it would later plateau, but I wasn't yet used to medical advocation.
    Although I was the only one in the room when MPS spoke THE WORD, I wasn't sure she meant it for my ears. Respite? I remember thinking. Jeez, that makes it sound like I'm digging ditches on a chain gang! Uncanny, considering that I hadn't bothered to look up a definition of the word until today, thus I'd only had cultural context within which to interpret it. I denied that I needed "respite" at that time, but I was grateful that related people were keeping an eye on me, in case I should founder. I mean, if I'm doing something from which I will, at some time, feel the need for respite, chances are I will founder, right?
    The problem with the word "respite" isn't just what it implies about what caregivers do, it's what it implies about what the "respite worker" is going to have to do: Take up the cross and the punishment until the caregiver "has the strength to carry on" or, more likely, when the respiter has to get back to his or her life, one in need of breaks, true: Dates, babysitting, time off, vacation, but, you know, not respite. A normal life of caregiving, for spouse, for children, for family, isn't punishing. We all agree with this, and act as though we do.
    Everyone seems to know, though, and agree that caregiving for The Ancient and Infirm is so onerous that one needs occasional "respite". And, I mean, you know, yes, "she obviously needs respite", but, tell me, who's crazy enough to "take up the cross and follow me"? No one except someone dedicated (as in dedicating one's life to a spiritual ideal) or paid to the task. "It takes a special kind of person..."
    It is interesting to ponder that when prisoners are granted respite from their duties, when someone sentenced to death is granted respite, no one "fills in". The chain gang is just down one hand; the executioner is just down one murder. When a caregiver receives respite, though, the "respiter" voluntarily agrees, according to our cultural wisdom, to take on the "punishment" the caregiver has been experiencing.
    Why, I have to ask, is caregiving for the Ancient and Infirm considered a punishment that must be relieved, rather than a/n a/vocation that deserves a vacation? Why do we think, all of us, somewhere under our better beliefs and intentions, that taking over for a caregiver to An Ancient or Infirm One is akin to entering the last, worst Hell of the Caregiver's Inferno?
    It has to be because no one that anyone knows has ever delighted in caregiving to the Ancient and Infirm; thus, we have agreed that one can't delight in this type of caregiving. Not only this, but, woe be to the unlucky soul who "respites" the caregiver. It is understood that this will be one of the heaviest of tasks of providing relief. "Don't do it if you don't think you'll enjoy it."
    I've learned from A History of Old Age that, as far back as we can trace, taking care of the old has never been considered a delightful task in Western Civilization. The luckiest of the old have always been those who can take care of themselves or somehow set themselves up, usually accidentally, throughout their life to accord the respect of being taken care of in advanced age (which usually requires both money and prestige); there have been many of these. There have also been more than a few independent Ancients among the less well-to-do, the commoners. Although taking care of one's elders within the family was often considered the right thing to do, it was rarely legislated. Our "memories" of past Southwestern European family units consisting of several interlocked, inter-caring generations is largely a myth. It seems that as soon as any population in any Western European country began to prosper, the family unit split into nuclear subsets to allow everyone a little more privacy. Poverty was the primary distinguishing feature of the inter-generational family.
    Caring for our old is something we're going to have to decide to learn anew. We don't have any honorable tradition; just honorable intentions. Entering into the life of An Ancient One in the same way we enter into the lives of our infants and toddlers, allowing our Ancient Ones' lives to enter into ours in the same way we seduce infants and toddlers into the family, are skills and situations for which we need to find intrinsic value and favor, which we can only do if we're all exposed to them, all around them, at some point in our lives.
    Whether or not we have within our social purview cultures that have lessons to teach us about embracing our old, we need to approach the activity as though this is New Stuff, because it is, to many of us. It would go a long way toward breaking through to the beauty of caring for our Ancient Ones if we could break through the hardwired cultural knowledge that caregiving is a "punishment" that requires "respite".
    I'm closing with another definition, one to which one is referred when reading the definition for "respite":

Webster's New World College Edition Dictionary of the American Language © 1968
re·spect (ri-spekt´), ...n [L. respectus;, a looking at, respect, regard pp. used as n.] 1. a feeling of deference, honor, or esteem... 2. a state of being held in honor or esteem... 3. consideration, courteous regard...

Consider that, in Latin, the words "respect" and "respite" have the same root; as if to imply that adequate "respite" should involve esteem, honor, conscious attention, certainly deference, perhaps even celebration, of not only the caregiver who's being relieved but the Ancient One for whom we are caring.
This is new territory for us rugged individualists: To learn to enjoy protectively, yet lightly, embracing our Ancient as they journey out of this world, as much as we enjoy the cradling, then the releasing into the world of our infants and toddlers. It is as though the majority of us are descended from ahistorical cultures who abandoned their old. It's going to be a long, messy road, I'm afraid, but I think the first thing we can do is this: Every time we use the word "respite" to describe what we should be providing for our caregivers, even if we are forced, by time constraints, to use this word, we should think about what we are saying in its name and whether we want our perception of elder care to be so onerous as to be in need of desperate respite. Breaks? Yes. Regular breaks? Absolutely. But respite? Only the condemned need respite. If we perceive our caregivers as condemned, perhaps we need to consider that, by refusing to help them as often and generously as possible, by stepping away from our caregivers, washing our hands of even knowing our Ancients for whom our caregivers care, then thanking our caregivers for relieving the rest of us of what we consider to be impossible tasks, we are the jury condemning them. In which case, we should do better than simply offering respite. We should reconvene the jury.

How To Be Where You Are

2006-06-25T09:50:00.000-07:00

I've written this essay every day in my head for some time as I go through the processes (usually well ordered) that involve taking care of my mother. This repetitive mental writing began some time ago after I read an article, courtesy of Caregiver.com about the importance of 'mindfulness' as one gives care, especially intense needs care.
I've read stuff like this before and never paid much attention, for two reasons:

I practice a natural, seat-of-the-pants mindfulness, anyway, and have brought that quality to my caregiving, and;
These articles never make much sense. They make the reader think that one must reorder one's day and mind and then one might be in the proper frame of soul to begin the practice of mindfulness.

    Phooey!
    Mindfulness, whether it be Buddhist mindfulness or practical mindfulness, begins with a technique that is very easy to talk about without mentioning nirvana. It helps, in considering and developing this technique, if one likes to be interested in what one is doing at the moment, but it isn't necessary.
    There are three key concepts to keep in mind in regard to Being Where You Are Now (call them "The Three F's", if you will):

Focus:    This does not mean you have to deep breathe, transport yourself to a meditative safe or happy place, you don't even have to slow down. Focus means just this: Take a look at what you're doing and where you are every moment. Notice what's going on. Are you bathing your care recipient? Take advantage of this time to really look at her body, become familiar with it so that you'll do a better job of cleaning, treating skin conditions and noticing 'irregularities'.
    When you notice what you are sensing and allow conscious attention access to that information to guide you through what you are doing, you will automatically be present. You will find, as well, that your present will include calm projection into possible futures.
    This is probably, by the way, the most important "F", so let me give you an example of how easy it is to focus:  I make my mother's bed every day. Sleeping is important to me as it is to my mother. I long ago began autonomically taking color and temperature into consideration when clothing 'today's' bed. I soon began taking texture into account. The most important criterion when making her bed, though, has become the color combinations of the sheets: Light clashing when I want to stimulate her through her nap; blue sky or blue country ensemble when she needs help relaxing; combinations of pinks and greens, pinks and purples and greens, pinks and beiges, when I want to stimulate healing and general alertness; yellow, orange and green when I want to reward a good movement day; purple and yellow when I want to stimulate deep self-attentiveness and muscular tone; lots of white when I suspect she will be dreaming a lot (my variation of the Buddhist "empty walls" concept).
    I did not make myself do these things. I projected my own sensitivity to color onto my mother, made some observations on the fly, empathized with how good it feels to fall into the perfectly appointed bed when one retires and, now, whenever I make her bed I have all this handy.
    This attentiveness, this focus, can be practiced with ease during any activity. You probably already do it with those chores you enjoy. Try doing it with those you don't. You'll probably end up liking those chores more.
    I can't promise you that time will fly. If anything, it will become syrupy because some of your focus will involve trying to live out of your loved one's reality, for the moment, especially if you're dealing with dementia.
    I can also tell you that focus in the moment promises that you will never get stuck in the moment. Another moment will impress its circumstances upon you and your habit of focus will continually bring you forward in time.
    This is the technical way of talking about the 'mysterious' power of mindfulness. It's not mysterious. In order to utilize it to its fullest, though, you must be aware, first, of what mindfulness is, in plain speech, then you must realize that you already do it, thus considering the possibilities of purposely doing it.
Flexibility:  Always be ready for the curve. Expect it. As a friend of mine told my brother-in-law when passing on information about proper attitude when driving a motorcycle, "Don't think, '...if I have an accident...', think, 'when I have an accident.'" It's not emergency thinking, it's preparedness.
    Some of it is knowing that you will automatically shine in a crisis moment; it's inherent in the nature of being human. Then, let your situational mindfulness notice each environment as you and your care recipient move through it and anticipate other scenarios under impending circumstances.
    Remember, too, you don't have to stop and breathe when a crisis happens. Trust your body to pull you into the amount of presence you need by automatically adapting your breath. Later, if you want to practice breathing exercises, that's fine, but, to begin with, let your body tell you how much it already knows.
Forgiveness (immediate, both of self and others): Know that you will never always be in the moment, that is, you will never always be mindful. Forgive yourself ahead of time, then forgive yourself again when it happens: When you fall into the past/future time zone, fret and become irritated. Know that this will happen. Be prepared to step back, in the moment, observe your irritation and what it is causing you to do, remember that change is constant and in a few moments you will no longer be irritated...and continue doing what you're doing. Apologize to others, as well, if you snap. Keep it simple: "I'm sorry for doing thus and so. I'll try harder next time." Be confident that you will; mindfulness ensures this.

    I do appreciate the growing "mindfulness" in the Caregiver Industry that is prodding people to talk about helpful spiritual disciplines. Unfortunately, most of the people who write about these disciplines forget to write about them realistically. They don't answer such questions as, "What is this, really?" and, "Come on, how do I do this when I'm at the sink, about to spit-bathe an 88 year old? Do I have to wait for my personal mantra?"
    Nope, all you have to do is look outward, at your situation, your companion, your role; this is how you really do it. Close, in the moment, nonjudgmental attention. What's that pattern of varicose vessels on her back? Does this look normal? At what temperature does she like her wash cloth? What about her eyes? Cold water compress this morning?
...and further...
    What is her presence in the day saying about possible food choices? Is today an indulgent day? What about right now, this meal? Do I need to saute a savory dinner to tantalize her into alertness? Does she want comfort food? What are her stats saying about what choices I should make? What about water retention? Is she moving a lot? Will she? Should we make room for that?
    It's just plain old paying attention. Without the New Age sound effects. Same thing. Different level of approachability. You already do it. When you allow yourself to be conscious that you do it, you will be able to bring the technique forward on demand. If you want to imagine yourself as the Dalai Lama or Carlos Nakai, fine. Just make sure you're imagining them "being here now".

No one would blame me...

2006-06-02T12:13:00.000-07:00

...if, at some point, I folded and turned my mother's care over to a nursing home.
    Not my relatives.
    Nor my friends.
    Not her medical professionals.
    Certainly not the nursing home industry.
    Not the many organizations who purport to support caregivers.
    Nor the writers of caregiving newsletters and books and blogs.
    Not my community.
    Nor my state.
    Nor my nation.
    Probably not my world.
    My mother wouldn't even blame me.
    Nor would I.
    Except for my mother and me, I'd blame everyone who didn't blame me.

This Isn't Your Mother's Caregiving

2005-12-21T09:20:00.001-07:00

I overheard a conversation at Walmart about a week ago that's been haunting me. The chattier of the two participants was the married-with-children sister of a woman who, according to the conversation, is taking care of the two siblings' mother. The conversation involved the listener commenting to Ms. Chatty that, despite not knowing her, she admired Ms. Chatty's sister for "taking on" the care of their shared mother. Ms. Chatty responded, "I don't know if she deserves to be admired. She's not doing anything more than our mother ever did for us when she was raising us."
My initial reactions:

Hmmmm. I'll bet the sister is non-married-without-children and the other sister figures taking care of their Mom is her errant sister's comeuppance for not doing life the way one is supposed to do it.
I'll bet the married-with-children (two of which were with her, a daughter that appeared to be a young teenager and a son who looked to be somewhere between 9 and 11) sister is also a "My life is so full I can't possibly help but thank you for doing this for us" sister.
I'll bet the married-with-children sister resents the comments her taking-care-of-Mom sister receives involving appellations such as "admiration" because, well, who the hell ever "admires" parents for being parents and, from her point of view, what's the difference?!?

Good question: What's the difference? I've previously written here about elder care being "different" than child care and that I believe a caregiver to An Ancient One is better off not approaching their charge as though being old is nothing more than childhood in reverse. Still, there are parallels: Diapers, for instance; dependency; sink holes in the thinking process; an inability to judge the risks in a situation; the need for focused observation of the charge and intervention before the charge acts; helping one's charge walk, eat, reminding them to drink and honoring the charge's need to have someone oversee, as inconspicuously as possible, every move they make. Sounds like parenting. The catch is, these parallels are separated by a universe of space and, in the tradition of parallels, the lines don't intersect.
If you have doubts, consider the following:

The normal child is born with lusty senses of hunger and thirst. Often, the normal elder's body is dispensing with these senses. Although it's not uncommon for a child to become so caught up in activities of the moment that they need to be reminded, sometimes vigorously, to eat and drink, the senses of nourishment of an Ancient One who needs care are a different phenomenon. I consider myself lucky that my mother's appetite remains hearty. Her sense of thirst, though, rarely exhibits itself and I cannot rely on it to keep her hydrated. The longer she lives the less likely she is to feel thirst. I have to be thirsty for her, sometimes in the face of her insistence that she's not thirsty. A parent of a normal child does not have to be hungry or thirsty for the child, not even for an infant. Infants will tell you, vociferously, when they are hungry or thirsty.
The normal child, when in the diaper stage, knows when she's in a soiled diaper. She may not care but she knows. The normal Ancient One often has no idea she has soiled a pair of paper underwear. My schedule of having my mother head for the bathroom at least every two hours when she's up isn't a type of toilet training. She is not ever, again, going to sense when she's leaked or soiled herself. She's pretty good at sensing when she has to have a bowel movement; much better than when she was ill. Still, we had an episode a few weeks ago in which she had diarrhea and didn't realize it. As well, the normal child has an interest in learning to eliminate "like big people". The normal Ancient One is a "big person". Once an Ancient One begins experiencing urinary and bowel incontinence that can't or shouldn't be assuaged with medication or an operation, the caregiver can be sure that these conditions are not going to improve.
Negotiating the sink holes in a child's thought processes is not the same as negotiating the sink holes in an Ancient One's thought processes. The normal child takes both conscious and subconscious instruction from a parent's or older child's direction. When Ancient Ones begin thinking from the holes in their thoughts they are past the stage where they are going to improve their intellectual acuity. They are also often past the stage of immediate correction. Thus, the caregiver often operates off stage on behalf of the Ancient One's thinking so that she avoids repeated explanations of decisions and actions taken on behalf of the Ancient One's life business.
With a normal child, negotiating the process of learning how to walk involves the ability to allow the child to fall, rise and try again. The idea, when attending to a walking Ancient One, is to make sure the Ancient One doesn't fall. Falling, when one is a child, is safe and instructive. When one is an Ancient One, falling is treacherous and definitely to be avoided.
Overall, caring for a normal child involves less energy investment as time passes. Yes, concerns change and, yes, seeing a child through her teenage years can be more stressful than seeing that child through the infant through pre-teen years. The goal, though, is to produce an autonomous adult and this almost always happens, despite a glitch here and there. Caring for an Ancient One involves an increase in energy and stress right up to the end. The idea is to accept the decreasing autonomy of the Ancient One in question and pick up the slack as time passes.
When "mistakes" are made in parenting, the parent typically has time, the child's adult life, to come to terms with what they perceive (or their child perceives) as their mistakes, acknowledge them and, if they're lucky and halfway decent people, this time allows for a chance to atone, partially or fully. When one makes a mistake in caregiving with An Ancient (or Infirm) One, there is no grace period, no possibility of making up for a mistake during a later period in the care recipient's life.
The most heart rending difference of all is this: Once a humans become adults, those adults, whether or not they become parents, are capable of recognizing, in sometimes excrutiating detail, exactly what their parents did for them. If their parents were even halfway decent, adult children are, at some point, overcome with gratitude for their parents' efforts and accomplishments, identify with them and express their insight and gratitude.
More often than not, considering that 50% of all the elderly over 85 suffer severe cognitive disability (statistic taken from Sick to Death), few who are in the hands of intense needs caregivers (as, cognitive dysfunction is often one of the conditions that qualifies An Ancient One for intense needs care) are capable of understanding, even partially, the comprehensive care they are receiving. In my mother's case, she doesn't remember that she isn't taking and can't take care of herself. These care recipients certainly aren't going to graduate to being an intense needs caregiver who will, one day, acknowledge the care he or she received, since death is the inevitable end of their need for care. Even if the Ancient One, at some time in his or her life, rendered intense needs care to someone else, they may have poor to no memory of this episode. Thus, the intense needs caregiver will likely never be recognized, nor thanked, by their care recipient; may even be resented for identifying his or herself as The Ancient One's caregiver and there is no chance of guaranteed reciprocal recognition as there is between adult children and their parents.

    Why haven't we, in this society, figured this out? Why do we continue to insist that caring for those who are in their last years is "nothing more" than caring for those in their first years?
    Our society, as a whole, is so anti-caregiving that it is extraordinary for any caregiver, whether she be a parent or a caregiver to a parent, to manage to give care without feeling some kind of resentment at some time. Blessed are those among us who can manipulate ourselves gracefully out of this resentment. Believe me, it's not easy and resentment sneaks up on caregivers at the most unlikely of times in the most unlikely of situations. This resentment displays itself in a myriad of ways. We speak about some of them but others remain occult. Parents resent the overwhelming task of parenting outside of community so much that it is not uncommon for them to resent those who somehow manage to escape parenting. Thus, the "wisdom" of the criticism of young, unwed mothers-to-be that one shouldn't opt for an "easy way out...you got yourself into this fix, you're going to have to get yourself out of it. Don't expect help from those who did it 'the right way' and, by the way, it's also a sin to opt for any easy way out: Abortion or adoption. If you do you'll be haunted for the rest of your life, or, at least, you'd better be. If you're not, there's something fundamentally wrong with you." Thus, also, the "wisdom" that those adults who don't get married and have kids are the "natural" choices for taking care of elderly parents because, you know, they haven't done their stint, it's about time they're made to step up to the plate. Both of these attitudes display a deep resentment of the tasks of caregiving.
    When I was a child, upon acutely observing my parents, primarily my mother, as caregivers, I made the decision never to get married and never to have kids. How in the world, I remember wondering, does anyone ever become a person if she spends most of her adult life making and raising other people? The truth is, after having been an intense caregiver of my mother for over a decade, I now get it. One continues to become a person throughout one's life. Those times when one is giving care are as important to personal development as those times when one is caring for oneself, negotiating the mysteries of "life out there", indulging in a desire to explore other types of existence and figuring out how to handle one's own aging. You couldn't have told me this and expected me to believe it when I was a child, though. Somehow, despite the fact that my mother worked outside the home just as did my father, despite the fact that everyone in our family, including the primary caregiver, my mother, was opinionated and interested in "the outside world", despite the fact that both my parents wanted to have children, loved their family life and never expressed any kind of resentment toward the inequality of caregiving, somehow I got the message, just from existing in this society, that I would be less than who I wanted and expected to be if I married and became a mother.
    I can't say that this feeling runs rampant among young women. Most marry, most have kids and most become primary caregivers to those kids. Most want to do this at some point in their life. Most, in fact, treasure the opportunity to do this and mourn if they don't do it. All three of my sisters decided to create their own families. None of them regrets it. Few young women, or men, for that matter are vested with the overwhelming twin peculiarities of my character that were evident the moment I emerged from the womb: My interest in isolation and my penchant for entertaining myself and finding myself the ultimate entertainment. Considering this, you'd think that no one who wanted to give care, have children, etc., would ever resent the activity. At some point, though, almost everyone does, not in small part because caregiving is not something we believe is inherent in cross-gender human behavior. It's something we believe only and primarily women should do and it is, as well, an invisible behavior that is worth almost nothing in regards to viewing it accurately and compensating its delivery.
    We are not a society who encourages both parents to become involved in parenting. We are not a society who encourages extended family to be involved in the lives of all family members. We are not a society who respects and adequately remunerates professional caregivers. We are not a society who believes in the village concept of caregiving. We are a society who extolls the virtues of the individual to the point of communicating that you're much better off if you can do everything yourself and can manage everything that comes your way on your own. We are much quicker to point out the pitfalls of depending on others than we are to acknowledge the pitfalls of going it alone. We are so focused on The Autonomous Individual that we are, most of us, afraid to get old because, well, we know that if we get ourselves into a fix the chances are good that help will be late in arriving, if at all, and inadequate to our needs. It's no wonder, then, that we think of caregiving for elders, or the infirm, as little more than parenting in reverse.
    A few months ago I chanced across a website created by a fellow caregiver. She had taken intense care of an Ancient One through death. Her site was well organized, full of inspirational snippets, advice, helpful links and some of her own story. I didn't think to bookmark it. I wish I had, as I would link her to the following: She advised all caregivers to think of themselves as "heroes" because, she said, that's what we truly are. I'm often slow on the uptake because when I confront such statements I have to think. This is what I thought on being pronounced a "hero": Heroes are people who suddenly find themselves in extraordinary and unexpected circumstances and forget about themselves in order to attempt to save someone else's life. Caregiving for the Ancient and infirm isn't an extraordinary circumstance, although because our society refuses to acknowledge the need for it ahead of time, it seems like one. It isn't exactly normal in the way parenthood is normal but, using the fairly recent statistic of 54,000,000 caregivers to the Ancient and infirm in the U.S., a little over 18% of us are doing this avocationally. This does not include our subcultures in which everyone within a particular family lends a hand in taking care of the Ancient and infirm. These situations drop off the charts. As our population ages many more will join our ranks. Although the alleviation of suffering is a primary activity of caregivers, rarely does a caregiver save anyone's life; more often what we do is make someone's final years, months, weeks, days and hours more comfortable and peaceful. Although emergencies crop up, the term "emergency", when applied to the ailing and dying, has a different definition. Response to elder care "emergencies" is often not the same as it is when the emergent person is younger and healthier. Sometimes, situations that would be considered emergent in the younger and healthier are not defined as emergencies in the old, ailing and terminal. The more experienced one becomes at caregiving for the Ancient and infirm, too, the less likely one is to respond to any situation as though it is an emergency. The reason, I think, why anyone would suggest that all caregivers are "heroes" is because she, as a caregiver, experienced the normal isolation and lack of support as onerous, which made her job much harder than she knows it would have been otherwise and, as do all caregivers for the Ancient and infirm in this country who are not a part of a subculture that embraces its old and infirm, she understands that people step up to the caregiving plate in this country against tremendous odds.
    There would be no reason to romanticize the activity of caregiving as a heroic gesture in any of its manifestations if we, as a society, were so care conscious of each other that caregiving was something everyone did, the way everyone, say, chooses a mate, figures out a way to survive in this economic system and learns how to operate peaceably in society. This would be the ideal situation. This ideal is so far from our society that glints of it cannot even be glimpsed as rising from below the horizon of our society.
    We simply don't pay attention to our caregivers. Thus, we consider caregiving a type of "dues"; if someone of whom caregiving is expected (usually because of their gender) manages to escape the peculiarly isolated caregiving with which this society saddles its caregivers we secretly hope the task will catch up with them. When it does we indulge in a sophisticated type of "she finally got hers" gloating. We expect only other entrenched caregivers to help caregivers; we encourage this, in fact, and form support groups for caregivers composed only of caregivers. When all else fails we provide a mean, low paid, low status substitution corps of professional caregivers and try to make it sound as though avocational caregivers are irresponsible if they don't rely on them "when necessary". Finally, we can't distinguish one type of caregiving from another. We confuse elder care with parenting and romanticize it as such.
    In response to the teaser I left in a recent post about the conversation that triggered this essay, a regular, thoughtful reader e'd me saying that, after considering her experiences as final caregiver to both of her parents she felt that parenting cannot be compared with caring for one's parents. I agree. Yes, from a distance the two look oddly similar in reverse. Yes, some of the surface tasks are incredibly similar, as they are bound to be when physical, intellectual, spiritual and emotional dependence are involved. But parents of normal children expect less dependence as time passes. They expect their children to become more like themselves rather than less so. They don't expect to outlive their charges. Experience tells them they are right to expect all these attributes to appear and their expectations will probably be satisfied. Caregivers to the elderly, infirm and terminal must learn to expect more dependence as time passes. They must expect the life to which they tend to become more divergent from their own. They must expect to not only outlive their charge but to become an intermediary to their charge's death. Children do not come out of death into life. The Ancient and infirm do, however, travel from life into death. The two journeys are not even in opposite directions. They are, as my reader stated, not at all comparable.
    The only correlation between parenthood and caregiving to an Ancient One occurs when a child takes care of a parent. The correlation isn't that the child is repeating for the Ancient One what the Ancient One did when parenting the child, even though the tasks appear to be similar. This was brought home to me by an e I received yesterday from a distant acquaintance who is not a reader of my postings about taking care of my mother. I don't think she's even aware that I journalize my experiences with my mother, although she knows I take care of my mother. She related to me that after learning about what I am doing for my mother she often wondered if she would be able to be as "patient and devoted" as she perceived I am in this circumstance [she obviously wasn't familiar with my spectacular Thanksgiving Failure of Patience and Devotion that occurred less than a month ago]. "Unfortunately," she continued, in a sort of 'ask and ye shall receive' fashion, the opportunity to discover her fortitude arrived when her mother developed cancer and she became her mother's caregiver, having to travel a long distance to do so while maintaining her own thriving business. She told me that she discovered the same reserves she imagined I possess (which I also imagine I possess despite the many times I've stumbled in the last 11 years of being my mother's final companion). She finished her story by mentioning that, "All the things that she had done for me as an infant and child, I was doing for her...Life really does come full circle." Although the points to which she refers in this "full circle" are side-by-side, they are not the same points and her comment underlines this fact. She did not say, "I parented my parent." She, rather, pointed out that as her mother had taken care of her when she was mostly dependent, she also took care of her mother during a similar stage. Here is the connection between parenting and caring for the elderly and infirm: It can be emotionally and spiritually gratifying to care for someone who once cared for you, not as payback, not as a form of dues, but because the best of caring takes place within a circle of loved ones taking care of loved ones. When one parents, if one does it well, one's arms separate to accommodate the child's linear progression into the world. When one takes care of one's parents, one's arms close around the loved one in an embrace that eases the loved one's digression out of the world. Similar? Only on the surface. Opposite? Not really. They exist on a circular continuum that includes caring for extended relatives; friends; superiors, colleagues and underlings in work and school; lovers; mates; strangers who pique our interest, sympathy and compassion. Together, though, these two beginning and ending types of caregiving completely describe the dynamism of what we imagine to be the circle of life, as they include all the tasks involved in all types of caregiving and they are the primary ways we learn to give care to everyone with whom we form attachments.
    Blessed are those who receive loving care as they enter this world. Blessed are those who receive loving care as they leave this world. Blessed are all who, having experienced loving care, are privileged to be able to lavish loving care on those who once cared for them. If we, as a society, have any smarts about us, we will pay attention to the heavy lessons to which we are about to be treated by the aging of our population and realize that mutual caring is not the necessary dirty work that makes life possible and which should be consigned to the invisible, but the fundamental activity that gives life meaning and is most felicitous when consciously shared by everyone. When we understand this we will finally be in a position to honor the life of every individual and no individual will experience the devastation of unwanted isolation and lack of needed care at any period in her or his life.

Medicine in the Hot Seat

2005-07-14T23:32:00.003-07:00

    The good news is, Mom got bounced by yet another physician due to my efforts. Good news? Yeah. I now figure if a physician cannot work with me and resents my efforts to make sure professional health care is appropriate to my mother and worth her insurance doling out money to pay for it, the physician's acknowledgment of this by dismissing my mother as a patient is good news.
    I received the letter today. I didn't expect it. I'd e'd a friend a few days ago, immediately after I Fed-Fedexed my letter, that considering my mother's history with the clinic and all its personnel, the overall productive relationship we've had with everyone except this particular doctor and since this doctor was new, it was our first visit and things could change, I was sure she wouldn't get bounced. Today, though, when I saw the envelope from the doctor that required my signature as recipient, I knew before opening it what it contained and I was relieved. I'd been thinking, over the last few days after having Fedexed my letter of review of the bad appointment on June 23rd, that it might not be a good idea for me to try to work with this doctor. This doctor is a close version of the last doctor who dismissed my mother because of me. One of the bones of contention during the appointment was, as before, scoping.
    Within less then two hours of having received my mother's dismissal we were back with her former PCP who'd left the clinic in November. At that time, in part because the other clinic was so vague about where her former PCP had gone and in part because I trusted the doctor who owned this clinic, I thought it would be best to stay there instead of trying to find her former PCP. I thought this would guarantee continuity of care because her records were there and the owner of the clinic would likely hire personnel who closely matched, in quality and outlook, himself and colleagues who'd gone before. After having our first Post-Former-PCP appointment with The Wondrous FNP I thought I was right. Now I think The Wondrous FNP may have been a fluke; a good fluke for us. The new physician is also a fluke; a bad fluke for us.
    I was up front with my mother's former, now current, PCP's assistant about what had happened; that is, why we'd stayed with his former clinic after he left and why my mother was bounced. I wasn't sure how he would react, since this physician saw us through the first physician dismissal, as well. I reflected, though, that he and I worked hard to develop a productive relationship on behalf of my mother that dignified her Ancienthood and her desires for her own health care. I decided it was worth the risk of the possibility that we may not be accepted. I even suggested to the person who answered the phone that the doctor may want to be asked whether he wanted to reaccept my mother as his patient and be told why I had finally sought out his office.

    I'm going to publish the letter I sent to Shiny New Doctor [heretofore to be referred to as SND]. Some of you may think it rough, tactless. Those of you who are regular readers, though, know from the publication of previous letters written to medical personnel that I can be tactful, complimentary, even effusively complimentary when it is deserved. This letter contains all these elements. I'm publishing it because I want others who may be experiencing similar circumstances with the non-alternative medical system on behalf of their charges to take courage from what I said. Depending on the physician, doing the same may get your care recipient dismissed, but that is not the worst that can happen; that contingency is a relatively easy deal.
    Either way, it is important, and becoming urgent, that patients who manage their own care and caregivers who manage the care of others come forward and speak out, directly, to those medical personnel who need to be corrected. The medical industrial complex is, as a whole, resistant, and, I think, running scared and apt to become even more resistant before patients and patient advocates arise en masse and say, "You exist for us before we exist for you." It appears to be trying very hard (although not necessarily successfully) to use American medical schools to flood the market with young physicians who are not only patient and advocate resistant but don't believe they can work with patients and medical advocates who don't lay down and play "Yes Doctor". I think the medical industrial complex is hoping that if it can graduate a tidal wave of physicians who have been indoctrinated to believe that it is best not to let the patient get in the way of all the latest gadgets and pills and tests and procedures and structures that non-alternative medicine is trying hard to install, medicine can revive The Era of The Physician As God and Healing as Sacred. It's too late, guys. The gig is up. Thus, I think, someone needs to record her trials and her tribulations with the current U.S. medical industrial complex in order to highlight exactly what medicine is trying to resist.
    The importance of making my record public is that, unlike spectacular cases involving rare diseases or horrifically expensive medical treatments that are refused to those who need them, the cases out of which movies are made, nothing about my mother's and my involvement with the medical system is unusual. This is all standard stuff: Ancient woman aging much like millions of other Ancients age; caregiver who is trying hard, in the face of everyday medical odds, to make sure medicine doesn't refuse to respect her mother's wishes and dignity and doesn't run roughshod over her mother's final years in the name of medical advancement in gerontology, just like millions of other caregivers. This is the kind of every day medical stuff people discuss offhand in their coffee klatches, over bridge or mah jong, at their book clubs. Medicine isn't going to change on behalf of the rare and the economically unfair. Medicine will only change when those clients in medical offices struggling to get information and have their opinions weighed in 15 minutes with physicians who are anxious to get on to the next fee or refer to yet another specialist in order to enhance their professional networks speak out about their experiences and their frustration; speak out to their physicians and their society, as well as their friends.
    My letter appears in the post immediately previous exactly as it was sent except for a few corrections of spelling errors and removal of names.

Physician in the Hot Seat: An Open Letter to All Physicians

2005-07-14T23:27:00.001-07:00

Shame on you, SND,
for not being prepared for my mother's above mentioned appointment. It's time, now, for you to correct your mistakes so that you, my mother and I can begin to work together to continue delivering the medical and healing attention appropriate to her. Let me list your mistakes for you:

Your first mistake in preparation occurred before the appointment. When I called on 6/16/05 to get a seven pill renewal of my mother's lisinopril to get her through the day of the appointment, “the doctor”, whom I must assume was you, left a message with the pharmacy that I needed to call and make an appointment for her. Not only had this requested appointment been set for about a month, at the time I made the appointment I informed the office staff that her lisinopril would run out a few days previous and I would be calling for a small, interim refill. When I called the office on the 16th to alert them of the order I was going to place with the pharmacy I reminded the person to whom I spoke of the appointment and our conversation a month ago about this contingency. I don't know whether this was noted in the file but when the final call for the refill was passed to you I'm surprised you didn't check the file for information on the patient, thus discovering that she had an appointment set (originally) for June 21st (which we weren't able to make because I-17 was closed due to the Cave Creek Complex fire and rescheduled for June 23rd). This gave me pause, at the time, but, I figured, the glitch could have many minor explanations and my optimism for the upcoming appointment remained undaunted.
You didn't read the supplementary material I faxed to the office the week prior to my mother's appointment. Had you read it you not only would have been fully informed on why we were there and what issues I considered important to discuss, you would have been prompted to leaf through her file to discover the course of her treatment since her last appointment, why that course was set and probably would have leafed further to discover what her treatment history has been since she became a client of your clinic in August, 2000. You would have discovered, from information I've supplied in ascending detail and volume, often at her doctor's request, my own role in her care and treatment and probably would have guessed why I've become so meticulously involved in her medical care. You also would have been able to prefigure a way to suggest to and discuss with me tests and treatments you'd like to have performed.
You weren't familiar enough with her online record [at this clinic’s office] to discover that she had, indeed, had an ultrasound in March, 2004.
You became defensive at my shocked response to your lack of preparation. You should have acknowledged that you had neglected to prepare. I wouldn't have been pleased but I would have been a lot easier on you and we might have been able to get something done.
You tried to cover for your lack of preparation by making your desires for her treatment seem urgent and unquestionable. SND, at the time of her appointment and right now in her life, NOTHING is urgent and NOTHING is unquestionable.
I doubt you even realized that we live in Prescott and commute for medical care. If you had leafed through her file and read some of the material with which I've supplemented it you would have been very familiar with this aspect of my mother's medical care.
I was surprised that your attending nurse wasn't prepared, either, which I know, from working with her previously through your clinic, is unusual for her. When she came into the examining room toward the end of the appointment and handed me a cup for a urine sample I asked, “Even though you've got the results from her urinalysis last Friday?” Her stunned look told me that she wasn't aware of the lab results. When she recovered she said, “I want one of my own.” Considering my mother's recent history of UTIs, taking two urinalyses in less than a week is technically defensible. I know, though, from her reaction that this wasn't the reason she asked for it. The truth is, I felt sorry for her. She was trying hard to cover for you. When you escaped the examining room and she replaced you, my first shocked words to her were, “[Name of nurse], he wasn't prepared!” She didn't say anything, she was loyal and true, but her silence told me she knew exactly what I was talking about.
Typically during the winter your clinic is very busy. My mother has been a client of this clinic since late summer of 2000, so I know that during the summer the office typically is quiet. On the 23rd it was quieter than I expected. Thus, I know that your work load was not an excuse for not being prepared.

SND, as I suggested in the office, you owe us a do-over. I suggest that the do-over be covered under your June 23rd billing to my mother's insurance carriers because nothing of consequence occurred at the appointment and you didn't earn your fee at that time. I know you could code the visit to look like a follow up but I stand firm on my suggestion because, SND, everyone in the U.S. who seeks medical care pays the price for unnecessary and/or unfulfilled insurance charges.
As well, because the trip up and down is not easy on my mother and includes the expenses of a motel room (so she can rest and we can wait out rush hour traffic before returning), my feeling is that the do-over appointment can and should be accomplished over the phone at a time agreed upon between you and me. The actual phone call should be initiated from and the expense borne by your office, since it was your lack of preparation that caused the June 23rd appointment to be unproductive. This letter contains my requirements as far as agenda. Your input is expected and sought, as well. Before I get to the agenda, though, there are some items of which you need to be aware (which you could surmise from her file but I'll give you the benefit of my doubt and cover them here):

The reason we continue to seek medical care in Mesa through your clinic is threefold. First, she has a history with this clinic and all the medical personnel employed there. Second, I have sought medical care for her in Prescott, through doctors' offices on an appointment basis, the emergency room and [urgent care]. In every case, she has experienced a medical misadventure, one of them major and dangerous, and I've had to seek further care in the Valley, either through [the Valley ER] or your office. Finally, considering that medical care for my mother has turned into a tour de force for me in regards to making sure procedures suggested are appropriate and do not turn into medical misadventures (as far as I can help it), my feeling is that it is better if we have to go to some trouble for routine (and, as it turns out, urgent) medical care.
Of all the medical personnel who have seen, tested, diagnosed and treated my mother (there have been many as a result of ER visits and consults regarding her iron deficiency anemia) only a striking minority have actually diagnosed, explained and treated her chronic conditions appropriately. Two were doctors at [the Valley ER], one of whom was her attending physician when she received her blood transfusion in June of 2004. In the wake of her endurance of two years of inconclusive testing he actually looked up her history, reviewed it and told me that, in her case, it would be best to simply leave her plundered, ancient, fairly frail body in peace, take monthly blood draws to keep track of her anemia and, if necessary administer transfusions. Under this regimen she hasn't needed a transfusion since the first one, due, I am sure, to the fact that, without a doctor's help and with much research, I found an appropriate iron supplement for her, Niferex-150, which has so far kept her in stable, acceptable range for almost a year. As well, this doctor and a couple others have told me that, because of her age and the fact that she has spent almost all her life at altitudes far below Prescott, she will probably never reach “normal” range for Prescott. She has, however, in the last couple of months, achieved at least one instance of almost normal range hemoglobin and normal range hematocrit and RBC for Mesa.
Treatment for her anemia includes a medical misadventure that taught me a lot about trusting my own instincts and research in regard to my mother. When her diagnosis of anemia became of acute concern to physicians in the fall of 2002 a colonoscopy was immediately suggested. At this time I was not yet a determined medical advocate for my mother. I was initially inclined to allow the procedure until I researched anemia in the elderly and the procedure and realized that not only was she probably not bleeding internally but the procedure required a level of patient cooperation of which my mother was no longer capable because of her dementia. In fact, her lack of ability to cooperate and to remember what was happening to her while she was on the table might even put her at higher risk for intestinal puncture than usual. For nine months, while her anemia scuttled through a disappearing/reappearing act, I fought the prescription against her PCP, a consulting hematologist and the gastro-enterologist who had been recommended to perform the procedure. Finally, I was browbeaten by the medical community into allowing it. Imagine my surprise when, immediately after the procedure, which had ballooned into twice its normal length, the first words to me out of [the gastro-enterologist’s] mouth were that she “never” wanted to “scope this woman again”, the procedure was “torture” for my mother, and I should see to it that all further testing on my mother was confined to imaging. No more invasive testing. In addition, although the gastro-enterologist told me my mother was loaded with polyps, all of which were removed, biopsied and found to be benign, there was no evidence of intestinal bleeding and from what she saw she considered it unlikely that my mother was bleeding in the upper digestive tract. She didn't qualify her recommendation for no more invasive testing with “unless her life is in immediate danger and there is a good chance that the procedure will yield either information or results that will not injure my mother's quality of life or will improve it.” I, SND, hold to that caveat but, so far, I have not needed to activate it. SND, the gastro-enterologist’s words to me were exactly what I had determined well ahead of the procedure being performed, and voiced to all doctors attending my mother, but nobody listened to me; in fact everyone did everything they could to undermine my confidence in my decision. Then, as it turned out after the fact, I was right.
This particular incident made me realize that, despite having been told by another physician that I should “get off the internet, get out of the medical books and leave the job of medical care to [the doctors] since that's what we are trained and paid for”, I owe it to my mother, and to medicine, for that matter, to trust my instincts and my research and insist that, prior to procedures and treatments, physicians satisfy my requirements. Since then, I have become resistant to such common physician arguments as:
- “But, she'll die!” Well, of course she'll die, and odds are, much, much sooner than you or me. One of my jobs as her medical advocate is to try my damnedest to make sure the medical community doesn't hasten that death. In the meantime, my mother remains alive and stubbornly following her own path through Ancienthood, which needs to be respected by the medical community;
- “But we can use it for history!” One thing I've learned about my mother's medical history is that only two people in the medical community have bothered to access and interpret it: The aforementioned [Valley ER] doctor and [The Wondrous FNP]. I'm the one who keeps it in mind (and some of it on paper) so I can inform medical personnel, who have access to it but don't access it, about pertinent aspects of her history. Besides [The Wondrous FNP] and the [Valley ER] doctor, I'm the only one who actually considers my mother's history, both documented and undocumented, when deciding on medical classification and treatment. As far as I'm concerned, medical people may like the idea of collecting medical history but they don't use it; I don't know why, but I don't care, anymore. Nothing is going to be done to my mother simply for the sake of “history” anymore;
- “But, we have to know why!” As it turns out, to adequately treat her anemia “we” did not need “to know why”. I suspect there are many other conditions to which this strategy refers and, I'm wondering now, if it applies to her recent history of frequent UTIs.
    As well, my guess is that a lot of what physicians say to me isn't recorded in their reports. It wouldn't surprise me, for instance, if the gastro-enterologist did not include her conclusions and advice to me in her report. One doctor who told me at one appointment not to consider a bone marrow biopsy, explained why, then concluded with, “If it were my mother, I wouldn't allow it,” (which I wrote in my notebook in his presence), did not remember, some months later, that he'd said this. When I reminded him of his advice after he reversed his opinion and recommended this procedure, he shook his head. I wasn't sure whether this was a denial that he'd said this or whether it was a gesture meant to remind himself that he shouldn't say something like this again to a patient/advocate who takes notes.
    SND, I am also responsible, as her medical advocate, for recognizing that metformin wasn't good for her and struggling to get her off it while maintaining what I was told were “necessary” fasting-normal range blood glucose levels, without the benefit, until very recently, of support of the medical community. I am responsible for determining that prednizone is contraindicated for her because when it does reduce edema it is too harsh and puts her in danger of a blood pressure crash, one of which she experienced 9/2002 which I mistook for a stroke and which the doctors attending her during her very short hospitalization for that episode subsequently labeled as a TIA (which I now realize stands for “What the hell was that?!?”). I am also responsible for discovering that this labeled TIA was, indeed, a sudden blood pressure crash. I have since discovered, on my mother's second and last course of prednizone, that it can also encourage swelling in my mother, rather than decrease it, thus, when I am asked for a list of medications that shouldn't be used on her I include prednizone. I am responsible for discovering that furosemide is only very occasionally useful or necessary for her and when it is, a dose of 10-20 mg is adequate. I am responsible for discovering that 5 mg/lisinopril twice a day is usually too much for her. I am responsible for making sure that she receives a goodly amount of antioxidants and natural blood thinners (instead of large doses of aspirin) in her diet to protect her as much as possible from compromising her liver (from her iron supplementation) and further mini-strokes, respectively. I am responsible for deciding that iron supplementation and regular review of her blood is better for her than no iron supplementation and fairly frequent blood transfusions.
    Not that I haven't made mistakes. I am, for instance, responsible for accidentally over hydrating her into an episode of severe low sodium that mimicked mini-stroking in early August, 2004. When she injured her back I was unaware that ibuprofen could cause stomach bleeding and initiated a short episode of that. But, I don't worry, anymore about mistakes I have made or might make because, all in all, I've made fewer and usually less serious mistakes than the medical community.
    Other than keeping as much of an eye on the industry of medicine as I can to try to keep its errors on behalf of my mother to a minimum and in the range of just this side of serious, I don't worry about medicine's mistakes with my mother, either, because I've learned, since 2000, that, the way medical practice is set up currently in this country, it's impossible for the industry not to make loads of mistakes with patients.
    I am not, SND, completely thorough in my medical advocacy for my mother. I learned slowly and reluctantly (I never imagined that it would be necessary for me to do this and I was caught by surprise when I discovered it was necessary) and, since I am my mother's full time caregiver, medical advocacy is only one of my many jobs on her behalf. Since I have no formal medical training, information is not always easy for me to find or interpret. I'm lucky that, within my family, two of my sisters have medical training, one as a lab technology supervisor/teacher and one as a kidney dialysis technician and, within my circle of friends, one is a kidney dialysis RN/supervisor. I have also witnessed first hand the medical mistakes made on some of my friends' elderly parents and this keeps me on the ball, as much as is possible, as well.
Regarding my mother's recent UTI history: It began after her hospitalization for her blood transfusion in June, 2004. I have discovered, since then, aspects of her history that probably go a long way toward explaining her recent UTI history. All UTIs that were documented were from e coli. Since then I've learned: a) from research that prolonged catheterization (over a few hours) sets up conditions in both the bladder and urethra that favor UTIs; b) [The Wondrous FNP] explained to me that ancient bladders and urethrae exhibit characteristics that allow auspicious circumstances for the introduction of bacteria into the bladder and I could expect my mother to experience more UTIs as she aged. As well, she explained that my mother's body no longer produces the optimum amount of flora and fauna needed to protect her, in-urethra, from opportunistic infectants; c) the quality of my mother's feces combined with the way she now uses her colonic muscles as a result of age causes all of her bowel movements to distribute anywhere from a little to a lot of feces throughout her entire outer uro-genitary tract. Her own physical inflexibility, now, causes her to be unable to clean herself properly after a bowel movement and, although I clean her and pay attention to these areas, even I am not able to catch everything in a timely manner.
I knew the information about catheterization before her hospitalization for low sodium in August, 2004. As a result, I begged the hospital staff not to catheterize her unless they needed a urine sample, and then only briefly. They ignored me. She was, thus, catheterized for five days that time and about the same amount of time when she received her transfusion in June, 2004. My belief is that she was catheterized because of her copious incontinence; it's easier for hospital staff to deal with incontinence when the patient is catheterized. Interestingly, she was being treated for a UTI, e coli, at the time of her admission in August. The treatment extended through her hospital stay and into her short term skilled nursing facility stay immediately after. I can't recall whether or how many UTIs she experienced between the end of her SNF stay and her appointment with [The Wondrous FNP] in January but [The Wondrous FNP]'s concern and her interpretation of my mother's UTI history was such that she wrote a PRN prescription for Levaquin 250. We discussed courses and she recommended 500 mg 1/day for 7 days.
SND, I too am concerned about the effect of frequent antibiotics on my mother's liver. I have been since this UTI debacle began. This, along with her iron supplementation, is why I suggested that some time soon a CMP, which includes liver enzymes, should be substituted for one of her monthly BMPs. Since the 23rd I researched uroscopy and discovered that the risks are: UTIs and urethral blockage. Now, considering all the above along with the gastro-enterologist’s cautionary advice never to have my mother scoped again, I am not willing, at this time, to allow her to be scoped for the cause of her UTIs, especially since I think the cause is pretty much covered in the above information. I have no problem with you prescribing a consult with a urologist. But, it'll have to be a urologist who is amenable to examining her without the benefit of invasive technology. Period. And, I'm guessing, once you've absorbed the information above, you will probably come to the same conclusion as me: The multiple causes of her frequent UTIs are obvious. Perhaps a urologist would have some cogent suggestions on how to relieve this treacherous little interlude in my mother's urinary health. BUT, I believe, first of all, that such a consult is not necessary immediately because I don't think her liver is showing signs of compromise, at this point, and that a CMP will confirm this. I see no reason why it is necessary to hustle my mother down to the Valley yet again during the hottest months, when she handles the trip better in cooler weather. I think that a PRN prescription for whatever antibiotic you deem appropriate is still advisable between now and late October/early November when I would be willing to set up an appointment for her with a urologist. After all, you doctors prescribe for UTIs without waiting for the results of a urinalysis. This is the way it's been done every time I've taken her to the doctor for one. But, if you continue to be resistant to this, perhaps we can come to a compromise in the event of UTIs between now and late October/early November: Suppose that you amend her monthly blood/urine draw prescription to include a urinalysis when I discover blood or the inordinate cloudiness in her urine that immediately precedes UTI bleeding. My understanding is that urinalyses are now done in less than a day. The results would be faxed to your office, to your attention, and you could determine, from those, what to prescribe for her, call our pharmacy here and order the medicine. In the meantime, maybe her monthly blood/urine draw should be amended to substitute a CMP for the BMP every month between now and the time I can get her in to see a urologist of your choosing in late October/early November, hopefully during a visit that coincides with another “routine”, face-to-face appointment with you. Thus, we can keep an eye on her liver, as well. I expect that, finally, there isn't going to be much other than what is now being done to handle this problem but, minus scoping and other invasive procedures that carry risks including further infections, possible blockages, etc., I am willing to allow scouting for answers.
I believe you need to know the history of my current medical approach to my mother:
- The laid back treatment of her anemia originated with one of the attending doctors when she was transfused in June of 2004.
- The loosening of acceptable boundaries for her diabetes management originated with a neurologist who recommended that 1) I not worry unless her blood glucose goes over 200 frequently (which it doesn't and probably won't) and that I not use injectable insulin unless this begins happening; 2) That an A1c of 7 “or a little over” is highly acceptable for her, as well.
- The cutback on glucose testing was recommended by [The Wondrous FNP], who noted that I was keeping her diabetes under excellent management through diet and glipizide ER. She recommended once a day, if that. I tend to do it twice a day, three times if I get nervous or allow her a dessert or some other source of refined carbohydrates (fruit, bread, etc.) in higher than usual amounts.
    [The Wondrous FNP] is also responsible for finally telling me exactly how my mother's health profile would be defined by medicine: Chronic Renal Failure in the very early stages (which explains her typically high BUN, about which I've been unsuccessfully questioning doctors for ages) and Anemia Due to Chronic Disease. Mind you, SND, if she had just thrown these at me without explanation I would have been leery. Along with these pronouncements, though, she was able to describe exactly, without having previously seen my mother, her behavior and habits at this time of her life and, as well, exactly described her trajectory from 2000 to now. Considering her accuracy in describing my mother's health profile up to now, I believe she also gave me some very valuable insight into what to expect: 1) increasing lethargy, sleeping and sedentary behavior (she's always been a prodigious sleeper; she has, however, always lived robustly during her waking hours so, although I have been concerned about her sleeping, I've been more concerned about how hard it is to get her moving); 2) at some point her diabetes will “go on vacation” (I think this is exhibited in the increasing ease I experience in controlling her blood sugar but I think we have a long way to go before the vacation begins); 3) if she is not felled by unforeseen trauma she will experience an “easy, pleasant death”, into which her body will slowly and gently decline over the course of her CRF and ACD.
    She also cautioned me to try to rein in my tendency to badger her into movement and wakefulness (my efforts are largely unsuccessful, anyway; my mother's spirit, will, and ownership of herself are incredibly strong), as continuing with this will only add unnecessary frustration to both mine and my mother's life, which, I can tell you, is absolutely true. Keep her moving as much as I can, she said, but don't make both of us miserable by trying to get her to do that which she absolutely refuses to do. She added to keep a close eye on her so as to prevent falls (which I do).
    I am, of course, always wondering, wondering, wondering what I can expect, what I can introduce, when I should overrule my mother's desires and what I should accept. It would seem, from her regular lab results, that she should not be quite as sedentary as she is (and, believe me, I keep her less sedentary than she'd like). But, something I learned recently from an article on Medscape (I'm registered there as a doctor so that I can get the latest bulletins about gerontology): Diversity of health profiles within a demographic is significantly higher in the elderly than in any other demographic. So high, in fact, that both negative and positive expectations must be individually tailored.

So, lets get on to the agenda for the phone do-over of the appointment of June 23rd:

I noticed that you rewrote her glipizide and lisinopril for “0 refills”. The glipizide will last probably through September (Qty 180). The lisinopril will last for only 50 days. Both are unacceptable. There is no question but what these medications are valuable to my mother's health. One of them occasionally needs adjustment and I am capable of doing this, but neither of them needs to be reevaluated and/or replaced. Considering my suggestion for how to manage her UTIs without an immediate urology consult, there is absolutely no reason, at this time, for us to schedule another appointment until late October/early November. These prescriptions need to be rewritten to run through that time. I'm not sure how you wrote the Protonix Rx. We're not done with the last and the pharmacy now has your instructions, awaiting our run out of the current prescription. At any rate, you should have those notes, so you can check them and rewrite that prescription for the same time frame, if necessary.
[Your attending nurse] mentioned something about writing a prescription for a different glucose meter. Frankly, I don't think this is necessary and I'm glad both of you became so flustered that you forgot to do this. I'm testing her mostly twice a day, sometimes less, occasionally thrice. The meter, despite it's age (we've had it since 2000) and supplies I have work well. I am sympathetic to the possibility of being able to test her without bruising her fingers and causing pain but, at the same time, we're doing fine with what we have. I'll leave this up to you, but, it's not a necessity.
I'm still curious about the aspirin issue mentioned in my fax of 6/16/05 (go back and read this, SND). I think she is probably getting enough anticoagulants through 81 mg aspirin and the supplements I give her that are natural anticoagulants (garlic and vitamin E) but I wonder if there is a way of determining this, in case her aspirin dosage needs to be adjusted.
Her curious blood pressure with its often low diastolic has always been a curiosity to me. On one occasion when I questioned one doctor he said, “It's fine. That's the BP of a finely tuned athlete.” My mother obviously, though, is not a finely tuned athlete. A nurse told me that a diastolic above 50 and a systolic above 90 were perfectly appropriate for my mother. Then, you mentioned, after looking at her blood pressure, that the diastolic indicated that she was dehydrated.
The truth is she probably is always dehydrated from current medical standards. However, medical standards on hydration in the elderly have changed a couple of times just since I've been taking care of my mother. One doctor told me that my mother should be hydrated to the point of her skin showing almost as smooth as mine. That's how I got her into the low sodium mess. One of the doctors who treated her for low sodium said, “she should drink only when she's thirsty”. My mother lost her sense of thirst a couple of years ago and I have to remind her to drink. We sometimes have pitched battles over this. The skilled nursing facility managed to dehydrate her following doctor's orders and had to scurry to hydrate her enough to keep her bowels from impacting. I recognize, now, that hydration in the elderly is an issue about which the medical community is as confused as I am [See: Water Whichery]. But, this doesn't actually explain her curious blood pressure to me. Any straightforward, non-hedging information you can give me on this would be appreciated. Is it possibly connected with her Chronic Renal Failure?
I still want a thorough explanation of the indicators for her diagnosis of Chronic Renal Failure and where she stands in this process. See the fax sent 6/16/05.
Regarding the ultrasound disagreement: Yes, as you will note in my 6/16/05 fax, I believe it would be a good idea to perform another. I do not believe that there is any reason to do this before late October/early November. Please note, as well, SND, her last ultrasound was March 2004. I may be mistaken, but I believe that Medicare/TriCare allows for a routine ultrasound only every two years. So, if you agree with me that it should be performed before March 2006, it will need to be coded as necessary for diagnosis, rather than routine.
Again, as per my fax of 6/16/05, anything new on the incontinence control front short of surgery or procedures (such as the plug) that require my mother's conscious awareness?
Again, as per my fax of 6/16/05, any OTC supplements that should be added to or subtracted from her daily medication routine? Since we saw you I read a report about a recent study in England showing that Vitamin D/Calcium supplements do not appear to prevent fractures in elderly women. There were some problems cited in regard to the mechanics of the study, though. Any thoughts on this and whether I should continue this supplementation?
Discuss her UTI problem AFTER YOU HAVE READ AND DIGESTED WHAT I HAVE WRITTEN ABOUT IT ABOVE.
Discuss the iron and antibiotic danger to her liver and how to monitor and/or alleviate this AFTER YOU HAVE READ AND DIGESTED WHAT I'VE WRITTEN ABOUT IT ABOVE AND MY SUGGESTIONS.
Anything else you think it is necessary to bring up and discuss.

    Previous to the over-the-phone do-over, SND, I expect you to have gone through my mother's file and be fairly familiar with her history. I expect you to have read the previous faxes and caught yourself up on her January 2005 appointment and everything since. During the do-over I expect that you will refrain from defensive behavior if I question your judgment; I expect you to refrain from a sense of urgency that is unnecessary; I expect you to refrain from using all those lovely little “doctor phrases” that are meant to communicate no information and push the patient/patient advocate “into line”. I expect you to respect my ability to understand medical information and to honor my questions if I don't understand. I expect you to remember that if I am not satisfied with what I get from you I'll hit the books and the internet, again. Above all, I expect you to remember that I spend 24 hours a day, 7 days a week with my mother. I am a close, meticulous observer of my mother's condition and health. I am also, usually, the one who administers and manages medical prescriptions, thus, I am in the best position to be able to report on how she reacts to prescribed treatments. You need to listen to, trust and even solicit my observation, knowledge and thought about my mother and her health.
    Lastly, SND, on June 19, 2005, the New York Times published an article about a new healthcare company Steve Case has started: Revolution. The umbrella company extends over several others, one of which will provide what Steve Case calls “Medical Advocates” for people who seek help negotiating the medical-industrial complex. This is what I've been calling myself for a long time. I was delighted to read that someone was going to take what I've been doing for my mother seriously as an endeavor that is absolutely necessary to patients. You are young in your practice, SND. I predict that most of your career will take place in the Era of Medical Advocates. You have a wonderful opportunity, here, with my mother and me, to prepare yourself for this era. In me you're dealing with an avocational medical advocate whose training is pretty much seat of the pants. This gives you some time to breathe and adjust the way you practice before you're hit with the real thing. In appreciating the way I handle my mother's health care and joining me in helping me achieve my mother's and my objectives, you have an opportunity to learn, first hand, why patients are feeling the need for medical advocates. Look at all the information I've given you in this treatise, alone, about my accidental discovery of the need for my own medical advocation on behalf of my mother. As well, because I report voluminously on my web sites about my mother and taking care of her, you've got, at the flick of a keyboard, access to an amazing amount of healthcare reality that relates to the elderly (all of which is copyrighted).
    You know, SND, it may sound as though I don't have much respect for medical doctors. Quite the opposite is true. Although I do not consider physicians demigods, I want to be able to consider physicians my most valuable health resource in handling my mother's healthcare. I approach physicians from this perspective. I am, most of the time, frustrated in this pursuit, though, by physicians. I understand that the problem is indigenous to the state of U.S. medicine at this time. It's changing, though, slowly, sometimes almost imperceptibly, but it is changing. Wouldn't it be great if you and I could cooperate successfully, even in the midst of the trauma U. S. medicine is currently experiencing, to achieve my objectives in regards to my mother's healthcare? What, you should be asking, are those objectives? First, to make sure that she travels this final road of her life in the best health possible, considering both the inevitable and her wishes to be “poked and prodded by doctors” (her phrase) as little as possible. Second, to make wise choices regarding when to overrule her desire to be left alone by doctors and to see to it that I do not subject her to unnecessary “poking and prodding”. Third, to trust her internal, ineffable knowledge of her body and her health and to leave myself open to accepting her choices about how she wishes to experience these last miles of her life.
    SND, I'm not going to ask you to apologize for your lack of preparation and your poor attempts, at the time, to make up for it. Although you have earned the distinction of being the worst prepared physician I've ever experienced, believe me, you are not the first medical person who thought preparation wasn't necessary in dealing with their patients, thus, you are not the first who has been surprised by my intimate involvement in the design of my mother's medical profile and treatment.
    I am, similarly, not going to apologize for the way I reacted to your lack of preparation throughout the appointment. It wasn't my “best work”, I have to admit, but I was more shocked than usual at your lack of preparation precisely because I went to such trouble to make sure you were prepared, knowing this would be the first time you saw her, and me. I knew, before I started faxing information, that we would be seeing a “new doctor” at the clinic. I was told by the clinic to fax everything to [The Wondrous FNP]’s attention and the staff would see to it that it was brought to your attention. This is what I did. So, you can see why I was completely taken aback by your lack of preparation.
    Included in this package are three self addressed stamped envelopes. These envelopes are for sending me following, if the sending applies after you and I do-over, on the phone, my mother's June 23rd appointment (if you don't use them all, keep them in the file for later):

Rewritten medicine prescriptions that cover the time between now and what I expect to be my mother's next appointment with you, and, possibly, a urologist in late October/early November.
Amendations to the current lab prescriptions for blood and urine analyses (which should include orders that I am to receive copies of all lab results; if this isn't included I'll send the amendations back to you for rewriting).
Results of the urinalysis you ordered on June 23rd.

    The business at hand as outlined by this letter requires initial contact, either by phone or email, between us to determine the best time for a phone do-over appointment. I require this phone do-over appointment to be scheduled, not sprung upon me without notice. If you call for scheduling and we're not here or I'm unavailable to answer the phone (I am often elbow deep in taking care of my mother and can't get to the phone), we have voice mail which picks up after 5 or 6 rings. I will accept any reasonable time and would appreciate at least one day's notice for the do-over so I can manage that day in order to give my all to the do-over appointment without interruptions. I'm putting no time requirements on the appointment. Although I was appreciative of [The Wondrous FNP]'s generosity and consideration in regard to time, I'm also successful with short appointments IF BOTH THE DOCTOR AND I ARE ADEQUATELY PREPARED.
    I am Fedexing this letter to you. You should receive it no later than business hours, Tuesday, July 12, 2005. If I haven't heard from you or your office, either by phone or email, by the end of business Thursday, July 14, 2005, to schedule a do-over appointment, I'll call the office on Friday, July 15, 2005, to check on the progress of the setup. My call will probably be in the afternoon, as that is also a monthly blood draw day for my mother. I know that, often, doctors in your office are unavailable on Friday afternoons. If this applies to you I expect you to leave word with the office staff for me on when would be a good time for us to perform the do-over phone appointment. If it turns out that you decide to ignore all this, SND, my plan is to petition [the owner of the clinic] for redress of the disastrous appointment of June 23rd.
    Finally, SND, understand, despite the previous unfortunate appointment, I am sure, once you've considered what I've written above and looked over my mother's file, you will agree that the best solution to the problem is to do it over, over the phone. I look forward to hearing from you. I am optimistic that you and I can get off to a much better, much more felicitous start and can be an effective team successfully handling my mother's healthcare with compassion and appropriate medical attention and concern.

Thanking you sincerely in advance for your prompt attention to this serious matter,

[Daughter of and medical advocate for mother as patient] DPOA, MPOA, HCPOA

NOTE:  The doctor's response to the above letter was a short note, USPS expressed to my attention, citing the doctor's belief that he is unable to render the type of medical attention I ask for my mother. This is the same reason the Prescott doctor stated for dismissing my mother as a patient worded almost exactly the same. It's as though medical schools provide a course in The Need for Patient Dismissal and hand out templates for Letters Appropos to Patient Dismissal as part of the course materials.

A Turn in the Road

2005-02-01T16:50:00.000-07:00

    It's been, I realized today, when the sun observed obviously post-solstice behavior, much like A Change of Angle Brought About By a Force of Nature, the way I've been feeling since meeting with the FNP in Mesa and having my mother described to me as though this woman, who was a stranger, knew her intimately. She told me that the reason she could describe her so well is that all these 'lifestyle changes' are brought about by what she was able to clearly see from my mother's medical history (the latest piece of which I had handed her as we entered the office): Old age systems failure; in my mother's case, Anemia Due to Chronic Disease, the Disease being Chronic Renal Failure. Astonishing how a simple, accurate diagnosis and prognosis [Why hadn't I previously received this from doctors?!?] can bring so much sense and relief.
    My take, after living with these definitions-as-labels for several days, is that I think my mother has somewhat more than 3 years in her, even though the FNP did not divulge how far along her mother was when diagnosed with these two illnesses at 78, subsequently dying of CRF at 81.
    I think that not much is known about Anemia Due to Chronic Disease. I think this is the category which, for instance, my mother shares with our Mesa yardman, with whom she also shares a birth year, a blood transfusion and, previously, a smoking habit, but almost nothing else, including food preferences and activity profile. Our Mesa yardman was, in fact, scandalized by my mother's eating and sedentary habits. I think he is further scandalized that she remains alive.
    I think my mother could have been battling cardio-pulmonary 'issues' if she was still smoking. I think we have already witnessed a dramatic rise in overall sturdiness since she quit.
    FNP: "This is how her life will progress: She'll take more naps. Her days will begin later and end earlier. Her spirit will remain strong when she is awake. Her diabetes will go on vacation..."
    She trailed off and I prompted her: She will "drift away", it will be "pleasant". I interpret that this could go on for years. It is my own sense that considers five years at the outset. The FNP insinuated that she sees at least one more blood transfusion.
    I'm not going to worry about the iron supplements and the possibility of systemic "rust" unless Mom is beset by uncomfortable symptoms. She is on a high antioxidant diet, including several antioxidant supplements. I remember once remarking in this journal that she could probably survive a good year on her supplements alone.
    Now, suddenly, it is easier to enjoy her, even though I thought I enjoyed her plenty. I used to resist detecting those minutely indicative movements that meant she was ready for "a nap". Now, well, it's not that I welcome them so much as, hmmm...treasure them, I guess. This is my mother as her Ancient body gets ready to pull its physical plug. My mother is not an 86 year old Australian surfer. She may be a bit like Methuselah, she may never really die, just progressively fade as people weave stories about what may be happening to her, what may have happened to her. I think she stays on, now, no longer because she feels she still has something she needs to do, as she voiced to me several years ago when I first came to live with her, but because she can't bear to leave, it is such a trip, being alive. It is especially trippy just to sit here, surrounded by this life, in this life, and experience the passage of time from a timeless perspective. Who wouldn't want to linger, to extend that experience a bit, who wouldn't want to take some years, before moving on, to sit in a rocking chair and let the wave of life wash over you and rock you back to sleep?
    I think this is what she's doing now. She is the focus of this house, of the lives in this house, and we, all of us, including her, are glad to be managing these years this way. Thank you. Thank you.
    The FNP was very clear that protection would be the most important goal in this phase of my mother's life. Instead of cringing, I felt my chest expand, my arms drop to my sides and swing a bit, extending their reach. Wow, I remember thinking, I'm here, I can do this; in fact, I am looking forward to doing this. I nurse a fantasy, now, that is so strong and so vivid it has the power of a sexual fantasy: I imagine her dying in my arms. I receive enormous pleasure and satisfaction from this fantasy...as though I was nursing a fetish. It's interesting, I have not yet made it to the end of the fantasy; I have not yet imagined her dead in my arms. Perhaps, when I am able to imagine this I will somehow communicate this to my mother, she will know I'm ready and that is when she'll leave.
    It seems to me, from this angle, that she is immensely blessed, or very lucky, or both, to be able to relax into her Chronic Terminal life during her Ancient Days.
    As for me, I can hardly believe that I am allowed to be here. It is as though I was, without expectation, approached by a Master of the Craft and told, "Yes, you have done well with this loving, you are ready to advance to the next level, one of the highest. You have located the tools, you have developed your skill with them, you are ready. She is yours for the rest of her time here. We know you will do well with and by her."
    And I'm stammering, "Thank you, thank you," as though I had aspired to this...when, in fact, I had barely aspired to traditional definitions of "being human".
    thankyouthankyou

Doctors and Patience

2005-01-12T23:06:00.000-07:00

My mother's still bleeding a bit from her urinary tract. I gave her a second third of an Augmentin pill tonight to work on her while she's sleeping. I wonder if cutting back on her fluids may have encouraged the infection. It's hard to know what I may have done right and wrong. I feel better having witnessed doctors making the same mistakes.
Less than a week ago I emailed a friend who is doing informed medication management on his own behalf with the following encouragement:

...it is absolutely an exciting, strength affirming process to participate actively, rather than passively, in medicine/healing. Even when a particular strategy doesn't work, you know you have the ability to come up with other strategies. Keeps everything openended and life seems to favor the openended approach.

    Although I think the process of medication management is more often, at present, practiced by caregivers (including parents), I know that it is becoming more widely accepted and utilized by everyone. While I suppose at one time it was wise to leave medication management to those with formal medical education, I think almost everyone has, within the last two to three decades, experienced at least one incident in their or their loved one's lives in which medical professionals managed medication badly. In the last decade lay people have been able to discover, through sources on the internet, pharmacists asserting their medical knowledge as they fill doctors' prescriptions and the expanding willingness of medical libraries to allow patients to conduct their own research, that medication mismanagement would have been easy to avoid if their medical providers had been more attentive. I do understand, from both sides of the fence, why medicine is suffering this problem. Despite the speech to which one ER doctor treated me about Medicare in rural communities and the need for patients to become active in promoting their doctors' interests, I think what needs to happen is a sea change within the medical profession. This could be prodded by the increase in patients arming themselves against their doctors' advice but will only be accomplished by direct, active participation of medical professionals.
    It's hard to change a conservative profession from the inside or the outside. How often, for instance, have you, as a lay person on the receiving end of medical treatment, sneered, within the last few years, at the blurb tacked onto almost all advertisements for products of a "medical" nature, whether prescription or over the counter, that urges you to, "...call your doctor..."? Even Andy Rooney, in December of 2002, sneered publicly at the blurb in an essay published on 60 Minutes - Ask Your Doctor. Yet medicine hasn't changed much in the 2+ years since he vocalized the problem on national TV. If anything, the tag line "...ask your doctor..." has become more prevalent and less respected.
    My medical experience of the last several years with my mother tells me that the most important change taking place in medicine, currently, hasn't been initiated from within the profession. It is the movement of ordinary citizens, all of whom, at one time or another, are medical patients, who, out of desperation, are making judgments about their own and loved ones' treatments based on two criteria: The availability of medical information to the lay person; and the inability of their professional health providers to adequately address their medical needs and concerns. Little by little we are pleading with, and beginning to convince, our medical providers that they need to pay attention to our zeal to try to keep medicine from making mistakes on our behalf that should and could be avoided with a little more thought, attention and research.
    Who knows how long it will take for the AMA to get it? Over the years of my mother's intensifying medical treatment I can tell you that it is the two youngest, freshest doctors that have been the most adamantly against my questions and research on my mother's behalf. They have also been the most likely to threaten me with, "...but she'll die!" I managed to convert one through my "unprofessional" successes on my mothers' behalf. The other, though, was so upset by my efforts that she dismissed my mother as a patient after three months. My observation is that, since medical schools are turning out more rather than fewer young doctors who are patient resistant, it's going to be awhile before medicine hits bottom and starts noticing that if it reaches out to its patients it will rise in stature.
    Patients want to trust doctors. Few of us who have become avocational health care providers for ourselves and our loved ones want to be doing this. We know that our efforts can't match a medical education. Unfortunately, we also know, for the time being, that our efforts can match, and often excel, the efforts of currently beleaguered medical professionals. We also know that it is only medicine, itself, that can turn this situation to rights. In the meantime, we'll do what we can to keep medicine from clumsily mistreating us and our loved ones.

FOOTNOTE:  Do any of you remember the doctor from about a year ago of the Dismiss The Mother Because The Daughter's a Troublemaker, Asks Too Many Questions and Makes Informed Decisions Which Get In The Way of Me Generating Money for My Clinic episode? At the beginning of last month I finally got a bill from the office (my mother was dumped at the beginning of last March). I noticed that both appendages of my mother's insurance denied coverage. My guess is that this office's bill was denied either because they applied with incorrect information (which is common) or my mother's primary insurer noticed that we didn't have this doctor very long, there appeared to be no break in my mother's visits to her Mesa PCP, thus made the decision not to fund this office because it couldn't be considered a PCP or a consultant. I sent the bill back to the office with Mom's insurance information (which they supposedly already have) and a note explaining that, since the doctor dismissed us and didn't do a hell of a lot for us otherwise, whatever the office could get from insurance, however they wished to code the visits, was all they'd be remunerated for rendered services. I haven't heard anything since. My guess is that, despite medicine's continued crown polishing, it is beginning to jump when patients say "Jump!"

ACKNOWLEDGMENT:  A hearty thank you to MFASRF for his precise, perfect editing and the kick in the ass it gave me to edit a bit further.

The Myth of the Wisdom of the Ancients

2005-01-07T16:41:00.000-07:00

    Some months ago my mother was watching a Dr. Phil show about disciplining kids who are (and/or when they are) difficult to handle. As my mother watched the videos of the kids misbehaving she leaned forward in her chair, eyes glittering, hands gripping the arm rests. She could contain herself no longer when a biter was highlighted. "What she needs to do is bite that child right back. Show him how it feels. Don't injure him, mind you, but hurt him enough so he gets the point."
    My mother is a retired teacher. She was at the top of her field, loved what she did, taught in both public and private schools, was recognized and lauded more than once for her teaching skills and techniques, was relied upon for much Teaching Wisdom from other teachers...I could go on but I won't. She taught through the eras of corporal punishment and no corporal punishment. I don't recall whether she ever engaged a child corporally in the name of discipline. I don't recall ever being bitten by my mother, and I'm sure I would remember if she had, but I was not a biter.
    I have heard her recommend a variety of "bite back" disciplinary reactions to child misbehavior. It is to her credit that she would never dream of considering, much less calling, any child "evil" or verbally abusing a child. She doesn't believe in verbal abuse or considering anyone "evil". She is practical in matters of learning, too, and understands the power of example. It is also true that fairly young children have yet to develop a reliable conscience. For this you need to be fairly far along the Sympathy With Others path. There are many children who misstep morally at certain ages. I have always cringed, though, at the example of purposely hurting anyone to teach them a lesson in hurt. There are enough people out there with short fuses so that it never takes long for a child to begin to experience hurtful (in all senses) attacks. The truth is, I don't know anything that would work better than my mother's strategy for training a child not to hurt others. But, well, I'm of the era where smacks are questionable, to anyone, for any reason. I remember when I discovered that to not wear green on St. Patrick's Day was an invitation to be hit. I ever learned from this lesson that there are some people who are mean enough, for whatever reason, to look for opportunities to hit others.
    This is not the only area within which my mother's wisdom, gathered or awarded as a result of having lived almost nine decades, is questionable. If my mother had not entered the realms of Dementia-Lite I think many more of her conclusions would be considered wise. I notice that it is not uncommon for her to revert to "new" wisdom, gained in one's twenties without the honing of experience. Quite a bit of those pronouncements are not wise, nor well worn. As you've read, as well, she has a streak of cruelty in her, in the sense of coldness toward others who irritate her, and, as a sideline, enjoys torturing pets. Not big time, more like avocational bear bating. It can be dangerous. I'm don't think anyone would consider my mother cruel, but she has her moments. It's hard for me to recall much general wisdom rooted in cruelty, except for sophisticated economic "wisdom".
    I can readily identify, and have thought deeply about, three types of wisdom associated with, but not necessarily granted by, her age:

A deep trust in the changing nature of life: Nothing lasts forever; she knows this in her bones and it allows her a cheerful approach to life, which is deeply wise.
The ability to recognize, immediately, the silly, hilarious and absurd in life. She's always had this perspective but, as she is finishing her ninth decade, this foolishness is not diversion; it's the constant.
A peculiar Demented Wisdom, allowed only to those demented who are (and while they are) self-aware: The type of wisdom that mistakes me for someone, but for someone who describes a role I play in her life or reminds her of me, or vice versa. This is a perspective changing wisdom to experience and contemplate. It knocks the "Mistaken One" over the head with an eye splitting hammer.

My grandfather had several Ancient Truths; you pick the truly wise ones:

He believed, benevolently, staunchly, enviously, that all Native Americans were a species of proto-human unto themselves, "closer to the animals", he used to say, an example to us all, and could be relied upon to be more physically and spiritually aware than the rest of us billions of stupid dolts called humans.
He believed in the wisdom of rocks, reliant on intimate, sensitive, manipulative contact with them. I understand, from his work with rocks, what this wisdom is. Since I didn't know him before he was Ancient I have no idea if this wisdom gathered and flowered in old age or was early recognized;
He recognized how old he was, how long he'd been around, how much he'd seen and imagined and he demanded respect for this by gently reminding others how "dern young yer are". This, I think, is one of his individual Ancient Wisdoms.
He absolutely believed, from an early age, that one should maneuver through life as easily as possible by shrewdly picking compatible friends and mates. He did not die of any consequences of stress, which I believe he rarely experienced. This was a gift and he displayed it from a young age.

    One of my sisters, when she visits, hangs on the possibility of what she imagines will be pearls of wisdom, about all kinds of things but particularly about teaching, springing from my mother's mouth. Mom has a considerate and considerable intelligence but her preferred modes of communication are example and action. She is just as likely to toss off a factory-sealed answer as a thoughtful one. She's as likely to be foolish as wise, although, to her credit, she remains thoughtful and capable of pearls of wisdom. She even remains capable of noticing when she's been "wise". We joke about it, spurred by her embarrassment.
    I don't know whether she'll go down in our family as a "Wise Old Woman". Having had the opportunity to live closely with and attend to an Ancient One, I still don't I have a clear idea of what's wise and what's foolish when it comes to my mother's extensions into the world.
    I do know that some Ancients become wise in cultures that not only expect wisdom from them but encourage them to nurture their instincts toward wisdom. Classic Hindu psycho-social thought counsels one to expect this and prepare for it. Not everyone does, nor does everyone do it well. I remember a portrait in a novel whose name I wish I could recall of a man scrupulously, like the Sanhedrin, following The Path of the Ancients and including sexual predation as one of his journeys. Not an inspiring picture.
    At any rate, whether an Ancient One is wise should have nothing to do with whether that person's company is treasured by others. If an Ancient One is wise, chances are it is granted them by their character rather than their age. Further chances are that the Ancient One is not always wise depending on both internal and external environments. Foolishness is not a condition of chronology, either; it is as likely to turn up in The Ancient as it is in Those Wet Behind the Ears. Treasuring another's foolishness is part of loving. And loving is a wisdom unto itself.

Don't Wait for Heaven to Help Us

2004-12-30T14:27:00.001-07:00

There's an interesting article in this week's edition of Caregiver.com. The link will take you directly to the article. It is one woman's story of taking care of her Intense Needs grandmother for a week. I would say that it should be required reading for all people who have an Intense Needs Caregiver in their family and/or community but, the truth is, I remember being a non-caregiver, very clearly, and if I had read this article then, well, it's not that I wouldn't have believed it, it's that it would have had no effect on me other than some sort of mumbled, thoughtless response like that of the last sentence in the article.
I can't tell you how many times people, both strangers and not so strange-rs (although not, thank the gods, relatives) have told me that there is a special place in heaven for me because of what I'm doing with my mother. The first time this was offered to me I accepted it graciously and, not being a believer in heaven (or hell, for that matter), chalked it up as the best compliment a dedicated born-again Christian thought she could offer me. I continued to let it go without reaction (silent or verbal) a few more times. Then, one day after hearing it, I was catalyzed into thinking about it while I was wheeling my mother around the old Walmart looking for plastic sheets for her bed. These thoughts follow, not necessarily in deductive or inductive order:

I wonder if there is also a "special place" for all those who know an Intense Needs Caregiver and often think they shoulda-woulda-coulda except that, well, they've got their lives and, you know how important one's life is...even caregivers are scolded about the importance of "the lives" we supposedly "give up" to take care of our Ancients and our Infirm.
I don't want a "special place in heaven". I suspect, if there is a heaven drawn to the specifics that many Christians believe, the last place I'd want to be is in the Intense Needs Caregivers Section. Something tells me that they are cordoned together in case someone in heaven needs intense, special care and, believe me, I'm not interested in doing what I'm doing now once I leave this system. And, if we are cordoned off for special recognition, well, we all know how limiting a life of special recognition is...put me where everyone else is, please; I'm experiencing more than enough separation from others, now, as it is. Don't "honor" me with the same separation after I die!
I don't want any rewards after the fact, I want relief during the fact.
If there is a "heaven", wouldn't it be nice if everyone was there and we were all there because we all "took care" of each other, sometimes in groups if the care of one individual was intense, and we designed our entire lives around the reality that we are a decidedly social species and we all need some kind of care all the time, even and especially if that care means being relieved for some alone time from the rigors of intense caregiving?
Please don't leave my "reward" up to a questionably existent "father-god" so that you don't have to worry about it. I'm not in heaven, I'm right here and, as an Intense Needs Caregiver, I'm in the thick of it. If all you can do is tell me you hope that some benevolent god will reward me in the after-life for what I'm doing, please don't say anything to me. I can accept peaceably co-existing with others in a society that isn't geared toward mutual caregiving. Being reminded of this, as though it's a compliment, by being told that I'll get mine in the sweet by and by, is only an irritation.
If we really believe that there is A Special Place In Heaven for caregivers like me, I can't help but note that there are an awful lot of people who aren't interested in vying for That Special Place. Kind of brings into question the characteristics of That Special Place, doesn't it?!?

    This particular issue of Caregiver.com's newsletter states in the editorial that 54 million of us in this country alone are Intense Needs Caregivers. You'd think, considering our number, that I would not be one of only a few with these troublesome, not-very-caring thoughts. You'd think that I would not be one of only a few who, along with recognizing the extraordinary rewards of the kind of care I give, also recognizes the extraordinary burdens giving Intense Needs Care in a society such as ours engenders. Finally, you'd think that I wouldn't be one of only a few (and, mind you, I have yet to find those few; I'm sure they're out there, I just don't know where to look) who is impolite enough to say, "Whadaya mean, 'take care of myself'?!? Jesus! You may as well tell my mother to take care of herself!"
    I know we aren't going to "get it" as a society until long after my caregiving stint is finished. But, can we at least start questioning Caregiver Wisdom in this country, so that, the next time some non- or ordinary caregiver gets the urge to tell one of us Intense Caregivers that Someone is Preparing A Special Place for Us for After We Die, they think twice and say something else, like, "Here, let me do that for you..." and, as an Intense Needs Caregiver we know, because life is, finally, "like that", that the offerer knows exactly what needs to be done and we have no qualms about letting them do it for us or our beloved Care Recipient?
    "Oh dear," as my mother would say. The Curmudgeonly Caregiver strikes again. Don't listen to her, she doesn't mean it. Just give her a wide berth. She'll be fine. And, think of The Special Place she's earning in Heaven...would that all of us...
    Yes, exactly. Would that all of us. All. Of. Us.

Caregiver's Day

2004-12-18T17:00:00.001-07:00

    Ever wonder why there's a National Secretary's Day but not a National CEO's Day? Of course you haven't. CEOs are well enough compensated, not only for their position but for their years of what may have been undercompensated apprenticeship.
    Every wonder why there's a Mother's and Father's Day, even a Grandparent's Day, but not a Kid's Day? Of course not. Every day's a kid's day, some days, such as religious celebrations involving gifts and birthdays, more so than others.
    The people who have "Days of Appreciation" scheduled for them are exactly the people who don't receive nearly enough compensation for or help with what they do. Their "Days of Appreciation" are an attempt, I think, to mollify them so that they don't, during a particularly stressful stretch of service, go off the deep end and suddenly refuse to serve in the undercompensated capacity to which society has assigned them. It's a shallow and not wholely successful attempt, to be sure. Despite a glut of "Days of Appreciation", our society continues to foster droves of parents (primarily fathers, interestingly, considering that men are more used to the idea that service demands adequate compensation) and service workers who "inexplicably" abandon their duties and leave those depending on them in the lurch.
    It wouldn't surprise me if, as I write, someone, somewhere, noticing the ever increasing number of what could be considered avocational caregivers being pressed into service and the ever decreasing number of inadequately compensated, thus, unreliable professional caregivers, is trying hard to establish a "Caregiver's Day", under the assumption that it might help ease our increasingly tense national caregiving situation and allow some breathing room for people (on their own, of course, and, primarily already involved caregivers) to figure out how to modify this situation to everyone's benefit.
    No one likes to squarely face the state of service work in the type of economy in which we live. Having to do so appears, initially, to undermine all our hopeful "positive thinking" philosophies and starkly keep-the-money-flowing "Thank You, I Appreciate You" holidays. Such considerations also appear to threaten the possibility that people, primarily women, will continue to devote themselves "naturally and selflessly" to the care of our children, our elderly and our infirm. I think, though, that the difficulties have to be faced, squarely and uncomfortably, in order for the current caregiving situation to change. Let me tell you, from the front, without delicacy or apology, how it feels to be "appreciated" for my caregiving.
    Curiously, the only "thank you's" I receive that don't, in some way, irritate me are those from strangers who notice my mother and me and in public, approach me and thank me for taking care of her. Sometimes these are people who have taken care of parents. Sometimes they are people who are related to a dedicated caregiver of one of their parents. Although I'm open to the unabashed goodwill of such thank yous, it has puzzled me why strangers would thank me for taking care of my mother. The opportunity recently arose for me to question a stranger who was so moved. The blogger brainhell's reply was as follows:

I guess I thanked you for taking care of your mom because we all like to do good things for other people, and like people who do good, even though the actual doing is so hard. And I guess maybe it's some form of wanting to receive mercy if or when we ourselves are in straits. You could call it selfish but it's probably agape.

    The honesty of his response brought another consideration to mind: Often it is awkward and difficult to thank a family member for taking care of another family member because there is an unspoken undercurrent of, well, something unpleasant detected in the caregiver. I am no exception. My mother and I enjoy cut flowers so much we often buy them for ourselves. We love cards, especially those with newsy letters attached. Although it's neither fun for me to admit this nor pretty for anyone to hear, the truth is, with every bouquet of flowers, card, or verbal thank you I receive from my relatives, underneath my sincere delight and appreciation is an ashamed, internal, automatic reaction: "Well, there's another day someone won't be available to take over for me; there's another care-free vacation from caregiving I won't be able to take; there's another inadequate attempt I'll have to make to partially refresh myself in the midst of my constantly intensifying responsibilities; there's another doubt that, if something should happen to me, no one I trust will be prepared to adequately pick up the slack in my mother's life."
    I try very hard to hide the force of this undercurrent. I don't want to lead people, especially those I love and who I know love me, to believe that I don't revel in the few but magnanimous times when a relative has covered for me; when one of them has performed indirect but complimentary chores for my mother and me; the flowers and cards and profuse thank yous and notes of appreciation my mother and I have received (pretty regularly around recognized holidays, birthdays and during very occasional visits); the extraordinary sounding board I have in one of my medically trained sisters who has been invaluable in helping me gain the knowledge and confidence to defy the medical establishment when necessary; the thoughtful, much appreciated gifts. In fact, I am full of inadequately expressed gratitude for all these, especially considering that I almost never have the mental or emotional space to acknowledge their birthdays, holidays, etc. My life's history is not that of an ungrateful, unperforming wretch. If it had been, I wouldn't be here with my mother, I wouldn't have spent the last 10+ years taking care of her, and I wouldn't experience the many periods of exhilaration, gratitude and reverie afforded me by not only doing this for and with my mother, but being available (through situation, character, and the peculiar way I've lived my life) to do it. Yet, the gods forgive me, I remain so completely overwhelmed by the task of taking care of my mother alone that I periodically have to fight both anger and depression and am not always and completely successful. I know that, either by social sense or reading my "therapeutic outbursts" in my journal, all my relatives are a little afraid of extending themselves in whatever ways they are able, simply because they might risk a face-to-face outburst. In addition, the matter is complicated by knowing that all of them are independent, underappreciated (if not by their families then by their society), unpaid primary family caregivers who are trying desperately, as all caregivers do, to seek their compensation in the only ways this culture makes available: The twin practices of positive self-talk/taking themselves to task for feeling unrewarded; the sentimental published homilies provided by those who have never given intense care or are master self-illusionists; and, not only cherishing but worshiping the times when they hit their stride and are experiencing, unadulterated, the inspiration and exhilaration inherent in caregiving.
    I have the support of a family of friends who have been extremely helpful, in a variety of ways, to me as I give care to my mother. The primary caregiver of this family took care of her elderly father in home for several years. During some of those years I was able to help her out. When they visit, their eyes are as trained on my mother as mine are. Never does an extended visit go by but what they don't tell me to "go take a nap" while they "keep an eye on Mom", of which I gratefully take advantage. When the primary caregiver of this family detects that I'm going through a caregiver funk she blatantly tells me she's worried and immediately responds with ways to try to ease my burden or my feelings. I perennially forget to expect their concern and their help and yet, there it is, regularly, touching me on the shoulder or, sometimes, grabbing me by the scruff of the neck when I get in so deep I am foolishly refusing contact and help. Interestingly, they have never thanked me for taking care of my mother. In fact, the thank yous, generously, rightfully and sometimes, I regret to say, not often enough, flow the other way.
    By now, everyone is tired of hearing, "It takes a village to raise a child." Why? Because no such village exists in our culture and our cultural propaganda is that it is "natural" that mothers be the almost exclusive primary caregivers to children, that children be the almost exclusive primary caregivers to elderly parents and that any relative who's available be the almost exclusive primary caregiver to those with "special needs", and, as well, that professionals not only can but should be relied upon for help above and beyond family and are a concern free resource; if the caregiver can't let go of her concerns, that's her problem. If our cultural caregiver set-up is so natural, how is it that, in other parts of the world, exactly the opposite is considered "natural"?
    The resistance to our cultural recognition of caregiving as a community affair that can and should be compensated with elevated survival status to everyone who gives care doesn't only come from those who have never practiced primary caregiving. Just as there is an undercurrent of resentment in every informal (and, many undercompensated formal) primary caregiver(s) who ever accepted a "thank you" from a family member who is unable, for whatever reason, to participate in caring for a shared relative, there is a social undercurrent of resentment among all types of caregivers in this nation toward any caregiver who complains about the lot of caregivers, in particular or in general. The consensus is that millions of people (primarily women) throughout the ages have met these challenges "adequately", often without complaint, "I'm" doing it, too, so why can't "you" just shut up, buck up and get back to "your" job? Millennia of the neglect and abuse of caregiving due to staunch individualism, though, is not a reason for the situation to continue. This is no way to honor the memories of our past primary caregivers, let alone the reality of our present primary caregivers. If our culture is so damned good at producing and supporting primary caregivers, why is our international status as a nation who cares about its children so low?
    If I was to design a Caregiver's "Day" that was truly useful to me, here's how it would play out:

    One day every month someone who knows my mother or is interested in getting to know my mother, perhaps a relative, perhaps not, would show up. This person would follow me around from an hour or so before I awaken my mother until after she retires and I have performed the last chore directly related to taking care of her. This person would take notes (both of her/his own accord and at my direction) on every item and issue involved in my mother's care, observe what I do, how I do it and how I interact with my mother under all circumstances.
    On a second day every month this person would appear at the same time as previously. She/he would give care to my mother under my supervision while I observed, suggested, reminded and corrected him/her. This second monthly day would allow my mother and the substitute caregiver to become familiar with one another, adjust to each other's personalities and methods and design a relationship which both my mother and I could trust would be in her best interests when I need a vacation from caregiving.
    Both of these days would happen once a month because my mother's care changes, either in intensity or by method, at least once a month. Having these two days a month under her/his belt would allow the substitute caregiver to observe these changes so she/he wouldn't be thrown by new routines or conditions that need to be addressed on a daily basis. As well, some of these months would no doubt happen during periods of time when my mother was enduring short term out-patient treatment for some medically related condition, or hospitalization. Thus, the substitute caregiver would be exposed to the oversight caregiving necessary when medical providers come into play.
    Then, during predetermined times throughout the year, my mother would experience periods when this well prepared, very familiar substitute caregiver was her only caregiver. Because the caregiver would be so familiar with my mother and her care and have a working relationship with her, I'd be able to refresh myself without concern about whether my mother was being accidentally or purposefully mistreated, whether she was safe and receiving every aspect of care that is and might be needed and I'd know that, if urgent medical conditions arose while I was vacationing, they'd be taken care of adequately and with only as much of a possibility that my mother would be medically mistreated as exists when I am overseeing her medical care. I would also be sure that, in the event of a personal emergency that took me out of the primary caregiver racket, my mother's care would continue satisfactorily without reason for me to worry.
    I'd also have a type of partner in my mother's care who would automatically provide me with a specifically knowledgeable sounding board, would be motivated to think about my mother's care both "on and off duty" and offer meaningful suggestions and feedback. My mother would benefit from the stimulation of having at least one other person provide, in her/his eccentric style, the type of interaction that is autonomic assurance that she exists within a community of people who not only appreciate that she is alive but consider her life a resource worth many continued visits and interactions.

So, whatever you, as a nation, do, for or to the growing ranks of caregivers to the elderly and infirm, give us some days to prepare you then give us some days when you are the caregiver, but, please, don't give us a "Caregiver's Day".

Love and All that Shit

2004-12-18T01:19:00.000-07:00

    Today my mother had A Mother of All Bowel Movements. I have an idea how she and I managed to work up to it. She hasn't had popcorn for the last several days and apparently not enough fiber to make up for that lack. The other problem is that for the last 3 days at least she's been persnickety about fluids, we've had more than a few pitched battles about this and I gave up during a little over half those battles.
    When she headed into the bathroom to move her bowels neither of us had a clue that a little over an hour later she'd still be in there, would have eliminated very little, would have strained quite a bit despite my advice not to strain, would have read through an entire spice catalog, drunk a cup of hot herb tea and still be very uncomfortably clogged. She didn't want to remove herself from the toilet and walk around a little, which I thought might help. She was afraid she'd have an accident. I was hoping this, which I would not have minded cleaning. Anything to end her misery.
    A couple of times throughout the ordeal I offered to clean her. When she's a little constipated cleaning her mid-movement helps. She refused. After a bit over an hour I told her I was going to clean her anyway. She was so uncomfortable she decided to allow me this. I discovered that she was trying to expel rock shit. Jesus Christ Almighty, it was bad. I was able to trim the shit extending just beyond her anus. She returned to the toilet. I left her alone for about 10 minutes. She wasn't able to expel any more. I told her I was going to clean her again in case a bit more had managed to bulge out. Again she refused and I ordered her up. She complied. I knelt beneath her ass, separated her cheeks, looked up and, well, what a sight it was. Her sphincter was locked open almost two inches by a block of rock shit that appeared as though it had no interest in going anywhere.
    I told her it was enema time. She roared her disapproval but I told her the situation was beyond choice. She was so uncomfortable that she didn't think she'd be able to arrange herself into a reclining position to take the enema. I agreed. I decided I'd better give it to her standing up at the toilet, which is not recommended and carries some danger but, well, what are you going to do when comfortable reclining is impossible? I removed all rugs and plastic from the linoleum floor, brought in a huge towel expecting that the enema might work on her before she'd be able to reseat herself since it was obvious she wasn't going to be able to hold the liquid in. I very carefully inserted the tip of the enema bottle between the shit block and the wall of her colon. Before I'd gotten the tip in a half inch, before I was able to discharge the liquid, apparently the agitation of inserting the tip caused her colon to spasm just enough to catalyze a downward expelling contraction, she turned toward the toilet, which movement dislodged the tip of the enema bottle, sat down, strained mightily and immediately released two very thick, very hard blocks of shit, one of which was about 6 inches long. The ordeal was over.
    I ordered her not to flush and immediately taped the flush handle to the side of the toilet. She remained sitting until her colon relaxed a bit then stood while I cleaned her. Cleaning was easy. The olive oil she receives every day keeps her iron laden shit from soiling her entire uro-genital-eliminatory tract.
    Once I'd cleaned and redressed Mom, instead of letting that shit sit in the toilet and soften (which I wasn't sure was going to happen) I decided to glove myself and go after it. It's a good thing I did. She'd expelled quite a bit and all of it was either like slabs of granite or river rocks. I dug down into the pipe and extracted as much as I could before I finally had the confidence to flush the toilet. It probably sounds like this operation was disgustingly messy but it was the opposite. I only had a toilet to clean, not an entire half of a bathroom. Fishing her shit out of the toilet worked so well that it occurred to me perhaps this is the way I should handle all her bowel movements. That would certainly take care of the toilet clogging problem and after today I have no problem handling her shit.
    What does all this have to do with love? My maternal grandmother was in a nursing home during the last months of her life suffering from what was labeled as advanced Alzheimer's. When she became colonically impacted the staff cleaned her out with a spoon. I recalled this throughout my mother's ordeal today and realized that if she'd been in a nursing home spooning is one of two very uncomfortable, potentially dangerous ways this situation would have been handled. The other was the way the skilled nursing facility perpetuated on my mother last August: Load her up with laxatives and let her rip. If you read about it you'll know that from the nurses' point of view I was amused because I warned that if they used a typical laxative dose on her they'd have a mess on their hands. They ignored me and they had a 36 hour continual mess on their hands, and the bed, and the floor, and the bathroom. This situation was not at all healthy for my mother since her urethra had just begun to work off the challenge of the hospital's 6 day catheterization. Luckily, she was still on antibiotics for a UTI but continued having UTI problems after this, no doubt from the contamination of having diarrhea for 36 hours. As you'll recall as well, after this incident I instructed the staff to make sure she drank at least one 11.5 ounce can of V-8 juice a day (which I provided) and ate a bag of popcorn (which I provided). As you also know, I visited every other day and noticed that the staff never did this. Thus, when she left the facility she was shit impacted, although only slightly. Today was the first time her impaction has been this bad since the laxative incident at the nursing home.
    The love part is that my mother is not in a nursing home, is not being regularly subjected to spoons and lethal doses of laxatives in order to clear up impacted fecal problems which she'd probably be suffering on a regular basis if she was in a nursing home. She is on an extremely high fiber, high olive oil diet (which she wouldn't be enjoying in a nursing home) in order to keep incidents such as the one today as infrequent as possible. I also monitor her liquid intake much more closely and successfully (even when I lose pitched battles) than the hospital or nursing home did (and I kept after both places, explaining more than once to each that telling her to drink and leaving the vicinity would not work...she has to be coaxed to drink and monitored while she's drinking).
    After today's shit fest I gave her a modified and expanded lecture on refusing liquids which I think probably made an impact (forgive the pun, I couldn't resist). I expect we'll continue to have occasional problems. Although I'm being careful not to overdose her on liquids (expect today), she still has flashes of remembering a couple of doctors saying, "Have her drink only when she's thirsty." When these memories return she becomes so inordinately obstinate that, well, this time, I gave in. I obviously shouldn't have. Now I have an argument that, I hope, will trump her next "I don't need to drink anything if I'm not thirsty, that's what the doctors said" episode.
    I'd like to say that I can't imagine how a hospital or nursing home would have treated her today. Unfortunately, I know exactly how they would have treated her. This is one of the many reasons she's not in a nursing home. I love her enough to willingly maneuver through days such as today rather than have her in a nursing home. Someday, the gods please forbid, I may have to put her in a nursing home. But not today. Today, once again, I pulled myself up to her needs and discovered I am able to meet those needs in a way that preserved her safety, her dignity and her sense of community. I'm now even more determined to keep her at home as long as I possibly can. If I can plow through her shit I'm willing to bet I can plow through anything on her behalf.

Song of the Washer-ing Women

2004-12-14T00:09:00.000-07:00

    My mother and I sing the following song every morning for anywhere from 25 to 45 minutes, depending on how slow she and I are moving. Every morning it includes improvisations that may or may not have previously included. I've written in as many improvisations as I can remember of the hundreds that have been created since we began sink bathing her on October 26, 2003. The basic structure of the song, though, is always the same, every day, usually once a day, very occasionally twice.
    Every day, for a couple of months, now, I've realized that this song should be recorded here as a dedication to all caregivers who bathe their Ancient and/or Infirm and/or Just Beginning Ones. This is the most important song we sing with those for whom we care. It is always the first song of the day (even if it is repeated throughout the day), it allows us to draw a bead on each others' moods, sets the tone for the day and the accompanying dance, through a smoothly accelerating idle, revs our Beloved Care Recipients for the rest of the day.
    Feel free to sing along and add your own verses.

First Verse

Mom:  [sitting on the edge of her bed] My, did I sweat, last night! I'm soaked with it!
Me:  That's not sweat, Mom, that's urine.
Mom:  [glaring at me suspiciously] I don't think so. I think you're wrong.
Me:  Mom, your bladder has been leaking profusely at night for over a year. Beleive me, that's urine. If it isn't, there's definitely something wrong because, I can tell you, you're sweat smells exactly like urine! [she comically mugs her displeasure with what I've said] Take off night shirt, put on bed, not over the edge...good. Thank you. Arise! Let's get you bathed.
Mom:  And shine! I don't think I'll bathe today. [Mom rises from the edge of the bed and stretches.] Ohh, that felt good!
Me:  It looked like it felt good. You don't have a choice about bathing. I'm not going to let you marinate in your urine all day. Okay, you know the drill. Into the bathroom, sit down on open toilet, take off underwear, throw it away in garbage, not on floor, not in bathtub.
Mom:  Throw it away?!? Why?!?
Me:  Because it's paper, and it's soaked.
Mom:  Well, I hope we have more, then!
Me:  We've got lots. Now, go, now that you're practically naked, the only warm place is in the bathroom. Go! I'm going to strip your bed, spray it and I'll be right in.
Mom:  Spray it!?! With What?!?
Me:  Vinegar water. Go, before you freeze!
Mom:  Why are you spraying my bed with vinegar water?!?
Me:  The party line is that it's to clean your urine off your bed, but the real reason is to kill your kooties! Now go!

Second Verse

[Accompaniment for the following verse: A constantly running sink.]
Me:  Okay, last pill, open up...nope, nope, nope, don't touch it, your hands are covered with urine...good girl...okay, water...
[Mom raises her hand, waves away the water]
Me:  You don't have a choice, you're dehydrated, drink up, you may not be thirsty, but your body is...good, one more gulp...
Mom:  That's enough.
Me:  Okay, give me your left foot.
[I wash her left foot]
Let me know if the water temperature is uncomfortable.
Mom:  If it is, I'll kick you!
Me:  Whoa! You're in rare form today! Okay, right foot.
[I wash her right foot.]
Okay, lift left foot only.
[I lift the left half of the towel on which her left foot has been resting, throw it over the right foot, while holding her left foot.]
No, No, leave your right foot down, keep it under the towel. Thank you.
[I position a clean towel beneath her raised left foot, then support her left foot and rinse it.]
Okay, you may now raise your right foot.
[I pull the wet towel out from underneath her right foot, throw it behind me into the bathtub, pull the clean towel underneath her right foot, support this foot and rinse it.]
Mom:  [wriggling her toes] That feels good. You can keep doing that.
Me:  [soaping up the blue washcloth] I'll do it again, tonight, when I rub lotion on your legs. Now, you get to wash your face while I wash your left leg. Here.
Mom:  [snuggling her hands and face in the wash cloth] Mmmm, warm.
Me:  [while I'm soaping up the green washcloth] Wash all over face, both sides and forehead, to the hairline, wash ridges around nose, behind ears, front and back of neck, scrub, scrub, scrub, do everything twice, avoid eye area so you don't...dut, dut, dut...[a little louder] avoid eye area so you don't get soap in your eyes, we'll get that during rinses...
[I wash her left leg, keeping my eye on her face and neck progress]
Me:  Don't forget neck, scrub, scrub, scrub...
Mom:  I did my neck...
Me:  No you didn't, I was watching...
Mom:  How can you watch from down there?!?
Me:  I have eyes on the top of my head...come on...get that urine off your neck, behind ears...good girl...
Mom:  [picking through the hair on the top of my head with her free hand while I squat at her feet] My goodness, girl, one, two, three, four, you've got more than one pair of eyes, up there...
Me:  I don't recall that I specified how many eyes I have up there...
Mom:  Well, you didn't get those from me, you must have gotten them from your father.
Me:  Really?!? I got the eyes in the back of my head from you, I know that from when I was little, you always used to talk about the eyes in the back of your head. I assumed I got the others from you, too.
Mom:  Nope, not from me.
[I'm on my feet now, at the sink, wetting the rinse cloths, so I reach over and teasingly sort through her hair]
Me:  No, I guess you're right. My mistake.
Mom:  Let that be a lesson.
[I hand her a wet rinse washcloth, wet my own]
First rinse, face. You can do your eye area, now, first, before rinsing anything else, so you don't get soap in your eyes. Pretend you have soap on that washcloth, scrub, scrub, scrub...
[while I direct her I'm rinsing her left leg]
...no, you're not done yet, get all your face, up to the hairline, behind your ears, scrub, scrub, scrub, ah, ah, ah, you didn't get your neck...
Mom:  Yes, I did!
Me:  That was while you were washing. You need to rinse it now, scrub, scrub scrub...
...excellent, third rinse, scrub, scrub, scrub...get the last of the soap off...
Mom:  You forgot to rinse my leg a second time.
Me:  I already did. I'm faster than you. Wanna race?
Mom:  No, you get up earlier than me.
Me:  Okay, left arm only, start with fingers, scrub, scrub, scrub, between fingers...
Mom:  [holding up left index finger, she asks with exaggerated innocence] How do I wash between this finger?
Me:  Touche. Wash between all fingers, individually, all the way down to the knuckles, scrub, scrub...
Mom:  scrub...
Me:  [smiling] Very good, Missus Hudson, you may advance to the next step, top and bottom of hand...
Mom:  scrub, scrub, scrub...
Me:  [while I'm stopped, soaping her right leg]...all the way around forearm...
Mom:  I only have two arms...
Me:  No you don't, you have four arms on each side.
Mom:  You don't have four arms.
Me:  That's because I take after my father.
[we both laugh]
All the way around the upper arm, under the arm, scrub the armpit, don't swab it, get this area right here [running my finger along the bottom of her upper arm] there you go, top of shoulder...
Mom:  I already did that!
Me:  No you didn't, I was watching, I have eyes on the sides of my head...
Mom:  Now, those you got from me.
Me:  Ah, ah, ah, left arm only, no cross contamination here...
[handing her a rinse cloth] Okay, first rinse, left arm only, start with fingers, in between all fingers individually, all the way down to the knuckles...
Mom:  You learn quickly.
Me:  I got that from my Mom...top and bottom of hand, scrub, scrub, scrub...all the way around the first of your four arms on your left side...
Mom:  Smarty!
Me:  You know what I think is funny...scrub that armpit, don't swab it, get all that urine contaminated soap off, come on, top of the shoulder, back of the shoulder...
Mom:  No telling.
Me:  Now that we know that people inherit their intelligence from their mother's side...get that area under your upper arm that you always miss...there you go, here, second rinse, left arm only...
Mom:  [primps with her free hand] Naturally.
Me:  That kind of shoots men marrying for beauty all to hell, doesn't it. And, what's the point, then, of women marrying for brains?!? We may as well marry for brawn.
Mom:  That's a good idea. Maybe I'll do that, next time.
Me:  Come on, Mom, rinse the entire arm...top of the shoulder, too...okay, here you go, wash right arm only, starting with fingers...I think you did. Dad was incredibly strong, besides being smart.
Mom:  He was, wasn't he.
Me:  [I notice Mom examining something on the side of her forearm] What's that? Looks like another bruise. What do you do in bed at night, woman?!?
Mom:  I don't know. I wish I could remember. It sure looks like I'm having fun.
Me:  It sure does...start with fingers...I mean, I wonder, what was Nature thinking, letting us slip into attraction patterns that would seem to be exactly the opposite of what 'survival of the fittest' would demand, anyway...between all fingers, Mom, come on, all the way down to the knuckles, top and bottom of hand...
Mom:  Maybe Nature doesn't care whether we survive...
Me:  I know, maybe all Nature cares about is interesting stories that don't necessarily go anyplace...all around all four of your arms, over there, don't forget your elbow, inner and outer...
Mom:  Sounds reasonable to me.
Me:  Ah, ah, ah, get your upper arm, Mom, top of shoulder, armpit...
Mom:  I did!
Me:  You got three of them, but not the fourth.
Mom:  Like I said. Smarty!
Me:  Here, first rinse, right arm. Get all that soap off, all the way down to the knuckles, all your fingers, Mom...anyway, regarding Nature...
Mom:  What's the point of a plan if you can't have a little fun along the way?
Me:  Good point. Excellent, you did that without prompting! Here, second rinse, right arm...
Mom:  I think tomorrow I'll take a bath.
Me:  Don't forget the top of your shoulder, Mom, you did good on the armpit and underarm...you know, I know you long to take a bath, I wish you could, really I do, but, you know, I think [MCS] had a good point, since you're prone to urinary tract infections, now, you shouldn't be taking baths anymore. I don't suppose you'd consider sitting on a stool and taking a shower, would you? Okay, good. Arise and face me.
Mom:  Absolutely not! No showers!
Me:  I didn't think so. Step forward a little, don't stand on your hands, Mom, stand on your feet...don't hang from the bars, it's not good for your back. Well, then, I guess we'll be doing this for the rest of your life...
Mom:  I suppose so. Well, it's better than taking a shower.
Me:  Okay, well, that's good. [stooping to see how the creases at the tops of her thighs look] Well, this looks much better, Mom. That anti-itch cream does the trick. I think we'll keep using it. It looks like you never had a problem.
Mom:  Do you realize you have four washcloths in there? Why do you need four washcloths?!?
Me:  [washing her thigh creases and pubic area with one washcloth, then switching cloths and soap and washing her front torso] Two for washing, one for you and one for me, two for drying, one for you and one for me, then, when I'm the only one washing you I trade off. It's to avoid cross contamination. It's worth it, Mom. If they every have a "Cleanest Elderly Person" contest, you'd win hands down.
Mom:  Watch your language, girl! [she's referring to my use of the word "elderly"]
Me:  Okay. Cleanest person who's been around for at least 87 years. Hows that?!?
Mom:  Better. Not much. You already did that. [referring to me rinsing her again]
Me:  One good wash, two good rinses. That's my motto, Mom. Okay, let's dry you and put on the itch cream.
Mom:  You're motto lacks something in imagination. You need a new one. Don't you mean "anti-itch"?
Me:  [laughing] Oh, yeah, wouldn't that be funny, applying itch cream to that area!?!
Mom:  Not to me!
Me:  Okay, I won't use the itch cream, then, I'll use the anti-itch cream. Turn around so I can do your back. Center yourself over your legs. Don't hang on the bars. Looks good. No interesting things back here. We're doing good.
Mom:  I prefer to be interesting.
Me:  Trust me, Mom. You don't want your back ever to be as interesting as it was before I started washing it!
Mom:  Mmmmm, that feels good. Right there. Rub right there.
Me:  Hold on, I'll rub you better during the rinse. I don't want to rub soap into your skin. Okay, there. How's that?
Mom:  Good. Good. Scratch right there. Ohhh, good. Thank you.
Me:  We aim to please, Missus Hudson. Okay, here comes the part that both you and I hate.
[I take down the baby wipes, open the box and pull one out, preparing to wipe her backside and her uro-genitary area.]
Mom:  Is that really necessary?
Me:  Well, it's working to keep your urinary tract infections down. You haven't had one in three months, now. I'm sure your urethra has snapped back from all those catheters, but I don't want to tempt fate. Believe me, Mom, I don't do this for pleasure. If someone asked me to list my hobbies, I wouldn't put, "Cleaning my mother's ass" down as one of them.
Mom:  [she snickers, then mocks offense] Gail! Shame on you! You didn't learn to talk that way from me!?!
Me:  [snickering] Nope, you're right. I learned it from Dad. Thanks, Dad! Okay, I'm going to dry you off and put lotion on your back...Okay, turn around, let's finish you off. Cornstarch first...[reaching into the box of cornstarch, bringing out a handful]...yeah, I definitely like this cream stuff better, the cornstarch doesn't become glue up there. Okay, let me get your underwear, hold on...[I leave the bathroom, get two pairs of paper underwear from the closet, one small, one large, and return]...My goodness! There's a naked old lady in the bathroom!
Mom:  [laughing] A cute naked old lady!
Me:  And her cute, clothed daughter! [stooping with underwear] Okay, lift foot, from the thigh. Okay, lift other foot, from the thigh. Okay, lift other foot, from the thigh...
[my mother snickers]
Me:  Okay, let's put pants on...
Mom:  You only need to put them on two of my legs.
Me:  So, you want to be daring today, eh? Okay, your choice. You may sit down, now...nope, don't put your watch on yet, here, put out your hand for lotion...okay...do this...[I slap my hands together a couple of times, demonstrating how she needs to distribute the lotion between her hands]...that's right...distribute it evenly, okay, take one hand like this...[I place one of my hands palm down on the top of the other]...okay, take that stuff all the way up the arm, no, no, don't rub it in yet, distribute it all the way up, that's right, okay, do this with the other arm...[I demonstrate, again, with opposite hand and arm]...good, okay, rub that stuff in, up and down your arm, all around...[I mime rubbing lotion into my arms]...come on, rub that lotion glaze into your arms, that's right, take it all the way up to your shoulder, get the back of your arm, that's good...Okay. Good. Now you may put on your watch and glasses...[I retrieve her shirt and bra from the floor at the opposite end of the bathroom and drape them over the edge of the tub]...okay, here's your shirt and your bra...remember to latch your bra in front, swing it around and stuff your things into your thing holders...
Mom:  [directing a comic smirk my way] I thought I taught you better than that!
Me:  Okay, Mom, put your breasts in your thing holders, but explain this to me, if this is a thing holder, why aren't breasts called "things"?!?
Mom:  I'm going to have to sit you down and have a talk with you, child!
Me:  Let's do that over breakfast. Okay, [as I collect towels, cloths and soiled clothes] your house coat's hanging right here, when you're done and dressed meet me out in the dinette.
Mom:  I suppose when I get out there you're going to check to see that my "things" are in my "thing holders".
[She hates that I do this but, if I don't, she ends up wearing her bra around her neck before breakfast is over.]
Me:  Only if you don't want to make a little money on the side. Want me to get the change box out this morning?
Mom:  No, not this morning. Maybe tomorrow.
Me:  Okay. I'll see you in the dinette.

"You've Got to Give a Little..." More

2004-12-12T13:00:00.002-07:00

Ever notice that during The Season of Giving it's mostly the year round primary caregivers who shift into Hyper-give Drive?
Even if the primary caregiver in a family isn't the only caregiver, the secondary caregiver relies on the primary caregiver to perform most of his hyper-giving errands. I witness this every year in the families of friends and relatives.

First Scenario: The secondary caregiver and/or those for whom the primary caregiver cares are all enlisted in holiday decorating. It becomes a family or community affair, usually involving group selection of the main decoration, lots of help sorting through and putting up companion decorations, everyone has a great time and even the primary caregiver doesn't mind providing and directing the atmosphere and food for this event. When the holiday is over the primary caregiver takes down and stows all the decorations without the morale booster or help of a family/community celebration except, maybe, for the dragging of the tree to the curb and the removal of outdoor decorations.

Second Scenario: The secondary caregiver plans one, maybe two weekend days during the season in which he 'goes holiday shopping' with a list carefully composed, usually with the help of the primary caregiver. Inevitably, the crowds and the confusion get in the way of completion of the list, the balance of which is relegated to the primary caregiver along with the dregs of the lists of all the care recipients in the family. If anyone in the family decides to make gifts or 'give of one's time', the primary caregiver is automatically enlisted to make sure raw material is scavenged and assembled and/or the Giver of One's Time is directed in order to make sure the Gift of Time is performed.

Third Scenario: A day or two is set aside for Holiday Baking. Everyone's excitement is stirred and all (except the secondary caregiver) volunteer to help. Since the primary caregiver is the most experienced baker, all prep and clean-up and direction of the helpers (in order to make sure resources aren't wasted by mistake) are performed by the primary caregiver. Most the dispersal of Holiday Treats to family, friends and neighbors, as well as the monitoring of snacking on such treats within the primary caregiver's home, is performed by the primary caregiver.

Fourth Scenario: The secondary caregiver graces the primary caregiver with the 'gift' of preparing the main dish for the holiday meal to help ease the burden of holiday preparation. The primary caregiver, of course, does most, if not all, the shopping for this course, but, "she's doing it anyway", so, the secondary caregiver assumes, it's not an added burden for the primary caregiver to perform this tiny chore in order to make it easier for the secondary caregiver to 'help' the primary caregiver. The secondary caregiver's main course is usually one that requires slight preparation (such as marinating, maybe preparing a simple sauce, certainly not stuffing) and involves cooking in a salutary atmosphere such as on the outside grill. The primary caregiver spends the entire day (and much of the previous day) in the kitchen preparing the companion courses and condiments from start to finish, setting up the eating area and performing after dinner clean-up. During dinner the efforts of the helper(s) are lavishly extolled, often most lavishly by the primary caregiver in a usually unsuccessful effort to encourage daily participation through holiday compliments. The efforts of the primary caregiver are given a habitual, taken for granted nod. While it's true that after dinner clean-up often solicits offers of help, usually, since the primary caregiver is the only one who is expert at the myriad small tasks involved in household clean-up and put away, the offered help is refused because the job is more quickly done without help which inevitably needs to be directed or has to be repeated, later, when the primary caregiver takes some time to set up her kitchen in the manner most efficient for her continued use.
Meanwhile, the secondary caregiver directs all the fun activities, like group gift opening and/or picture taking and/or family games while nudging the primary caregiver's involvement with gentle reminders directed to the kitchen/dining room, "Honey, we're ready, we're just waiting for you."

Fifth Scenario: The primary caregiver, sometime in the weeks before the holiday celebration, experiences an "ah hah" moment, usually through reading a column in the daily newspaper or monthly magazine that exhorts weary Holiday Event Directors to drop some of their plans (including meal courses) and delegate holiday chores in order to allow for time to 'enjoy the holiday yourself' (which usually translates as more time to do other people's holiday chores). On the holiday someone inevitably and poignantly expresses that the skipped or delegated event or course is 'missed' or 'just not the same'. The primary caregiver makes either a silent or vocal promise not to drop or delegate these events and chores the following year.

    Question: What makes us, as a society, think that an intensely involved primary caregiver wants to strip her gears into Hyper-give Drive for almost two months at the end of the year? Answer: The societal propaganda that the holidays are 'for the children'; the celebration of the minute category of monster caregivers who have a talent for overextending themselves and making it 'look easy'; and, the insistence that if primary caregivers dread the holiday season it's because they don't know how to handle it, thus, it's the primary caregiver who's at fault.
    We can no longer use the blighted excuse that hyper-giving should be the province of the stay-at-home parent. There aren't that many stay at home parents, anymore. Few families can afford the luxury of a stay at home parent, a phenomenon evidenced by the fact that such families are celebrated in human interest stories only because they are rare. In addition, childhood being what it is in this day and age, the stay-at-home parent is probably, most of the time, in the family car shuffling the away-from-home family members to and from their destinations and running everyone's errands. She may also be home schooling her children, thus performing yet another societal task with little support, unpaid and unsung.
    As well, our holiday season is drowning in the twin commercial concepts of hyper-giving and hyper-getting. Even those of us who swear we know what the holidays 'are about' have forgotten that the traditional winter celebration was a time of community involvement in winding down to the seasonal rest that we used to believe was the providence of winter.
    What if we decided to change the current emphasis of the holiday season in order to suit our relentlessly every-activity-in-every-season society? What if we instituted the holidays, from Thanksgiving through the New Year, as the season for minimal caregivers to concentrate on thanking, in tangible ways, our maximum caregivers? What if The Season of Thanking and Giving became The Season of Thanking and Giving To Primary Caregivers? What if children were expected to get into the act? What if the holidays became The Season of Everyone Else Besides the Primary Caregiver Making and Executing Holiday Plans; Planning and Preparing Gift Giving; Baking the Holiday Foods; Decorating for the Holidays; Making Sure Everything Is Perfect Just the Way the Primary Caregiver Likes It; Passing the Infants and Young Children, the Infirm and the Elderly Around so the Head Caregiver Has an Extended Chance, Once a Year, to Clear Her Head?
    What do you suppose would happen? Is it possible that, after almost two months of Spreading the Caregiving Around and Making Sure the Primary Caregiver Receives as Much Support as She Has Given Throughout the Year that, within a couple of years, we'd transform ourselves into a society in which everyone learned not only how to give care in every season but to notice and participate, all the time, in the tasks of caregiving? Then what? Then, maybe everyone would look forward to the holidays, enjoy them, and be refreshed and ready for every New Year.

I Can't Get It for You Wholesale

2004-11-26T17:28:00.002-07:00

It starts with the fear and dejection that dictated part of a November 21, 2004, post of mine at The Mom & Me Journals dot Net. My only regular commenter, brainhell (and, probably one of my few regular readers), responded with indignant sympathy that included the following [SIC]:

Let me say this, too (excuse the all caps): YOU KNOW HOW MUCH IT WOULD TAKE TO PAY S0MEONE CONSCIENTIOUS TO DO WHAT YOU ARE DOING? YOUR SIBLINGS OUGHT TO BE PAYING YOU RIGHT NOW, ON A MONTH-TO-MONTH BAIS, AND YOU OUGHT TO BE SITTING ON A LARGE BANK ACCOUNT RIGHT NOW BECAUSE OF IT.

This part of his comment got me to thinking...what, exactly, can one purchase, with money, in the way of caregiving and who can buy it?
Bluntly, the only way one can buy the kind of care I give to my mother is to be rich enough to afford a live-in nanny and/or a personal assistant. Insurance doesn't cover this type of care. It's only covered by success. Typically, too, this type of care isn't handled by one person, although it may be managed by one. At its best it includes:

a nanny type of employee who is a CNA;
a personal assistant who works closely with the nanny, manages the business of the charge's life and directs the efforts of the following:

a lawyer on retainer;
a financial advisor;
a tax accountant;
a medical advocate with the willingness to include alternative medical care in her/his purview;
a personal chef who works closely with medical professionals and the nanny;
a sanitary engineer who is familiar with the ins and outs of cleanliness as related to health requirements of the charge and works closely with medical professionals and the nanny;
a physical therapist who works closely with the nanny and medical professionals;
a pet sitter;
a driver skilled in handling transport of the handicapped and who works closely with the personal assistant;
a personal shopper who works closely with all the above;
a social secretary who works closely with the personal assistant and the physical therapist;
a groundskeeper;
reliable substitutes for any and all of the positions above to allow for personal and vacation time.

    Some of the above employees would be part time: The social director, for instance, and possibly the groundskeeper. Some of them would be paid for services rendered: The financial advisor, the attorney, the physical therapist and the medical advocate, in particular. Some would live in: The nanny, the personal assistant, possibly the driver. Some would be hourly and serve on a schedule: The personal chef, personal shopper and pet sitter. All, whether salaried or hourly wage earners, would have taxes withheld, retirement programs, health insurance, overages for work above and beyond the call of duty and/or overtime, paid vacations, paid sick leave and a satisfactory amount of daily, let alone weekly and monthly, personal time in recognition that they all have personal lives. Intangible qualities such as personal interest in the charge, ability and willingness to bond with the charge, etc., would be recognized with some form of payment, whether it be in gifts, bonuses, privileges, extra paid time off, etc. There would also be a host of out-sourced services including but not limited to hair and manicure services.
    All these employees and services are catalogued because, in one way or another, I do their jobs for my mother or these employees are ones we currently retain: The financial advisor, the lawyer (we're actually between lawyers, right now) and the tax accountant. In some cases I perform as well as or better than a professional; The medical advocate, the pet sitter and the personal chef. In some cases I perform their duties less well: The personal shopper, the groundskeeper, the nanny, the attorney and the tax accountant. In two cases it's debatable whether I do a better job, but I certainly do as good a job both in actual performance and decision making: Financial advisor and physical therapist. In every case, if I perform less well than the professional it is because I am also doing at least one other professional's job or I do not have the education, contacts and experience the professional would be expected to have. In two cases, because of my relationship with my mother, I am clearly a better choice than having a professional: The personal assistant and the nanny. In all cases I add something to the performance of duties by dint of my relationship with my mother that could not be duplicated by a professional, no matter how long and how closely they worked with my mother.
    At this point I imagine that any mothers and other related caregivers reading this are nodding and congratulating themselves on how accomplished and necessary they are. If you are one of these, remember that you are not being paid to perform these duties. It is very likely that your family could not afford to fairly pay someone to do everything you do. There are people in much higher income brackets, though, who have such staffs caring for relatives in need or for themselves. Some of their employees are extremely well paid. Some are adequately paid. Some are underpaid. Altogether, though, the employer is paying hundreds of thousands to millions to have these duties performed.
    The rest of us rely on insurance, fee-for-service professionals and the unpaid labor of relatives to care for our loved ones.
    I can tell you from experience, even excellent nursing home insurance does not pay for even a trifle of the services mentioned above. I discovered quite abruptly this summer that even in a "good" nursing home, no one gets paid enough to, for instance, make sure that your loved one's diapers are changed in a timely manner; do whatever it takes to make sure your loved one is well hydrated; make sure the condition of your loved one's skin doesn't dry to the flaking and cracking stage; not take "no" for an answer; make sure your loved one is eating what is put in front of her; notice inconsistencies in medical observations and orders, question them and follow up on them; pay personal attention to significant social niceties such as light conversation. This is not to say that I did not notice the compassion with which many of the CNAs and nurses performed. When my mother was released, though, she and I were both pleased that her level of care would immediately improve by leaps and bounds.
    As some of you may have read in a much earlier post, I discovered this year that it is impossible for us quotidian folk to hire someone to, for instance, awaken your urine soaked loved one, get them safely to the bathroom, strip the bed and deposit the sheets in the washing machine, spray the bed down, then leave. It is very hard, now-a-days, to find someone who will take care, in the home, of a loved one who smokes. It is hard to find anyone who will pay as much attention to safety and camaraderie as a loved one will. And, as MPS probably accurately posited when I vented my disappointment at our two experiences of leaving my mother with a "sitter", for most people who work and take care of a loved one (whether it be under normal parenting circumstances or the special circumstances of caring for an Ancient One or someone who is infirm), most loved ones' level of care is nowhere near as high as mine for my mother, for good reason: I am able to do it 24 hours a day, 7 days a week because my mother's level of retirement income allows me not to have to work to keep us afloat (sometimes provisionally, but afloat, none the less). Thus, those who not only care for loved ones but work to survive have lower expectations than mine for the performance of substitutes. These people are in the majority so their expectations affect the Caregiving Industry much more than mine.
    Our brand of capitalism operates from a spine of unpaid, low paid, outrageously undercompensated labor which includes the labor of parents and related caregivers. This condition exists within a society that stubbornly insists on "rugged individualism" and "personal responsibility" to the exclusion of recognition of the importance of micro and macro communities to survival. Under these conditions it's no surprise that so much of caregiving goes unrecognized and uncompensated except through useless and, eventually to the caregiver, irritating sentiment. The question of whether and how such care should be compensated through wills, trusts, divorce agreements and current living circumstances exists on such emotionally loaded ground that, often, any solution can adversely affect family bonds for generations. It is no wonder that a related caregiver has to summon much courage and bravery to consider negotiating such compensation.
    The solutions we are ultimately offered are amazingly short-sighted and absolutely off the mark. A few days ago I read an editorial in a weekly email newsletter devoted to caregiving that reminded everyone not yet in need of care to "have a plan" for their own elder care. My mother had a plan, one for which she prepared and would have been approved by the generator of the newsletter as well as most everyone who has never been involved in the care of an Ancient One. It included the determination to voluntarily submit to, first, assisted living care then, eventually, if necessary, nursing home care. It was backed with very good medical and long term care insurance and included yearly dues paid to The Eastern Star in the hopes that she and her sister would live out their Ancient Years together in an Eastern Star Home. It was stringently based on her refusal to become any of her children's wards, thus, in her mind, "becoming a burden". What happened to the plan? Life happened. As my mother aged, I think, and became aware of exactly how her plan worked in the lives of some of her peers, then, when her sister died at an unexpectedly young age, care within the bosom of family became not only more appealing but more important from both emotional and physical standpoints. As well, I don't think she ever could have predicted that she would give birth to a daughter who walked on the fringes of the wild side, thus would be available, emotionally and circumstantially, to accompany her with friendship, deep, assured love and intense attention through her Ancient Years. When she realized that she, indeed, had this possible resource, she did what any one of us would do: She considered all her options, changed her plan and solicited me in the hope that I'd agree to be part of her new plan. I did.
    Early in our partnership in her life we considered and consulted on the possibility of me being named my mother's employee. As it turned out, even in the best of financial years this plan would have bankrupted her. Once it became apparent that my mother's life required that I no longer work except in the service of her life, the best financial arrangement was to declare me her dependent (even as she is now so dependent on me that we will probably have me declared her guardian) so that our income would benefit from this deduction. Medical insurance for me would be more expensive than it would be worth under these circumstances, especially since my health requires little medical care. If we'd established a retirement plan for me the stock market crash would have ravaged it, both through devaluation and reappropriating the money to keep our life secure. As far as siblings kicking in to pay for substitutes, well, it isn't necessary. Any institutional care she might need is covered by insurance. If I find trustworthy substitutes to allow me a break that isn't shot through with concern for how well my mother is being cared, I'm sure we have the money to pay for them. Considering everything, my mother is still better off with me when I'm in "I need a break" mode than she would be with a hired sitter. Yet, despite the horrible societal conditions under which I care for my mother, I truly would not have it any other way precisely because she is my mother and because of the peculiar, close relationship she and I have.
    How much would it cost to hire me? You can't hire someone like me. You luck into "me's"; sometimes for money (and, you have to have a great deal of money in order to put yourself in the position that opens you up to such luck), most often because of love. It's the love, in this society, that engenders the complications.

There is, as it turns out, someone for whom I am "essaying situations"...

2004-09-17T17:43:00.000-07:00

...which is exactly what I did today with the new extemporaneous essay immediately below this post.
    This person checks in from a central U.S. university, was an enthusiastic visitor the day the first essay went up. This person wasn't the only person who visited so regularly one could use the term "hungrily", during the first week or so after this site's debut. The other one dropped out, was with a generic ISP, not even named by region.
    The person I'm noticing, though having cut back visits to once a day in my mid-afternoon, in a curious way inspires me to think in "essay style" and get something else out before I lose this person's audience, and interest. One of the reasons this person's visits easily became my muse is that, as far as I can tell, this person, so far, has visited only one page of my spill of pages onto the web. On this I may be wrong, I haven't checked every single page on every single site, but, this person is visiting few enough to keep me focused on this particular method, this extemporaneous essay method, of expressing the insights I receive as I continue with my mother. I was, in fact, a touch disappointed to notice, today after I published the essay below, that this person's visit had already occurred and my essay wouldn't be read at this central U.S. university until tomorrow evening, probably, or perhaps even later, considering that it will be a weekend.
    It's funny, I don't care if the interest is in the subject matter, from a critical perspective (either positive or negative), I don't care if there is some remote, bot-type research reason for the visit. I just thought I'd mention that these visits have become my muse for this section of my web effort on behalf of my mother's and my journey together.
    I like muses and relate well with them. Thank you, mysterious muse.

Feeling the Burn, Savoring the Spice

2004-09-17T17:27:00.001-07:00

    I think my mother may have experienced an episode of work-out drunkenness, today.
    While I was running my one outside-the-house errand and pleasurably contemplating my mother's exercise session and the almost immediate effect it had on her I realized that she must have gotten a little drunk on endorphins.
    Here's why I think this may have happened. I think it was an endorphin surge that led her to suddenly decide that today was the day for her to recommence getting the mail, something she always used to do whether or not she could do anything else.
    After thumbing through the mail she dashed it on her dinner stand next to her rocking chair disappointedly.
    "What's the matter?" I asked.
    "Wasn't what I was expecting," she harrumphed.
    That's odd, I didn't realize she was expecting something. "What do you mean?"
    "None of it's interesting."
    I laughed. "Oh, I get it. You're looking for personal letters! Well, considering that you haven't written any for a long time and you're one of the few letter writers in the family, alive or dead, maybe it's time. Now, can you see some sense in getting some stamping stuff and making some cards for note writing?"
    "Was that why [MCS] wanted me to do that?"
    "Yes. She thought you'd be more prone to write if you made the cards yourself."
    "Hmmm...good idea. I'll have to consider that."
    So, I'll keep it on her mind.
    Then, she decided she was hungry pre-standard-lunch-time and I suggested and made for her popcorn and V-8 juice. When I scolded her for not drinking her V-8 juice she glared at me and said, "I've drunk all I need."
    "Oh, ho, ho, Mrs. Hudson! I see! Well, then, if that's true, let me see your legs!"
    She turned coy. "I charge for that, you know."
    "O.K. Here's my admission. One empty glass of V-8 juice, courtesy of yours truly. I'll show you mine, you show me yours."
    She smiled an acknowledgement to the challenge, picked up her glass and swilled her juice. Afterward she said, "You know, I like V-8 juice."
    I know.
    Finally, as she was getting ready for her nap, aside from her usual surprised expression of concern over having to wear three pairs of paper underwear when she lays down, she decided that, today, it wasn't necessary. Period. End of discussion.
    This time, knowing we were approaching a sensitive area of personal dignity, I changed my response tone. I pleaded with her. I told her that she may be right, maybe today they aren't necessary, but do they bother her sleep?
    "Goodness, no!" Ludicrous suggestion.
    Well then, I begged, would she do this for me? If, indeed, it plays out that her bladder has decided to stay awake when she sleeps (she mentioned, here, that she liked the way I put that), then we'll stop with the guardian underwear, thank the gods, they're not cheap and not tax deductible. "But, let's just wait and see, okay? So I know I don't have to do two loads of wash today? Please, for me?"
    She granted me my wish.
    So, it seems, endorphins work the same way in the Ancient as they do in the rest of us. Except that, the less you have to lose, the less likely you are to exercise caution under The Influence of Endorph.
    Good. This is the woman who encouraged me to steal a county sign to which I'd taken a fancy in a remote location in Utah years ago, even insisted on accompanying me and helping me stow it. This is the woman who, when I lived in Pinetop and wanted very much to respect the area, had her heart set on collecting cattails, which was illegal, in a marsh not far from my cabin. I apprised her of the illegality...this is the woman who told me she'd go without me, then, so I went, reluctantly, and we had the best time goofing on each other about spotting Forest Marshals and got some wonderful specimens. She cocks her eyebrows and grins in the face of danger, the same way she was cocking her head and grinning at me, today. Most people would not suspect this of her but, upon hearing it, would probably believe it. She's always kept a low profile. For all practical purposes, she has bowed her back, over the years of her life, with her modest presentation. But, if you lean over a bit and look her in the eye after an exercise session, well, you begin to wonder if her back hasn't bowed because of her incessant turning aside to conjure out of view of curious eyes.
    Endorphins become her, especially in her Ancient years.

"Just because you're old..."

2004-09-12T09:56:00.000-07:00

"...doesn't give you the right to be inconsiderate of others, Mother, Mrs. Hudson [when I add the 'Mrs. Hudson' part it is usually delivered in comic sneer]. I eat cottage cheese, too, you know. And mustard. Remember the mustard we had to throw away last week because you decided to eat it out of the jar with a spoon?"
    "It didn't hurt my blood sugar."
    That's true. I suspect it may have helped it. That evening her blood sugar was normal. We don't buy many condiments with sugar in them and this mustard was stone ground, with fiber. And mustard oil, well, we all know its cathartic effects. "Point taken. Now, take my point, Mom. I have confidence in you. You can remember that this refrigerator is a shared refrigerator, that, aside from you, I eat out of it, our friends and relatives eat out of it. I know, on everyone's behalf, you are capable of remembering, and caring about something you drilled into us from the time we were able to open the refrigerator and cupboards independently, 'Don't eat out of the carton!'"
    Not yet contrite but getting there. "I know, I know."
    "See? This isn't new information. I live here, too, Mom, and, occasionally, others eat here. Just because you're old...", here it comes, "doesn't give you the right to assume that the household revolves around you."
    Still squirming, "I suppose not."
    A friend of mine asked me, maybe four years ago, if my mother was being unusually and unfairly selfish as she perceived her mother in her last years, living with her and her husband. I was shocked at the implication, sure that my mother would never exhibit this kind of self-absorption. I still can't say that she absolutely has, as she is not always inner-bound.
    Sometimes, thogh, I can see that she's just not thinking. It occurs to me that it isn't dementia, it's laziness, because it involves long term memory of habits and a social attunement she has not lost. As well, I am very honest with my mother, what would sometimes be considered, I'm sure my neighbors would agree (I don't have an indoor voice) roughly honest with her. I monitor her before action, and sometimes I've been wrong. I acknowledge when I have erred and apologize. Lots of times, though, I've been right and the correction has kicked in.
    I think that, for as long as possible, it is important for Ancient Ones to be prodded to remember that they exist as part of a household that revolves around everyone in the household. Social awareness is imperative in the at-home caregiving situation. It is also, I sense, therapeutic. Beyond this, I think that the household comes to revolve around the Ancient One in order to keep her feeling safe. My mother continues to feel safe, within our home and within my care.
    My mother is still of competence in the area of social awareness, enough so that I can expect certain behaviors of her and scold her when her public courtesy slips. In fact, in the wild, so to speak, her manners are impeccable and, while they don't put mine to shame, they remind me immediately to keep my head up and be aware of others. She is never inordinately selfish in public. She, as well, possesses a critical stare when I cross certain boundaries of public etiquette, which I've been known to do.
    Still, I can see where I must remain flexible in this area. With the feeling of safety, my mother is more able to relax in her Ancienthood and occasionally becomes a little queenish. Which, of course, encourages further queenishness. She makes a very cute queen, though, irresistible.
    In ways which I am about to explore and which may not be as connected as I think they are, this is as good a place as any to insert the story of the strange woman at the grocery. This story illustrates, well, hmmm...I guess we'll see.
    After a long walkering at Costco in which I'd tried not to walker-coach my mother, her back was "giving [her] fits" and we still needed to make a short stop at the grocery. I promised her, if she'd walkered just inside the store with me and endured some drill sergeant coaching, I'd let her sit out the visit and "pick her up" after I'd purchased the few items. She agreed.
    The parking lot, as usual, was not busy. As well, this store is known for courteous traffic; lots of senior citizens visit. We began walkering toward the storefront, me keeping vocal time with her in a marching cadence, encouraging her to "step up to the plate, back straight, shoulders back, eyes forward," all the way to the bench just inside the entrance. As she approached the bench I took her through the pivot turn sequence in which she pulls her walker toward her in order to manage it well as she sits down so it doesn't slip out from underneath her.
    As she was seating herself to the tune of my full voiced, drill sergeant encouragement, I noticed a woman, probably in her early 30's, turned toward us, glaring at me. I understood immediately what she was attempting to communicate. Once my mother was settled and I was facing the social intruder as I selected a cart, I stared back at her and told her, "It's a very hard skill to learn."
    Her expression sharpened.
    As I turned into the store I thought, well, she's never taken care of an Ancient One.
    As I continued through the store, I became angry that she should presume to know anything about the limits of behavior between caregiver to an Ancient One and care recipient. On my way from one end of the store to the other I noticed she was still sitting up front, glaring at me every time I passed her. I rerouted myself. "Do you take care of an Ancient One?" I asked. Whoa, I thought, that's the first time I've used that phrase in public.
    She quickly oriented herself to the terminology. "No. I am a mother. I have a mother."
    "Have you ever required intense care?"
    She looked at me, affronted, remaining silent.
    "Have you ever needed physical therapy?!?"
    She recovered her glare.
    I didn't care. "Until you've done either, think before you judge."
    Before my next pass she'd left her staging area. I wasn't sure I'd been completely fair with her but I understood where she was coming from and I understood that she needed to be corrected.
    Sometimes, people need to be coached. At others, people need to be scolded. This applies to everyone, Ancient Ones included.
    If you let them, I think, family roles can become flexible and versatile, allowing correction when possible and safety when necessary. In order to allow this, I believe it is imperative to think of Ancient Ones as members of a family with obligations to the unit as long as they give indications that this level of involvement can be realistically expected.

    Once again, last night, it was a jar of raspberry jam. By the time I entered the kitchen she'd put the jar in the refrigerator, where it's never kept. There were also signs by the toaster that she'd used the jam on toasted, buttered bread.
    I quizzed her. "Did you eat out of the jar?"
    She looked sugar dazed, a dead give-away. "Which jar?"
    "The jelly jar. Did you eat out of the jar?"
    She mocked offense. "No. I ate it on toast."
    I zipped out the glucose monitor and set her up to be tested. "Okay. I believe you. You made a mess at the toaster."
    "I don't believe I've used that toaster, before."
    "You did when we first moved here but it's on its last legs, now. It's a little touchy."
    "It almost burned my toast."
    "Well, be careful. Thanks for not eating out of the jelly jar, Mom. I'm usually the only one who eats jelly, now."
    "Yes. I've noticed. I've been meaning to ask you about that."
    I explained that I'm trying to control her blood sugar through diet. "Do you feel deprived?!?"
    "Oh, goodness no!"
    "And you've put on weight, some of it muscle weight, I think. That's good. But, you know, thanks for using utensils."
    "I licked the spoon. The jelly spoon."
    "I'm sure you did. Before or..." no, I decided, I didn't want to know.
    "What germs could I have that you don't have?!?"
    Point taken. Silently. "Don't eat out of the carton, Okay?!?"
    "I didn't. And I won't."
    "Neither will I..."...just because I'm not so old.

Water Whichery

2004-09-06T23:32:00.002-07:00

    "Wouldn't it be great if there was such a thing as a manageable portable saline drip IV for old people, as easy to use as portable oxygen, so you wouldn't have to constantly worry about Mom's hydration level?" That's MFS's comment, made well over a year ago when I was moaning over the phone about the trials and tribulations of keeping our mother adequately hydrated. I agreed with her, yes, it would be better than great. It would be a relief.
    I became aware of hydration problems with my mother, and the elderly, dramatically. Before September of 2002 I was barely aware of how much fluid she consumed, or, better expressed, how much she didn't consume. During the late summer of that year her energy level dropped to almost nothing. She spent most of her time in bed, despite the fact that we were regularly and frequently entertaining family visitors. We were in Prescott at the time. I threatened her repeatedly with canceling all visitors and taking her down to her PCP, but she sturdily declined and, well, it seemed as though there was always another visitor waiting in the wings and that their visits were at least as important to my mother as a doctor visit, probably more so. I made an appointment with her PCP to take place after the last family visitor. A week before the appointment my mother's feet began to swell, unheard of for her previous to this. We headed down on an emergency appointment to see her PCP. He took blood and immediately put her on Prednizone and furosemide to relieve the swelling, under the assumption that not only was fluid shifting unnaturally but that she was severely over hydrated. While the fluid shift did apply to her she was, in fact, dehydrated. Within less than 24 hours the combination of the medication and her dehydration caused her blood pressure to crash. She was whisked to the hospital under the medical assumption that she was suffering an episode of that ever mysterious, ever handy diagnosis, TIA. The non-alternative medical community has never admitted that she suffered a blood pressure crash due to radical dehydration. I learned this from MPS and a friend of mine, both of whom were kidney dialysis techs and recognized, immediately, from my description of the event, what had actually happened.
    We'd both been scolded about my mother's apparently permanent dehydrated state in the fall of 2000 when we had her first appointment with her current clinic. That PCP, a specialist in gerontology who has since retired, pointed out that adequate hydration should plump my mother's skin in exactly the same way mine plumps. "All those wrinkles you have on your arms and legs?" he accused. "Those aren't from advanced age, those are from dehydration. Your skin should be as smooth as your daughter's, as smooth as mine. Drink more liquids! And you," wagged an accusatory finger at me, "keep after her! There's no excuse for this!"
    I took him seriously but modified his observation. My mother started the typical elderly drying and wrinkling of the skin very early. I had a history with her and I knew that she couldn't possibly have been running dehydrated for what, then, would have been about 30 years. I began monitoring her liquid intake, though, and realized that she drank very little, not much more than sipping from a constantly refilled cup of coffee. I got on her case and she drank a little more. Her health was robust, though, despite some minor problems which were being addressed. Her energy level was high. Her ability to recuperate from health problems was superior. At that time, as well, she still had the remnants of a sense of thirst and it was not uncommon, a couple of times a day, for her to fill a glass of water from the tap and drink it down in one fell swoop. Within a couple of weeks she and I both forgot about the dehydration issue.
    She's older, now. She's lost more of what little sense of thirst she had and, with it, her habit of sipping anything, let alone coffee, throughout the day. I noticed all this after the blood pressure crash. I've been her frantic fluid manager since.
    Dehydration is such a difficult issue that even physicians can't come to terms with it. The guidelines her former PCP used were respected in their time. Now the guidelines are different, which I found out, much to my surprise, when sometime between June 8th and August 1st of this year I accidentally and dangerously over hydrated her. I'd been judging how much liquid she needed by the tenting of her skin and how severely the folds of skin around the front of her calves hung. I tried to take into consideration that she's lost a good 30 pounds since August of last year and her skin, not being as elastic as it was when she was in her prime, would, of course, appear more ragged than a year ago. But, my calculations were faulty. As a result, throughout the last several months I'd established a habit to which I referred as "water torture": Harassing her into drinking lots of liquid all day long, as, according to the guidelines of the day, she never, ever looked adequately hydrated. For the most part I did not over hydrate her. However, finally, I did. When this was brought to my attention by the neurologist team who tended her during her stay in the hospital early this August, I was aghast. They gave me completely revised guidelines regarding the appearance of tenting in the elderly which are based on the fact that medicine now recognizes this as an inadequate measurement, considering that the elderly typically have inelastic skin. I was even visited by two members of the hospital administration because I had complained about the hospital dehydrating her in early June during which she was on a 24 hour saline drip. I was lectured about how my guidelines were way off the [new] chart.
    The final verdict was, "Let her drink when she's thirsty." Herein lies the problem. She's rarely thirsty, even when she's severely dehydrated.
    Thirst is a curious sense. I've thought about why Ancient Ones lose their sense of thirst and the physical discomfort that accompanies dehydration of a person in her prime. It makes sense to me that this is the way of Nature. As beings dependent on water age and become less capable of independent survival (or, in the case of social species, need more social resources in order to survive than a colony can safely provide), Nature probably provides for an easy death by diminishing several of the senses linked to replenishment including hunger, suffocation and thirst. Nature is known for her ability to turn pain triggers off when relief of that pain by treating the cause is beside the point. It is certainly common for the terminally ill to decide to euthanize themselves by refusing nutrition and hydration. It has been documented that euthanistic fasting and dehydration do not cause discomfort. Nature, though, is not infallible. My mother has, indeed, lost most of her sense of thirst for water but she has lost none of her thirst for life. She may not grasp the glass, but she grasps time, moment by moment, hand over hand, greedy to live one more day. This is one of the components that makes the hydration issue ticklish for a dedicated caregiver.
    There is, as well, the added problem with which medicine has not come to terms: What comprises adequate hydration in the elderly. A good example is that my mother was put on fluid restriction during her early August hospital stay in order to raise her sodium level. Very low sodium levels can cause neurological problems that mimic stroking and a host of other neurological disorders, a very competent neurologist explained to me. The evidence underlined this bit of knowledge. Within 24 hours her sodium level had returned to normal and the collapse of her right side reversed itself rapidly thereafter. Aside from being very weak and needing intensive short term therapy in a skilled nursing facility, some of her strength and many of the skills she'd temporarily lost, such as her ability to hold eating utensils and her ability to use her right leg in walking, all of which led me to believe she was mini-stroking, reversed themselves almost immediately. The other debilities reversed themselves in short order. The hospital kept her on fluid restriction (2000 ccs, approximately 2 quarts, most of which she can shed overnight without effort) for four days and nights. In addition, they passed the restriction on to the SNF. The result was that, by the weekend my mother was so constipated that, in order to cleanse her, the SNF administered the laxative dose of Phillip's Milk of Magnesia while continuing to keep her on fluid restriction. Over night they had an entire day of accelerating mess on their hands. At this point they decided she was, indeed, dehydrated, took her off fluid restriction and told her she could drink as much as she wanted. By now you know how dangerous that direction is. She rarely wanted to drink anything. I warned both staff shifts that leaving it at this was not going to hydrate her. They didn't believe me and, of course, I wasn't able to get enough fluid in her when I visited to take the edge of her dehydration. Finally, I wrote a letter to the medical director, also my mother's assigned physician at the SNF, and the staff, insisted that it be put in the chart, part of which addressed the fact that if they wanted my mother to drink liquids they were going to have to continually check on her and hang out in her room to make sure she drank them. Luckily, they did.
    I think that a great deal of this confusion over how much water one "should" drink is firmly rooted in U.S. society in particular and certain other western societies similar to ours. It has never made sense to me that one should drink water continually, even if a healthy body flushes the excess. I've followed these instructions when at my wit's end with my mother, but it's never made sense. Included in that flush are, yes, what we like to refer to and shudder over as "toxins", but the body is not discriminating and willingly flushes lots of minerals and nutrients that we need, as well. Some people are what I refer to as "water babies". I'm one. I've always loved drinking water, not just the taste of it but the feel of it settling into my cells. I take after my father in this respect. My mother, though, is the opposite. If she's going to take in water she'd rather consume it disguised in food or mixed with a flavor, usually coffee or a citrus juice and even then in moderation. Some years ago I read a book whose title attracted my eye from the "new arrivals" shelf of a local library, Mutant Message Down Under. Although much of the book was forgettable, it contained a passing criticism of "Americans" that I've retained: We are addicted to drinking fluids, primarily water, and consume far more than is necessary. When I think about my problem of hydrating my mother, I often think of this. On a daily basis I have a devil of a time determining how much hydration she needs. So does the non-alternative medical community. I think of species who get almost all their water from their food. I wonder if we aren't more closely related to those species than we are to the burgeoning water industry.
    And, now, it is becoming politically correct to take note of our elders in society. Both lawyers and the government, in the form of Adult Protective Services Agencies, are flooding television with paid and service advertisements counseling the zoned in watcher that dehydration is not only one of the prime offenses committed by care facilities and caregivers against the elderly, it is inexcusable.
    No, it's not inexcusable. I know from personal experience that it is more than easy to accidentally over or under hydrate a beloved Ancient One. It is inevitable that this will happen at some point in one's caregiving career, whether that career is vocational or avocational. The marketing director of the SNF in which my mother was recently 'theraputed' told me that these ads make her mad. I don't blame her. They scare me. Factor in my mother's lack of thirst, my frenzied and confusingly informed efforts to determine whether or not to admonish her to drink yet another glass of fluid, add a liberal dash of "old bladder" incontinence for which she is not a candidate for a surgery that often does not work anyway, and on any given day the water cops could walk into our home when I am on the wrong end of the hydration battle and I could be in water too deep or too shallow for their equally confusingly informed sensibilities. I am aware, at almost every moment of every day, that I could be accused of neglect based simply on one person's opinion in the myriad of the many conflicting opinions that exist on the issue of hydration and the elderly.
    The interesting aspect of all this is that, since I've begun to use the "new" guidelines, as well as noticing that, if nothing else is affecting my mother's blood pressure I can use that as a hydration indicator as well (with circumspection, of course), we are using fewer Depends than previously. Although she still sheds water at night and I am still washing her bedding daily, it's been weeks since I've had to wash her bedding in the afternoon after a nap and it is a rare occurrence, now, that her nightly water shed reaches her pillow. As well, although I still have to remind her to drink some liquid during the day, especially since her mind, unfortunately, did not consign the directive, "Let her drink only when she's thirsty", to the chasm of her faulty short term memory, I am not at her constantly anymore and am much more relaxed about giving her body an entire day to hydrate itself rather than insisting that she be hydrated within a few hours after awakening. She is happier, I am less stressed, and I expect our electricity bill to be lower next month. I owe all of this to the non-alternative medical community's rethinking the water issue over the last few years, although it's been hell waiting for them to do so.
    Where do I stand on the portable IV idea now? I'd like, first, to see lots more research done on the issue of hydration and the elderly, covering such issues as lack of thirst and its relation to what may be lack of need. I'd like to see both the non-alternative and the alternative medical communities reevaluate water health policy in light of the possibility that, in this country in particular, we've been freaking over water consumption for the last couple of decades and we need to stop. Ultimately, I'd like someone to invent a gadget, similar to the new fanny pack oxygen concentrators, that is truly portable, takes frequent, non-invasive sensor readings of a person's hydration level, say, once very half hour or so, then noiselessly, with the aid of a constantly renewable solar cell battery, concentrates water from hydrogen and oxygen in the atmosphere, painlessly and unobtrusively delivering it to the wearer when needed. Simply put, I want a Star Trek device for my mother, and for me, should I live long enough to need it. And, I want it covered by a health care industry that leaves out no one.

What if I told you...

2004-08-30T11:00:00.001-07:00

=> ...that when making decisions as caregiver to an Ancient One, any kind of decisions, your most important factor should be your Ancient One's spirit and your least important factor should be your Ancient One's age?

Your Ancient One's will, character, personality and desire should follow, as factors, close behind her spirit. All other determinants, such as physical health and strength, mental acuity and turn, should be sorted according to their states at the time of the need for a decision.

=> ...that your most important act as caregiver to an Ancient One is to enjoy your Ancient One's companionship?

If you do not enjoy, in some binding way, the companionship of your Ancient One, whether that enjoyment be as simple as liking your Ancient One for who she is, enjoying disputes with your Ancient One (provided she enjoys disputing you, as well, and the disputes do not become continually abusive from either side) or the mutual appreciation of a belief system, personal history or some other fundamental aspect of life, you probably have no business attempting to care for your Ancient One, and your Ancient One would probably be better off with someone else caring for her.

=> ...that no one, not even you, has any really valuable advice to offer an Ancient One?

No one gets through Ancienthood alive, thus, mentoring an Ancient One is impossible for anyone.

Taking care of an Ancient One is not at all like an adult taking care of a child. It is, truly, a child taking care of an adult. If you remember this you will experience less frustration when your Ancient One is determined to live her life her way, despite your "better" judgment and best advice.

The only decent counsel available to an Ancient One is peer counseling. It must, though, be kept in mind that Ancient Ones counseling Ancient Ones is akin to teenagers counseling teenagers and all other classes of counsel devolve from this. When you consider your attempts at direction of your Ancient One's life in this light your life will be much easier.

As I overheard my maternal grandfather (who lived vigorously well into his 90s) say to a relative, "How would you know? You haven't been where I've been and, if you have, you haven't been there nearly as long as me." Regardless of how much "parenting" you think you do with your Ancient One, she knows, absolutely, that, if you are not her peer, you are the child and she is the adult, even if you think role reversal is taking place. She knows better. Respect her knowledge. You have a long way to go before you are able to see relationships, and life, from her perspective.

=> ...that it is better to consider the unalterable changes in your Ancient One's mentality as simply this, changes, rather than declines?

This will allow you to savor the advantages and gifts of loss of short term memory, the pleasures of the sudden sharp intrusion of long term memory returning as present reality, the curious mysteries contained in hallucinations and the informative statements about yourself and others contained in "mistaken identity".

=> ...that being a companion to an Ancient One requires the ability to live in and savor the moment, far beyond the requirements of caring for anyone in any other stage of life?

Work hard at not letting the moment slip by you in favor of your desires and plans for or expectations of your Ancient One. While other Ages of Humanity are often highlighted in the glow of who one is to become, and, as well, your Ancient One is still "becoming", try to keep in mind that "becoming", for an Ancient One, is completely different than, say, intending to become a college graduate with a PhD or the most compassionate person alive. While it is true that these goals are sometimes pursued by Ancient Ones, the most important thing about being an Ancient One is that there is, literally, only one other place to go and you know absolutely nothing about that place, or what it is like to be at its door.

In the immortal words of Alan Watts, "Be Here Now." In the immortal words of Huey Lewis, "This Is It."

=> ...that if you acknowledge your behavior and "own it", your Ancient One is more likely to accept your suggestions, determinations, the stuff of your life separate from hers, even your mistakes, even and especially when your Ancient One disagrees with you?

Always be yourself, even and especially in your changes. Trust your Ancient One to be able to accept who you are. You don't have to be unusually nice, you don't have to put on an act, you don't have to be an expert. I discovered that my mother is much more likely, now, to accept the peculiarities of my character and my likes and dislikes than she's ever been. This is true to such an extent that I sometimes wonder if I was being unfair, in years past when I didn't live with her and purposely left out certain opinions and circumstances I was experiencing in order to keep from upsetting her. The unadorned face is always less upsetting than the mask. This no less true for Ancient Ones than it is for anyone else. It is, in fact, far less easy to upset an Ancient One than it is to upset anyone in any other stage of life.

Be forewarned, as well, even if your Ancient One is deep in a mental arena of which you have no experience and that seems remote from "normal", from where you are, she has the acute ability to determine and express her concern when something isn't quite right.

=> ...that you should never underestimate your Ancient One's ability to develop, nor should you overestimate your Ancient One's apparent "decline"?

This is a hard one. It becomes second nature for caregivers to take up the slack with an Ancient One, so much so that often a caregiver will take up slack when it is neither necessary nor appreciated.

Surprises are fun but what is surprising to you in your Ancient One's behavior is likely a matter of course to your Ancient One. While she may find your surprise amusing, she will not consider it complimentary and will, in one way or another, fight your ignorance. When she does, pay attention.

=> ...that if you allow yourself to love your Ancient One without reservation, yes, you will be subject to intense grief when she dies but you will also be privy to the peak of taste of the final ripening of her fruit and you will know her completed story, including every phrase, word and punctuation mark of its last sentence?

This is a gift to be treasured above all others. Don't squander it in fear of how you will feel when you lose your Ancient One. Be assured that, when she dies, you will have her etched into your soul more completely than anyone else. This is the ultimate gift that anyone's life has to offer you. Remember that it is only available to you if you are there, utterly there, to the end of her life.

...would you believe me?