Essaying the Situation
Thursday, April 29, 2010
As of May 1, 2010...
...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.
Saturday, December 27, 2008
Report of Mom's Death
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.
Tuesday, July 03, 2007
Untitled MBR Review for Mothering Mother
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.
Monday, June 26, 2006
$25.00/hr - An Addendum to "I Can't Get It for You Wholesale"
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.
Sunday, June 25, 2006
Paying the Bills
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.
There are a flurry of historical posts, listed below, describing this period in detail:
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 about "Involving the Whole Family in Caregiving". [9/15/2013 Update: This article seems to no longer exist on AARP's website. The entire, article, however, is available as a reprint here, at least for the time being. Scroll to page 2 to access it.] 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"
First, a definition:
Webster's New World College Edition Dictionary of the American Language © 1968With that, you'd think I need go no further, right? Reason to hate the word "respite" seems to be laid out.
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.).
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 [published in England as The Long 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 © 1968Consider 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.
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...
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
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.
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.
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?
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".
Friday, June 02, 2006
No one would blame me...
...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.
Wednesday, December 21, 2005
This Isn't Your Mother's Caregiving
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?!?
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.
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.
All material copyright at time of posting by Gail Rae Hudson