Thursday, May 31, 2007

 

Words Matter

    Yes, I watched the CBS Evening News segment on "caregivers" (which is the word either Couric or Dozier or both used, the day before the segment aired, in the teaser) to the healing injured, permanently disabled and terminally injured from the Iraq war. I haven't a lot of time, here, to cover it, but not much needs to be said. Although I "nudged" Mom, as she requested, before it aired, she napped through it. The upshot of our bet was that it was pretty much a draw.
    Because they're buzzing my brain incessantly, I want to mention two aspects of the program that impressed me. The entire segment was different than I expected in this post. The "caregivers" are military Corpsmen, somewhat akin to Physicians' Assistants but more full service and, my guess is, more highly skilled and experienced. These are the people who function as medics on "killing fields" and handle most of the business, diagnosis and treatment taking place in military hospitals and clinics. I remember, when we were young and treated through military medicine, we almost always saw Corpsmen, for everything. The doctors were mobilized when Corpsmen were out of their league, which didn't happen often.
    According to the segment, what Couric and Dozier termed "burnout" is the result of long hours and the constant need for compassion. It seems that these people often show up to work on their time off. Remember that, although they are paid professionals, they are subject to standard military pay schedules which are typically based on rank, not specialty or excellence, and they are salaried, not paid by the hour. As well, although not epidemic, it is not uncommon for Corpsmen working the Iraq injured units to become so "burned out" as to request duty in other areas (I notice, although this was mentioned in the aired segment, it isn't mentioned in the hard copy write-up).
    One of the military physicians, a mental health professional, I believe, who was interviewed about this problem mentioned the two items that I found most intriguing about this segment:    First, a word about words: I know it is common practice to scoff at new labels that add syllables and seem to unduly sanitize the old terms. In this case, though, I think the opposite is true. Caregivers are, after all, Compassion Specialists. Among all the types of care we give, compassion is the most important and the most rendered type of care. It is also the hardest, because it requires soul and character as well as skill. I'd much prefer to be known as a Compassion Specialist than a Caregiver. More important, I'd much prefer to refer to myself as suffering from "compassion fatigue" rather than burnout. Burnout implies a whole mess of circumstances that often aren't true:
  1. That the burnout is due to a malfunction, rather than incessant functioning;
  2. That it could possibly be due to caregiver failure, commonly known as "failure to 'Take Care...'", of yourself and might involve things like not getting one's oil changed on time, not getting a proper tune-up, not driving oneself wisely, etc.;
  3. Thus, it refers to people in an almost machine-like fashion, which may be somewhat accurate but only somewhat;
  4. It implies, as well, that it's possible to completely burn oneself out to the point of having to be junked out of caregiving, which, I admit, can happen, but there's also a sneaky whiff of, "if only she'd taken proper care of herself" involved in this junked caregiver assumption;
  5. Compassion Fatigue, alternately, places the blame where it belongs, on the work, not the worker;
  6. It implies a solution: Rest and emotional refreshment;
  7. Although it doesn't deny the possibility of a caregiver moving beyond the ability to perform the job, it also doesn't necessarily imply that this will happen;
  8. It gives proper respect to the work, to the most important skill involved in this work and accurately identifies the person who is providing compassion, professionally or avocationally, as a specialist.
    "Caregiver burnout" sounds hopeless and final. "Compassion Fatigue" sounds inevitable and addressable.
    I am especially impressed with the five minute mental health breaks the Corpsmen are given. Wouldn't it be wonderful if something like this, perhaps over the phone, were available to all Compassion Specialists, avocational or professional? A hotline for caregivers, in other words, staffed not by other caregivers, but by mental health professionals who were trained to respond to, for instance, a caregiver who is so beleaguered and disillusioned she is considering walking out on her care recipient, or, perhaps, walking out on life. Occasionally it helps to talk to another caregiver, but, often, other caregivers are just as befuddled as, well, the befuddled. At my worst, I'd love a calming, reasoned, detached presence on the other end of the line, saying to me, when I was at my wits' end, "Tell me why you feel this way," rather than, "Yes, I know, I've felt that way, too." Sometimes I want to know that other caregivers, make that Compassion Specialists, have experienced what I'm experiencing and have lived through it to be compassionate yet another day, but, often, I want Buddha, saying, "Step back; 'breathe deep the gathering gloom'; expel it, all of it from the seat of your soul, up and out; know that compassion is the highest behavior we can exhibit; now, go forth with eyes cleared to see the beauty around you and care, compassionately, once more."

Wednesday, May 30, 2007

 

All right, now I'm mad.

    I've just made the acquaintance of a man who "made the choice" (as though people who become avocational caregivers wake up one morning and say, "Hmmm...I think I'll take care of my ailing/old/terminal relatives...sounds stimulating and fun!") to become a full-time caregiver to two "family members" (he hasn't yet revealed the relationships or circumstances of those needing care). He is noticing that his former professional colleagues are completely undone by his decision; so much so that, rather than sympathize with his very hard "choice", they are castigating him for "taking the easy way out" [Out of what, I can't help but ask.] and treading a dangerously "co-dependent" path. He is, needless to say, finding it very difficult to even want to remain connected to what are fast becoming his former friends and supporters.
    Jesus Fucking Christ! Give us caregivers a break, people!
    Let me tell you this: Every caregiver, including me, has to continually come to terms with negotiating these criticisms, and, believe me, there's no help to speak of when we find negotiations necessary. How many times do I have to say this??? We are members of a species that is so ubiquitously social that it's a toss up whether our affinity for tool making or clan making tipped us into species success. And, yet, here we are, in our burgeoning prime, forming societies that extol the virtues of independence from members of our species, shivering at the thought that caregiving for others is anything other than incidental and worth little recognition or heightened survival status, condemning those of us who go against the thoughtless grain and find it necessary, for ourselves and our loved ones, to opt to give care to those who need it, usually for no pay, no support and no respect. Those of us who "choose" to give care, part time or full time, doesn't matter, do this in a society that pushes teamwork in its businesses and political parties yet refuses to recognize that adequate teamwork is virtually unavailable to its caregivers; celebrates the "public service" of politicians who are typically in league with private, corporate interests yet provides little more than "Take Care of Yourself, Have a Good Day" sentiment to those of us, the caregivers, who are truly involved in public service every minute of every day; lionizes those who "break out of the mold" unless those breaking out are breaking into caregiving, which is clearly a mold for which our society has no respect. How stupidly confused can we get???
    You think it's "easy" to be a caregiver? You think those of us who become companions and caregivers to those who need it are sneakily taking the "easy way out", wallowing in "co-dependence", "finding excuses to avoid responsibility"? Let me tell you how "easy", "dangerously co-dependent" and "irresponsible" caregiving is:    Is it any wonder why I have become so critical about the "Take Care of Yourself" and "Avoid Co-Dependence" movements, hailed by most of society and completely irrational for caregivers of any stripe, at any time? We don't need any more independence in this society, believe me. We're ripping apart our families and abandoning our elders to substandard, often dangerous care by refusing to question our presence on this holier than thou platform of personal "independence" and "responsibility".
    You think I'm wrong about the lack of support for caregivers to the elderly and infirm? Consider this: The big movement in elder care, right now, is to help adult relatives ensure that their elderly are encouraged to live as independently as possible as long as possible. How wise and advantageous do you think this is to members of a species that is so socially attuned that, according to this recent story culled from an author who writes primarily for the home buyers market, large homes undermine our species' felicitous humanity? In order to belabor the point, consider this as well: How "wise" is it to leave people who are beginning to dement to their own resources most of the time? Once more, with feeling, how "wise" is it to take pride in managing an elderly person's life so that you feel good about not being there for them?
    Easy? You think this is easy? You think I'm avoiding the "real world"? You think I've opted for throwing my mother and myself into a cycle of deleterious co-dependence? You think I'm somehow leading myself and my mother down an inhuman path?
    You need to think again. Hard. Being a companion and caregiver to someone who is Ancient or Infirm is so difficult in a society that ignores and scolds its caregivers, that, believe me, most people "choose" not to do this. These are the people who manage to get the most support for any guilt they might feel at refusing the "choice"; they are, after all, "taking care of themselves" appropriately; "wisely" eschewing the possibility of ominous "co-dependence"; valorously supporting this society's love of independence to the exclusion of our equally natural need for association with members of our species; not to mention supporting a professional care industry that hugely appreciates their dollars to the exclusion of appropriately appreciating their relatives.
    Easy, my ass. If you think it's so easy, so carefree, why the hell aren't you doing it???

Tuesday, May 29, 2007

 

Bet Me

    Mom's and my TV news feed tonight included CBS Evening News. It usually doesn't, because at that time we're usually watching Jim Lehrer on PBS. But, for some reason, tonight, we started channel news surfing between 1800 - 1830 and stopped on this CBS Evening News story about the types of traumatic injury characterizing the Iraq war. We landed on it as Dozier was explaining that this war is featuring a higher rate of survival from traumatic injury than previous wars. I already knew this and my finger was poised to surf on, but Mom said, "Hold it. I want to see this." So we watched. At the end of the segment, Couric and Dozier "teased" that tomorrow (I think) would feature an episode on the caregivers to the injured of the Iraq war and the extraordinary conditions these "pros" (apparently they're only going to talk about the caregivers who are paid, not the family caregivers who probably do hard core caregiving) are experiencing...ominously mentioning "Burnout".
    I burst out laughing. "Well, what do you know," I said, "caregiver burnout is finally making the news! Bless the Iraq war for that!"
    My Mom was smiling obliquely. "I think I know why you're laughing," she said.
    Polishing off another chuckle, I challenged her, "Okay, Mom, you tell me, why am I laughing?"
    "Because you burned out a long time ago but you're still doing the job well."
    That surprised me. I didn't think she was aware of caregiver burnout, let alone my own periods of burnout. Maybe I've spoken the word aloud in her presence, but I can't remember when. I was also surprised that she had an opinion about my own burnout episodes and the effect they have on our shared lives.
    We muted the TV and talked about caregiver burnout, from her view as a parent and caregiver to both Dad and her mother and from my view as her caregiver. Nothing was said that I haven't written about here before, really, except when she asked me, "What would you suggest [as a remedy for caregiver burnout]?" This wasn't a facetious question. She was really curious.
    "Well," I said, "truth is, I don't know what to suggest, other than changing society and our attitude toward caring for others."
    She nodded as I said this.
    "But, just for fun, I'll bet I can predict what tomorrow's segment is going to suggest."
    "I'll bet you a million," Mom said.
    "How about making it two, since I've got two predictions?"
    "Okay, two million. You can take it out of my hide if you win."
    "Deal. I'm not sure which will come first, but I'll bet the first two prescriptions, not necessarily in order, will be, 'Take care of yourself,' and 'Take more time off.' I'll further refine this and say that a third prescription will have to do with taking drugs, either for depression, anxiety, sleepnesses or all three."
    "Any more predictions?" she asked.
    "Yeah. I'll bet I know what at least some of the problems will be: Low pay, long hours, high turnover and not enough qualified staff available to allow for saner scheduling."
    "Write all that down," she said, keen to ensure that we'd both remember the details of our bet.
    So, here it is, I'm writing it down. I hope we remember to watch CBS Evening News tomorrow night.
    Later.
    And, yet again later, I watched the second segment mentioned above; here's where I write about it. Thought I'd better add the link because Caregiving at the Crossroads, an intriguing blog about caregiving that I just discovered this morning (6/15/07; 0139) while I was checking out urls from which visitors have been referred, mentioned this post in one of her posts but was clearly talking about the Words Matter post, so I thought I'd add the link for those of you that are visiting from Caregiving at the Crossroads.

 

Embracing Failure in the Caregiver Game

    It's inevitable. If you're a caregiver you're going to host a sense of failure over something, sometimes multitudes of somethings: Failure to notice; failure to do; failure to think; failure to react appropriately; failure to moderate well among extended family; failure to "whistle a happy tune"; failure to "take care of yourself"; failure to effectively medically advocate; failure to look up and out when everyone else has their eyes firmly on their own patch of ground; failure to do everything "right"; failure, finally, to know what's right.
    Along with everything else that occurred to me this weekend, it also occurred to me that when I'm at the point of exhaustion, emotional or intellectual or physical or spiritual or all or any combination of the previous at once, the most effective action I can take is to embrace my failure and live it. Without apology.
    This means:    Nancy Regan was right. Sometimes it's best to "Just Say No."
    Later.

 

I'm having trouble sleeping tonight.

    The day was long and busy and I felt as though I was ready to retire when Mom did, but it's also our first "warm" night. The word "warm" is relative. Although the weather cast predicted a low of 56°F in Prescott Proper, the thermometer outside the coldest corner of our house reads 48°F as I'm typing this. My guess is that "the darkest hour" will probably dip to 40°F or so up here. Thing is, for a good couple of weeks, now, I've been sleeping on the floor in front of the open Arcadia door in the back bedroom, snug in my down-everything bedding. Tonight it's too warm for all that bedding but as I stripped layer after layer, I worked myself into an endorphin buzz. So, I decided to get up. There's not an awful lot I can do without making enough noise to awaken Mom and I don't feel like reading, so I thought I'd sit here in low light, drink some decaf coffee and mention some things that have been on my mind (none of them catch up things).
    Our opportunistic tree is in its fourth year and looks like a mature tree of any other slow growth species. I can see most of its foliage, through our pseudo cathedral windows, waving in the breeze, glimmering in the cast off from the street light across from our property. Today, during my first yard maintenance period, some bicyclers (the road in front of our property is part of a very popular "forest" biking trail because it's a diagonal work-out and rewards the cycler by topping out at Thumb Butte) actually rested in its shade! I was so pleased and proud. Our property has always been inviting to passers-by, for a variety of reasons, not the least of which is that it is the only place along this road where vehicles can comfortably be turned back, once drivers realize they've misinterpreted their map, which happens often, since our road is the last of the natural digression of State Highway 69. I love that, beginning this year, people will be refreshing themselves in the shade of our opportunistic, indigenous, fast growing tree. This is the first year I've watered it and seasoned the soil with our home made compost and mulch. Since it doesn't really need more than available precipitation to thrive, I probably won't water it much more, but I composted and mulched it in the hope that this would help the tree resist the yearly onslaught of thrips, and it already seems to be working. It's foliage is thicker than usual, this year, deeper green, each leaf is strong and unmarred. I'd love it if a few more birds would shit a few more of these seeds in our front yard. These trees sprout all over the place. Most people cut them down and douse the stumps with stump killer, so I'm considering stopping along the road during errands and soliciting permission to pull up a couple babies for transplant into our yard. So far, though, every time I've gone out, I've forgotten to throw tools into the back of the truck. Our pear tree, which is beginning to look like it's appreciating the pampering with which I'm finally lavishing it, looks like it's got a baby, too. This is going to be a little trickier to transplant. It needs partial shade, so finding the right spot for it is going to be challenging, seeing as how our partial shade areas are pretty well populated. Once it's going strong, though, we'll have a reliable cross pollinator right in our yard. That would be nice. I'm hoping our apple tree produces some babies this year. A few years ago it did, but my neglect caused all those to die. Maybe by fall, though, with my trumped up care, we'll have some to transplant.
    We watched a rental copy of Venus today. Well, Mom watched about half of it before it induced her nap. I enjoyed it, although, to my surprise, it's not a movie I'm considering owning. Grabbed a couple of interesting quotes from it, though:    A few weeks ago I saw a trailer for the movie Away from Her. A tiny, suggestive couple of moments in the trailer so intrigued me that I'm going to try to see this movie in the theater when it arrives here: It was the part featuring "her" developing relationship with a man at the facility to which she chooses to relocate. As I watched "her" wheel this man around and play with him at a community table, I suddenly realized that part of the magic of this relationship, for "her", was that it gave "her" the opportunity to remain a successful caregiver (vs being exclusively a care recipient and/or a caregiver suffering enforced retirement), despite "her" mental aberrations. I was immediately reminded that my mother continues to consider herself involved in mutual caregiving with me and with our beloved cats, even though, on the surface, it appears as though there is only one caregiver in our household, me. I've previiously mentioned this in these journals. I think this is part of what keeps my mother going. It isn't just that feeling needed keeps people locked into life; it's that having opportunities to give appropriate, appreciated care, to someone or something (doesn't have to be a person) other than ourselves and knowing that this care is vital, I think, enhances one's own vitality, regardless of quirks that may plague it. I remember briefly reading, in a couple of online journals, mostly notably The Yellow Wallpapaer and Mondays with Mother, similar notes in passing about residents in facilities caring for one another. Perhaps, no matter what our circumstances, we naturally seek to care for others; other people, other beings, other concerns; and we need others that will accept whatever level of care we are able to give. I'm curious to see how much this is explored in the movie, especially since, at least in the trailer, this aspect of the story seemed almost beside the point and hasn't been mentioned in anything I've read about the movie. I've made a note to remember to look up the Alice Munro story upon which it is based the next time I'm close to the library.
    I do believe it's cooled enough for me to successfully drift into sleep. Must remember to switch to summer bedding tomorrow.
    Later.

Monday, May 28, 2007

 

I've broken my vow...

...the one to catch up on all those draft posts. It's not yet midnight, of course, but I'm rather sure I won't be working on them between now and midnight. I'm usually in trouble when I have to "vow" to do something, anyway...that usually means I don't want to do it. If it needs to be done, well, it gets done; vows for those kinds of activities aren't broken. But, the posts aren't "needed", really. A couple are important to a couple of people (although, frankly, less and less so to me). Some are informational; some are celebratory; some are rallying cries; some are confessional; some cross categories. But, you know, it's been a gorgeous weekend...on the cool side of warm, breezy, sunny, great weekend for yard work and yard enjoyment. No, I didn't get a tiller. Seems Saturday morning of Memorial Day weekend is the wrong time to attempt to rent anything that has to do with yard work; should have figured that. Not sure if I'll try tomorrow...I'm thinking, more, probably Wednesday. Mostly, when I find some time to write, instead I've been zoning out in the yard. Haven't been able to get Mom out, much, although she did go out twice and both times mourned, with me, the havoc either the deer or javelina (probably both) did to our roses, the delphinium and the tomato plant, but they're recovering, and I'm fully stocked with garlic oil concentrate stuff, now.
    I've noticed a bout of Not Caring sneaking up on me...not in regard to our little family of Mom, the kitties and me, but about everything and everyone else, including estate business, about which I'm scolded, regularly, by The Literature, I should care, and certainly I've worried about it, steadily, for years...but this weekend I entered this, hmmm, well, I guess you could call it an "area", wherein I'm finding the idea of leaving the estate in its current "Gail's life gets split four ways upon Mom's death (even though no one else's life will be altered by her death), she essentially ends up with nothing because what she'll get won't be of use to her, seeing as how she'll be homeless and penniless, anyway" state hilariously and entertainingly absurd: Contemplating my relatives rooting around in an outdated will, trying to snag their share of what's listed but no longer exists and what's not listed but does exist, because, of course, since the will wasn't changed, that must have been what Mom wanted and too bad that Gail didn't fight for what she needed, oh well...you only get what you fight for...she should have put out a little more effort...
    Yeah, right. One more thing for Gail to do.
    Maybe my fundamental attitude will change, but, you know, maybe it won't. The one thing St. John's Wort hasn't done is change my attitude toward human life in general, that I'm not really interested in it once Mom kicks the bucket...too fucking ridiculous for me and, I notice, it's getting more ridiculous every day. I think I have only enough caring left to felicitously usher Mom and the kitties and me through the rest of her life. I'm looking forward to that. But, nothing else.
    I'm anticipating future periods, perhaps one will coalesce soon, wherein I'll feel like playing the caring game. It is, after all, an engaging activity. I'll look like I'm caring; I'll act like I'm caring; I might even feel like I'm caring, possibly I'll believe I'm caring. But, you know, I think, fundamentally, I'm done with serious caring. I guess that's called Being Cared Out. I vaguely remember ominous talk about this state. Now, I'm here and I'm realizing it's nothing to fear. It isn't half bad, in fact. I mean, you know, when you're cared out, there is, truly, nothing to fear.
    I'll continue writing. I can't discontinue writing. It's automatic, just as is much of life. I do it in my head...so, of course, I'll do it on a keyboard.
    I'm so sick and tired, though, of Giving a Shit. I'm really not interested in giving a shit about anything or anyone, anymore, except our own little family and our shared lives. When that gets blown apart by Mom's death, well, thank the almighty gods, I expect to be free at last.
    Later.

All material copyright at time of posting by Gail Rae Hudson

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