Mom & Me Four Archive

    We watched two movies, Ghost, which I bought on the cheap today at Costco, and followed up with Little Buddha, always a good quiet evening choice.
    We talked some about doing more podcasts. Maybe we'll do one this weekend. She's still interested in continuing the questionnaire but still doesn't understand that "yes and no" answers aren't very helpful and the object of the recording isn't for me to talk-talk-talk trying to second guess answers that she refuses to give.
    It's getting warm, again, so I mentioned to her that maybe it's time for her to start moving again. I think she's been experiencing a mini-hibernation, finally, this winter, over the last three weeks. Could have been in reaction to my Caregiver Burnout, though, since I didn't care how much she slept or whether she moved much and I'm sure she enthusiastically took advantage of this. When I mentioned going to the local Barnes & Noble tomorrow or Sunday, then going out to lunch afterwards, she seemed excited. So, I don't know. We'll see. I want to hit Staples and she shares my love of office supplies. I've also have mini-lists for Home Depot and Target, perfect excuses for short trips to both stores. Maybe I can get her out and about a little more next week.
    Later.

...NFCA sponsors a program called Greeting Cards for Caregivers. The organization solicits the "volunteer help from our caregiver members" to prepare and send the cards ["(All materials are provided by NFCA); NFCA designs its own greeting cards with up-beat messages to remind you you're not alone"] to other caregivers. Along with two anonymous testimonials, the sign-up form displays one card, the front of which is easily read and contains this quote by Rabbi Hillel from the Talmud: "If I am not for myself, who is for me? And if I am only for myself, what am I? [And i]f not now, when?" A few others are displayed in a small "bouquet" but impossible to read without significant magnification except for one which clearly says in comic book style balloons on the front, "Hi! How are you? I'm just a phone call away."
    It is interesting to me that the program is "currently on hold", although both senders and receivers continue to be solicited. I have no way of knowing for sure but my best guess is that the program floundered for lack of both recipients and senders.
    Although not entirely in sympathy with the idea of money being spent on such a program and certainly not interested in receiving or sending such cards (I get enough "inspirational" help from people and well-meaning caregiver websites and pamphlets as it is, so much that my initial response tends to be cynical; as well, I spend a fair amount of time inspiring those I know, both caregivers and non-caregivers), I understand the motivation, even for the questionable tactic of soliciting caregivers (as though we don't already have enough to do) to send the cards out to a mailing list of sister caregivers (I use the word "sister" to indicate that most caregivers are women): Let caregivers know that they are not alone. My problem with this, though, is that we know we're not alone. We know there are millions in this country and the world just like us, whether we "chose" or "didn't choose" our caregiver status (NFCA considers that whether or not one "chose" this role is significant and that if one feels that one didn't "choose" it one must get busy and decide to "choose" it; my feeling is that in a world where women are almost exclusively indentured into caregiving, including primary parenting, it makes little difference, realistically, psychologically or spiritually, whether one "chose" to be a caregiver, even though I consider myself to be one who "chose" this, and whipping oneself to "choose" something one is already doing by virtue of one's place in the human community doesn't make a whole hell of a lot of sense or difference). We also know that it isn't lack of communication with other caregivers that make us "feel alone". It is lack of concrete and adequate help and support from those surrounding us who aren't directly involved in caregiving. In a curious way it would be accurate to say that, literature or not, greeting cards or not, all caregivers have, and are aware of, an intense spiritual connection with other caregivers, especially those within their purview: Parent to parent; intense needs caregiver of an Ancient One to intense needs caregiver of an Ancient One; intense needs caregiver to An Infirm One to intense needs caregiver to An Infirm One. After we have been caregiving for awhile we can even silently recognize (and sometimes acknowledge, if we're up for it) other caregivers on the street through a type of care-dar.
    So, if it seems necessary to some caregiver advocate organizations to spend money on a greeting card program that is truly for caregivers, here's my greeting card inspiration: Solicit lists of people of all types, relatives, friends, professional associates and organizations (with addresses and phone numbers), from caregivers. Design and send cards (anonymously, if the caregiver wishes) that say something other than "Have you recognized the caregiver you know today? Have you thanked her? Have you inspired her?" What could the cards say? How about:

"Contact the caregiver you know and tell her you're willing to learn how to take care of her care recipient, find the time for her to train you, then show up on her doorstep and spot her for some hours or days."
OR
"Show up with a household maintenance tool (a carpet cleaner, a roto-tiller, an eave cleaner) and insist on doing a chore for her that you've noticed hasn't been done in awhile."
OR
"Prepare your home and family for intense needs caregiving, which will include learning all the caregiver's procedures, then go to the caregiver's home, pick up the care recipient and insist on taking care of the recipient in your home for a week (or more)."
OR
"Spend some time writing some meaningful legislation that will affect all caregivers felicitously, regardless of whether they sign up for a program, then introduce it before congress and lobby vociferously for it."
OR
"Resolve that for one month you will recognize all caregivers who walk into your office, treat them with unusual respect, solicit their opinions, accept their reality, and do something within the purview of your organization to lighten their load."
OR
"Resolve that for one month you will ride your professionals rigorously to pay as much attention to the care recipients you are serving as their caregiver does so that the caregivers who have entrusted their recipients' care to you are confident that the recipient will feel as safe, comfortable and loved as the recipient does with the primary caregiver. Go to any lengths to do this including keeping an eye on the recipient at all times; making sure their diapers are changed immediately when soiled; communicating and interacting with them on their level and enjoying this; knowing when to leave the care recipient alone in their reverie; noticing when doctors and other medical professionals are simply spouting the program regarding medical care and standing up to them; following the recipient around, if need be, and making sure she drinks the hydration she is offered; figuring out why a recipient may not be eating and do everything you can think of to either get that recipient to eat or respecting that the recipient is 'at that stage' where they are refusing food and hydration in order to hasten death...you know the drill. In addition, see to it that these professionals are trained, paid and respected commensurate with the attention you expect them to pay to the care recipients so they will be motivated to do the job. As well, make sure that your professionals want to be there and aren't there simply because they couldn't find any other low-paid labor."
OR
"Do something meaningful to educate and activate the non-caregiving community in your area about the intense needs caregivers within their midst and what help they need."
OR
"When an intense needs caregiver's recipient dies and the caregiver begins to flounder, be there with help, support, money, legal advice, medical care, whatever they may need, until the caregiver is able to return to the non-caregiving community in fine fettle. Don't prescribe a time, don't push, don't argue, don't question, just be their foundation. And, most of all, take their word for what they need, unless they say they need nothing, in which case see to it that you are as perceptive, all-encompassing and invisible as the caregiver was with her care recipient in offering support."

    Once the cards have been sent, activate a committee of people who will follow up with the recipients to remind them of the "greeting card" suggestion and further bother them until the recipient responds to the card and does something. And, whatever you do, DON'T SOLICIT CURRENT CAREGIVERS TO EXECUTE THESE TASKS!

...her light's still on, she'll probably read for awhile, and she's fine. She's so fine that I managed to administer all her pills except her Oscal, garlic and vitamin E. She's so fine that when her hunger got the best of her at around 2200 she decided she wanted cake and ice cream. I gave it to her for two reasons:

1. I know it wasn't the cake and ice cream from a couple of nights ago that gave her the runs because I had the runs, too, and I didn't have cake and ice cream.
2. She hasn't eaten much today and can use the refined carbohydrates in our continuing try to get her A1c back up.

    She even stayed up, when she was finally "up for good", as she put it, for a respectable amount of time, considering. She was in good humor throughout the entire indigestive day.
    So was I, for that matter. As she pointed out when we finally bathed her this afternoon and I sang my silly little bathing ditties as we progressed through the stages, "You haven't sung in a long time. I don't think I'll ask if you if you have to sing, today. [Because my songs are so stupid and spur of the moment, she always feigns mock irritation and makes a production of asking me if I have to "do that".] It's just good to hear you singing, again." It was good to feel like singing again.
    Funny, I wasn't scared about this episode of diarrhea with her. "The literature" counsels caregivers to be concerned about stuff like this when it happens to people in my mother's "condition" but my instincts told me it wasn't any more than weird food and it wasn't going to affect her any worse than it did me, all things considered. She had more cleansing episodes than I did, but, then, her bowels are more sluggish than mine so they had more to expel.
    I was right. I know this woman's body. This episode granted me the confidence I need to see her through to the end. I'll know when to be concerned. I'll be able to make all the decisions necessary as time passes, and I'll make good decisions.
    Damn, I'm tired. It's been a long haul. I'm sleeping in tomorrow.
    Later.

    I looked up the name of a journal I've been curious about and haven't had the time to find until today, when both of us are, literally, sick and tired, to look it up on the web. I didn't have an address, just a name. The name includes the word "caregiver". Turns out the journal no longer exists, BUT, here's the thing you'll like: You know the list of computer generated ads along the right side of the Google search engine? Well, one of them showed me that I've been looking in the wrong place for caregiver help:

Need Caregiver?
Find caregiver online.
Comprehensive list of manufacturers.

    So, it's as easy as that. Caregivers are a manufacturered item and you can buy the latest model fresh off the line; or, you know, last year's model if you want a smokin' deal.
    Mom has had a meal. At about 1530 she had two boiled eggs, two pieces of toast with margarine and cinnamon and a large glass of orange juice to help keep her blood sugar up. She's napping again, now, peacefully. Hasn't visited the bathroom since, hmmm, well, it's been awhile. I think everything's out now.
    Later.

    Just a note to mention that it's turning into a loaded day (pun intended). I had a mild case of diarrhea last night. No biggie. But since I went to bed at 0400 this morning and arose around 0800, Mom's been up and down with the same thing. So, she's spending most of the day in bed. No fever, no nausea, it's a little difficult keeping her hydrated but I'm dealing with it, I'm not worrying about pills (except her lisinopril) and such and she continues to report that she's "okay, just tired". Her color remains very good. I'm sure it's something we ate, although I can't put my finger on what. The rule is, it usually takes 72 hours for a food to create severe indigestion or food poisoning. Since I'm feeling good, even felt good during the diarrhea, and Mom's immune system is often stronger than mine, although I'm keeping my eye on her I'm sure she'll be fine after her cleaning out. Her bowels are just more reactive to volatile substances than mine are. Old, tired bowels, you know.
    The one blessing is that flushing her diarrhea down the toilet is a clog-free operation. She's feeling a little raw from all the cleanings, though. I'm trying to be gentle and I'm treating her, between cleanings, with an antiseptic salve that's designed to soothe, protect and heal. I'm sure today will be followed by at least 24 hours, if not more, of no bowel movements so her genital skin should come through this just fine. There won't be any stats or meal reporting today, for obvious reasons. We'll be lucky, in fact, if she is even interested in one meal.
    Later.

I awoke with the following realization: Right now, in this country, a tragically mixed message is being sent to caregivers, usually through organizations being paid by the government to send the message: "You can't do it all by yourself, you'll fail and mess up your life if you try to do it all yourself, so get out there and DO IT ALL YOURSELF. And, in the meantime, here's a Caregiver's Day (or week, or month), to obligate others to every once in awhile thank you for keeping the mess out of their lives."
    I said it before and I'll say it again until we all finally get it.

    Funny how it's happened. There are two posts below that delineate some of the process.
    The immediate first is a short series of e's between MFLNF and me that have been exchanged over the last 24 hours or so. Responding to his e's allowed me to define, for myself, what's happening to me and renew my commitment to what I'm doing.
    The second was catalyzed sometime this last weekend. On a whim I plugged a couple of search terms into Google: "grant caregiver". I wanted to see what sort of government grants were offered to organizations purporting to deal with caregivers and how those grants are being used. Up popped a stunner: National Family Caregivers Association, who received a grant to record 500 word stories of family caregivers across the nation for the expressed purpose of shedding some light on the reality of family caregivers. The site is extensive. I decided to join as a family caregiver (it's free) and see what hard copy materials NFCA had to offer. I received those materials today and read through them (I'm not only a fast writer, I'm a fast reader). My self-catalyzing reactions are contained in the second post immediately below this one.
    Otherwise, things are going better and slowly, as usual. Mom is continuing her Late "Morning", Late "Night" adventures, although she petered out today and didn't stay up the full 12 from when she arose, exactly 12 hours after retiring yesterday morning at 0230. There have been a bunch of intriguing programs on both the Science and History channels over the last few days, most notably a series called Miracle Planet that started late in the evening night before last and continued until 0300 yesterday morning. I made it through the final episode. My mother conked out halfway through. We both are hoping the series repeats earlier in the day at some time.
    While watching an Inside the Actors Studio fest on Saturday, during the Russell Crowe interview (surprisingly, one of the better interviews) we were reminded of Master and Commander: Far Side of the World. My mother couldn't remember seeing it and expressed unusual interest in it so I pulled it out and queued it. She was riveted. Watching it through a Navy Gal's eyes polished my appreciation of it. After the movie she mentioned that she wished she'd been a sailor in the early 1800's. Interesting.
    Otherwise, I also engineered a Sex and the City run, fifth and sixth seasons, in an attempt to lift my spirits. It worked, partially and fleetingly.
    I also noticed that when I'm in Caregiver Burnout I tend to do more elaborate cooking, or, at least, I consider doing more elaborate cooking and actually do some of it.
    Anyway, on to the posts. You'll notice that they are spiced with anger. Anger seems to be a depression antidote for me. If I can find a way to trigger it, I can usually find my way out of the woods.
    On to the Posts of Significance.

    The instigating e was from MFLNF. He noticed the post in which I lamented my severe case of Caregiver Burnout and responded by offering to send me an unused portion of an antidepressant prescription. My response:

    Wow, I'm touched by your generosity, MFLNF, and, believe me, I'm not refusing your offer because it's Rxed pills. I've taken other people's pills before, I've even used other people's pills on my mother. I guess I could be said to have a little bit of the generation in me, about whom NYT wrote a month or so ago, who regularly takes unprescribed prescription medication and trades it with others. The problem is the type of medication, antidepressants. Not that I consider that I'd be taking unusual risks using them without a doctor's oversight, although, you know, that's possible.
    The thing is, MFLNF, if this Caregiver Burnout is a type of depression, and it probably is, I know what's causing it: Lack of adequate, trustworthy and available people who are either volunteering to take care of my mother or to whom I'd willingly hand over my mother so I can experience what is currently and popularly known as "respite". I concede that this Burnout is probably causing a neurological chemical imbalance which affects my behavior. I concede that maybe this imbalance could be corrected, partially or wholly, with antidepressants. Then, you know, I'd be "The Carefree Caregiver" again and, well, nothing would be done to correct the ridiculous lack and outrageously bad quality of respite resources upon which caregivers to the Ancient have to rely at this time. I mean, you know, it's all too pat: Give the stressed out, badly spotted caregiver some antidepressants and poof! Problem solved and no one else has to be disturbed or change their MO.
    See, I know I'm not the only one who labors under these conditions. I know I'm not the only one who, finally, after attempting to use resources, has found that they are less adequate than I am at my worst. I know I'm not the only one whose extended family is distant, at best. I'm not the only one who experiences anger, exhaustion and despair, nor am I the only one who becomes so tired that I occasionally stop protecting my mother and my relatives from my reactions.
    I also know that if situations can create neurological chemical imbalances, situations can also bring neurological chemicals back into balance. I know what'll heal my Caregiver Burnout: Reliable, adequate, worry free periodic substitutes for what I do for my mother. I also know that if I "give up" and take respite anyway, following the questionable advice that "I'll be a better caregiver" if I do this, by leaving my mother under less than adequate, worrisome care I risk having to clean up a mess when I return, sometimes a medical mess, and wishing I'd never left. It's happened to me before, five times. It even happened when I was scrutinizing her care as much as I was able when she was in the skilled nursing facility for two weeks' therapy when I was not considering her stay a respite for me. The alternate care situation in this country is so bad that it is not a worry free option for caregivers. And families? Who exactly is at fault for the fact that I can't rely on my family to pinch hit for me? Me?!? Am I supposed to be my family's motivation as well as my own and my mother's?!? Bullshit!
    MFLNF, I'm on a journey, here. I started it on behalf of my mother. I realized, belatedly, that I'm also journeying on my own behalf. Lately I've begun to understand, by virtue of my Mom & Me Journals, that I'm also doing this on behalf of all caregivers to Ancient Ones. Whatever I'm experiencing millions, maybe even billions of caregivers, past and present, have experienced and are experiencing the same struggles. At least for the time being, future caregivers have these struggles to which to look forward. I need to know where this leads. I need to go all the way, regardless of what that means. I'm perfect for this. I'm incredibly strong. I have a self-concept that will not allow me to faultily blame myself for outside circumstances. I have the internal strength to bring others to task when necessary, without apology. I can stand up to medical professionals using every "But, She'll Die" trick in the book and say, "No!" Time, after time, after time I hit the skids and finish the skid on my feet. And, I refuse to excuse society for the circumstances it creates that make my job much, much harder than it could be.
    Wouldn't it be interesting to know, publicly, how much it takes to kill a caregiver ("kill" meaning when a caregiver decides she can't do it anymore)? Maybe some of us can't be killed and, admittedly, it would be nice to think that I'm one of the hardier but, indubitably, many of us have been and are being killed. Time to know why. Maybe if we have a way to learn why we'll begin to wonder how, other than a pill or feel good psycho babble or scolding the caregiver, to fix the problem. That's not the journey I imagined, MFLNF, when I started, but this is where the path has led. Pills didn't get me into this. Pills shouldn't be used to get me out.
    Anyway, whoa, sorry to be so wordy. I'm moved by your offer and that you've even made yourself aware of what I'm going through. I honestly thought you regularly deleted all the posts that are automatically sent your way. I'm not just pleased but heartened that you don't. Although you didn't invite this barrage, your expressed sympathy allowed me to feel comfortable unloading on you, so, anyway, thank you in advance, truly, for listening.
    Please know, you're not one of those in the crossfire of my disappointment at being left out on a limb in this Caregiver Conundrum. But, again, thanks for listening.

    MFLNF responded that I struck him as akin to the guy who ate McDonald's for a month to see what effect it would have on him. My response:

    Supersize Me! Yeah, I remember that movie! Interesting documentary. Whenever it plays on the cable channel that produced it I usually manage to catch some part of it. I especially like the artwork that intersperses the content on the experiment; very provocative! I even rented it a while back so I could watch the special features, which were equally horrifying. By the time the movie was packaged for viewing the guy's body chemistry and composition still wasn't back to where it was when he started. I thought it equally interesting that the film featured another guy who has eaten very little else but McDonalds Big Macs for years and whose body seems to be okay with that.
    I guess I am like him. Except that he had alternatives that were not only acceptable but highly so and readily available. The guy even lived with a vegan chef! I wish I could say I was refusing acceptable, available alternatives for the sake of experiment. Instead, I'm selecting one of many evils, the default evil, as it were, and, as it turns out, no one else is particularly concerned about my choice, whereas everyone the Supersize Me guy knew, including medical professionals, was very concerned about his choice. Many people, including some I know, probably figure, "Yeah, well, that's what happens to all caregivers, always has, always will. That's life. Deal with it." Some people, I'm sure, probably even think what I'm doing is "good" for me, after all "[I] had to do it," and figure I'm getting my just desserts for having avoided any type of caregiving for so long.

    I think it's important to begin by mentioning that NFCA attempts to address all family caregivers, not just family caregivers to the elderly and not just full time caregivers.
    The materials I received included eight pamphlets summarizing various caregiver techniques in the following areas:

1. How to prevent "medication mishaps";
2. How to manage hospitalization of one's charge;
3. Tips on communicating with doctors;
4. How to evaluate support groups and what to look for;
5. A pamphlet about the importance of tending to one's own health as a caregiver;
6. How to figure out what kind of help you need and find it;
7. How to manage your caregiving duties;
8. A pamphlet on what is popularly called "self-advocacy" for caregivers.

    A sixteen page current issue of the NFCA magazine, TAKE CARE!, was also included. All the articles in the magazine were expanded versions of the "tips" in the pamphlets. As a sidebar, it is interesting to note that NFCA is responsible for organizing, in 1994, and soliciting government proclamation, in 1997, of National Family Caregivers Week, set as Thanksgiving Week. I didn't know about this, although apparently it's been regularly and publicly celebrated since 1997. If you're curious about how I feel about this, see Caregiver's Day. It is important to note, as well, that NFCA's "core philosophy" is "caregiver self-advocacy and empowerment", as stated here under NFCA's 1995 accomplishments. [Update, 10/2007: The linked page no longer exists, nor does the wording. Instead, this page which no longer delineates NFCA's accomplishments by year but, rather, in general, from 1994-2006, refers, in the second bulleted "Achievement", to a "philosophy of self-advocacy".
    Of the eight pamphlets provided, I had no problem with those providing information on how to deal with the non-alternative medical industrial complex and its representatives and products, although I, and I assume all other caregivers who are involved in their charges' professional healthcare, figure out this stuff on the heels of their first or second visit with the medical-industrial complex on behalf of their care recipient. Nor did I have a problem with the pamphlet discussing how to "coordinate" caregiving, although there was an interesting blurb on the back that began with the fantasy of a care coordinator for every caregiver and blossomed into how one can do this for oneself. This blurb was where I began to have problems with the literature.
    I know that caregivers regularly find themselves in situations (often due to lack of willing, available help) that make them stronger, more self-reliant individuals. I know that caregivers learn, very early on, the benefits of strong advocacy, both on their charges' and their own behalf. You don't need to tell caregivers to do this. It happens automatically. One day you wonder if you're strong enough to deal with a sticky situation and the next day you've dealt with it and you've done it on your own, admirably, I might add, even though you wish you could have had help. You also don't need to tell caregivers to get help when they need it. We're always looking for help and, unfortunately, we're also often realizing that the help upon which we decide to rely is actually the greater of two evils.
    I've been doing this for awhile and I've developed enormously in the skills and tasks inherent in caregiving in both the areas of self- and charge-advocacy. Thus, I speak from experience when I propose the following:

Program for Keeping Caregivers in Their Place

• Make sure that your constituency is composed of the disenfranchised or too-busy-to-take-advantage-of-being-enfranchised: Mostly women.
• Rarely remind them that the caregiving work they do is either unpaid or poorly paid and that the entire nation benefits gratis by standing on their already stooped shoulders.
• Talk about how the caregiver must empower herself without mentioning that the reason she must is that no one is willing to take families and communities to task for not empowering the caregiver.
• Talk about how the caregiver must advocate for herself without mentioning that the reason she must is that no one is willing to take families and communities to task for not advocating for the caregiver.
• Solicit the stories of caregivers and what they'd like in the way of support in order to make them feel as though they are being heard but limit them to 500 words. This will keep them busy enough for awhile not to question your "efforts on their behalf".
• Work hard to scare the bejesus out of caregivers by constantly reminding them of how their health, both physical and mental, will suffer, how they will prematurely age and how they won't be able to take good care of their charges if they don't, and shout this part, TAKE CARE OF THEMSELVES, too. Cite studies, plenty of which abound, but ignore the studies that find just the opposite and ignore the statistical sense that dictates that studies are often fallible and subject to varieties of interpretation, often contradictory interpretations.
• Use these tactics to scold the recalcitrant caregiver into believing that the only one who can help her is herself, and she'll be better off for it.
• If the caregiver is suffering stress and depression, scare her into seeking professional medical help for this. Absolutely do not encourage her to sound off in anger at those who are refusing to help her or helping at a level far below what she would expect from herself. If she's troublesome, tell her that anger is self-poisoning. Don't even suggest that aside from feeling good to express anger, it often gets one going in the right direction.
• Intersperse all this with occasional attempts at sympathy wherein you mention that, yeah, it's gonna be hard, you're not going to get the help you need even when you demand it, you're probably going to be dissatisfied with the help you do manage to scrounge, but, damnit, you deserve respite, at whatever cost, so go out there and continue to demand it, regardless of the circumstances. Remind them that if "respite" under their particular circumstances seems difficult to impossible to manage this is both their problem and their fault, AND THEY'RE GOING TO GET SICK AND OLD REALLY, REALLY FAST IF THEY DON'T SOLVE THE PROBLEM PRONTO!
• Prey upon the caregiver's regularly sinking spirits by using them against her: Scold her for fear and offer platitudes to help her overcome it; scold her for "just doing it" and offer her harassment to help her find help; scold her for "not thinking about herself" and offer her dire predictions of the kind of love mutant she'll become if she doesn't "start thinking about herself". Whatever you do, don't ever allow her to think that she actually is thinking for not only herself but someone else, as well, and doing a damned good job of it, despite the circumstances.
• Refuse to acknowledge that families are often the last and worst bastion of support. Refuse to acknowledge that her perception that it is no longer in her best interest to continue to cajole a recalcitrant family into becoming significantly involved is an accurate perception.
• Encourage her to "network" with other overburdened caregivers. Assure her that "the sharing of experiences" will somehow be beneficial. Ignore that the reason this was beneficial for the women's movement is that it began with women who had a little time to spare and resources that allowed them to say, "No, I'm not putting up with this anymore!" and left their posts. Don't do anything to encourage caregivers to leave their posts because, the gods know, there isn't anyone to fill in.
• Caregivers get tired of hearing how heroic they are so watch the sentimental shit. Try to sound as though you know the job is a drudge and keep the caregiver from revolting by constantly slipping in reminders that if they're having problems, well, it's their fault, they're not taking good enough care of themselves, they're not believing in themselves enough and, be sure and stress this: NO ONE CAN TAKE CARE OF YOU EXCEPT YOU. Rely on repetition to imprint this; it worked for Hitler. Remember, you're working on a group of people who are feeling enfranchise-challenged, anyway and, in this country in particular, are apt to believe that if things aren't going the way they'd like it's their own damned fault. Rely on the fact that this attitude is so popular that it's making Dr. Phil rich. Ignore the fact that caregivers know better because, well, they're taking care of someone else for whom self-care is dangerous.
• Search hard for a couple of Monster Caregivers who were actually successful at doing everything themselves and can be said to have "taken care of themselves" properly and set them up as examples. Make it seem as though this is not only a desired state but it's a state achieved by most caregivers. Remember, most caregivers are isolated and too busy to check around and notice that Monster Caregivers are exceptions to the rule.
• As is usual with unpaid laborers upon whom communities and nations depend, institute some sort of Day or Week of Reverence for Caregivers. The greeting card industry will love you, maybe throw some money your way to help pay your salaries and the costs of producing those "Take Care of Yourself" pamphlets and newsletters. Hell, you might even get a book deal out of it. Don't worry too much about whether any concrete action is taken within communities to make caregiving an "everybody" activity. Remember, it's the thought that counts...usually it counts revenue.

    Am I being outrageous? You bet. Am I being unfair? Absolutely not. I was astonished that a nationally recognized organization that purports to help caregivers is, first, joining in the shouting match directed at caregivers to take care of themselves, and second, thinks this is the best way to help caregivers. I know, you can hardly blame them. This is the way the disenfranchised are typically handled. Our place is always our fault, until, finally, groups of humanity enlighten themselves just a little beyond where they are (usually led by a few of The Privileged with heavy consciences who love depending on the disenfranchised but have somehow begun to suspect that the situation isn't fair), a war is fought, The Good Guys win and the tide begins to turn. We, as a society, aren't there yet as far as caregiving is concerned, although maybe we're on our way; after all, caregiving is slowly becoming more visible. No one, though, is yet prepared to consider that caregiving, in all its guises, at this moment in this country, is little more than slavery and/or indentured servitude and deserves to be reevaluated from ethical and moral points of view.
    Instead of organizations that speak to caregivers (which are proliferating like rabbits, right now), we need organizations that aggresively seek out all the other people, families and communities, and harass them into paying attention to their caregivers. Instead of legislation that gently suggests that it might be a good idea to honor the idea of respite for caregivers, we need awareness that caregiving isn't something only half the human race should be doing for little or no remuneration but everyone should be doing, supported by their governments without question, loopholes or hoops through which caregivers must jump. We caregivers don't need Thanksgiving Week Gratitude, we don't need to be scolded, we don't need to be cajoled, we don't need to be told we're doing ourselves in when we barely have the time and energy to do for those with whose care we've been entrusted, we certainly don't need to be told that if we aren't getting that help we need to "demand" it instead of ask for it, we need, yes, we need help that we don't have to scold and cajole and bargain with in order to get it. We need organizations who will speak to others instead of to us and rally everyone to the Cause of Caregiving.
    Don't talk to me about caregiving; there's nothing you can tell me that I don't already know and, believe me, if I'm a caregiver who's been doing it for any length of time, I can't be fooled into thinking It Should All Be on Me. Talk to someone who's not giving care, who's related to or knows someone who is giving care and who thinks they, personally, are lucky not to be in the hot seat. Have them come to me. I don't have the fucking time to go looking for them or, when I find them, to deal with their concerns about "losing their life" by caregiving.
    "If you cling to your life, you will lose it; but if you give it up for me, you will find it." [--Matthew 10:39 New Testament, New Living Translation] This is the fundamental tenet of caregiver wisdom. And you thought Jesus was talking about proselytizing, didn't you.

...immediately after that last post.
    I've updated The Dailies, pretty much, I think I'm only a day behind, and there's a little updating there; not much, though.
    I'm still struggling. It wasn't income taxes this time (although it's affected me getting them out...gotta do that, like, right now), I'm not sure what it is. I'm just hunkering down and trying to get through it. It lifted a bit a few days ago but then was back with a vengence yesterday.
    Last night, when Mom and I were talking about my burnout (yes, I talk about it with her, after all, it's obvious to her anyway), I asked her about her stint as a caregiver to An Ancient One, the one she talked about briefly on one of the podcasts (can't remember which one). She took care of this man for a bit less than a year, live-in. She was, essentially, telling me that she "knew what I was going through" because of her experience, insinuating that I wasn't handling this situation very well and I needed to buck up; after all, she "did the same thing".
    "But, you did it for less than a year."
    "You'd be surprised how long a year of doing that can seem."
    No, I wouldn't, but I didn't say that. I asked her if she got time off.
    She said, "No."
    I asked her about the daughter who hired her.
    "Oh, she was in Cedar Rapids working during the week and with her father on the weekend."
    "Did she take care of her dad on the weekend?"
    "Oh, yes."
    "What did you do on the weekends?"
    "Well, whatever I wanted. I was off on the weekends."
    Doesn't help to discuss this stuff with a former Ancient One Caregiver who got time off. So, although I have no concrete reason for comparison, I suspect, at the moment, I'm taking less good care of her than she ever did for her charge. I apologized for slacking on her care.
    "Oh, you're doing fine."
    Yeah. Right. Neglecting the taking of stats; lots of stony silence, playing a lot of movies and searching out TV programs to fill the silence and disguise its stoniness; avoiding her eyes; indulging in outrageous Abandoning Fantasies (upon which I intend to elaborate later, just because I think I'm Not the Only One who experiences this type of fantasy) when she's sleeping, the weight of which I'm sure she feels; scolding her for stupid things that don't rate scolding; letting her sleep as much as she wants (although, surprisingly, she's not sleeping anymore than usual); refusing to discuss The Appearances of the Dead with her; drinking unusual amounts of coffee and caffeinated tea...
    I thought I was going to be able to say, day before yesterday, that things were finally looking up. In fact, over the last few days I've told a sister and a friend, hopefully, that they were. But, it seems I'm not yet out of the woods.
    Reminders to me:

• $25 an hour
• Visited the old/reinstituted Adult Day Care Center here hoping that I'd feel good enough about it to leave Mom there on a regular basis, but that fell through

    Later. Not sure how much later.