Mom & Me Four Archive

    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.