Wednesday, September 17, 2008

Fear of frailty

Wendy Lustbader has written some extraordinary things about aging, especially about fear of frailty and the dependence it engenders. I hope to soon read her book, Counting on Kindness. An excellent discussion of the book can be found in "Counting on Kindness - The Dilemmas of Dependency," an article by P. Jones in Aging, Spring 1996. Excerpts include:
"Engaging life requires an active decision; letting ourselves languish requires little effort," Lustbader remarks, but she also cautions that "we must stop clinging to independence as if it were the only meaning of strength."
.... Lustbader quotes Ralph Waldo Emerson's observation that "we do not quite forgive a giver. The hand that feeds us is in some danger of being bitten."

.... While some of the book emphasizes ways to detoxify emotions and solve problems relating to power and dependency, many chapters also discuss the possibilities for emotional or spiritual revival that illness and frailty hold. Lustbader comments that for most of our hurried pressured lives, "obliviousness comes down around us like a curtain" and there "are very rare moments when the curtain is pulled aside and we are graced with a vivid sense of aliveness." She notes that Virginia Woolf called these interludes "moments of being," which Lustbader believes many people may experience for the first time, or more frequently, in their 70's and 80's. There is time to notice the intricate patterns of tree branches on winter afternoons, to linger over a fine sentence or passage in a novel, to be touched by someone you have only recently met. "Moments of being," of aliveness, are what make life worth living, and they can become more possible as life slows down after retirement.
Westbader summarizes the dilemma of dependency in a short article, variously titled "At the Mercy of Strangers" [Yes Magazine, 2005[ and "Thoughts on the Meaning of Fraility" (Almost Home). She writes, in part:
We have come to fear frailty more than death. We imagine being “put” in a nursing home, like a jar on a lonely shelf. Will a parade of paid strangers take care of me someday? Frailty coupled with abandonment has become our most dire existential dread.
. . . .

Unless I can let my caregivers know who I am, the eyes looking at me will merely reiterate my physical deterioration. They will perceive only my gnarled fingers and the stark metallic fact of my wheelchair. Just another old lady. Much is presumed on the basis of such surfaces. I know I will recoil from my helper's singsong voice, that well-meaning tilt of her head, her every gesture that exudes kindliness. All of this will consign me to a category, “the frail,” the boundaries of which will be difficult to breach. Are there ways to maintain the self in such situations? Perhaps we have the most to learn in the places we least want to reside. The “difficult people” in nursing homes are those who refuse to be diminished. I have watched them demand, threaten, and rage until their requests are heeded. Their dignity causes trouble in systems of care meant for efficiency. They insist on the prickly assertion of self in places where idiosyncracy is inconvenient . . . . .
Her writings express so well what I have observed and struggled with over this past summer and fall with my mother, who, at various times has refused to eat any food that is not a favorite or not cooked the way she wants, raged at caregivers and physical therapists (even the best and most compassionate of them), and lain awake at night loadly moaning or crying, even when she knows that no one will respond (supposedly because there is nothing that can be done for her pain beyond what they have done) and when she knows it will disturb others' sleep -- not to mention the way she uses my brother and I, trying to force us into a game of "good cop - bad cop" or turn us against each other, one being appealed to for sympathy and support and the other cast as an onerous taskmaster -- roles or allegiances switching depending on her mood of the moment.

Part of the solution to these kinds of problems is supposed to be better communications and understanding among the frail, the caregivers, and the family. Easier said than done, especially when the dependent person is so wrapped up in rage and denial that she does not want to deal with anything or anyone realistically or when the family or caregivers are at the end of their rope. But, of course, it works both ways, and it can be really difficult to fully comprehend the nature and extent of the dependent person's frustration and need to assert herself in anyway she can, even when it ends up hurting more than helping her obtain any practical results or improvement in the situation.

In addition to trying to teach persons on all sides more empathy and understanding, Lustbader talks about the need for spirtual life and how and why dependency or fraility does not have to be a death sentence. Although supposedly out of date, a lot of Aging experts (and laypersons who think they know best) focus on getting "seniors" active and engaged. While not bad in itself, when activity and independence become the sole goal of "successful" aging, it ignores differences in individuals, the fact that some will eventually be forced to become less active and more dependent, and the degree of personal autonomy available may be severely limited by economic and geographic factors. As one author has written,
A second major theory of aging, referred to as "activity theory", proposed that people age most successfully when they participate in a full round of daily activities, that is, keep busy (Lemon, Bengtson & Peterson (1972). This theory seemed to explain the surge of volunteerism and senior activism in the 1960s and 1970s and may have been partly responsible for public policies which underwrote the development of senior centers and other recreational facilities in that period. Today, the theory has been discarded by gerontologists who view it as too narrow in its implied advocacy of one particular lifestyle. Empirical research has demonstrated the heterogeneity of older people, including many people who prefer less structured lives or do not have the health or means to pursue a full schedule of activities. Nevertheless, activity is widely touted by older adults themselves as the key to successful aging, so much so that gerontologists have dubbed this philosophy "the busy ethic" (Ekerdt, 1986).

. . . .

Diverging from works of the 1980s that emphasize "maximizing independence" or "enhancing autonomy" in the frail elderly, Lustbader (1991) described the possibilities for finding satisfaction and meaning even in a state of dependency, including moments of vivid aliveness, true intimacy between family members, and spiritual revival. . . .
From Successful Aging: What does the "good life" look like?
Vol. 1, No. 3, Summer 1996, Concepts in Gerontology, by Lucille B. Bearon, Ph.D.. reprinted at NC State University, Forum for Family and Consumer Issues.

It truly is not for me or my brother to decide what is best for our mother, but it seems that when dealing with someone in a situation where dependency is inevitable (for someone often not strong enough to get in and out of bed or go to the bathroom by herself, even as she used to with a walker), there must be more than just pushing to try to make her as self-sufficient as possible. It must be very difficult for her or anyone, especially in our self-reliant American culture, to turn to others for help and accept the frustration and sometimes humiliation that comes with total dependency, but, how is happiness or joy of any kind possible if one cannot trust some caregivers, accept help without shame or anger, and, finally, have some trust or faith in God to see one through?

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