TEDIOUS NO MORE!
by Morris Friedell, Sept., 2003
(Forthcoming in M. Marshall (ed.), _Think Rehab_)
The caregivers are doing their darndest--they want to be like any other people, and they deserve their moments, their times--their times away from us, because it can be very tedious. We can be very tedious. I can be very tedious, and I'm aware of that.
---Cary Henderson, _Partial View: An Alzheimer's Journal_, 1998, p. 82
Unfortunately Cary's lament is not merely a figment of his low self-esteem. Cohen and Eisdorfer, in their authoritative _The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders_ (2001, p. 96), go so far as to declare to caregivers: "Regardless of your personality, professional training, or background, it is hard to be close to the patient for long periods without feeling upset or uncomfortable." The impact of this repulsive pronouncement becomes evident if we substitute physical disability for mental: "Regardless of your personality, professional training, or background, it is hard to be close to a person in a wheelchair for long periods without feeling upset or uncomfortable." To participate pleasantly or productively in social interaction is a major challenge for us PWiDs (persons with dementia).
We're not quite social "lepers." Not being wrapped up in our own important thoughts, we can often tune into others' feelings and be warmly responsive to them. TABs (temporarily able-brained persons) enjoy this, and we can be glad to give them a few pleasant moments. But then we must be wary that they don't patronize us.
"I am not so sure I would hope for a world without dementia, for in a world without dementia we would be without the ones we love who have taught us that remembering and planning and naming and knowing are not the key activities of human life, but rather that feeling and being and touching and singing have enormous riches and depths that we are often too busy to relish in our race to rationality." (quoted in Killick and Allen, 2001, p.62)
Men used to often talk this way about women, and failed to understand why the women were not grateful.
Carole Mulliken, a PWiD leader of DASNI Dementia Advocacy and Support Network International summed up as follows the social position dementia has thrust us into: "a pet, a mortgage, and yesterday's laundry."
No wonder we tend to withdraw and isolate ourselves. Diagnosed with early AD in 1998, I mostly live in a social cocoon, interacting with my wife (who is disabled like myself), an old friend, and a paid therapist. When I venture out, it is usually on the Internet--not in so-called real time. I don't want to be tedious, I don't want to be pitied, and I don't want to be patronized.
But is it a cocoon I live in--or a ghetto? One of the lessons of the Holocaust is to resist ghettoization. "Never again!" was an impetus for the Universal Declaration of Human Rights." Its article 27 declares: "Everyone has the right freely to participate in the cultural life of the community." In line with this we have women's "take back the night" campaigns, wheelchair-accessibility, TV programs with sign-language. It is time for the cognitively impaired to cast off their shame, come out of the closet, and fight for their dignity. "If not now, when?"
This article is going to develop some ideas that might help me and might help others in similar situations. The resultant successes and failures will be the subject of a future article.
Four years ago I wrote Potential for Rehabilitation in Alzheimer's Disease (Friedell, 2000), where I proposed that the qualitative symptoms of mild to moderate AD--disorientation, gross forgetfulness, and loss of abstraction and judgment--are susceptible to the rehabilitative interventions used for traumatic brain injury. I have applied these methods to myself and have reduced my Clinical Dementia Rating (CDR) from 1 in 1999 to 0 in 2002 despite MRI evidence of disease progression (but there's no way to predict how long I've got). A basic rehabilitative concept is to relearn activities using a greater number of easier steps, i.e., more slowly. Unfortunately, in daily social life slowness causes problems.
Mitchell and Jonas-Simpson (2003) interviewed persons diagnosed with early-onset dementia and compiled an excellent summary of their experience. They write of "Slowing Rhythms": "This theme emerged from persons' descriptions of experiencing faster rhythms around them like the world swirling about, while at the same time sensing one's personal rhythms as slower paced. For some it was not until they were ... in groups or in situations outside their familiar settings that they realized how slow they had become. Others described watching themselves in a distant way, as if seeing themselves in a movie or through a window. Persons offered examples such as no longer having a quick wit or spontaneous joke.... Some persons described feeling frustrated and overwhelmed by the noises and chatter of a fast-paced world...."
It is tempting for PWiDs to cope by acting like "shells": participating appropriately but passively, reactively, or superficially. For, as far as I know, we can't recover the processing speed that would allow us to really regain normalcy. Fortunately, normalcy is not important for its own sake. Normal people want, for example, to be somebody or to have fun, not just to be normal. Normalcy is, as it were, a platform for life rather than life itself. So maybe substitutes can be fashioned. "Why be normal?" says a humorous lapel-button.
What, then, is to be done? I have found some well-reputed self-help books which advocate using "baby steps" as part of a program to improve one's position in life and I will combine their ideas. Their areas of concern often seem far removed from our topic but nevertheless they offer intriguing possibilities. Of particular interest are Sinetar, _Do What You Love, the Money will Follow_ (1987) and Davis, _The Divorce Remedy_ (2002). They are written for people who find themselves enmeshed in complex situations (in the domains of work and love, respectively) where their behavior is incongruent with their inner being. Baby steps, requiring minimal cognitive resources, can be part of a program of self-change which recruits support from the environment.
Perhaps my ultimate inspiration comes from the Tao Te Ching, the ancient classic on winning through weakness: "A journey of a thousand miles begins with a single step."
Here is an overview of my 6 steps--references for them are in the Appendix.1 (Those familiar with the steps of Alcoholics Anonymous will note a vague resemblance.)
The first step, SELF-AWARENESS, is to "clear a space," somewhat detaching yourself from the ongoing situation, so it can be seen in perspective and worked with creatively. This means putting less energy into doing what you have been doing, and coping with the feelings that may then arise, i.e., to withdraw somewhat, if you are not already withdrawn. Rather than ignoring the current reality of the difficult situation or blindly attacking it, it is necessary to desire change but accept your powerlessness to make rapid changes.
Second, SELF-REFLECTION: in the space in your life cleared by the first step, get in touch with what you really value, who you really are, what you really want, and your reasons for hope. What story arises from your memories, your dreams, your vision?
Third, SELF-DETERMINATION: energize your vision by committing to work toward it every day. Record your work in a journal.
Fourth, SELF-APPRECIATION: at first in small, safe, symbolic ways, express
and celebrate who you are. This is primarily a matter between you and yourself.
Fifth, SELF-EXPRESSION: start taking baby steps toward your dream of expressing your revitalized self in social interaction and being "tedious no more!" And (where appropriate) tell others about this project, in a manner that orients them to your self and your vision rather than demands their support. Act as if you expect their respect but not agreement. And look for friends who do support your quest.
Sixth, SELF-ACCEPTANCE: let the dust settle, relax and be centered before returning to step 1 and beginning another cycle.
Each step is more difficult than it looks, but it is only the fifth step that poses particular difficulties for persons with mild dementia, since it is the only one focused on real-time performance. Thaddeus M. Rauschi's excellent _A View from Within: Living with Early Onset Alzheimer's_ (2001) clearly illustrates this. Dr. Rauschi exhibits an emotional intelligence and spirituality which gives him high marks on the qualities required by steps 1, 2, 3 and 6. As for step 4, he writes: "Very often I feel so normal, especially when I have been working alone on a project or working at writing (this book for example) at my own pace.... While I take a morning shower (it has always been my 'think tank') and have these wonderful creative ideas and plans, I feel I am so much myself...." (p. 28) But alas, when he goes out into society (step 5): "I can't get the words to participate spontaneously in the interaction, or at least participate well. I can't think fast enough to follow the ideas...." (p. 75) He has found some ways to cope--hopefully the framework presented here could help make them more systematic and effective.
Jeanne L. Lee was diagnosed with early-onset AD in 1996. Her _Just Love Me: My Life Turned Upside-down by Alzheimer's_ (2003) recounts how she struggles with quiet heroism to maintain her life. Here is how she confronts an issue pertinent to step 5. Jeanne is very much a "people person," who used to "prefer groups of people, the more the merrier. Now I prefer not to have too many people around because of my difficulty with group conversation.... Something that I ... find disturbing ... is that I have to frequently interrupt, because, if I don't, by the time they're finished with their story I've forgotten what I wanted to add." (p. 32) Jeanne has learned to do this tactfully, but it's still hard for her to avoid uncomfortably feeling that she is rude.
As for myself, when I am in Jeanne's situation and am deciding whether to interrupt, I might infer from my interlocutors' tones of voice (to which AD has increased my sensitivity) that their contribution is winding down, and I can safely memorize my contribution while practically tuning them out. But I risk being mistaken and finding that I end up losing both the conversational thread and my potential contribution.
To further illustrate my belief that rehabilitation is possible, I will draw on Gottman and DeClaire _The Relationship Cure_ (2001). His book is full of examples where painful disconnection between persons is overcome through sensitive and clever conversational initiatives--difficult, of course, for us PWiDs whose minds go blank under stress. However, persons with mild dementia are notorious for learning the social skills to disguise their condition. And, having observed Yehuda Ben-Yishay's work (2000) at Rusk Institute with patients with brain injuries much more severe than mild AD, I believe this capacity for learning can be extended to compensate for deficits, not merely disguise them.
Here is an example from Gottman and DeClaire (2001, pp. 133-134) of a situation that might be problematic for PWiDs. It shows a failed connection between a "jester," one who specializes in conversational contributions that are entertaining, and a nest-builder, one who specializes in contributions fostering bonding and affiliation.
Nest-builder: I can't believe you told that joke in front of the board members. What if you offended somebody?
Jester: Oh, relax! People laughed didn't they? That's what matters.
(Exchange ends on an uncomfortable note.)
Let's assume the nest-builder is a PWiD. (PWiDs often develop their nest-building skills and interests to compensate for the loss of their more aggressive competences.) What would it take for her not to be shoved aside by an obdurate TAB jester, but to stand up for her concern? (Another pertinence of this example is that PWiDs are newly being encouraged to participate on the boards of Alzheimer's Associations.) Gottman proposes the nest-builder rejoin with:
Of course they laughed. You've got such a wild sense of humor! but I guess it's just the way I'm wired--I'm always worried about whether something might hurt somebody's feelings. Do you think it would be all right if I checked in with a few key people to see if any apologies are needed?
Jester: Sure, if that will make you feel better, go ahead.
(Exchange ends on a peaceful note.)
The nest-builder is (1) mirroring the jester's positive intent, then (2) remarking on the jester's corresponding enduring attribute. Then (3) the nest-builder, a little disarmingly, self-discloses about her own temperament, and (4) a bit tentatively proposes a typical nest-building action. (Note that, fortunately, none of this requires the nest-builder to remember any details of the joke or to make complex improvisations on the spot.) The social skill involved requires training, of course. The four steps can be practiced separately and then combined. Step 2 is an important part of the Rusk program, and their impressive results suggest that the full package ought to be practicable.
Although it is not usual, there are sufficient instances of PWiDs making pleasant sustained social connections with TABs through mutual good will, understandings and adjustments to verify that "Tedious no more!" is a realistic goal for us, just as it is for developmentally disabled persons. As I indicated above, by referring to the Ghetto and the Holocaust, this project has overtones transcending the domain of comfortable sociability. The southern black struggle to sit at lunch-counters was more than a matter of nutrition. Whenever a person who is weak affirms his or her human dignity everyone else who is poor, weak or oppressed stands to benefit.
VI. APPENDIX on the six steps.
Compare the Alzheimer's Anonymous program I sketched.
Step 1--self-awareness: Brach _Radical Acceptance_ (2003) is thoughtful and readable. It is written from a Buddhist perspective. See also Davis, _The Divorce Remedy_ (2002) and Gendlin, _Focusing_ (1982).
Step 2--self-reflection: I suggest Covey et al. (1994).
Step 3--self-determination: Setters, _Trophy Wives_ (2002) has an interesting treatment of this. (PWiDs aren't the only ones who need to struggle to avoid being "surface.") Judd (1999) is good on journaling in neuropsychological rehabilitation.
Step 4--self-appreciation: I suggest Sinetar (1987).
Schnarch _Passionate Marriage_ (1997) is good on constructive self-expression in tense relationships (step 5), and on the systole and diastole of challenge (the first 5 steps) and comfort (the 6th step). Sex is Schnarch's topic, and here TABs are usually as awkward as PWiDs are in other areas.
1 A general step by step approach to rehabilitation is presented in my "Dementia Survival--A New Vision" (2003).
Ben-Yishay, Y. "Postacute Neuropsychological Rehabilitation," in Christensen and Uzzell (eds.) _International Handbook of Neuropsychological Rehabilitation_, Kluwer Academic/ Plenum Publishers, New York, 2000.
Brach, T. _Radical Acceptance_, Bantam, New York, 2003.
Cohen, D. and Eisdorfer, C. _The Loss of Self (Revised and Updated Edition)_, Norton, New York, 2001.
Covey, S. et al., _First Things First_, Simon & Schuster, New York, 1994.
Davis, M., _The Divorce Remedy_, Simon & Schuster, New York, 2002.
Friedell, M, "Potential for Rehabilitation in Alzheimer's Disease," was
presented as a poster at the World Alzheimer Congress in Washington, D.C, 2000.
Friedell, M. "Dementia Survival--A New Vision," _Alzheimer's Care Quarterly_, April/June 2003, pp. 79-84; a version is posted at http://members.aol.com/MorrisFF/Vision.html.
Gendlin, E. _Focusing_, Bantam, New York, 1982.
Gottman, J.and DeClaire, J. _The Relationship Cure_,
Henderson, C. _Partial View_. Southern Methodist University Press, Dallas, 1998.
Judd, T. _Neuropsychotherapy and Community Integration_, Kluwer Academic/ Plenum Publishers, New York, 1999.
Killick, J. and Allan, K. _Communication and the Care of People with Dementia_, Open University Press, Philadelphia, 2001.
Lee, J. _Just Love Me_, Purdue University Press, West Lafayette IN, 2003.
Mitchell, G. and Jonas-Simpson, C., "Countering Stigma with Understanding: Listening to Persons Diagnosed with Dementia," unpub. mss., 2003.
Rauschi, T. _A View from Within_, Northeastern New York Chapter Alzheimer's Disease and Related Disorders Assn., Albany NY, 2001.
Schnarch, D. _Passionate Marriage_, Henry Holt, New York, 1997.
Setters, C. _Trophy Wives_, Xlibris, www.Xlibris.com, 2002.
Sinetar, M. _Do What You Love, The Money will Follow_, Dell, New York, 1987.