Morris Friedell's Home Page

(rev. 5/31/08)

The photo is several years old--I'm 68 now. Almost ten years ago, after a year of alarming cognitive decline, I was given a "working diagnosis" of early Alzheimer's disease by Dr. Tiffany Chow at UCLA. I defied the grim prognosis, and wrote my story on this website. Whether because of my rehabilitative efforts or possibly because I was misdiagnosed I have been free from clinical dementia for the past six years. Nevertheless my memory is impoverished and my mental processing is quickly vulnerable to fatigue. I am in a sort of medical limbo.

Here's something I wrote a while ago about my "career" as a "dementia activist":

My first serious experience of memory loss occurred in the fall of 1997 when my mother was being diagnosed with dementia. I listened with special attentiveness to her conversation (but without taking notes) so that I could better understand how she was "losing it"--but I discovered that my own memory had gone south. I then started riding the diagnostic merry-go-round myself, hoping that mine would turn out to be a minor problem, say, of psychological issues with my mother. (There's even a name for this: "caregiver's dementia.") On June 24, 1998 I saw my MRI films and the evidence that I not only had a polyp in my nose but the cerebral atrophy indicative of a terminal dementing disease. I was forgetful because my brain had shrunk. I joined the Hemlock society and wrote an emotional letter to my children.

Since then, despite my Alzheimer's diagnosis, I've been able, as I never would have thought possible, to get my life back. I began studying rehabilitation, at first tentatively. I had just assumed that, since neurologists and psychologists didn't mention it, and there were no books on rehabilitation for Alzheimer's patients, and rehabilitation institutes didn't invite them, there was nothing to be done. But one thing I learned when I was a sociological researcher was to question conventional "reality." Now I have come to believe that rehabilitation can powerfully improve a patient's quality of life, allowing him or her to regain much lost ground and then maintain for years. What is needed is not an expensive institute, but some concepts which are not too complicated, the support of a good friend or psychotherapist, and lots of hope and hard work.

I'm honored that Linda Clare quoted these lines in her authoritative Neuropsychological Rehabilitation and People with Dementia (Psychology Press, NY: 2008). See also my Dementia Survival--A New Vision.

I believe that an important reason patients go downhill the way they usually do is because society sends them a devastating message that their lives are already over. In 2000 several of us conscious patients organized what became DASNI (Dementia Advocacy and Support Network International). Our members have written books and served on Alzheimer's boards. DASNI's mission is symbolized by our logo: a winged turtle bearing a forget-me-not in its beak. We stand for the human dignity not only of ourselves but of all who are old, poor, weak, disabled or incurable.

And it was in DASNI that I met Andrea. In 2002 I moved to Houston to be with her. We celebrated our 5th anniversary this year.

More of my story is told in the essays below. And I'm grateful to three authors for including parts of it in their books. David Shenk (The Forgetting, Anchor, NY: 2002) writes of my struggle to rehabilitate myself and to give others hope. Spencer Nadler (The Language of Cells, Random House, NY: 2001) describes my brief attempt to make a new life for myself in rural Montana. Finally, Christine Bryden (Dancing with Dementia, Jessica Kingsley, Philadelphia: 2005) tells how I went to Australia to join her in speaking out for ourselves and for all those whose disabilities stigmatize them as "biologically inferior."

What keeps me going? Ultimately, I want to leave behind a message for my descendents that when life pitches them a curve they don't have to curl up and fade away. They can get back on their feet and continue being the persons the Source of Life meant them to be.

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Like many persons facing catastrophic illness I have found spirituality helpful. Liberal Judaism teaches that no matter how difficult my situation I can aspire to be a "mensch," a responsible person who also knows how to enjoy life and is interestingly individual. Buddhism teaches universal compassion based on universal sympathy. It teaches that, whatever my suffering, "this too shall pass," and that the dreaded "loss of self" is, to a significant extent, the mere shedding of an illusion. Secular humanism reminds me to continue to value reason despite my mental weakness. Unitarianism provides a community where persons like myself who create their own "fruit salad" of faiths can come together. One of my goals as a dementia activist was to see whether I could draw on the wisdom of concentration-camp survivor Viktor Frankl's Man's Search for Meaning--while rejecting his questionable religiosity. I believe I succeeded in doing this.

I have felt for quite a while now that I should move on from the primacy I have given to dementia activism--regardless of my medical situation. I've been concerned with family relationships and have been open to new projects. In 2006 I was impressed by Ari Goldman's Living a Year of Kaddish. I felt his account of his participation in the ancient Jewish ritual of mourning for his father (with whom he had a strained relationship) was a powerful legacy for his descendants. It inspired me to begin writing some family memories while I still can, and gave me an interesting framework. Goldman is Orthodox, and his practice of daily prayer in a quorum of ten men is not for me. Nor did my parents go in for such things. But nevertheless I am called and challenged by the beauty and dignity in the tradition.

I recently discovered Lillian Rubin's groundbreaking 60 on Up and it's made me aware that the toxic shame too many of us elderly people feel can offer a worthy battle to fight.

In the past three years I've become aware how much my life has been shadowed by survivor guilt from long ago for failing to effectively protect my children from their mother's violence. This has been a root of the codependence I've written about in the Updates. With this awareness has come the beginnings of healing--I am optimistic about further healing and self-renewal.

Recent Entries:

Updates--2007

http://members.aol.com/morrisff/Updates--2007.html

Updates--2006

http://members.aol.com/morrisff/Updates--2006.html

Updates--2005

http://members.aol.com/MorrisFF/Updates--2005.html

Updates--2004

http://members.aol.com/MorrisFF/Update--2004.html

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The Alzheimer's Struggle:

Remarks to the 2003 Education Conference of the California Central Coast Alzheimer's Assn.

Tedious No More! (Sept., 2003)

http://members.aol.com/MorrisFF/Tedious.html

I Have a Name Given by the Sea (Feb. 2003)

http://members.aol.com/MorrisFF/Name.html

Holistic Interventions for the Personality-Rehabilitation of Brain-Dysfunctional Persons (Feb. 2002)

http://members.aol.com/MorrisFF/Holistic.html

Dementia Survival--A New Vision (March 2001, rev. Dec., 2003)

http://members.aol.com/MorrisFF/Vision.html

Awareness (assessing the quality of life as Alzheimer's Disease advances--Dec. 2001)

http://members.aol.com/MorrisFF/Awareness.html

Through the Valley--the First Two Years (Aug. 2000)

Through the Valley--the First Two Years

Onward through the Valley (Nov. 2001)

Onward Through the Valley

Christine Bryden and Morris Friedell, Dementia Diagnosis--"Pointing the Bone" (March 2001)

http://members.aol.com/MorrisFF/Bone.html

Invictus (Oct. 2000)

http://members.aol.com/MorrisFF/Invictus.html

The Loneliness of a Person with Early Alzheimer's Disease The Loneliness of a Person with Early Alzheimer's Disease

Potential for Rehabilitation in Alzheimer's Disease (June 2000)

http://members.aol.com/MorrisFF/Rehab.html

Presentation:

Morris Friedell and Christine Bryden, (Oct. 2001) Codependency between persons with dementia and their families. It is on the DASN International website.

Mini-essays:

The American Dream and Alzheimer's (Jan. 2001)

http://members.aol.com/MorrisFF/Dream.html

Eva--a parable (Jan. 2001)

http://members.aol.com/MorrisFF/Eva.html

A Meditation (Oct. 2000)

A MEDITATION

Is the "Loss of Self" in Mild to Moderate AD Inevitable? (Oct. 2000)

IS THE "LOSS OF SELF" IN MILD TO MODERATE AD INEVITABLE?

Tuesday or Wednesday with Morris (March, 2000)

http://members.aol.com/MorrisFF/Tuesday.html

Love in the Twilight Zone (Feb. 2000) Twilight

Earlier Writings:

A proposed 12 steps for Alzheimer's Anonymous (June, 1999)

"Southern Garden"--a sketch of a utopian emotional and spiritual environment for persons with early or moderate dementia: (April, 1999)

http://members.aol.com/MorrisFF/SG.html

"I Want to Keep My Personality"--drawing inspiration from Jewish tradition (July, 1999)

http://members.aol.com/MorrisFF/Personality.html

"The PET Scan Shows Alzheimer's"--some thoughts and feelings after the diagnosis (Oct. 1998):

http://members.aol.com/MorrisFF/AD.html

"The Road to Alzheimer's"--excerpts from my journals in the months preceding diagnosis

http://members.aol.com/MorrisFF/Road.html

"Incipient Dementia--A Victim's Perspective"--written when the likely diagnosis seemed FTD (July, 1998)

http://members.aol.com/MorrisFF/Incipient.html

"Peachblossom "and "The Voice"--essays on imaginative spirituality written in 1997 before I had major symptoms

http://members.aol.com/MorrisFF/Peachblossom.html

Writings on Rehabilitation by Linda Clare:

Linda Clare is an internationally-recognized authority on dementia rehabilitation.

Cognitive Rehabilitation for People with Dementia (2003, 6 pp.)

Rehabilitation for People with Dementia (2001, 18 pp.)

LINKS to Inspiring Pages:

Here are some websites of others in the same leaky boat:

Christine Bryden http://www.christinebryden.com/

Mary Lockhart: http://www.angelfire.com/ok4/mari5113/index.html

Chip Gerber http://www.zarcrom.com/users/alzheimers/chip.html

Jeanne Lee http://www.angelfire.com/hi4/jleehawaii/index.html

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