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Posted: September 26, 2004

Professional Caregiving

For Dementia Patients, Life Becomes A Journey in the Land of Oz

Last week, I told you about a talented, eloquent woman who, at the young age of 56, is facing dementia with strength and energy while playing a leadership role with an international support network for those afflicted with memory impairing conditions. As a result of our conversation after the interview, I realized that her proximity to Jefferson City, the capital of Missouri, made her addressing a Caregiver Recognition ceremony I was coordinating as part of my role with the Missouri Adult Day Care Association, a possibility.

I was so moved by Carole Mulliken's ability to express voices previously under-represented, for those suffering with dementia, that I invited her to address our audience However, her driving ability is not what it once was, so she offered instead to write a letter that I would read aloud.

I have Carole 's permission to share her letter/speech with you. You can share this, with acknowledgment of the writer, with your colleagues and family caregivers, as you may wish.


No Place Like It

It is a privilege to be able to speak to you on behalf of an international group of people who have dementia, the Dementia Advocacy and Support Network International. Because of our early diagnoses and of the improvement the new cognitive drugs have given us, we consider ourselves to be among the fortunate few who are still able to speak on behalf of others with dementia who no longer can.

On behalf of people with dementia in the United States, Canada, Australia, New Zealand, France, England and Brazil, please let me tell you what dementia is like and therefore, how much we appreciate you, our personal caregivers.

Those of us who have dementia have experiences much like Dorothy 's in the Wizard of Oz. You remember Dorothy? A tornado came up in Kansas and scattered everything at Auntie Em's farm. It blew poor Dorothy and her dog, Toto, all the way to Oz. In Oz, everything was different. Witches and Munchkins lived there. Flowers glittered in strange ways, and the apple tree griped when she tried to pick an apple. The bewildered Dorothy confided in Toto. She lamented, ?We're not in Kansas anymore.?

As she struggled to understand her much-changed world, Dorothy became desperately homesick for the familiar old Kansas farm and her familiar, loving Auntie Em'. She missed them so! Dorothy 's only goal became to find her way home.

Dementia is like that. Those of us who have dementia are different. The world is different. People relate to us differently. We feel scared and very much alone. Whatever frustrations our former lives held, at least they were familiar. Like Dorothy, we -- desperately -- want to go ?home.? At home, we knew our way. At home we held valuable jobs. At home we had friends. At home we had families. We want to go HOME. But how to get there?

We also need a Yellow Brick Road. And maybe that is why we wander. We wander and rummage and hoard whatever we find that reminds us of home. We can't find the yellow brick road, and we can't find the Ruby Slippers to travel it.

Dorothy discovered that she had always had within herself the brains, the heart and the courage to get home. We don't. In fact, if you could only see how shrunken and shriveled our brains have become and how much we despair, you would be very proud of us for having the courage to carry on at all. We know we will not get better, but we do carry on, and mostly because of you.

You see, you are our scarecrow, our tin man, and our lion. You lead us along our way. More than that, you are our Yellow Brick Road; you are our Ruby Slippers; and you are our Wizard who leads us so very close to our Home.

We are aware of how much your world has changed, as well. We are aware of the pain we have caused you. We know you miss us, and we would be different for you if only we could. We would give you back your life, your partner, your lover and your farm. We would set you free and give you all of Kansas. And we would work for the rest of our lives to fulfill your every dream.

We will thank you eternally for your care and self-sacrifice. We love you as always ? and more!

Carole Mulliken

Vice President

The Dementia Advocacy and Support Network International


I am so moved by the simple clarity of this letter. What did you, readers, think of it? What thoughts did it jog in you? Let me know.

And please pass this column on as a reminder to your colleagues and caregivers that our best work is in seeing the essence of the person, through the fog of their struggle, the chains of their challenges, knowing that we are the link that brings them closer to the ?home? than they can get on their own.


Sylvia Nissenboim is a licensed clinical social worker and who has been working in the field of adult day services in the St. Louis area. She is the director of four adult care and enrichment centers for the American Red Cross and also operates a personal and professional coaching firm, LifeWork Transitions, specializing in caregiving concerns, adult day care management and other aging services, such as virtual coaching and family care giving support groups. She co-authored The Positive Interactions Program, is a national speaker, and has served as president of the Missouri Adult Day Care Association and as a member of the Missouri Governor's Advisory Council on Aging..

© 2004 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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