Please read this letter by a young woman with early onset dementia who could not be present for a keynote at a caregiver recognition ceremony we in the Missouri Adult Day Services Association coordinated a number of years ago.

It is meant for the caregivers of persons with dementia.  Clearly, she is an eloquent woman, who at too young an age, is facing dementia with strength and energy,  and playing a leadership role with the Dementia Advocacy Support Network International, in helping express the interests and concerns of those afflicted with memory impairing conditions.

I have her permission to share this with you. You can share this, with acknowledgment of the writer, with your colleagues and family caregivers.

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 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, VP

The Dementia Advocacy and Support Network International