“Dana, am I going crazy? You would tell me if I had lost my marbles wouldn’t you?” I’ve heard these questions many times. Repetition. Anyone who lives with Alzheimer’s knows from repetition. As her rudder, I always supplied my mother, Alice, with the same steady answers. “No. You’re not crazy. You have Alzheimer’s Disease so you can’t remember what just happened.” “Oh. I forgot. What a lousy thing to have.” “Would you like a cup of tea?” “Okhh, I would love a cup of tea.” This ritual soothed us both. As an anthropologist, I know from ritual and how it uses repetition to soothe worries, to fill in the unknown, to make things better.
I’ve asked medical students to consider the ways that rituals, repetitive actions with symbolic meaning, heal. What do the white coats they always wear, or the repetitive sequence built into the ritual of the physical exam, say to their patients? Hand washing protects from germs, but it is the white coat that grants permission for those cool clean hands to linger and squeeze the soft vulnerable throats of a sick person clad only in a loose gown. White coats, the disinfectant bite in the air of the exam room, the rustle of the roll of paper on the exam table; these never fail to transform my mother into to a trusting patient. Even in the thick of Alzheimer’s, these clinical rituals have somehow always helped her find her marbles.
Endless repetition of questions alone does not make for a ritual. But add a dose of symbolism, a hero or two, and a ritual is born. Our three grown sons joined my mother, Peter, and me, for dinner only on occasion. At almost every meal she repeated her question: “Where are the boys?” For weeks, Peter gamely fielded the question with all kinds of stories about who they were with, or how they got where they were. But the breakthrough moment, the transformation into ritual, took place when he typed up a little story, just a paragraph, about each son. Below the boys’ bios, he added pithy quotes by some luminary, such as Mozart: “Love, love, love, that is the soul of genius.” When she asked, “Where are the boys?” we gave her the paper. The magic of reading neat typed text, the sheet of paper, a dash of Mozart, the silence while she read, satisfied her as none of our verbal exchanges ever could. “Thank you. This is very helpful. What a good idea to write this up.” Then with the paper beside her, the repetitive questions settled down for the rest of the meal, till it was time for a cup of tea. “Okhh, I would love a cup of tea.”
Aliceheimer’s
danawalrath 
Beautiful, Dana, how you weave it all together.
Thank you, Mary. A cup of tea can do that!
Fabulous! Lessons in care taking.
Thank you, Sarah. We learned a lot along the way!
We just put my mother in law today in a “memory care” facility (love these names) – but you know, it’s the comfort of repetition there that works. And the company. Suddenly she’s not the lonely “wanderer” (in the old place) – now she’s with friends.
I am thinking of you and yours in this time of transition, Janet. But you are so right, when the time comes, the safety, the predictability, and above all, the peers, can make this move a positive step.
I had to laugh when I saw the title of your post. I too have written about “Alice Heimers”.
I’m going to use your idea of the written report. We also get the question, “Where are the kids?” and my mother still loves to read, in an Alzheimer-y sort of way.
And finally, your artwork is fantastic! Are you making a book?
Thanks so much for your kind words, Sally! I will look for your “Aliceheimer’s” stories! And I am so glad the written report seems like something that will bring some comfort to your dinner table. Each of the drawings I’ve been writing to are part of a sketchook that I made for the Brooklyn Art Library’s Sketchbook Project that tells a single overarching story. But now, with writing in response to each of the drawings I can see it becoming a differnt kind of book. I am also working on a graphic memoir, telling another layer of the story in classic cartoon panels. Pictures make it all the more accessible for the Alzheimer’s reader!
Your details about a patient’s visit with a doctor gets to the essence of how vulnerable patients are able to trust their care givers. Beautiful piece, Dana
That trust is a beautiful thing, Janice, as you know from both sides!
Dana, your Alice is becoming as real and beloved to me as my own Alice. Once again I’m just stunned by the love that goes into this work and also the way it speaks to us all about truly important things. I love the pot of tea in the center of the image and at the center of the story. I truly can’t wait to see what you do next.
Thanks so much, Andrea. For me finding the story in each drawing has been fasciniating. A way into the subconscious. When I made the image back in December, I remember finding the glorious yellow lollipop and knowing it was a teapot, but I didn’t know that it was the center of this story. I am so glad that it speaks to you of love and the other big ones.
Thanks so much, Andrea. For me finding the story in each of the drawings has been fascinating. When I made this drawing/collage back in December, I remember finding the glorious yellow lollipop and turning it into a teapot. I did know that tea would be the center of this story. I am so glad that it speaks to you of love and the other big ones
Dana,
I found your descriptions and experience very moving and inspiring. I am working on finding ways to help people with dementia find hope and possibility through the use of non drug, noninvasive techniques and would certainly like to have your help in letting people know about these options. Please look at http://www.quietmindfdn.org/clinicaltrial to see what we are doing. If you think its something you can support please send me a note.
Best,
Marvin Berman PhD, President
Quietmind Foundation
Thanks for your kind words, Marvin. I am definitely interested in the whole range of healing options. Globally, people are rarely constricted to a single modality. They keep searching for solutions to suffering and use whatever works for them. I look forward to learning more about you are doing.
Oh Dana…It always surprises when you describe yourself as an anthropologist because that bit of higher knowledge seems like such a natural extension of you as a woman, a daughter, a mother and writer. The world is such a better place with you in it.
Thanks so much, Linsdey! Identity is fascinating that way. We all wear so many hats. May all our hats be comfortable!