Writer, co-producer, daughter Berna Huebner talks with us about her remarkable film
which documents how art helped her mother in the struggle to live with Alzheimer's.
Laurel Zuckerman : Berna Huebner, millions of families struggle every day to care for loved ones stricken with Alzheimer's. Seeing your beautiful documentary, “I remember better when I paint” I am struck not only by the remarkable effort you made to help your mother by reintroducing art into her life, but by the incredible achievement of turning this personal struggle into a film which Alzheimer’s associations all over the world have embraced. At what point did you know that you would write and produce a film? How did this come about?
Berna Huebner : It has been a journey to think about Alzheimer’s in a new way. In the moments when she painted, my mother truly seemed to come alive. That is why we wanted to share these experiences—in the hope that they will help show how our society can address the challenge of Alzheimer's and other memory problems, not only through the search for new medical treatments which might prevent or at least slow the progression of the disease—as important as they are—but also through the healing, communicative power of the creative arts.
With the help of her doctor, the art students who worked with her and a friend (Mary Louise Stott), I met our film director Eric Ellena and he encouraged us to share our story—and said he would like to produce a documentary together.
LZ : Early in the documentary, we learn that your mother had completely stopped speaking and grown so agitated it became difficult to care for her. You arranged for students at the Chicago Art Institute to work with her. It took months to get a first result. Where did you get this idea? How did you know it would work? What made you continue?
BH : As my mother, who had been an artist, struggled with Alzheimer’s in her later years, I asked her if perhaps she might want to paint again. And she had said one day, “Oh yes! I remember better when I paint.” With that phrase ringing in my mind, I became determined to somehow bring my mother back from her detached state. And so I enlisted the help of her doctor. And with his help and the efforts of a dedicated group of art students, and with strong encouragement from our family, my mother, who had used the name Hilgos to sign her work, picked up a brush at age 90 and began to paint again. Through painting and sculpting, she emerged from her listless state and reconnected to the world around her. Her Alzheimer’s symptoms eased, at least in part. She spoke, she danced, she played catch and sculpted—and she painted and painted and painted.
LZ: One of the most exciting discoveries for me was the idea that by soliciting the parts of the brain that still function—sensibility to art, emotion--one can touch and connect with what remains profoundly human. There is a kind of awakening—not just for the Alzheimer’s patients, but for the people dealing with them, family, caretakers, doctors. Did you know about this when you started out?
BH : I knew very little about Alzheimer’s. My mother’s doctor encouraged us to continue to work with my mother. I did not really have any understanding of the disease nor did I know that there were still parts of the brain that could still function. But when I saw the awakening in my mother I decided I wanted to help those who are as afraid of Alzheimer’s as I was, after my mother’s diagnosis—but now are looking for ways to help cope with the disease. Alzheimer neurologists and other doctors have helped us to understand why such therapies can be so helpful, pointing to the fact that they awaken areas of the brain that have not been affected by the disease.
LZ : What were your goals ? Had you made a film before? Did you have any idea how difficult it would be?
BH : Our goal and hope is that this intergenerational story and the stories of others in this film will help educate and raise awareness of those who are touched by Alzheimer’s.
I had never made a film before but was director of research for a governor and then Vice President and I think that helped prepare me to do the necessary research for the film. The information gathering has never seemed very difficult. It was always interesting and exciting.
LZ : How did you write this film? Did you have an overall idea of what it should be, or did it evolve organically as events progressed and you met more experts. Did you discuss it with your mother?
BH : Writing the film evolved organically. I was never able to discuss it with mother. But I did find a letter from mother written before her Alzheimer’s saying that she had such a wonderful and healthy life that if she could ever help the medical world she would like to do that. So we decided we could share her amazing story.
We found other stories similar to the one of mother. I had attended art and health as well as Alzheimer’s conferences. I had worked with mother’s doctor who had encouraged us to put the story into written form. The art students who worked with mother were so dedicated and we continued together to do research and write up what we had discovered. We visited nursing homes and day care centers. We contacted museums where people with Alzheimer’s were able to look at and discuss the masters they were seeing. For a five year period we collected research information on all facets of Alzheimer’s: medical discussions, books, press clips and anything we could find and kept track of that information. In fact the director asked us to put together a resource book.. which we had already started. A group of very dedicated students helped me put that information together with the help and guidance of Dorothy Seman, a director of a day care center in Chicago, whom I had met at an Alzheimer’s conference.
LZ : “I remember better when I paint” is available in both French and English. Olivia de Havilland performs the English narration. What was it like working with her? How did you convince her to participate?
BH : Olivia de Havilland heard mother had Alzheimer's and that since so many of her friends had died from Alzheimer's, she volunteered to help by doing the narration. She is wonderful and great fun to work with.
LZ: How long did it take you to go from the idea to the finished film?
BH : The idea for the film was that of a friend. It originated in the spring of 2006. We have just completed the documentary in December 2009. The original project with my mother began in the fall of 1995 with her doctor and the art students.
LZ : Many of us have projects we would like to do, and few of us manage to see them through. What are the key skills and qualities needed to realize such a project?
BH : First one needs an idea and then I think friends and mentors and a sense of inspiration, all helping one see the connection and path to realize the project.
LZ : So often Alzheimer’s overwhelms the family. In any extremely difficult situation, you helped your mother and created something remarkable in the process. Where did this positive energy come from?
BH : I think it came from mother’s original words “I Remember Better When I Paint”. Her words guided me to speak to her doctor. Then her doctor helped connect me to the art students… and then the path just continued.
LZ :The documentary is being praised as a reference source in the use of non-drug therapies for Alzheimer’s. Experts from all over the world are interviewed in the film and many attended the film premier. How did you achieve this? How was this organized?
BH : It evolved and the wonderful Hilgos team was able to find mentors to help us. Filming was done in many parts of Europe and the US showing Alzheimer’s patients focusing and reconnecting as they paint, visit the Louvre in Paris, the Art Institute in Chicago and the Phillips Collection in Washington DC, and even enjoy the Big Apple Circus in New York.
Among those featured are Yasmin Aga Khan, president of Alzheimer's Disease International and daughter of Rita Hayworth who had Alzheimer’s. The documentary also interviews renowned neurologists who explain how creative activities engage areas of the brain that are not damaged by disease and thus help reawaken a sense of personality, identity and dignity. Doctors interviewed include: Dr. Robert Butler, founding director of the National Institute of Aging; Dr. Sam Gandy of Mount Sinai; Dr. Robert Green of BU; Doctor Bob Stern of BU; Dr. Gene Cohen of GWU; Dr. Barry Reisberg of NYU and Dr. Avertano Noronha of Univ. of Chicago; Dr. Lawrence Lazarus formerly of Rush Presbyterian Chicago.
LZ: What next?
BH : We would like to continue our student play, “I Remember Better When I Paint,” in classrooms as an educational exercise, and we would like to expand our museum and school-based project, where art students work with people having memory problems in more and more communities.
I Remember Better When I Paint: Treating Alzheimer's through the Creative Arts is now also available on Amazon.
Berna G. Huebner is the founder of the Hilgos Foundation in Chicago, Illinois which supports and encourages the ongoing process of artistic creation with people who have different forms of dementia including Alzheimer’s