When my husband was diagnosed with Alzheimer’s in 2010, I did not know how we were going to get through the ordeal ahead of us. Feeling alone and isolated, I suggested that we join an Early Alzheimer’s support group in San Francisco, run by our local Alzheimer’s Organization. My husband Jerry agreed to attend. At our first meeting, there were only two married couples. As the years went by, more people joined our group, to make up the eleven couples that we have now, and we became, in an odd sort of way, a family.
While in group, I began to see that I was not the only one who was experiencing a sense of grief, despair, helplessness and terror. I also realized that, as a filmmaker, I was privy to a select group of people whose paths I would never have crossed had it not been for this disease. They expressed a gamut of emotions that arose out of this diagnosis, and each of them, in his or her own way, expressed much more eloquently than I could the extent of their concerns. In the past, I had seen films about Alzheimer’s, but most of them were about aging parents. Few of them addressed married couples like Jerry and I, and what it was like in terms of our changing roles as a couple. Two couples from the group, Joel and Janet Panzer, and Christine and Bob Paterson, agreed to be interviewed. At about the same time as Jerry’s diagnosis, a former Pan Am colleague of mine, Kathy Van Fleet, was also diagnosed with Alzheimer’s. She and her husband, Andy Woerheide, were kind enough to consent to some intense, candid, and personal interviews.
With this film, I wanted to put a face on this disease that has so often been out of the public eye. These are not famous people like Glen Campbell, Pat Summitt, or Ronald Reagan, but everyday people struggling alongside a diagnosis of a terrible illness. I wanted to bring to light some of the many issues that accompany a diagnosis of Alzheimer’s, both practical and emotional. My friend Kathy was angry about the stigma of Alzheimer’s and the friends that have disappeared from her life as a result of her diagnosis. Her husband Andy shared his very practical view of their situation. Joel was nostalgic about his wife, Janet’s, shared memories and expressed his grief over the loss of his long-time companion. Christine articulated her process with acceptance, but her humor in dealing with her loving husband, Bob, was an added bonus.
After completing a 30 minute version of the film, it became apparent to me that what was missing was a medical perspective, a clinical view of this disease. With that in mind, I approached several medical professionals, all of whom were very generous with their time and individual perspectives: Dr. Bruce Miller, Director of the UCSF (University of California San Francisco) Memory and Aging Center; Dr. Adam Boxer, Director of Clinical Trials at the UCSF Memory and Aging Center; Dr. Catherine Madison, Director at the Brain Health Center at CPMC (California Pacific Medical Center); and Caitlin Morgan, Gerontologist with caring.com in San Francisco. Their combined interviews focused on personal concerns such as getting the diagnosis, the nature of Alzheimer’s, helping the caregiver, stigma, and coping strategies for caregivers and patients. On a broader scale, these experts offered their clinical perspectives on current targets for research, the value of clinical trials, and their concerns with a growing epidemic in our aging population. I owe much gratitude to each of these medical centers for allowing me access to their resources.
I admire the bravery of Bob Pateron, Janet Panzer, and Kathy Van Fleet in being willing to share their views from the point of view of someone who has been diagnosed with Alzheimer’s. As this epidemic spreads further into our aging population of baby-boomers, there will be more and more stories just like these.