Fellow Facilitator Matt Herman and I were in Los Angeles’s Miracle Mile on June 23, 2010 to record a day of Door-to-Door interviews hosted by the Alzheimer’s Association – California Southland Chapter, and Leeza’s Place at Olympia Medical Center, a site that supports Alzheimer’s caregivers.

Life partners Earl Adams and Jennifer Duke recorded on this day. Jennifer is 38 and a few years ago was diagnosed with Multiple Sclerosis; Earl is 50 and last year was diagnosed with early-onset Alzheimer’s disease. The two talked about the importance of sports in his life and how they help him focus on the present.

Jennifer teased him for duping his bowling challengers into underestimating his talent. He initially plays to their level, and mid-game emerges with an onslaught of strikes and flying pins. Once, he walked with the ball off the lane and bowled many yards behind the line. The ball swung toward the gutter and impeccably curved toward the inside for a strike. People were incredulous that he has Alzheimer’s disease. When Earl struggled to describe this dynamic, Jennifer said, “You sandbag your opponents!”

Jennifer’s disease at times requires her to rely on Earl’s physical strength. His memory and language are a challenge so she firms up the plans. As his caregiver, Jennifer asked him if he was worried for what the future held for them with regard to their diseases. Earl replied, “I’m not worried, but I know that sometimes you are. We’re gonna keep on pushing. We’ll be alright.”

Donna remembers the first time she knew something was wrong. It was during one of their annual Easter family gatherings and she was walking in from the garage with a plate of food. She looked down at her plate and had no longer had any idea what she was doing.

One of the hardest things for Donna to accept is that she can’t cook like she used to. Following directions is hard for her now and she can’t recall all the recipes she had committed to memory. Donna describes this loss like “having a beautiful garden that someone threw something on and killed everything.”

Donna’s condition is a challenge for Tony too. She is his best friend. She helped him through his battle with colon cancer a few years ago, and he wants to be there for her in the same way. They’ve been married for 44 years; Tony says it was love at first sight for him…indeed, they were married after a 5 month courtship. Donna giggles and chips in, “He proposed in early February and we were married in late February. We had to move up the wedding day because I was pregnant with our first son.”

Donna and Tony are still learning how to adjust with Donna’s condition.  They  travel less than they used to, and now a daughter-in-law hosts the annual Easter gathering.  Donna  feels fortunate that she has such a loving and supportive family who all live in the Bay Area, but it also makes the diagnosis that much more devastating for her.  She tears up when she talks about it, saying: “I just don’t want to miss anything!”

I would like to thank all of our partners and participants at each organization. Your warmth and kindness was wonderful.

As a Facilitator, I have been present for a number of conversations with people experiencing memory loss as part of the StoryCorps Memory Loss Initiative. Sometimes these conversations are an opportunity for the person with memory loss to share his or her stories, but it is not always so straightforward. In one conversation, a son and his father sat with their sensational mother and wife, whose stroke had left her unable to speak more than a few words. She listened to her husband recount their four year courtship through letters while he served in World War II.

Her son also remembered her devotion to her children and the love for theater she instilled in him. She was quiet and unresponsive during the interview but dazzled everyone near the end with a smile and the words, “Them were the days.” While her voice barely registers on the recording, she is present in the voices of loved ones as they narrate her story. She gently asked him what his very favorite song was, aware that he might not know. He thought for a moment and then replied it was one from his grandmother that goes, “When I get [sic] too old to dream / I’ll have you to remember.”

The words, originally from a love song written by Oscar Hammerstein in 1934, were unexpectedly poetic in the moment. They capture the inevitability of loss associated with aging and also the way that the memory of a loved one endures as other details fade. This is something I have often seen as people make their recording; an individual may have difficulty remembering many details or events yet they are confident in expressing love for the person sitting across from them.

Beyond that is the fear that eventually even this relationship will be forgotten, along with the details of a person’s life–the very things that make up a personal history and a personality. In this case, it is the spouse, friend, son or daughter who carries the stories and becomes the one “to remember.”

_{Minnie Virgilio (R) and her daughter, Nanette Virgilio (L)}

Last week, Facilitator Anna Walters, Memory Loss Initiative Coordinator Perri Chinalai, and I packed up our rental car (very early in the morning!) and traveled to Nanuet, New York for a day of recording with the Alzheimer’s Association Hudson Valley/Rockland/Westchester, NY Chapter. StoryCorps was able to visit Nanuet through the Memory Loss Initiative, a special initiative to record the stories of people living with Alzheimer’s and other illnesses that cause short and long term memory loss.

Nanette asked her mother questions about her musical talent. Minnie’s proficiency playing accordion landed her a guest spot on the radio before the acclaimed singer Dinah Shore. However, when Nanette asked about Carla, Minnie’s granddaughter, that’s when Minnie perked up and shared her reasons for never singing again. Minnie remembered that she would take Carla shopping as often as possible. After one long shopping outing, Minnie was driving along, singing her favorite tunes for Carla’s entertainment. From the backseat of the car, Minnie heard, “Grammy! Grammy! Grammy!” Finally, becoming somewhat annoyed, Minnie pulled over and asked Carla what the matter was. “Grammy,” Carla said, “I love you, but don’t sing.” Minnie almost died of laughter and continues to tell the story of her granddaughter’s brutal honesty. Minnie may no longer sing, but she remembers a few great and funny stories.

Each interview consisted of a participant interviewing his or her aging loved one. These storytellers shared a miscellany of compelling and emotive memories, including a childhood spent in China, “Sunday Night Suppers” with family, Gone with the Wind, and the Korean War.

It was a pleasure to be a part of preserving these conversations, all of which will no doubt grow more precious with time.

Kemba Bloodworth and Jenna Weiss-Berman were welcomed to the Alzheimer’s Association of the Carolinas. The staff provided them with an ideal, quiet place for recording conversations and databasing. Check out our nifty “quiet” signs.

While facilitating conversations, Kemba Bloodworth met Sylvia Fiano and Ann Copeland. Sylvia has been coping with memory loss through art. The first time she picked up a paintbrush was because of an association staff member’s encouragement. She donates most of her work to raise funds for the Alzheimer’s Association of the Carolinas and has yet to put the paintbrush down. A staff member gave Kemba and Jenna a tour of the association. A few pieces of Sylvia’s art work were displayed on their walls. Check out her art work!

At the Eastern North Carolina Chapter participants arrived hours early to chat with their support group leaders, Peggy Smith and DeeDee Harris (pictured above). There was so much laughter, we barely stayed on schedule. The next day, family members traveled hours to be present for their loved one’s interview at Duke University’s Bryan Alzheimer’s Disease Research Center (pictured above). Last but not least, Memory Care provided us with the same loving care they deliver to their patients (staff pictured above). Thanks to everyone who participated in one way or another.