The truth hurts | Feature | Chicago Reader

The truth hurts 

A growing number of memory care facilities use “therapeutic fibbing” to comfort residents with dementia.

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click to enlarge “The general reality is that the truth annoys or hurts the residents,” said a Silverado administrator. - YURU (PRISCILLA) ZHU
  • “The general reality is that the truth annoys or hurts the residents,” said a Silverado administrator.
  • Yuru (Priscilla) Zhu

Each glass-topped wooden box hanging along the corridors of the Silverado home seals the memory of a resident. Eighty-eight-year-old Frank's* box holds a model of the first plane he flew during the Korean war and a sticker from his alma mater, the Boston University School of Law.

On a spring day, his wife, Lisa, showed him a copy of an old article in the alumni magazine about his retirement. "It says that you're a professor emeritus," Lisa said slowly, in a gentle voice, "which means you're very good." It took a few seconds for Frank to process, before a proud smile grew on his otherwise blank face.

Fifty-four residents live in the Silverado Memory Care Community in Highland Park. They are people who would get lost on a familiar road, stumble through a sentence, and act as if life goes backward not forward. They suffer from dementia, and in the United States, their numbers grow every 65 seconds. An estimated 5.8 million Americans are living with dementia, and more than 96 percent are people age 65 and older. As a disease characterized by severe changes in the brain that cause cognitive impairment, dementia can develop from multiple factors, including age, genetics, and injuries.

The boxes, which contain objects that convey significant memories that are slipping, or have slipped, away, present residents as real individuals who have led full lives. "Short-term memory is the first thing to fade away," said Sarah Myss, director of resident and family services at Silverado. "And long-term memory is the only thing that they can really grasp on to."

This three-story private facility, which costs a resident $9,000 a month, is decorated as in old times: posters of the New Yorker from the 30s and 40s, Elvis Presley, and the film High Society hang in the corridors. Black-and-white films run on televisions in the shared area. Music from the last century, such as songs by Frank Sinatra, wafts through the hallways. The aroma of fresh cookies permeates every corner. Like an estimated 140 other facilities of its kind in Illinois, Silverado is a place where the staff is devoted to using the past to rebuild the lost connection between people with dementia and the present.

The idea is to create the best possible lives for the residents, in a sense, as if they were still living in the past, as if they were still the vibrant persons they once were. Lying, or what is sometimes referred to as "therapeutic fibbing," is what Silverado and most memory care facilities do daily to achieve that goal by not contradicting the untruths—outdated facts or delusions—believed by the patients. As the New Yorker reported last year, therapeutic fibbing has been criticized. Family caregivers who fear their deceptions will be revealed worry that lying betrays the trust of a loved one. Some dementia experts criticize the method as unethical because it encourages delusion.

"We won't start by lies, but the general reality is that the truth annoys or hurts the residents," said Alex Doty, a Silverado administrator who has been providing consultation for family caregivers of older people with cognitive impairment for more than 15 years. "And our main duty is to make the residents feel comfortable."

Lisa first realized Frank had a serious memory problem in 2008. Frank had driven her to the bus station in Springfield, Massachusetts, where she caught a bus to New York. Three hours later, Frank was still at the station, believing that he was waiting for Lisa to arrive on a bus from New York. He called the police to report his missing wife. When the officer asked for a description, he said, "She's the most beautiful woman in the world." Lisa recalled the police's words and then frowned.

From then on, dementia gradually stole independence from Frank. He couldn't even go to the restroom himself, and Lisa had to stay at home. Finally, it all became too much for Lisa to take care of Frank on her own. She chose Silverado for its proximity to their daughter's house in Highland Park. Frank moved in at the age of 87.

For a while, Frank insisted that Silverado was the law school where he taught 15 years ago. When I, a young Asian woman, visited, I met every description of the law school's new dean, whom he had read about in the alumni magazine. He was sitting outside of his "office" (his room), doing his daily reading of the New York Times, when I walked in wearing Uggs and jeans. He took off his glasses, straightened up, smoothed his white T-shirt, and smiled warmly. "Are you looking for me?"

"Frank, the dean is busy with her . . . professional things," Lisa said, rushing out from the room. "We'll find another time to meet her properly."

"Well, just so you know," Frank lowered his voice, a little disappointed, "you can always find me at my office if you need help accommodating with your new job."

Lisa pushed Frank's wheelchair and smiled as if she had just lulled a two-year-old to sleep in the middle of the night. "Every day is comedy," she whispered. "You have to laugh because otherwise you cry."

For family members and workers, lying to loved ones or residents is something that takes practice. When Diana, another Silverado resident, looked for her husband, who passed away three years ago, she would be told, "He might be running late. Why don't we get your hair done first?" When Armstrong claimed that he needed to go to work in the morning, workers would put him in a car and drive him around the block. "You are never going to persuade them [residents] they are wrong, so the best thing to do is simply to agree," explained Doty.

Only two or three of the 54 residents are aware of their own diseases. "It sounds terrible, but it's almost a blessing," said Myss. "And you want to have that good conversation with them that puts them in a positive place, that doesn't make them feel like they have problems."

On their way to the monthly music therapy session held on the third floor, Lisa and Frank passed the memory boxes, the best conversation starters in the building. A black-and-white wedding photo of Bob, a lightly abraded sticker of Mary's alma mater Cornell, a hand-drawn thank-you note from students Amy once taught, a gavel former judge Julian used in court, an elegant oil painting of flowers done by Laura, a clipping from Ann's favorite cooking magazine, a family portrait of Mark, a motto Pauline loves the most: "It's hard to be humble when you're as great as I am."

"It just reminds you of how nondiscriminating and merciless this disease is," said Melissa, the family member of a moderate-stage resident, who still remembers major details about his life. "Because it doesn't matter how successful or brilliant you were, if you have this gene for dementia, this is going to be your fate."

For many of the residents, the past is what comforts and excites them. In my conversations with residents, they showed me old photos they carried in their wallets, or asked me to fetch those hanging in their rooms, and caressed and kissed the pictures. "Oh my god, Clara, you look amazing in your wedding dress! Tell me about your husband." "Kate, I didn't know you've traveled so much. That's so cool! What's your favorite country?" With joy on their faces, they held my hands and told me stories that carried them back in time, to the lives they once lived. "I saw him at a college party and I just fell in love immediately!" "Except for China, I've been to every part of the world! I'll tell you, French is the best!"

Or if they are late-stage residents who are nonverbal, like Shirley, they lifted their eyes, nodded, and gave a little smile. "That's the most interaction I've ever had with her," said Myss. "And that small interaction made me realize that she understood." Myss said that as the disease progresses, the life stories residents could once talk over for hours gradually shrink to only a few words that can still trigger responses: "children," "traveled," "wife," "cat," and "friend."

Lisa and Frank arrived just when the session was about to begin. Music therapy, where a singer therapist performs while residents sing along and accompany on drums and rattles, is Frank's favorite activity in the home. "Do you want to play the drum when I sing? I remember you're a good drummer," the therapist asked Frank. "Our theme is presidents today. Who's your favorite president?"

Choices—whether Peter would like pudding and what Diana would like to wear in the morning—are an important part of Silverado's core philosophy of "normalization." "We want them to feel like they're making their own decisions," Myss said, "because that's what they would like if they didn't live with this cognitive impairment. And nothing should change because they're living with a cognitive impairment.

"We try to give the residents a sense of purpose through the activities and some of the 'jobs' we create. And they're happy about it," she said. Fred, who used to be a maintenance coordinator, is appointed resident advocate; Paula, a former secretary, always sits at the front desk and folds envelopes. Jill loves bringing other residents to the living room at meal time and getting them juices, while Laura makes candies for the policemen across the street. For others, it might just be crossword puzzles or a happy hour. "It is simple. As we get old, we all want to continue to have a purpose," said Doty.

As the music therapy proceeded, the familiar songs finally reached the residents. Mary got out from her chair and hummed along. Julia, who is nonverbal, shook her hands and legs intensely. Jim invited the therapist to dance with him. "There's a song I am thinking of to sing, because almost all the presidents, whenever they gave a speech, they ended the speech with this. They said, 'Thank you and God bless . . . '" The therapist paused.

"America!" Frank and Jim shouted with a big smile. For a short while, Frank stopped bothering Lisa about going back to his office and played his drum happily. "God bless America, my home sweet home," they sang together.   v

*Some names have been changed.

Since this story was reported, this location of Silverado came under new management and was renamed the Auberge at Highland Park. Interim director Scott Kolzow said that he's not familiar with Silverado's philosophy.

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