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    Ethical questions and the reporter's instincts

    Reporter Stephen Nohlgren describes his feelings about working on ''Alone Together,'' a special report about a year in the life of an Alzheimer's support group in today's St. Petersburg Times.

    By STEPHEN NOHLGREN, Times Staff Writer
    © St. Petersburg Times
    published June 9, 2002


    SPECIAL REPORT
    Alone Tegether: A year in the life of an Alzheimer’s support group
    Sometimes love isn't enough. Story

    Editors and journalism professors teach reporters to stay objective. Just be a fly on the wall.

    They never met Lucille. She was in her recliner when first we met, muttering to herself. I squatted to her eye level, extended my hand and slowly introduced myself, tips I had learned at an Alzheimer's support group that photographer Cherie Diez and I were following.

    Lucille laughed, grabbed me and wouldn't let go. It was love at first sight for both of us.

    Diez and I visited Lucille Hoffman at her house, tagged along when her husband, George, placed her in a nursing home and shed tears at her bedside the night she died.

    A dozen other caregivers opened their homes and their hearts. It was a rare, touching opportunity to be admitted so intimately into people's lives -- and it created a minefield of journalistic issues related to objectivity, consent and taste. Alzheimer's is never simple.

    Reporting began almost two years ago, in September 2000. We told the group we wanted to visit their loved ones and put their names and photographs in the newspaper.

    Most of them wanted no part of it. Alzheimer's is ugly, and they didn't want their loved ones on display. Their meetings are confidential, so much so that if they bump into each other at Wal-Mart, they are supposed to avoid all mention of dementia lest someone overhear.

    We offered a deal. If they would stick their toes in the water with us, we would do the same: We would do the reporting, they could withdraw their consent at any time.

    For months we attended meetings without knowing if we would have a story. Gradually, the ground started to shift.

    Baring their souls at meetings gave group members release, and, it turned out, so did describing their difficult lives to journalists.

    The more they talked, the more they focused on the tens of thousands of caregivers who do not attend support groups.

    "If we can help just one person by telling our story, it will be worth it," said Jack Grable, who was an officer in the Salvation Army. "We don't have any more burning bushes to help other people. . . . He works through us."

    One by one the group members agreed to cooperate.

    That left the delicate matter of gaining cooperation from their loved ones.

    We wouldn't write a feature story about a man dying of cancer without his consent, no matter what his healthy spouse wanted. People with dementia deserved that same courtesy. But how do you get permission from someone who can't remember who you are?

    I was introduced to Dick Lorentz a month before pneumonia slammed him into the nursing home. He could converse and understood what a reporter does. I told him we wanted to publish a story about him and Mary.

    "Why would you want to do that?" he asked.

    Because we're studying people with Alzheimer's disease, I told him, people like you.

    "Okay," he said, with no enthusiasm.

    I felt relieved -- but unsettled. People with dementia often do anything to please their caregivers. Was Dick, a quiet, gentle man, agreeing just to be agreeable?

    Ten minutes later, those fears eased.

    "Who are you again?" he asked.

    It didn't matter whether he consented because he couldn't remember.

    In this sense, people with dementia are like young children. We don't ask a toddler for his consent for a story, we ask his parents. If the caregiver wanted a story, we would write it.

    News subjects tend to act more naturally when a journalist spends months and months with them. That helps get to the truth of things but can result in intimacy that colors the reality we are trying to document.

    George Hoffman got real quiet during his last meal at home with Lucille before he was to place her in a nursing home. The weight of the moment was sinking in. I'm not sure whether Diez or I started crying first, but tears started staining my note pad and loud snuffles from Diez followed each click of her camera.

    George had sniffled and teared up but had mostly kept his composure until we started crying, then he let fly with his own tears.

    How do we report that? Would George have cried on his own, or did our tears set him off? How do flies on the wall filter themselves out of that scene?

    I wrote it as we always do -- as if we weren't there, telling myself that there were at least a few seconds where George was crying alone.

    After he put Lucille in the nursing home, George didn't have to return to the guilt and loneliness of an empty house. He came home with friends -- a reporter and photographer -- who would talk about his feelings, drink his Heineken and toast Lucille.

    Lucille must have confused me with George as a younger man. She would wink and arch her eyebrows at me in a fashion that can only be described as leering.

    The day George placed Lucille, the staff advised him to stay away and give her time to adjust. Eight days later came their reunion, and George smothered his wife with kisses. It was a poignant, loving reconnection that Diez wanted to photograph. But Lucille kept looking at me.

    Diez also had been trying to capture Lucille doing the little "okay" sign she would make with her thumb and forefinger when she was pleased. When George and Lucille reunited, Diez caught it perfectly -- but it was aimed at me.

    At support group, they teach that people with dementia forget about you if you are out of their sight. When Lucille looked at George a second, I ducked behind a door. Voila! I was gone. She never looked for me again.

    Because demented people also have poor peripheral vision, I could creep behind their chairs, inches from their heads, and hear every word they said. George was used to me by then, and Lucille didn't know I was there. She spent the rest of the time gazing fondly at George.

    * * *

    Florida Smith never reacted to our presence. When we interviewed her son, Gary, her eyes took us in but her expression never changed.

    She illustrated a stark Alzheimer's situation, a son, on his own, caring for his mother.

    It set the stage for some of the story's most intense photographs. In one picture, Gary struggles to get his mother out of bed, her legs and diaper showing. In another, she is nude while he diapers her.

    Why would we show such disturbing pictures? Why would Gary allow it? Did we exploit a poor soul?

    Alzheimer's is not pretty. It brings isolation, grief and fear. Our story is about human connection under the most trying circumstances. It is also about how support groups help people cope with probably the most stressful time of their lives.

    When a 58-year-old man who diapers his mother tells you that a support group saved his sanity, you believe it. We decided that if we soft-peddled Alzheimer's difficult side, that message of hope would lose all credibility.

    What about Florida's feelings? What about her privacy?

    That was for Gary to decide. Like others in the group, he felt that sharing his story would impart some meaning to this disease. He wanted to reach out to countless other caregivers who fight similar battles -- only they do it on their own.

    As the year approached its end, a new concern arose. We expected the story probably would prompt others to seek out support groups.

    Most groups meet once or twice a month; the group we followed meets once a week. The members bonded intensely. Do groups that meet just once a month produce that same effect? Would our words and photographs hold out a promise that once-a-month groups don't deliver?

    We don't know. In the end, we settled for what journalists almost always settle for: The closest we could get to one slice of reality.

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