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ADVOCACY: Alzheimer's Foe Wilkes Barre Times-Leader, PA - May 31, 2004 Grandma's struggle with illness inspires teenager's advocacy By THERESA WALKER - The Orange County Register, CA SANTA ANA, Calif. - Dolores Looper sits in her high-backed wheelchair inside the dining room at Silverado Senior Living. Eyes wide. Staring. Her mouth is slightly open, but she can't speak. She doesn't move except for the tremble in her left hand as she grips a small weight, the result of Parkinson's. It doesn't appear that she's aware of anything until her granddaughter arrives. "Hi, Grandma," Lacey Looper says, smiling into Dolores Looper's stare. A smile answers her back. Lacey laughs. "You have lipstick all over your face," she says, taking out a tissue that she gently presses to her grandma's mouth to wipe away the makeup someone else applied. "Here, let's blot. There. You're so pretty." Lacey gives her grandma a kiss. Dolores Looper's eyes widen. A bigger smile. This is as much recognition as Alzheimer's disease allows Lacey to coax from her grandma these days. That and the grip Dolores Looper's right hand has on two of Lacey's fingers. Two or three times a week, Lacey and her mother, Candace Looper, make the trip from their home in Villa Park to Silverado in Costa Mesa, Calif., for just these moments. This is what they have now together, the granddaughter, 14, the mom, 44, and the grandma, 74, who once shared a home but now are separated by a disease that touches millions of lives. A smile might not seem like much compared with trips to the mall or time spent in the kitchen baking cookies. But to Lacey - who used to yearn for what her schoolmates shared with their grandparents - that smile means everything. She finds herself wondering what her grandma is thinking. "You never know when she's not going to know that I love her." Lacey expresses that love beyond her visits to Silverado. Recently, she was in Washington, D.C., invited by the national Alzheimer's Association to attend its annual Public Policy Forum. She met with congressional aides and spoke at a candlelight vigil on the Capitol steps. She has also traveled to Sacramento on behalf of the Alzheimer's Association to meet with California legislators and to promote a program she and her mother want to bring to schoolchildren. Lacey struggled as a child to understand what was happening to her grandma. Now she is old enough to grasp the impact of statistics showing that one in 10 Americans have a family member with Alzheimer's, that one in three know someone with the disease, that the number of Americans with Alzheimer's has doubled since 1980, to 4.5 million. Barring prevention or a cure, the number will more than double again by the 2050 due to the baby-boomer bulge. To Lacey, that translates into millions more children and teens who need to be educated. "I hope they realize what's going on and that it could affect them and is probably going to. So they can be prepared for it, so they'll know what to expect. They'll have a better understanding of what the person is going through." She doesn't want them to fear people with Alzheimer's - or to ignore older people in general. She wants young people to make the older generation part of their lives. Lacey figures her visits mean a lot to Grandma, even though Dolores Looper can't tell her, and to the other residents of the nursing home that Lacey takes time to visit. "I just hope something I say, or having me always there loving her, will stick with her. I know if I had it or I had some other disease, I wouldn't want to be treated all special. I would want to be talked to like a normal person." Dolores Looper is the only grandparent Lacey has known. She was diagnosed with Alzheimer's in 1995. Lacey can't remember her grandma any other way than as someone who at first became forgetful and confused, like when she got lost taking Lacey to school, and as the disease progressed, someone who became angry and violent. A stroke left Dolores Looper as she is today. "For a child to understand this is nearly impossible," Candace Looper says. It was especially difficult when Dolores Looper would lash out at Lacey, who loved to sit beside her grandma and pat her, watch the "Sound of Music" with her over and over, put her hair in French braids. "When she would yell at me and tell me to shut up or call me stupid, I thought it was her just being mean to me. I would yell back. Finally I got old enough and realized it was not her being mean." For almost two years, Lacey's relationship with her grandma was measured by an "arms-length rule" at her mother's insistence - Lacey had to stay at least an arm's length away when Dolores Looper was acting out. Candace Looper tried to explain her mother's behavior to her daughter by bringing it down to a child's level. She gave her a visual picture, comparing Alzheimer's disease to a house with Christmas lights - you don't notice when one or two go out, but the more that burn out, the more you notice what's missing. She also took Lacey to speak with people at the Alzheimer's Association. Lacey joined a handful of kids to attend a children's workshop. When Lacey was 8, she created a little book called "My Grandma Has 'Altimer's"' with markers and paper Candace Looper gave her one day at her workplace. The Alzheimer's Association of Orange County, Calif., uses the book in its community outreach. In it, Lacey talks about how hard it was for her mama and that "it was especially hard for her grandma," but "I know that things will turn out!" When she was 9, she formed a children's team at the annual Memory Walk to raise awareness about Alzheimer's and research funds. She got together a group of girls who were fans of the American Girl dolls and dubbed it "Grandma's Dolls." The next year, the team called itself "Grandma's Sweethearts." Dolores Looper had started calling Lacey "sweetheart" after she completely forgot her name. One year, Lacey's team of 39 children and adults raised more than $3,000 in pledges for the association. Last year at the Memory Walk, she and a friend presented a puppet show based on a children's book, "Wilfrid Gordon McDonald Partridge" by Mem Fox and Julie Vivas, about a little boy who lives next door to a retirement home and tries to find a neighbor's lost memory. The Loopers are working with the Alzheimer's Association of Orange County to get the author's permission to distribute the book to schoolchildren and film Lacey's puppet show as part of the program they hope to present. Not many kids Lacey's age have become so involved in the association, says Judy Dickinson, associate director of program services for the Orange County chapter. Dickinson has seen how Dolores Looper's disease has progressed, and she has seen Lacey grow, too. "Young people like her are going to ... change the outcome of the disease by supporting more research and changing people's perspective about the disease." In eighth grade, the same year her grandma suffered the stroke, Lacey wrote an essay titled "My Inspiration." It is about Dolores Looper. "I chose her for my inspiration because no matter what, she keeps on fighting," Lacey wrote. "She has the strength of an ox although she is mostly bedridden. Last April, the doctors said she is going to die, but she is still here today as happy as ever." The essay earned her an A from her teacher, and when she reads it in public, like she did at the candlelight vigil in Washington, it brings tears to people's eyes. "She definitely had a voice and a role here in Washington," says Kate Novak, who is in charge of grass-roots advocacy for the national Alzheimer's Association. "Even though she can't vote, she made it clear to her legislators that she will be a future voter." Last summer, Candace Looper moved her mother to Silverado when the stress from years of caregiving began to interfere with her own health. Lacey was heartbroken, even though she had been so taken by Silverado during her grandma's earlier stay that she asked her mom about volunteering there someday. She begged her mom to keep her grandma with them. "Truthfully, I didn't want her to come here even though it's such a nice place." Lacey has brought her friends to visit with her grandma and to volunteer at Silverado. She thinks it's a lack of understanding and fear that builds walls between her generation and that of older people who suffer from Alzheimer's. Dickinson says the need to educate kids about Alzheimer's is growing. More people in their mid- or late 50s with kids at home are being diagnosed, and more families are caught in the sandwich generation, caring for their parents and their children. "You hear about family members who can't participate in their children's activities because they have to stay home to care for Mom or Dad. You hear about resentment being built up in the child. It gets worse when they are teens: 'Can I bring my friends home? How's Grandma going to act?"' Lacey is a good role model, Dickinson says, because she shows kids that they can take an active role." Lacey, a high school freshman, doesn't think she's anything special. She describes herself as someone who plays clarinet and saxophone, likes to sing songs by Aretha Franklin and Charlotte Church, rides horses, practices kickboxing and loves to buy and collect shoes. (She has 68 pairs.) "I'm not a superhero. I'm just a regular person. Anybody can do it. Just be willing to get out of your comfort zone and do things for other people, not just for yourself." She credits her grandma with teaching her that. "Instead of her taking care of me, I'm taking care of her." On days when Dolores Looper is more alert, Lacey gets the best reward of all. When she asks her grandma if she loves her, Dolores Looper does more than just smile. She tells Lacey, "Yeah." HOW TO GET INVOLVED Lacey Looper believes kids her age and younger can do the same kinds of things she does to bridge the gap between her generation and older people, with a little bit of initiative. Here are her suggestions on things teens can do to help seniors: 1. Get out there and get involved. Volunteering is a great way! 2. Show respect and be interested in what others have to say. 3. Put yourself in the other person's position. They might be really lonely, and happy that you are with them. 4. Show compassion and learn to really care about other people. 5. Have fun and enjoy your time with them. The time with you might be a bright spot in their day. RESOURCES FOR DEALING WITH ALZHEIMER'S "The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer's Disease, Related Dementing Illnesses and Memory Loss in Later Life," by Nancy L. Mace and Peter V. Rabins (Johns Hopkins University Press, 1999). "Wilfrid Gordon McDonald Partridge," by Mem Fox and Julie Vivas (Kane/Miller, 1985). Book for ages 4-8 that deals with memory loss. National Alzheimer's Association, (800) 272-3900. Support line is open 24 hours and Web site includes articles written for kids and teens. Source: Joyce Lowder, Alzheimer's Association of Orange County, Calif. KRT PHOTOS Lacey Looper holds her grandmother's hand at Silverado Senior Living in Costa Mesa, Calif. Dolores Looper sits outside her room at Silverado Senior Living in Costa Mesa, Calif. Looper suffers from Alzheimer's disease. 'Instead of her taking care of me, I'm taking care of her,' her granddaughter Lacey says. Lacey Looper greets her grandmother Dolores Looper at Silverado Senior Living in Costa Mesa, Calif. Looper calls Lacey 'sweetheart' because she can't remember her granddaughter's name. Ron St. John, left, and his wife, Chris, right, share a laugh with Julia, over a photo at their home in Orlando, Fla. Julia St. John suffers with Alzheimer's disease. By THERESA WALKER - The Orange County Register, CA SOURCE: The Orange County Register, CA / Wilkes Barre Times-Leader, PA - May 31, 2004 http://www.timesleader.com/mld/timesleader/living/8775902.htm * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn