Long Goodbye

The Palatka Daily News
May 14, 2003
by April Curtis

"I had been busy preparing for my future when suddenly a future, not of my liking or planning, took over my life and made a future of its own. The long goodbye set in and I suddenly had to look at the new future, face it, get rid of any denial that was there and make plans on how to deal with the new future that forced itself into my life." -- Excerpt from 'My Journey' by Chip Gerber, Jan. 24, 2002

At 51, Chip Gerber had a full life. As a licensed social worker and court-appointed guardian for the elderly, he often represented abused and exploited seniors in court. He loved his job, having a zest for the work that was important to him.

Then came the day when he couldn't remember why he was in court,or even who he was representing. "I thought it was because of stress, and the overload of my job," Gerber said. But it continued to happen. According to Gerber, he couldn't follow his own notes or keep up with required paperwork. He panicked. Literally.

Over-stressed by his concern, his worry and anxiety led to hospitalization and ultimately, to diagnosis. He had Alzheimer's disease. Gerber joined the estimated 4 million people nationwide with the disease, and the 10 percent younger than 65 diagnosed with "early onset AD."

That was six years ago. At the time of his life when everything was wonderful -- his career, his family, his plans for an enjoyable retirement -- it all came crashing down. Gerber calls it "the long goodbye." Shock and denial. Depression. A growing realization that all the plans made with his wife, Sharon, would now take a different path.

Gerber was familiar with the effects of the disease -- both his mother and grandmother had it. Even so, he did not expect it to come calling. Now, six years later, he is experiencing some of the progressive symptoms of the disease. He no longer knows his address or his phone number. He uses some words inappropriately, substitutions that sometimes mystify his wife, Sharon. "He told me when I was going out not to forget my e-mail," she said. "He meant my purse."

Gerber was placed on aricept, a widely used medication that helps slow memory loss. "It stabilizes it to some degree, although it is like using an aspirin for a brain tumor," Gerber said. "There is no known cure." He and Sharon wear bracelets, acquired through the Alzheimer's Association, that make them part of the "safe return system." Gerber's bracelet has identification on the back with a phone number. It's there in case he gets lost. Someone will come and get him and return him home. For Sharon Gerber, her bracelet identifies her as a caregiver for someone with Alzheimer's. "If I were in an accident and couldn't speak, the bracelet would let someone know to look out for him," she said.

The diagnosis of Alzheimer's initially left the couple shell-shocked and led to chronic depression. Part of the process involves grieving, Gerber said. "It's a lot to work on," he said. "My plate was full." "I immediately felt the need for support and the need to meet others like me," he said. The couple were referred to support groups, both for individuals with early onset Alzheimer's and also caregivers. "It's stimulating to relate to others, exchange ideas and stories," he said. "We can be open and free, make new friends. Alzheimer's friends stay by you."

Chip Gerber found a new cause. He has become an advocate, a voice for those with the disease. "This is my world now," Gerber said. "I want to change it for the better." He means it.

He traveled to Tallahassee to participate in the Florida Alzheimer's Summit 2003, and also attended the National Alzheimer's Association's 15th annual Public Policy Forum in Washington, D.C. He has spoken from a platform he knows well, testifying to the need for Alzheimer's research funding. "Our focus is to try to educate politicians, to get them behind funding Alzheimer's research," Gerber said. "Money is keeping us from finding a cure." "Even if we don't find a cure, we can help with prevention," said Sharon Gerber.

As a third generation victim of the disease, Chip Gerber is naturally concerned about the future for his two children and seven grandchildren. He plans to continue to speak to civic, church and any other audiences as long as he's able. "I've had considerable invites," he said.

Keeping as active as possible and stimulating his mind are goals that Gerber pursues. Besides his speaking engagements, Gerber keeps an on-line account of his daily life, called My Journey. "I didn't know anything about the computer until I got Alzheimer's," Gerber laughs. "The computer has opened up my world. I relate daily with these friends. We promote awareness, support, and education -- with the emphasis on support."

He has had hits on his site from as far away as India, he said.

"One of the saddest days for me will be when he can no longer be on the computer," said Sharon. Reading his journal has helped her get to know him even better, she said. Instead of pushing the couple apart, Alzheimer's has brought them closer. It is not the future they envisioned together, but they make it work. "She has so much to offer," said Gerber of his wife. "We are like a hand in glove. We've been through the good and the not so good. We take our vows seriously."

Sharon Gerber is active in caregiver support groups, including a local one as co-facilitator. "Before Alzheimer's, I wouldn't even speak in public," she said. "I'm amazed at what I've done since." Confronting Alzheimer's has led them to confront other issues as well, like end-of-life decisions. "We've had to deal with some things that couples deal with later in life like death and dying -- so many areas that are not thought of until you are seniors. We have made all the decisions that can be made," Gerber said.

His activism has helped Gerber focus on more than the end of life. His work, he feels, will leave a legacy of insight and learning to benefit not only his family, but also others. "The long goodbye to some feels like a curse, but I feel it has been a blessing," he said. "One thing I've learned quick is there's life after diagnosis." As the disease progresses and changes take place, Gerber hopes to maintain as long as he can.

He remains active with his church, St. James United Methodist in Palatka, as well as continuing his journal and advocacy. "Some with AD choose to keep in the closet and that's sad," he said. "I find doing the opposite helps me. It helps me handle life in a way to bring hope." "I can't maintain all levels, but I can maintain a sense of value and worth."

***For details on Alzheimer's Disease visit the Alzheimer's Association Web site alz.org. Chip Gerber's online journal can be found at My Journey by Chip Gerber.