The Dance and Memory Walk

The Sedalia Memory Walk was Saturday and the sea of purple shirts showed our community support for loved ones with Alzheimer’s. Our Memory Walk was fun with a cake walk, Don the Balloon Man, refreshments, door prizes, raffle items, and dance routines by the young ladies from Center Stage Academy. Smiles and hugs made the rounds as we connected with others who had walked a mile in similar shoes, helping lighten each other’s load for the journeys we shared.

“Do you remember me?” a lady asked. “I worked at Four Seasons Living Center when Jim was there.” Jim was at Four Seasons four years and although her face looked familiar, I couldn’t come up with her name. “I’m Pat,” she said. “My husband wound up in the same room Jim had in the Alzheimer’s unit.”

“I remember you were having problems with your husband. I’m sorry to hear he had Alzheimer’s.”

“Yeah,” Pat said, “one day the staff found him standing on top of the sink.”

I had to laugh about that one. “Well, Jim did a lot of things, but he never did that!”

“You know, you just have to remember the funny things that happened,” she said. I agreed. It is much better to remember the times we smiled than to think about the distressing times.

Just before we began the walk, our master of ceremonies, Terry Kelley, sang “The Dance,” and I walked up to take a picture of him. The song was so touching, I gave Terry a hug. The tears started flowing because the words of that song are so true for me and for millions of caregivers.

My cousin Reta had taken a picture too, and she pulled me into a big bear hug. Connie Pope from Fair View hugged me too and said, “Are you all right.”

I think through the boo-hooing I let her know I was. “It’s that song,” I said.

Connie said, “Look around, Linda. See all these people here today? They wouldn’t be here if it hadn’t been for you and Jim. You are the one that started this whole thing.” I may have started it, but Fair View has been at every Memory Walk since the first one I coordinated in 1999.

The teams were introduced, then Memory Walk Coordinator Sheila Ream and I carried the Memory Walk banner and led our walkers down Memory Lane toward the fairgrounds. Sheila handed off the banner to her son Phillip who has helped us throughout the year. As we rounded the corner and saw the long line of walkers behind us, Phillip said, “I’ve looked forward to this all year.”

While the prizes were being announced, we handed out purple and white balloons for the balloon release. We used a marker to write our loved one’s names on the balloons. I put Jim’s name in a heart and wrote “To heaven with love.” I tied the balloon onto a basket handle, and while I signed a book, Jim’s balloon broke away and raced toward the sky.

That afternoon, after a leisurely soak in the bathtub, I put on PJs and settled in for the rest of the day. I got to spend the evening with my two youngest grandkids. My three-year-old grandson played with his race cars, and shouted, “Start your engines!” Before when he played, he called his driver Josh, after a relative he has seen race, but after the Memory Walk, he said the driver was Jim.

As our grandson played with his cars, I couldn’t help but think how much Jim enjoyed his grandkids. Jim never got to meet the three-year-old that often talks about “Grandpa Jim” and even pictures his grandpa as the tiny driver in his racing game.

Jim and I parented two wonderful sons. Our four fantastic grandchildren bring so much joy to my life. When I look at my sons and my grandkids, I know it is best that I never knew the heartbreak early onset dementia would bring to our family. I’ve been blessed with love, and the pain diminishes when compared to the dance that forever lives in my memories.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Labor Day: Happy to Be Busy

My mom and I recently entered a restaurant and while we stood behind the “Please Wait to Be Seated” sign, the hostess walked rapidly toward us, not letting her unusual gait slow her down. She approached us with a large, friendly smile that made her face glow.

“Two?” she asked. “How are you, today?” She struggled with the sentence.

“Fine,” I replied, “and how are you?”

“Busy!” she said, with that big smile that made you realize she wanted it that way. She was definitely busy, and as we ate our lunch, we watched her lead a steady stream of hungry people to their tables. She had found her niche. A job she was good at and took pride in doing well. It is encouraging to see people working despite an obvious handicap.

Many of us work because we have to, or as a woman I used to work with always said, “I’ve developed this really bad habit—I like to eat.”

With the Labor Day holiday, I couldn’t help but think about the 500,000 people with early onset dementia and how hard going to work each day can be for them. As dementia progresses, it erodes their self confidence as they struggle through the workday. Even getting to work can be a challenge once confusion sets in.

Unlike our hostess who had a lifetime to adapt to her challenges, people with early onset dementia find themselves in the frustrating position of losing skills that may have taken them to the top of their field. They may have skills and talents that identify their very personhood.

Jim dropped out of high school when he was fifteen years old. I once asked him how that was possible and he explained that his family followed the crops to find work. “We moved to a different state and I never enrolled in school again.”

Jim was a high school dropout, but he was an intelligent person. Later he would get his GED, but his forte was working with his hands. Jim never needed instructions to take apart and repair anything mechanical. Early in the disease when Jim was home alone while I worked, I never knew what he was going to try to “fix” during the day. One night I came home to find our VCR was completely taken apart and scattered all over the living room floor.

People with early onset dementia sometimes hide the diagnosis from their coworkers and bosses to remain in the workforce until the disease progresses to the point they cannot continue. Alzheimer’s is a slow process and depending on the proper regimen, it is not always necessary for a person to quit work immediately. It depends on the job and how accommodating the employer is. Perhaps a job can be simplified, or a person can be shifted to a less demanding position.

Each family struggles with what is best for the person with dementia. He may stubbornly refuse to admit he cannot do his job safely. I talked to a woman whose husband was a heavy equipment operator. He was the boss of his family business and was still working although his dementia was advanced. His son worked with him and knew that Dad was jeopardizing their business reputation and endangering both their lives on a daily basis.

Losing a long-term job can be emotionally and financially devastating for a family. When a loved one has dementia, the caregiver may have to quit work too. Early onset dementia takes a toll on every member of the family.

During the Labor Day celebration, take time to pause and think about all the people unemployed because of Alzheimer’s—those with the disease and those who care for them. It might make Tuesday morning seem a little brighter if you are fortunate enough to have a job. When someone asks how you are, you might reply “busy” and smile about it.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com

From Memory Walk to Memory Talk

“I want to go to the Memory Walk because I’m having trouble with my memory,” Jim said. He had spotted a small ad about the upcoming walk in the Sedalia Democrat. I hadn’t mentioned the walk but had already registered and raised $400. I thought Jim wouldn’t want to go because it was for Alzheimer’s.

When the doctor told Jim he had probable Alzheimer’s, Jim’s reaction was, “I guarantee you, I do NOT have THAT!” I didn’t want to believe it either, but what began as memory glitches had developed into gaping deficits. By Memory Walk time, Jim was on Aricept, but it made him sick and he resented taking an Alzheimer’s drug.

We arrived at Liberty Park, expecting a crowd of walkers. We joined Helen and Chuck from Slater, Penny and Joetta from the Mid-Missouri Chapter, and Penny’s German shepherd, Vicky, beneath the small shelter.

Helen, an energetic, vivacious 70ish woman had organized the walk because the Association couldn’t find anyone in Sedalia to do it. She toted a hunter’s horn, and was raring to go.

We received tee-shirts, sweatshirts, caps, cups, and water bottles. I donned my purple tee-shirt, but Jim insisted on wearing his cowboy hat and denim shirt. We waited. Walk time arrived, and no one else showed up.

Our small group headed toward the downtown area. Helen blew her horn, and we collected donations from the few people we met on the street and most of the downtown businesses. It was hot, and Jim began to sweat, but he was a real trouper and wanted to continue the walk. Helen swooped into the VFW Hall on Ohio Street. The veterans asked her to blow her hunter’s horn, and the sound bugled throughout the building.

Jim collected the largest donation of the day from Wilken’s Music Store, where he was a regular customer. He was excited about people giving us contributions and with no concept of the value of money, pocket change was just as exciting to him as ten-dollar bills. In all, the Sedalia Walk earned about $600 that year

The Mid-Missouri Chapter asked me to organize the 1999 walk. I had never been involved in community service, and this was a giant step for me. The Sedalia Memory Walks were successful initially due to family support. Eventually the walk was embraced by our entire community. My passion carried me through five years as coordinator. Our six walkers mushroomed into 444 walkers who contributed $36,000.

The decision to become the Memory Walk Coordinator changed my life. Throughout Jim’s illness, being an Alzheimer’s Association volunteer gave me a sense of purpose and became my lifeline. The Mid-Missouri Chapter staff and Board gave me a Kleenex to dry my eyes and inspired me on my life’s greatest mission. Over the past ten years, I’ve been a primary caregiver, a support group facilitator, an Alzheimer’s Board Member and Assembly Delegate, a spokesperson, and active advocate for people with Alzheimer’s and their families.

I’m not telling you these things so you will think I’m a giving person; I have received so much more than I’ve ever given. Jim developing early onset dementia was my life’s greatest heartbreak, but this tragedy gave birth to my greatest blessings.

Being an Alzheimer’s volunteer, I’ve met amazing people, made life-long friends, and had opportunities I never dreamed could be possible. I share my experiences through Memory Talk presentations and book projects. I see sunshine breaking through the giant shadow of Alzheimer’s.

Every journey begins with one step, so make sure your step is in the right direction. May you walk the Memory Walk and talk the Memory Talk to make the world better for the 5.2 million Americans with Alzheimer’s.


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To find a Memory Walk near you, call your local Alzheimer’s Association Chapter or visit http://www.alz.org/ and click on your state on the map. You don’t have to be an athlete. Our top fundraiser for years called all her friends and never left her home. If you prefer email, the Alzheimer’s Association’s Kintera makes fundraising easy.

For information on Memory Talk presentations, visit http://www.lsfisher.com/, and click on the Alzheimer's Speaker link. Alzheimer's Anthology of Unconditional Love available at Barnesandnoble.com, Amazon.com, and selected Missouri Barnes and Noble stores.

Announcement: Early Onset Project Submissions Deadline Extended!

The submissions deadline for true slice-of-life stories for a book about early onset dementia has been extended to October 31, 2008. Early onset Alzheimer's begins before age 65. For complete guidelines and a sample story, please visit my website at www.lsfisher.com.

Linda Fisher