Saturday, September 27, 2008

Early Onset Dementia: Write Your Story

Did some event happen that made you realize your life was irrevocably changed? What is your story of that moment?

Each morning of my life, I have awakened with confidence that life will plug along on an even keel. Without warning, a few simple questions changed the course of my family’s lives.

Jim and I were at our local Nissan dealer to co-sign a loan for our son. The dealer, Kevin, asked Jim his social security number and after a few moments, Jim said, “I can’t remember it.” Jim knew his social security number well because it had been his service number for three years in the U.S. Army. It surpised me that Jim couldn't recall the number, but it didn't concern me because I have glitches with numbers all the time. I gave Kevin Jim’s social security number.

Then, Kevin asked Jim his birth date. Jim said, “I guess I don’t know that either.”

That was when we began our journey. A family in the United States begins that journey every 71 seconds. The Alzheimer’s Association estimates that more than 500,000 people in the U.S. have dementia that began before age 65, or early onset dementia.

For several months, I have worked on the Early Onset Project. My objective is to collect stories to create awareness of early onset dementia. I need approximately thirty-five true stories to complete the book. My plan is to have three sections: In Their Own Words (people with dementia), Care Partner Stories (for primary caregivers) and Family, Friends, and Professional’s Stories.

Although I extended the deadline to October 31, I do not have enough submissions. I know it’s hard to take time to write a story, but consider how much your slice-of-life story can benefit other people who have just begun the Alzheimer's journey.

Writing life stories is therapeutic for the author. It is amazing how committing your challenges to paper can begin emotional healing. I knew this instinctively, but research supports the beneficial effects of therapeutic writing. Dr. James Pennebaker’s studies have shown positive emotional and physical benefits for people who wrote about traumatic experiences for fifteen minutes, four to seven consecutive days. The participants were instructed to write their emotional reaction to the traumatic event without regard to grammar or spelling. This writing can be kept completely personal and never shared with anyone. Most participants found that by the end of the study period their writing had developed into a story.

Try it and you will be amazed at how easy it is to write a slice-of-life story and how cathartic the process will be. If you want to contribute the story to the Early Onset Project, email it to earlyonset(at)

Watch for a publication date announcement for: Writing as Therapy: Rocks and Pebbles by L. S. Fisher.

Monday, September 22, 2008

I Will Remember You, Will You Remember Me?

Sometimes you are better off when you don’t get what you wish for. We had wished for our Memory Walk to be last weekend, but settled for this weekend instead. What a difference a week makes! Last Saturday I was flooded in, but Memory Walk day couldn’t have been more perfect if the request had gone straight from our lips to God’s ears.

It’s been a busy weekend. We began on Thursday evening with Bank Day. Besides collecting team money, we put together goody bags and handed out tee-shirts. Friday, I introduced our new coordinator, Lisa, to the fine art of schmoozing. This is a long-standing tradition with our Sedalia Memory Walk. We visit our corporate sponsors bearing gifts. It shows our appreciation and reminds everyone of the upcoming event.

Friday was a good day. Lisa and I solved our last two remaining problems: (1) ice and water and (2) balloons for our balloon release. When Wal-Mart gave us a gift card, we solved Problem #1 and knew we could buy water and ice the next morning. Problem #2 was balloons for our balloon release. I knew from past experience that inflating the balloons, tying them off, and hauling them around is not a job for sissies. Balloons and Tunes quoted Lisa fifty cents a balloon. For $25 we bought fifty white and purple balloons ready for flight.

Saturday morning, festive music played in the background, and Don the balloon man made magical animal figures and hats for children of all ages ranging from a few months to 96 years. We served breakfast snacks with coffee and plenty of iced down beverages. Center Stage Dance Academy performed three delightful dances that lived up to the slogan on their shirts: “Dance Like Everyone is Watching.”

We began our walk to “I Like to Move It” from Madagascar and finished our mile to “Chariots of Fire.” After the Walk, we gave away door prizes and awarded the two traveling trophies to Fairview. Lisa handed out balloons and with a purple marker, we wrote names of the loved ones we wanted to honor.

“Whose name would you like on your balloon?” I asked Connie from Fairview Nursing Home. Jim’s Team and Fairview have been long-time friendly rivals for the trophies. As a former coordinator, I truly appreciate their commitment to Memory Walk.

“Put Jim’s name on it,” she said. I wrote his name and drew a heart around it.

The music keyed up and fifty balloons soared to “I Will Remember You, Will You Remember Me?” Some of the balloons flew toward the heavens and some caught in the upper branches of a stately tree.

“Those are the ones who are still with us,” my Aunt Labetta said. Before the song was finished, most of the balloons slipped on through the tree and disappeared into the bluest sky possible. Tears flowed for our loved ones lost to the disease. We will always remember them with love, even when they don’t remember us.

Saturday, September 13, 2008

The Days are Getting Shorter!

Today, slate skies are gushing rain onto Mid-Missouri. Ike is pushing inward and brings more of the same for next few days. The NOAH weather station on my weather alert radio spews out county after county with flash flood and tornado warnings. The days are getting shorter, and not just because autumn is nigh.

My days seem shorter because I’ve got more to do than time to do it. When I look around at other people, I see the same scenario played over and over. Life is hectic and the days aren’t long enough.

I work four ten-hour days each week. My “Day Off” To-Do List is jam packed with items. Some days, I barely scratch the surface. Weekends fly by and my list gets longer yet. My calendar for this month has events for every weekend—sometimes for Friday night, Saturday, and Sunday. This is a month with two family reunions, Memory Walk, writing, speaking engagements, radio/TV interviews, the BPW Chicken Dinner, writers’ guild, support group, fundraising for three different groups, and more. Whew! No wonder the days seem too short.

The dreary weather depresses me and makes me anxious. Our Memory Walk is next weekend and I pray for sunny skies. So much needs to be done before the walk and the morning of the walk. I have nightmares about downpours and no walkers. We will not cancel the walk for rain, but rain changes the entire dynamics of the event.

I may grouse about the constant rain, but I’m not complaining about the short days. The big advantage is that while the days are too short, they are full and fulfilling. Would I trade my short busy days for long leisurely ones? No, BUT I might be willing to swap some of them. A little down time seems like a dream come true. I would like to read a book, watch TV, and eat chocolate bonbons. I would be especially interested in a week on a tropical island—without a hurricane.

Saturday, September 6, 2008

Identity Theft

My phone rang at twenty minutes after midnight earlier this week. Of course, I was sound asleep so it took a few rings before my brain could interpret the sound and direct my hand to pick up the receiver. When I realized it was the phone, my first thought was Oh, my God, someone has died.

Instead of my mother, the normal bearer of sad tidings, I heard a recorded voice say, “This is Excel Bank, and we are notifying you that your debit card has been suspended. To speak to a representative about this matter …” OK. I’ve been awakened out of a sound sleep and I think someone has stolen my identity and ransacked my checking account. Then the practical side of my brain reminds me that my friend Arlene at Excel Bank would never call me in the middle of the night, so I hung up the phone.

The next day, the big news story is about the deluge of calls to everyone in Sedalia with an 826 prefix. Some of the people who received the calls were not, and had never been, Excel Bank customers. The scam artists even called the sheriff at his home and the Sedalia Police Department. Had I followed the directions, I would have been instructed to key in my account and pin number.

Ten years ago, I might have been tricked into giving someone sensitive information over the phone or on the Internet, but now I’ve learned to ignore urgent email requests about problems with various accounts—Amazon, E-Bay, bank, etc. I never click on “You Won! You are our 1,000,000th Customer” or “You won the Canadian lottery!”

When Jim and I first used the ATM, I could never remember the assigned number so he always had to key it in. Several years later, when he was in the early stages of dementia, Jim couldn’t consistently remember the secret number. One day I was at work and a teller at the bank called.

“There’s a man at the drive-up window who says he’s your husband. He tried to get money out of your account at the ATM, but couldn’t remember the pin number.”

“Did he want $30?” I asked. Jim always withdrew exactly $30 and that amount would be verification of his identity as far as I was concerned.

“Yes, he did. We had him send in his driver’s license, and then couldn’t decide if it was really him.”

“Oh, it’s Jim. Go ahead and give him the money.” The teller thought someone had stolen Jim’s identity. In reality, Jim was losing his identity to dementia—one memory, one skill, at a time.

Our identities are our most important possession because it is a mirror of our inner selves and values. When someone steals an identity, they have already demonstrated a flawed character. I don’t want to be bilked out of my hard earned money by a thief. Still, I would much rather lose dollars than my identity.