Thank you for supporting Walk to End Alzheimer's!

Sunday, November 28, 2010

The Brighter the Light, the Deeper the Shadows

This morning Pastor Jim talked about how God’s light chases away the darkness, and as usual, his message gave me food for thought. In a flash of light, the phrase came to my mind—the brighter the light, the deeper the shadows.

Our lives are made up of bright light and dark shadows. Some mornings we awaken with joy in our hearts, confident the day will shine bright upon us. Other days begin with a sense of something out of kilter, and as we orient ourselves to meet the day, a shadow may envelop us in gloom.

People surrounded by the brightest lights often plummet to the deepest shadows. Do we expect more from those who live in the limelight? Stars who flame the brightest fall from the sky and become lost in the shadows. Often we are envious of famous people and believe they lead charmed lives. Often it isn’t until their deaths that we learn about their dark sides, the demons of drugs, insecurity, or physical abuse they hid behind their bright smiles. Could we have seen the pain in their eyes if only we had looked closer? Could we tell that Marilyn stood in the shadow of Norma Jean? Could we have known that satisfying the public’s insatiable curiosity about Princess Diana cast a shadow over her that contributed to her death?

When a loved one has Alzheimer’s, we may spend many days living in the shadow of the life we used to have. I recently talked to a woman whose husband has a type of dementia that drastically changed his personality. For more than sixty years, their days were filled with travel, love, and laughter. Now, he is making her life miserable. He accuses her of cheating on him, calls her obscene names, says he hates her (and always has), that he wants a divorce, and on and on. Her heart is broken. She doesn’t want to put him in a nursing home, and she worries about him constantly even during the time we spent drinking coffee at a local restaurant.

Now, his doctor is trying to control his rage with medication, but so far nothing has worked. “I still love him,” she said with tears in her eyes, “but I don’t like him anymore.” Her life has moved into deepest shadows. The bright light that shone upon them seems like a distant memory, a lifetime ago, extinguished and vanished from her world.

If we can only remember that during the darkest times of our lives, the brightest light shines on us. The light is always there. It just happens to be shining at our backs while all we see is the shadow in front of us. As we move forward, the shadow moves with us, and we think it will never go away. During the most troubled times, we may be afraid that the shadow is a black hole and one more step will cause us to tumble into the abyss. From time to time, we must turn around and look over our shoulder to see the bright light, still there, steadfast.

Without light, there are no shadows. Do you remember making shadow puppets when you were younger? You place your hand in front of a bright light and form your hand into a shape. Your hand displaces the light, making a fun shadow on the wall. If you make a solid fist, the light won’t shine through your hand—you must actively make it happen.

The only way a shadow remains solid is if we do nothing to allow light to shine through. The slivers of brilliant light blazing through the shadows reaffirms our faith that the deeper the shadows, the brighter the light.

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

Monday, November 22, 2010

Early Onset Blog Book Wins Book of the Year Award

I went to the Ozarks Writers League (OWL) Awards banquet hoping, but not expecting, to win an award for my contest entries. After winning third place in the Gene Andereck short story contest, and third in the Dan Saults essay contest, I felt good about the recognition. Sixty-six of OWL’s 263 accomplished authors submitted more than 200 entries in nine categories, and though I was elated to win, I calmly walked forward to receive my checks and certificates.

One of the last awards was for the Book of the Year. When President Delois called out my name and announced that Early Onset Blog: Essays from an Online Journal was the Best Book of the Year Award winner, I hopped and skipped toward the front to accept. I bounded forward propelled by a mixture of excitement and the urge to get to the front of the room before they changed their minds.

The blog book didn’t win Book of the Year because it has an outstanding plot or colorful fiction characters. The characters are real people, with fear, anxiety, hope, and humor weaving us together as we share the bond of life with dementia. My blog isn’t flowery prose or a literary masterpiece. Each idea, phrase, or observation comes from my heart or it doesn’t hit the page.

For the past five years, I’ve wanted to write a memoir about Jim’s life. Although, I’ve never pared down my copious journal, I have shared many of my memories through the blog. The blog has become a memoir of our ten-year journey through dementia. Our story is the thread that binds the essays together that make up two books: Essays from an Online Journal and The Friendship Connection. Now, the third book is almost finished.

The books are not bestsellers, and were never intended to be. I give them to legislators during our Capitol Hill visits at the Advocacy Forum in Washington, DC. I hand them out during Memory Day at the state capital. Then, I distribute them free of charge at our Sedalia Memory Walk. The worth of the books is not based on sales, and the rewards I receive are not monetary. I am more like the old time vendors who receive something of value in exchange. No, please don’t send me a chicken or side of beef—my rewards are finding out I wrote something that helped or encouraged you. I prefer emails, comments, or a hug when we meet in person.

Readers have many different views of bloggers and bloggers have different goals, or agendas. My goals are simple: Encourage, Inspire, and Inform. I know how alone a caregiver can feel, and I understand those middle-of-the-night moments when you need to be encouraged. No matter how much family, friend, or church support you have, your inner strength occasionally needs to be shored up. You need to be reminded that the days may be dark, but moments of joy will break through the clouds, and you will once again walk in sunshine.

I don’t write this blog to win awards. Yes, it is great to be recognized and it validates the time and effort to keep on writing even when I get no comments or emails. I can look at the stats and know hundreds read the blog on a regular basis. My writing comes from a passion of knowing how alone a caregiver can feel.

When I lose my passion, I’ll close this blog down. Until that day, if it ever comes, I’ll keep on encouraging, inspiring, and informing. Simple, but important goals, as long as Alzheimer’s erases memories, erodes skills, and reduces our abundance of life.

___________

Early Onset Blog: Essays from an Online Journal and Early Onset Blog: The Friendship Connection are both available at http://www.amazon.com/ when you type in "Early Onset Blog."

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

Sunday, November 14, 2010

The Journey Ends: Memories of Lynne

My son saw the obituary before I did. “Was that your friend with Alzheimer’s in the obituaries today?” I hadn’t read the paper yet but when he told me the name, I said “Yes, that was her.”

The last time I saw Lynne, I didn’t recognize her. She bore small resemblance to the vivacious woman that had become my friend. Yes, she had dementia when I met her; in fact, it was the reason I met her.

The Alzheimer’s Association had started a group for early-onset Alzheimer’s. The group met in Columbia, and I had decided to take Jim. Joetta from the Mid-Missouri Chapter asked me if I would mind bringing a lady with early onset that lived in Sedalia. I agreed to go by and pick up Lynne so she could participate in the group.

From my journal—Meeting Lynne and becoming friends:

The first group meeting was set. I loaded Jim into the back seat of my Nissan Sentra and drove to the apartment building where Lynne lived. She saw us drive up and immediately came outside. Lynn was an attractive, quiet woman with a fair complexion, and neatly groomed.

We introduced ourselves, and she settled into the front seat for the hour long drive to support group. We instantly hit it off. As we drove toward Columbia, Lynne and I chatted easily about clothes, movies, and our dogs. Lynne told me that she wished she had a man to be romantically involved with. She said she really enjoyed male company, but had no one in her life now.

We stopped at the rest area so that everyone could use the restroom, and then headed onto our group meeting. Other than Lynne, Jim, and I, one other couple attended the meeting. They lived in Columbia, and Stan was in a much earlier stage of the disease than Jim. Stan was articulate and he spoke about the frustration of not being able to do the things he used to do, the stigma of losing his job, and his fear of what the future held both him and his wife.

Jim’s communication abilities were already severely impaired and he nodded agreement while the other man talked. He mumbled “yes” several times. The facilitator tried to draw Jim into the conversation.

“He said it,” Jim finally stammered, tears running down his cheeks.

After we left the meeting, Lynne told me that she couldn’t tell anything was wrong with the other participant. I could hear a certain hesitation in Stan’s speech when he talked, and noticed a dependence on his wife to help him when he became confused.

I took Lynne and Jim to lunch at Jim’s favorite place, Steak and Shake. Lynne wanted to buy our lunch, but I bought her lunch the first time. She insisted her sister had given her money to buy lunch, so I agreed that she could pay next time.

The next month during the drive to the support group meeting, Lynn told me Jim scared her.

“Why?” I asked, because Jim was easy to get along with at this stage.

“It scares me to think I will be like that,” she said.

Jim was sitting in the back seat wearing a jacket covered with pins, a cap pulled down low, dark sunglasses on, and earphones on so he could play his cassettes. When the tapes clicked at the end, he handed it to me to change the tape. Lynn changed them since I was driving.

“Lynne, every person is different. The medicine seems to help you and it never helped Jim.”

“That makes me feel better,” she said.

Each time I took her home, I gave her a hug.

I admired Lynn’s awareness of her disease. She willingly gave up her driver’s license because she no longer trusted her driving. She made the decision to go into assisted living when she could no longer remember if she had taken her medication. “Alzheimer’s is a terrible disease,” Lynne said, “but in some ways it has been a real blessing. I now have more friends than I ever had in my life, and I met these wonderful people because of my disease.”

Wow! How do you respond when someone says something like that?

Lynne and I shared a love for movies and we went to several together. We saw Anna and the King and we both enjoyed the movie and the beautiful costumes.

Now, Lynne is gone and a few lines in the paper mark her passing, but don’t do justice to the warm, loving person she was. Her journey has ended, but I will always remember the way her face lit up with the joy of life.

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

Sunday, November 7, 2010

A Pac-Man Kind of Morning

Sunday morning I awoke to a sound that catapulted me into a déjà vu moment: Mario Karts. The Super Nintendo belonged to Jim and Mario Karts was his favorite game to play. My youngest son was sitting on the floor in front of the TV showing his three-year-old how to play.

“Put this game in, Daddy,” my grandson said.

So Rob popped in a different Mario game. While Rob played the game, my grandson was looking at the pictures on the other games. “Oh, put the pirate game in!”

“That’s actually Donkey Kong on a Pirate Ship.” But Rob put it in and started it up. Within a few minutes, that game was forgotten when another game pak caught my grandson’s attention.

“Play Race Cars,” was soon followed with, “Football!” My grandson happily pushed buttons on the football game and got all excited when he heard “First down!” It didn’t matter if it was his team or the other, he felt like he was part of the game.

“These games are pretty primitive,” Rob said. Compared to the realistic new games, they are indeed.

Rob picked up Ms. Pac-Man and started it. My seven-year-old granddaughter decided to play. She quickly caught on and alternately ran from the ghosts until Ms. Pac-Man gobbled a power pack and then she chased them.

“The Christmas we got the Pac-Man game we stayed up all night playing it,” I said.

“That was on the Atari,” Rob said. “It had a joy stick.”

I couldn’t remember what the old players were called and Rob reminded me that our first player was an Odyssey. “You played Pong on it by twisting dials,” he said.

The video games were never my thing, but Jim and our sons played many spirited games. They were competitive with each other and with their individual high scores.

My granddaughter became discouraged when she couldn’t clear the Ms. Pac-Man screen. “Try to beat your own score,” Rob told her.

It was the smaller score to the left of the high score still recorded from long ago. I don’t know whether the score was Jim’s or one of the kid’s. “I bet I could beat that high score in one game,” Rob said. Soon he had the first screen cleared and moved to the next level. It wasn’t long before a new high score replaced the old one.

What else could you expect from the son of the Game Master? Jim played for many years after he developed dementia. Some of the caregivers I hired to watch him while I worked played games with him. Jim was still a formidable player.

Jim passed down his love of playing games to our sons, and they, in turn, passed it on to our grandchildren. The game sounds brought back memories and I could feel Jim’s presence and imagine his big smile and laughter at small hands on the same game controls he had held so many times. Jim would have loved to see his son and grandchildren play the games he used to play.

This morning was a glimpse of what might have been but never was. Just another example of how each day dawns a little differently, and each sun sets a little askew.

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

Wednesday, November 3, 2010

Eating Out

I like to eat out and looked forward to eating out in a really nice restaurant in Kansas City this past weekend. It was Halloween and we were led to our seats by a soccer player. The waitress, a biker babe, took my order for a pork chop smothered in cheese, mushrooms, and sautéed onions.

When the pork chop arrived, it looked and smelled delicious. Then I cut into it and took a bite. It didn’t taste done and when I looked closer, I noticed the meat was pink. It is rare for me to complain, but when the waitress checked back to see how everything tasted, I said, “My pork chop isn’t done.”

“I’m sorry. I’ll get you another one,” she said.

In about ten minutes, a man dressed as a referee brought me another pork chop.

“How does it look?” he asked. Well, now, the other pork chop looked fine, but it wasn’t done.

“Yeah,” I said. “It looks fine.”

“What didn’t you like about the other pork chop?” he asked.

“It wasn’t done,” I said.

“It wasn’t done? They told us you said it was ugly.”

“Ugly? I never said that.”

He laughed. “Well I had never heard that one before, and we’ve been talking about it in the kitchen for the past ten minutes trying to figure out why the pork chop was ugly.”

We all had a good laugh. I think he was relieved that I hadn’t watched so many Food Network shows that I thought plating was the most important thing about the meal.

Later as I chuckled about the incident at the restaurant, I thought about some of the times Jim and I ate out and his dementia made it a challenge.

Jim liked to eat at certain restaurants, but he especially liked the food bar at Ryans. It became more difficult for Jim to make his selections. He would put gravy on his plate with the mashed potatoes on top. Eventually, we began to order off the menu. Jim loved steak, so I would order it for him. He always wanted tea to drink and he would mix several packets of sweetener in, stir, turn the glass up and drink it without stopping. The waitress would bring him another and he would repeat the process. Jim usually drank about four glasses before the meal came. He would give his steak a puzzled look. He didn’t seem to know what to do with the food. After I cut up the steak, he would pick up his fork and eat it.

Jim liked to eat at Eddie’s, a local drive-in turned diner. It is a place with lots of tradition and classic food. Jim’s favorite was the chili. One night we were leaving Eddie’s and Jim casually picked up some change from a table.

“Hey, give that back,” I said. “That’s her tip.”

“It’s okay,” the lady said.

“No, it’s not,” I replied and held out my hand for the change. Jim scowled at me, but he handed it over.

The next time when we left Eddie’s, I was helping him into the van when I noticed he had something clutched in his hand. I pried it open to find the salt shaker. I took it back in and found the table missing a shaker.

The waitress smiled and said, “Just when you think you have him figured out, he pulls something new, doesn’t he?”

That was an understatement. It was always an adventure when we went out to eat. Jim was unpredictable and sometimes I could sense people around us staring. Outwardly, he looked like any other man in his fifties, but his behavior was on the eccentric side. Jim didn’t notice the stares, and I got to the point where I didn’t care.

The thing about eating out—anything can happen. The meal may be mediocre, or it may be delicious. It may be Food Network fancy or it might be one ugly pork chop.

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