Presentations

Saturday, December 27, 2008

The Twelve Pounds of Christmas

After eating my way through the holidays, I think the popular Christmas song is misnamed and should be changed to the “Twelve Pounds of Christmas.” I always did find that song annoying and after “five golden rings” I was ready for it to end. If you think of it as food, five should be enough. Five holiday meals should be enough—let me count—yes, that’s how many I had.

Whew, sure glad I didn’t have six. If I gained two pounds at each meal and had six, I couldn’t stay within the twelve pounds and have any cookies, peanut clusters, caramel popcorn, fudge, fruitcake, solid milk chocolate bar, or any other holiday goodies to die for. With the damage to my cholesterol and triglycerides, “to die for” might not be a good expression to use.

I was going to go to the gym yesterday to minimize the damage, but they were among the businesses that closed the day after Christmas. If I reversed my habits and went to the gym three times a day and ate three times a week I would drop the twelve pounds of Christmas in a hurry.

I can’t even use the weather as an excuse to curl up on the couch and watch the snow fall. After a few days of bone chilling weather and frozen water pipes, we warmed up to 63 degrees. Yesterday my weather alert warned of flash floods, this morning the shrill alert was a TORNADO WARNING. A huge storm moved through the adjoining county to the southwest of us…not a good place to be when they normally move northeast.

Usually at least during a storm I run up and down the stairs with the question running through my mind—to the basement? Up the stairs? This is not the exercise I had in mind for two days after Christmas—the Stairmaster of Tornado Alley. That sounds like a combination of exercise and a video game.

Do I take my decorations down, or let them go to Oz? I wonder if a Christmas tree has ever had lightning come in on it. I’m enjoying my tree, but I hear the rumble of thunder through the sound of the pouring down rain. Christmas has come and gone, but as long as I leave up the tree and decorations, it looks like Christmas in my house. I may need to shut the blinds because it looks like a spring thunderstorm outside.

The good news is most of the food is gone. Well, I do have a cheese ball in the fridge. It should be good for a couple of pounds. Twelve pounds should not be insurmountable. I would need to lose a pound a month. I probably lost 100 pounds in 2008. Let me explain before you call Jenny Craig and give them my name for a new spokesperson. I lost the same five pounds over and over. I think my scales are stuck in a five pound section.

Jim used to think my agony over five or ten pounds was silly. He said I was the weight I was supposed to be and I was battling nature by trying to lose weight. “Everyone is different,” he said. “The difference between eating what you want and what your diet allows is about five pounds. Is it worth it?”

My doctor thinks it is, but I’m not really sold. Five pounds? Bah Humbug! Twelve pounds…break out the Melba toast.

Sunday, December 21, 2008

Secret Santa of Sedalia

Sedalia has gotten a holiday boost from our own personal hometown Secret Santa. This lady has spread good cheer throughout our community and has distributed $6000 of her own money to those in need. She has gone door to door, waltzed into Hardees and McDonald’s, the Salvation Army store, and caught people exiting their cars. Everyone’s first reaction is disbelief. When did we become so skeptical that we don’t believe in Santa Claus?

Like a true Secret Santa, her identity remains unknown. The Sedalia Democrat reporters follow in her wake to interview recipients. Out-of-work people, down-on- their-luck people, and worried-about-how-to-pay-for Christmas/taxes/heat/prescriptions—fill in the blank—people get tears in their eyes as they describe what they will do with their $50 or $100 the lady in red gave them.

We all want to make a difference in the world and here is one lady who found an anonymous way. She borrowed her idea from the millionaire Secret Santa in Kansas City. Larry Stewart's identity became known shortly before he died in 2007 after he had given away more than $1.3 million. Another Santa donned a red hat and continued the tradition in Kansas City, but this is our town’s first Secret Santa.

Somehow, I don’t think this lady is a millionaire. She might be, but I think she is just a caring, generous person who raided her bank account to spread Christmas cheer in a world where so many face hard economic times. Her gift comes from the heart without an ulterior motive of self-promotion. She cares, she loves, and she gives.

Most pictures in the paper are taken from an angle that hides her face. You see the flowing Santa “beard” and her face is obscured by the red-and-white Santa hat pulled low. One lone picture showed enough of her face that people who knew her well might have recognized her, but the photographers didn’t make that mistake again.

She is adamant that she remain anonymous. She doesn’t want public glory, only the private knowledge that she has made a difference in her own community.

“Yes, Virginia, there is a Santa” but he doesn’t live at the North Pole, she lives in Sedalia. “Merry Christmas” isn’t just a trite phrase to her, it’s a personal mission.

I tip my Santa hat to you, Ms. Secret Santa. Thank you for reminding us that the greatest blessing of Christmas comes from spreading good cheer and giving generously to those who have less than we do.

Sunday, December 14, 2008

Small Town Book Signing

Book signings aren’t for the timid or those lacking in self confidence. You may sit with pen in hand ready to sign the book you crafted with love and watch people walk by who refuse to make eye contact. You may sell one book, twenty books, or no books at all.

My sister asked me to have a book signing at her craft booth the day of the Stover Christmas Parade. It sounded intriguing to me to have a book signing in my old hometown.

I grew up south of Stover and rode the school bus for about an hour each way to go to school in town. When the bus bumped over the Rock Island railroad tracks, I read the “city” limit sign proclaiming the population to be 757. I think dogs and cats might have been included in that total. One of the advantages and disadvantages of a small town is that you know everyone.

Seeing a stranger was an oddity and noteworthy, especially since Stover had no tourism. On a hot summer day in 1968, I met a young man with the broadest shoulders I had ever seen. Jim’s uncle introduced us in front of the Dew Drop In Cafe. Jim still wasn’t a total stranger since his Uncle Orvie knew my mom and her brothers and they played music together.

After Jim and I married, we moved away from the area, and other than visiting my folks, I never spent much time in Stover. On my rare visits, I sometimes saw people I once knew well, but I no longer recognized most of them. People change and, gosh, how “they” have aged!

The week before the signing, the local newspaper ran an article about me complete with picture. Funny, how I looked like my mother in that picture. I was hopeful that a few people would read the article and show up for the signing. I took my book, Alzheimer’s Anthology of Unconditional Love, and A Cup of Comfort for Families with Alzheimer’s. At most book signings I only have non-fiction Alzheimer’s books, but this time I took Well Versed and Echoes of the Ozarks which include some of my fiction stories. I saw people I hadn’t seen in years, sold a lot of books, and really enjoyed the book signing.

Last week, I was the guest on a local radio talk show with Jack Miller. We talked about Alzheimer’s and about the two Alzheimer’s books. More than five million people in the U.S. have Alzheimer’s, so odds are you know someone with the disease. Either book will help you understand how the disease affects the entire family.

This Friday, I have a book signing at Sedalia Book and Toy. I will be signing my book and my story in the Cup of Comfort book. Sedalia Book and Toy manager, Sandy Diamond, sent out invitations to people we thought might be interested in coming. I e-invited others and have a list to still invite. I’ve lived in Sedalia for thirty-five years so this is my second hometown book signing this month.

If you are in Sedalia December 19 between 2 and 4, please stop by Sedalia Book and Toy and browse through their great books. If you want to learn more about Alzheimer’s and become a better friend, family member, or caregiver for someone with dementia, stop by my table. Whether you buy a book or simply pick up free Alzheimer’s brochures, don’t be afraid to make eye contact.

Sunday, December 7, 2008

Ten Thousand Cicadas and a Drummer Boy

Health wise, last year was my luckiest ever. I missed all the sickness and didn’t have so much as a cold. We all know what a difference a year can make.

Last week, I came down with a cold. I can handle a measly little cold by taking one day really easy. So, I spent last Sunday self medicating, fully confident that Monday would be full steam ahead.

I felt better Monday morning so I went to work at 7:00 a.m. as usual. About 10:00, my ear stopped up. I called the doctor and he penciled me into a 12:00 cancellation.

“You have an ear infection,” he said. He wrote a prescription for an antibiotic and sent me on my way. By now the whole left side of my face throbbed.

At Wal-Mart, I dropped off the prescription at the appropriate window and went to buy some chicken soup and green tea. While I shopped, I remembered the problems Jim had with his ears and how he couldn’t tell us how it hurt. Jim had aphasia and rarely spoke so it took observation to determine when he wasn’t feeling well. One time, his balance was off, and a nurse at the nursing home decided to take him across the lot to our family doctor’s office to have his ears irrigated.

“Does he speak at all?” the doctor asked the nurse as Jim silently sat on the examining table. The doctor visited Jim regularly in the nursing home and hadn’t heard Jim say anything in years.

“Not much,” the nurse said.

The doctor poked an Otoscope in Jim’s ear to take a look.

“Jesus Christ!” Jim yelled and jumped off the examining table scowling at the doctor.

“I thought you said he didn’t talk,” the doctor said.

“I said, ‘Not much’,” she replied.

I pushed my thoughts of Jim aside and got in line behind a woman with coupons and questions dealing with a novice checker. Ten minutes later, I paid for my few items and headed back to the pharmacy to check on my prescription. After I stood in another line, I picked up my medicine and headed home.

By now my ear sounded like it had ten thousand cicadas in it. Occasionally it would “thump” like the little drummer boy had given it a whack. After all these years, I began to think of an ear drum as a real drum.

After a short winter’s nap, I woke up and the pressure wasn’t as bad, but I felt liquid in my ear. I used a Kleenex to wipe out my ear and bright red blood covered it. I called my doctor at home. He explained how the pressure had ruptured my ear drum, but he was confident that it would heal. “I never knew of anyone to bleed to death from their ear,” he said.

Oh, crap. I hadn’t even thought of that! Didn’t the cowboys in TV westerns often bleed from their ears right before they died?

The doctor was correct, and I didn’t bleed to death and the ear eventually stopped hurting. I’ve become accustomed to the humming and the drummer boy has laid down his sticks. I can’t hear well out of the ear yet and my sound perception is askew. When I turn on the water, it sounds like it is running somewhere off to my right. My hearing has always been excellent and I thought God was compensating me for my poor eyesight. According to Google, my ear drum will probably heal on its own, but I have a few options if it doesn’t before I need to break out the hearing aides.

For now, it’s always summer in my ear, and it’s a good year for cicadas.

Saturday, November 29, 2008

A Christmas Tradition Upgrade

I want to thank everyone who helped the economy by following tradition and shopping on Black Friday, especially those of you who did not trample anyone in the process. That had pretty much been a joke until this year when a young man was killed by a stampede of bargain hunters at a Wal-Mart store in New York.

My one and only experience of Black Friday shopping occurred probably thirty years ago. I let my sister-in-law talk me into standing outside K-Mart waiting for the doors to unlock. I felt suffocated by the crowd when we all crammed through the doors. Thank goodness no one stood in the path.

Inside the store, people grabbed and slam dunked merchandise into their shopping carts. I was pushed and shoved aside while frantic Christmas shoppers jerked merchandise out of my hands. Finally, I walked out of the store without buying anything. To me, this was the ugly side of Christmas and only verified Jim’s mantra, “Christmas is too commercialized, and no one remembers what it’s all about.” The birth of Christ was less important than department store Santas.

Jim was called “Scrooge” and “Grinch” because of his lack of enthusiasm for presents. It was up to me to purchase all the gifts because he wanted no part of it. Our anniversary is five days before Christmas and Jim always wanted to exchange our gifts on that day, but I always held back a few “Christmas presents.” We married young and I had a lot of growing up to do before I finally admitted that Christmas had become a time of pressure for me and lacking in the “Merry” department.

From the time our kids were small, we always celebrated Christmas on Christmas Eve. After they were grown, we began to limit our gift giving to one small gift. Men bring a gift for a man, and women bring a gift for a woman. The first year we had the gift exchange, my youngest son said, “This is it, Mom. Do not buy anything else!” From that moment, I no longer had to worry about size or taste, want or need for any of the adults in the family.

Then the grandkids were born. Soon we were back to buying loads of presents. Even Jim got involved in the search for toys to make their eyes light up. Have you noticed how hard it is to buy for kids, especially when they get older? The presents start getting more expensive and the kids more particular. You begin to think you are throwing money at gifts that just get pushed to the back of the play room.

A few years back, I begin to notice I was spending more and more money for fewer presents and didn’t always feel good about my selections. Then, I came up with an idea. I began to buy my grandkids Certificates of Deposit for their education. I still get them other gifts, but I don’t feel like I have to buy them a “big” gift. The big gift is something they won’t outgrow or push aside after a few hours of play.

Traditionally, my kids, grandkids, and a few special people come to my house on Christmas Eve. My youngest son, Rob, makes his chili and we have a deli tray. It is a relaxed, joyful celebration. This year, Rob is on call and can’t come. He says that will be true for the next seven Christmases! After throwing a few ideas around, my oldest son, Eric, suggested we have our celebration on the Saturday before Christmas. It is such a brilliant plan that I couldn’t imagine why I hadn’t thought of it.

The CDs are bought, I have my “woman’s gift” and a few hours of leisurely shopping and I’ll be done. No Black Friday required! I feel good about Christmas, and I know Jim would have liked our tradition upgrade. After all, this year’s gift exchange will be on the thirty-ninth anniversary of a Hawaiian wedding between a college student and an Army Sp/4 on R&R from Vietnam.

Sunday, November 23, 2008

It’s Easier to Be Thankful if You’re Not a Turkey

Thanksgiving is one of my favorite holidays, but for most people it just gets lost between Halloween and Christmas. As soon as the Halloween costumes and decorations go on sale, Christmas carols fill store aisles with holly jolly holiday tunes. The TV Guide is jam packed full of Christmas specials and Christmas music plays in about half the commercials. A nearby town had their Christmas parade this weekend—a full week before Thanksgiving!

Some people already have Christmas decorations up, but I’m still in autumn mode. I don’t want to skip Thanksgiving. It’s time to reflect on the things I’m thankful for. The economic crisis has made me think about things I normally take for granted. With my hemorrhaging 401K, I’m thankful I’m still employed. With all the defaulted mortgages, I’m thankful my home is paid in full.

I’m thankful none of the diets I’ve gone on have worked. I have extra pounds to tide me over if I have to cut back on my grocery bill. If I miss a few meals, I will be thankful to have an entire new wardrobe of “skinny” clothes in my closet.

My car has more than 100,000 miles on it, but I’m thankful I do not have a car payment. I’m thankful that gas prices have dropped, and I no longer feel like I need to take out a loan to fill my tank. Maybe I can actually go somewhere now.

When every bone in my body aches, I’m thankful that I’m not a herring. (OK, that’s an old joke and I “borrowed” it.)

I am most thankful that I have family and friends that I love. I’m thankful my sons married terrific women and my four grandchildren are healthy. I’m thankful my cat has to sleep from time to time and isn’t climbing the walls twenty-four/seven.

Maybe we just need to slow down a bit. At least enough that we do not miss a holiday that only involves gathering family together and eating ourselves silly. It reminds me of home, pumpkin pie, dressing, cranberries, and turkey. How can people not love this holiday best of all?

Thanksgiving does not have the pressure of Christmas. No one expects us to put on our happy face and know the ideal gift to buy. It is perfectly acceptable to be reflective and a bit pensive at Thanksgiving. No one is forced to be merry and ho-ho-ho at every opportunity. We can be ourselves at Thanksgiving without being called “Scrooge” or someone saying “Bah-Hum-Bug!”

Have you ever noticed that people will ask you what you got for Christmas, but they won’t ask you what you are thankful for on Thanksgiving? We really aren’t pressured to be thankful.

I’m thankful that I’ll be eating a turkey instead of being a turkey served as the main course on Thanksgiving Day. Yes, everyone except turkeys can surely find something to be thankful for. If nothing else, just be thankful that if you aren’t thankful no one else will take it personally. So have a happy turkey day if you want. Be thankful, if you so desire. But please, please don’t forget Thanksgiving in your rush toward Christmas.

Sunday, November 16, 2008

Life's Unsolved Mysteries

A good mystery book ends with the mystery being solved, but we go through life with a series of unsolved mysteries. At any particular time in our lives, we puzzle over why things happen.

Why did a relationship end? Why do nations fight wars? Why do people develop life-changing diseases like Alzheimer’s? The “whys” of real life mysteries can drive us berserk.

Last night, I picked up the Sedalia Democrat and two front page headlines caught my immediate attention. “Fundraiser planned for Bruce reward coffers” was an update on Dana Bruce, a 23 year old mother of two, who went missing on October 5. Flyers with Dana’s picture are posted at most Sedalia businesses. Wooded areas have been searched and a person of interest interviewed, but Dana is still missing and nothing has been resolved.

Another story on the front page “Missing wife’s husband arrested” is about Michael Yarnell’s arrest in connection with the disappearance of Michelle “Angie” Yarnell. Twenty-eight year old Angie disappeared October 23, 2003 from the Ivy Bend area of Morgan County. Angie’s husband claimed she ran away with another man. Michael Yarnell admits to sending a postcard to Angie’s mother indicating that Angie was alive and well and on her way to Texas. Where is Angie? That question still can’t be answered five years later.

Hopefully, these mysteries will be solved eventually. If family members do not have a happy reunion with their loved ones, they will at least find closure. It seems that no matter how bad the news, we face the known with courage, but we fear the unknown.

What were Dana’s goals before she went missing? What were Angie’s dreams? Whatever happened to these young women, their lives veered from the pathways they had traveled. Their fates are unsolved mysteries.

Why did Jim develop dementia? What happened to our hopes and aspirations? This is my life’s greatest unsolved mystery.

Life is not a book, and we are not the authors of our own pages. Too many times, our biographies are cut short, and our legacy is an unfinished manuscript with a lot of loose ends. Our pathways through life are mysterious, and we don’t know exactly where they lead or when they will end. We do our best to conquer our fear of the unknown and complete our journey with faith that in the end we learn the answers.

Saturday, November 8, 2008

Taking Inventory

At work we are conducting our annual inventory. I’m no longer directly involved in the process, but I remember the headaches, frustration, and anxiety of trying to reach an acceptable discrepancy between what you have on hand and what you should have.

This morning, I have been cleaning house, and I thought about all the stuff that I have crammed into this house after eighteen years of living here. I can’t imagine taking inventory of all the items I own. In the first place, I would have to find everything. I’m still looking for the computer connection for my MP3 player. If I ever find it, will it be in a logical place, or some place where I stuck it to get it out of the way? It wouldn’t get counted in the inventory if it’s still missing.

Jim used to call me Imelda Marcos Junior because of all the shoes I have. The last time I counted (at his insistence!) I had fifty pair. As far as how many pair I have now—we won’t go there. I watch these people on TV help packrats like me clean their closets. “You have a hundred tee-shirts? Oh. My. God. Throw ninety-seven of them in this big trash can and we will buy you a new wardrobe.” Nope. Keep your new wardrobe. I like my memories. I just need a bigger closet!

If my 401K completely disappears, I could live by selling my stuff on E-Bay. I wouldn’t even miss most of my “inventory” for a few years.

I no longer count my collectibles. I display part of them and pack part of them away. Seasonal decorating gets to be such a pain, that I wonder why I do it. I need to take down Halloween and put up Thanksgiving. Fortunately, those two overlap some. I hate to take down my fiber-optic witch before anyone gets to see it. Last year I left my decorations up for a few extra days and my granddaughter said, “Halloween is OVER, Grandma Linda!”

Sometimes when I have a moment of quiet time, I begin to think strange thoughts. Last night as I drove home, I began to think about things I’ve done in my life that I wish I hadn’t. Things that I knew were wrong, but plunged into them anyway. I began to take inventory of my dark side. When we ruminate, it’s our failings that bear heavy on the soul and seem to clog up the inventory. In fairness to myself, I should inventory my accomplishments and the good things too.

I’ve always heard that we should count our blessings which sounds like another inventory. Thankfully, I couldn’t possibly inventory my blessings either. Not even an industrial strength calculator would be capable of that task.

So, at work, inventory is bogged down and holding up my October month end closing, but in my personal life, I’m just plugging along. I’m the only one accountable for any discrepancies between what I have and what I should have, and more importantly, the person I am and the person I should be.

Sunday, November 2, 2008

Remembering American Veterans: Some Gave All

Branson celebrates “Veterans Week” out of respect for those who served our country. For several years, Jim and I traveled to Branson for this annual event. Patriotic songs are performed by talented people dressed in glittering red, white, and blue costumes.

Our first stop in Branson was always the 76 Music Hall where we registered Jim for his ARMY, 169th Engineers, Vietnam nametag. Until we began to celebrate Veterans Week in Branson, Jim had not experienced the pride associated with fighting for his country. Jim and I both had tears in our eyes when a man saw Jim’s nametag and shook his hand. “I just want to say thank you, and welcome home.” Vietnam veterans returned home one at a time on commercial airlines—no parades, no thank you, no appreciation.

Vietnam irrevocably changed Jim. He felt more stigmatized than honored for most of the years following his tour of duty. Jim suffered from post traumatic syndrome before anyone knew what it was. He became withdrawn, suicidal, paranoid, and sank into a dark depression. Eventually, he received psychiatric treatment and with medication improved. Yet, throughout the remainder of his life, Vietnam was a burden on his soul.

At a Country Tonite show, one of the performers sang, “All Gave Some, and Some Gave All.” Most people probably think of the soldiers who died on the battlefield as the ones who “gave all.” Jim stood beside me in the darkened theatre, his solemn face changing colors because of the flashing stage lights. As I held his hand, my arm brushing against the denim of his Levi jacket, I knew in my heart that Jim was one who gave all.

Today, my sister-in-law and I visited the Veterans Cemetery in Higginsville to place red, white, and blue flowers in front of Jim’s niche in the columbarium. The cemetery, peaceful and quiet, beneath a cloudless blue sky, is in stark contrast to sweaty soldiers carrying M-16s through a Southeast Asian jungle.

How many will pause on November 11 to honor our veterans? Or has Veterans Day simply become another excuse for retail stores to have a sale? I know that in Branson, at least, veterans will be thanked, honored, and welcomed home with a parade that begins at the 11th hour, of the 11th day, of the 11th month.

As long as our country sends troops throughout the world to fight in wars, it is our obligation to provide support to veterans for as long as they need it. Outer wounds are visible, but scars on the heart may be the deepest. All gave some and some gave all to keep the stars and strips flying high and proud over this country.

Sunday, October 26, 2008

Never Too Old to Learn from Mistakes

Those of you who read my posts on a regular basis know that I’m always up to something. My hectic lifestyle allows me to sample a smorgasbord of new experiences and gives me ample opportunity to make mistakes. I believe that mistakes are the most powerful teachers I’ve ever had.

At Alzheimer’s Support Group, the best advice I can give to people who are just beginning the dementia journey is to tell them what to avoid, or “not do.” I hope others can learn from the mistakes I made during my ten years of caregiving. Some of life’s greatest lessons are the result of mistakes, and it’s always better if we don’t have to make them ourselves.

An incident this week reinforced my belief that I am never too old to learn. First, I learned that it is a bad idea to decorate a food table with tea lights although it makes the petite sandwiches, fruit and vegetable laden table, lovely. I also learned that paper napkins are quite flammable and when someone reaches for food and dangles a paper napkin over a burning candle, fire happens.

This leads to another lesson: a lace tablecloth can catch fire quickly if a blazing napkin comes into contact with it. Before the tablecloth reaches the flash point, you need to knock the napkin off the table and onto the tile floor and stomp it. I learned that burning napkins totally disintegrate and leave only a few pieces of ash and a scorch mark on tile.

The only way to know if you pass the final exam for all the lessons you learn in life is whether you can brush the ashes off the floor and press onward. Did you know that Comet cleanser removes tell-tale yellow scorch marks from a tile floor? I didn’t know that, but someone else had already learned that lesson. We can’t always “erase” our mistakes with Comet, but we can’t let the fear of making them hold us back.

Saturday, October 18, 2008

The Day the Music Died

I went to our local Liberty Center last night with a group of BPW ladies to watch the Buddy Holly Story. The day that he, The Big Bopper and Ritchie Valens died in an airplane that took off in a snow storm from Clear Lake, Iowa, is referred to as the “day the music died”. The play begins with a man, hat pulled low, playing an acoustic guitar and singing about the day the music died. Buddy Holly takes the stage and plays a Fender guitar that immediately reminds me of Jim’s 1952 Fender Telecaster. In a scene I found particularly poignant, Buddy picks up a guitar and sings a song just for his wife.

Unless you have been personally serenaded, you do not understand the intimacy of a song meant just for you. Certain songs Jim played were always meant for me regardless of how many people were in the room. Some of the special songs were Buck Owens’s version of “Cinderella” and Elvis Presley’s “Tender Feelings.” These songs expressed Jim’s own philosophy and capacity to love. He would strum his guitar and sing, “There wasn’t any palace and you weren’t a queen, In your faded cotton dresses anyone could see…but you’re still Cinderella to me.” Another Elvis song he sang for me was, “Come take what I offer you, and kiss me tenderly, and you will be forever young, and beautiful, to me.”

I don’t remember the last time Jim sang a special song for me. I don’t remember the date or the year. He lost his songs one-by-one but I remember one June day in 1999, he picked up his Fender Telecaster and played Buckaroo without a flaw. Jim’s music didn’t die in one tragic day—it faded away over ten years.

When I watched the play last night, I was reminded of Jim saying, “Waylon Jennings was supposed to be on the plane, but he gave up his seat to Ritchie Valens.” When you think about the talented people killed on that plane, you can’t help but feel a sense of loss. How high would those young and upcoming stars have risen with their careers?

In a sense, the singers killed February 2, 1959, have been immortalized in movies, plays, and with their recordings. They died, but their music didn’t—only the music that could have been.

The show symbolizes loss, with the man returning to the stage, hat pulled low as he sings about the day the music died. The lights go low and Bart Kuhns as Buddy Holly returns to the stage to sing a rousing rendition of “Johnny B. Good”. The show ends with the audience on their feet, clapping and smiling.

That’s the way life should be. Instead of crying over what could have been, we need to rejoice in the music that lives in our hearts. The music only dies when we let it.

Sunday, October 12, 2008

Retirement Dreams

The world economic meltdown has endangered a lot of retirement dreams. Wall Street hit Main Street when American workers lost $2 trillion in retirement savings. Hardest hit are Baby Boomers who watch 401k’s turn into 201k’s. My 401k has lost more than $30,000 this month. I’m sure that’s only peanuts to a CEO who draws a multi-million dollar salary, but where I come from, $30,000 is a lot of money.

Those of us who believed “diversified” retirement portfolios would help us weather hard economic times have been rudely awakened to a new reality. Not only are stocks going down, but our safety net, bonds, are losing value too. In our efforts to out earn inflation, we fell victim to the fickle stock index.

I have always put as much as I could into my 401k because I want a secure retirement. The money that went down the tubes could have bought a lot of things. Not that I really need anything I don’t have. My home is eighteen years old, but it doesn’t have a mortgage. My car has more than 100,000 miles, but I own it.

I have chosen not to let my shrinking 401k ruin my life. I’ll be OK in my retirement. It just may be a lot farther in the future than I thought it would be. Or, it may not be as financially stable as I planned it to be. It irritates me that I put money aside for almost thirty years to see it become the incredibly shrinking fund. Irritates me, but does not depress me, or scare me. I grew up poor, and I have no fear of poverty. I really don’t want or desire a lot of material items. The Dow Jones Industrial Average and the S&P 500 will not dash my dreams!

This is the second time I’ve made major mental adjustments to my retirement expectations. The first time was when Jim developed dementia, and I realized we were not going to grow old together. Jim’s retirement dream was to purchase a motor home and travel.

Now I plan to enjoy the peace and quiet of home with occasional trips to the Rocky Mountains, the Oregon Coast, or other places that pique my interest. I want to spend a lot of time with my family and have more time to write—neither of which is costly. I can still retain ninety percent of my retirement dream irregardless of what happens in the stock market. Home-brewed coffee on my deck sounds good to me and costs only a fraction of Starbucks. I look forward to my share of total relaxation, deep breaths of fresh air and sunshine, squirrel and bird watching. With slight adjustments, futures are looking up for retirement.

Saturday, October 4, 2008

Poltergeist or Short Term Memory Loss?

Do you believe in ghosts? Recently, I answered a survey about ghosts in the affirmative: “Yes, I believe in ghosts.” More than 70% of the people answering the survey said the same thing. Enough strange things have happened in my life that I don’t scoff at the idea. Jim always explained weird things by saying, “It’s just harmless poltergeist.”

September 30 was one of those days when strange things happened to me. It was the anniversary of my dad’s death, and he died on the anniversary of his dad. As I left the gym, my thoughts turned to a friend of mine who had died in 2005 and how a Rod Stewart song makes me think of him. I always seem to hear the song on his birthday and the anniversary of his death. I just realized the date had passed and I hadn’t heard it this year. I turned left on 65 Highway a few minutes later and the song came on the radio. That’s creepy, I thought.

I drove home and walked into my house to discover a plastic bag in front of my coffee pot. Oh, Ginger must have left something for me. Curious, I picked up the neatly folded bag and looked inside. It was my cat’s medicine which is normally on top of the refrigerator in a basket. I called Ginger, “Did you put Katrina’s medicine on my counter?”

“No, I haven’t been in your house today.”

I felt prickles on the back of my neck. “I don’t know how it got there,” I said, “but this is weird.” I walked through the rest of the house and didn’t see anything else disturbed.

I called my son, “Were you in my house today?”

“No, why?” I told him my story about finding the cat’s medicine on the counter where it hadn’t been when I checked my coffee pot just before I left for work.

“Could Katrina have knocked it off the refrigerator?”

He knows how Katrina climbs and although she once managed to break one of my light fixtures, even she couldn’t have gotten something off the refrigerator and folded it neatly on the counter across the room.

“Oh, Mom, you probably took the medicine down and got interrupted.”

About that time, a loud knock startled me. It was Ginger. She and I checked all the doors and they were all still locked, with deadbolts in place.

“I know I didn’t get that medicine down!” I said. “This is creeping me out. Why would someone come in my house and put Katrina’s medicine on the counter?”

Ginger said, “This is creeping me out too!”

“Well, it wasn’t Jim,” I said. Jim always reminded me to give the dogs their medicine. “I didn’t find Katrina until after he died. And it wasn’t my Dad because he didn’t like cats.”

So how did the medicine get on the counter? The logical explanation is, I did it, but don’t remember doing it. Does this mean I have short term memory loss?

Which is truly scarier—short term memory loss or poltergeist? ...Does anyone have a phone number for Ghost Busters?

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)hotmail.com.

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.

Saturday, August 30, 2008

Labor Day Weekend

Labor Day weekend has traditionally been one of my busiest weekends. Is that a paradox? I would think the purpose of the holiday is so people like me who have worked the greater part of our lives could relax, picnic, and basically rest on our laurels.

This is family reunion weekend for Jim’s family, my family now. We meet at the biggest shelter at Liberty Park. When I first attended the family reunion, the Fishers played music and sang. People wandered in from all other shelters in the park to listen to the music.

Sometimes we’ve huddled in our coats, and I remember my father-in-law, Bill, building a fire in the fireplace to ward off the chill. We’ve been there in rain, thunder storms, suffocating heat, and once in awhile, absolutely perfect weather.

Jim’s mom, Virginia, used to bake dozens of her delicious light rolls and cook a big pot of beans. We all look forward to Dinah’s chicken and noodles and Ginger’s potato salad. Along with pies, cookies, and brownies, we’ve had birthday and anniversary cakes.

Jim always looked forward to the reunion. We were usually at the park by 9:00 a.m. so he could set up microphones and amplifiers. The last time he went to the reunion, I picked him up at the nursing home. It was not a good day and not a good idea. He became upset and remained that way for days.

The older you get the more bittersweet family reunions become. It’s great to see family you haven’t seen since the last time, but you can’t help but feel sad about the ones who will never be at the Liberty Park reunion again. A new generation has taken over and those of us who have held to the tradition see our grandchildren play on the swings, slides, and merry-go-rounds. Once it was our children. Life goes on and laughter rings out as we celebrate the bond of family.

I wonder if when the younger generation plays music tomorrow I will hear echoes of other reunions. If I think of how Uncle Charles always called me his “sweetie.” Will I hear the ring of horseshoes clanking on the post, and Jim’s laughter as he shares a joke with Uncle Orvie?

When we pack up our Crockpots and pass around goodbye hugs, we are already looking forward to next year, seeing old acquaintances, and greeting new family members. After all, why are we in the labor force, if not for family? So maybe the illogical way to spend the day is in seclusion totally relaxed.

However you spend your Labor Day, I hope it is worthy of a weekend that celebrates a full and productive life. Part of life is work, but the all consuming part of life is family and being with the people you love.

Sunday, August 24, 2008

Open Mike – Live Radio

Linda Newkirk, the executive director at the Alzheimer’s Association Mid-Missouri Chapter, joined me on KDRO, a local radio station, for a program called Open Mike. We talked about Alzheimer’s disease and our local Memory Walk.

I don’t know how many people are awake at 8:00 a.m. on a Saturday to listen, but it is a popular program. It gave us a golden opportunity to talk about the September 20 Sedalia Memory Walk and to let people know about the Chapter’s services.

I call myself the Alzheimer’s Association Poster Child. I’ve benefited from my acquaintance with the great staff at the Mid-Missouri Chapter since my initial contact when Jim first developed symptoms. The Alzheimer’s Association symbol used to be two people leaning into the “H” of the word Alzheimer’s. The slogan was “Someone to stand by you.” The logo has now changed to a stylistic symbol of a brain and a beaker, which represents the Alzheimer’s Association dual mission to support people living with the disease (and their caregivers) and research to find a cure for Alzheimer’s disease. The symbol has changed, like so many things do, but the heart beat of the organization is the same.

What qualifies me to be a poster child? My first contact with the Mid-Missouri Chapter was through a call to the 24 hour/7 day a week HELP line and, yes, I was connected automatically to my own chapter. I read every word of the literature they sent me and the Chapter newsletter. The only financial help I received for respite care was from the Alzheimer’s Association. They were the only ones who didn’t say Jim was too young to qualify. I registered Jim with Safe Return when he began to wander off. I attended educational programs that helped me develop caregiver strategies and learn more about dementia. Support Group was invaluable to me, and I can’t imagine why everyone doesn’t gather strength from others who know exactly what they are going through. I became an advocate and talked to my legislators on Memory Day and at the Public Policy Forum in Washington DC. I learned even more about the dedication of everyone involved at the Mid-Missouri Chapter during my six years as a Board Member. I developed friendships with staff, board members, other caregivers, and amazing people living with Alzheimer’s.

Jim and I participated in the 1998 Memory Walk with five other people and one dog. I followed that up with five years of being the Coordinator of the Sedalia Memory Walk. Our walk grew to embrace the entire community. As fulfilling as that experience was, I turned it over to Shelley who did a terrific job for the next four years. This year we have a new inexperienced coordinator and she is struggling. So, when they asked me to go on Open Mike, I was happy to talk about our Memory Walk. It was my baby, and I want it to continue to grow strong and healthy.

On the radio, Linda Newkirk and I talked about how Alzheimer’s affects entire families and how Memory Walk allows individuals to make a difference. Saturday, September 20, Sedalia will be on the MOVE to end Alzheimer’s.

Each September, Jim’s Team honors his memory at the Sedalia Memory Walk. This is our time to give back to the organization with “the compassion to care, the leadership to conquer.”
_______________________________________

The Sedalia Memory Walk is September 20, at the Highway Gardens on the Missouri State Fairgrounds. Registration begins at 8:30 and the one-mile stroll begins at 10:00. You can register at www.alz.org/Mid-Missouri or email me at lfisher@lsfisher.com.

Do you know when and where the Memory Walk closest to you takes place? You can go to www.alz.org, to search by state for your local Chapter’s Memory Walk schedule. Lace up your walking shoes and support the 5.2 million Americans with Alzheimer’s.

Sunday, August 17, 2008

Life is Worth Living

I’m still on a bit of a high three days after the Alzheimer's Association OK/Ark Chapter’s educational symposium at Fort Smith. I was thrilled to finally meet Cheryl, Bob, and Jordan after months of emails setting up my two presentations.

Ft. Smith is a town that welcomes visitors with open hearts. Mayor Baker proclaimed August 14 “Linda Fisher Day” and presented me with the “Key to the Frontier.” The town motto is “Life is worth living in Ft. Smith!”

The day’s program began with “Writing as Therapy: Rocks and Pebbles” at the first general session. After a few opening remarks, I managed to knock over my glass of water and watch as my notes blurred into a soggy mess. It didn’t make any difference because I’m such a believer in the therapeutic benefits of writing that the notes are primarily to keep me on schedule.

I gave the keynote, “Alzheimer’s Can Happen at Any Age,” following the awards presentations. It may have not been an accident that all the breakables had been removed from the podium area prior to my presentation.

The Alzheimer’s Association offered a variety of programs to give family and professional caregivers skills and encouragement to continue with their important missions. Dr. Ed McMahon’s session on “Non-Pharmacologic Interventions” gave examples of how thinking outside the box can benefit people with dementia. Sandy Warmack and Jean Cosgrove facilitated a work shop called “It’s all the Rage.” Earplugs and rolled up construction paper helped us understand the limitations of a person with Alzheimer’s. Several other concurrent sessions were offered, but these were the ones I attended.

The educational symposium energized the participants and motivated them to be the best caregivers they can be. The positive feedback I received made me realize how important it is to share my years of caregiving experience with others who are beginning this journey.

No matter how much it may seem that way, life is never all bad. Moments of joy penetrate our saddest moments. It may be a smile, a touch, or a look that says “I remember” too. Sometimes I am amazed that I walked into the long dark tunnel through the land of dementia and emerged on the other side alive, happy, and optimistic. Most important, life is still worth living in Ft. Smith and in your hometown.

Saturday, August 9, 2008

Double Booked

Some people think I’m insane when they see my calendar. Others just think I don’t realize each day has only 24 hours. Sometimes, I find myself double booked. Last Monday night I had two meetings at the same exact time, across town from each other. Just cancel one? Oh, heavens, no! I went to my BPW board meeting first, and then to the other, longer Memory Walk planning meeting.

Thursday night, I had a dinner meeting, on the opening day of the State Fair. After the meeting adjourned, three of us went to the fair and caught the end of the Air Supply concert. Who says you can’t do it all?

Friday was my day off, but my plans for the day: work a few hours, eat grilled hamburgers at the going-away lunch for our summer employee, and make my 1:15 appointment at W-K Chevrolet to get my oil changed. And then, what the heck, I might as well go to Brian’s Gym for a workout. Not a problem. Except, I got sick Thursday night. I’ll spare you the gross details, but I was violently ill. Kind of reminded me of the time I had food poisoning. That time, Jim hauled me into to the emergency room. After waiting two hours and no doctor in sight, I decided if I was going to die, I would much rather die at home in my own bathroom than the hospital’s public restroom.

I spent Friday totally wiped out. I slept, drank a little water, ate a few bites of bread, slept, called and cancelled everything, slept, and slept. By evening, I felt better so I stayed awake for a few hours, and then went to bed and slept through the night. When my alarm went off this morning—yes, I know it’s Saturday but I had a conference to attend—thankfully, I had slept off my illness. Late this afternoon on the way home, I stopped by work and finished the reports I planned on doing yesterday.

Have I always been like this? No! I became possessed after ten years of being a caregiver. All primary caregivers of loved ones with Alzheimer’s know about the 36 Hour Day. As crazy as my calendar is, it is still calm compared to that of a caregiver.

I’m not sure what happened to the person I once was, but I think she evaporated into a puff of smoke. What happened to the days when I couldn’t find enough to do? What happened to curling up with a book on a rainy day? What happened to my own personal concerts with Jim singing and playing his Fender guitar?

Early onset dementia changed everything. I’m not the person I used to be, and I will never be that person again. I will never take life or love for granted.

Double booked? So what? At least I’m not triple booked. Often.

Saturday, August 2, 2008

News from ICAD: Elderspeak Increases Resistance to Care

Researchers are not only trying to find a cure for Alzheimer’s, they want to improve quality of life and improve the standard of care for people with dementia. The results of an ongoing study released at the 2008 Alzheimer’s Association International Conference on Alzheimer’s Disease (ICAD) involves communication. Researchers used “Elderspeak” to define a communication method similar to a parent using baby-talk phrases such as, “Sweetie pie, it’s time for us to get up now” or “That’s a no-no!” This study validates what we caregivers knew all along: Our loved ones with dementia are adults and need to be treated with respect.

During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.

Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.

When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.

Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.

Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.


Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at http://www.alz.org/. The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.

Monday, July 28, 2008

Expect Delays: No Center Stripe

Jim and I used to go to Branson several times a year. Now, I make the trip with friends, my mom, sister, or my grandchildren. Last weekend, I traveled with my grandchildren.

Along Highway 65 on our trip, we hit road construction. Warning signs were posted: Road Construction, One Lane Ahead, Expect Delays. A flagman held a STOP sign. We waited in a line of vehicles while north bound traffic traversed several miles of a single lane. While we waited our turn, a blue Chevy pickup behind me swerved into the other lane, the driver’s head bobbing like an out-of-control bobble head doll as she contemplated whether the STOP sign applied to her.

The north bound cars dwindled, and we proceeded on our way at a speedy 45 miles per hour. Past the one-lane road, the signs read No Center Stripe. This sign means so much more than it says. It’s obvious that the road has no center stripe. But too many drivers, like the lady in the Chevy truck, have no concept of why the sign is there. Suddenly, you don’t have the Missouri Department of Transportation tell you which areas are unsafe for passing. You actually have to use common sense.

Ms. Bobble Head continued to swerve around, debating on passing me so she could be stuck behind the semi in front of me. Fortunately for her, traffic was heavy enough that on-coming cars prevented her from risking her life, and ours, in a foolish attempt to pass where the road department will surely paint yellow lines.

Of course, the grandchildren and I were not happy about the delay on our trip to Branson and Silver Dollar City, but that’s summer in Missouri. Life is like a highway without a center stripe, and we can expect delays along our journey. Every day we make decisions that can affect the remainder of our lives, and those decisions often affect others. We just need to use common sense, and watch out for the bobble heads.

Sunday, July 20, 2008

Out to Lunch

Although I’m a writer and speaker, I continue to work at my day job for those little necessities like food and health insurance. My job as an office manager is fulfilling and challenging enough to hold my interest. We work ten-hour days with an hour lunch break. Sometimes, it seems that my brain is “out to lunch” during that one hour of theoretical down time in the middle of the day.

Friday, just as I was ending the work week, I decided to eat at the office and work on an article and story with looming deadlines. I walked back to the kitchen, removed my Schwan’s Broccoli-Chicken and Rice Bowl and popped it into the microwave. Rather than waste six minutes while I waited for it to cook, I grabbed a glass of ice water and returned to my desk, popped in my flash drive, and began to write.

The problem with healthy food is sometimes it just doesn’t stick with you. At three o’clock I was famished, and just as I reached for my apple, I realized my lunch was still in the microwave. I never thought I would live long enough to forget to eat! HereI am, a master of multi-tasking, and forgot to eat lunch.

Last week, I rushed from my hair appointment through a drive-thru window at Goody’s. I bypassed the “Order Here” menu and drove to the “Pick up Order” window. Just as I was contemplating backing up, the window opened and a grinning man said, “Could I have your order, please?”

“I can’t believe I didn’t stop and place my order.”

“It happens,” he said, “people just have their minds on something else.”

I didn’t tell him this was an improvement over the fiasco at the same restaurant last year. That time, I ordered at the proper window, paid for my food, and drove off with only my drink. I’m sure I was thinking about more important things than lunch.

My friend, Tracy Mobley, diagnosed at 38 with early-onset dementia, has something to say about people like me who have so much on their plates that their brains are out to lunch. She says, “They are quick to say, ‘Oh, I do those things.’ I truly wish this disease were as forgiving and forgetting as they make it seem.”

Well said, Tracy! When Jim developed dementia, I realized how serious and life-changing Alzheimer’s really is. He began a process that could be described as unlearning.

Our lives are so hectic today that we often find ourselves with our brain on one track, and our actions on auto pilot. This mental overload is not Alzheimer’s, but simply a brain trying to process too much information.

The lesson for me is to hang a mental “Out to Lunch” sign during my lunch break and spend my time more wisely. I need to take a deep breath and slow down. If I meet friends for lunch or go to the park and relax for an hour, I bet I wouldn’t forget to eat.

*****


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.

Saturday, July 12, 2008

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.


*****
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.

Sunday, July 6, 2008

Writing as Therapy: Rocks and Pebbles

Stress is rampant in most of our lives today, and is a primary contributor to premature death. Even when we make an effort to be healthier, we create more stress! I experience health-related stress every time I try the latest count-every-calorie diet and go to bed with a growling stomach.

We manage stress in individual and somewhat mystical ways. Whether you cope with stress though exercise, aromatherapy, meditation, medication, therapy, or a combination, you use a method that blends with your personality.

I’ve always believed in gut feelings, and my gut tells me that writing is the technique that works for me. I will be the first to admit a bubble bath can brighten a bad day, but when I grapple with a dilemma, I need to write. The key word is “need.” It isn’t that I want to write, or writing through the problem might help; writing is necessary. Nothing else works as well as writing to relieve my stress, grief, disappointments, or the myriad of quandaries spawned by daily life.

Through Jim’s downward spiral into the land of dementia, I survived by writing. From the first memory lapses through ten years of gradually losing my best friend and companion, I wrote. Pen and paper, or my laptop, took the brunt of my anger, disappointment, and despair. Had I unloaded all my problems onto other human being, I probably wouldn’t have any friends or relatives without unlisted phone numbers.

I wrote “Writing as Therapy: Rocks and Pebbles” for Alzheimer’s Anthology of Unconditional Love. One of the purposes of the book was to help others traveling the Alzheimer’s journey. I would have been remiss had I not shared the value of writing.

Imagine my excitement to find research validates the therapeutic benefits of writing for both emotional well-being and physical problems. It is easier for me to understand the emotional benefits of writing than to comprehend that participants of therapeutic writing experiments showed decreased blood pressure, less pain from arthritis, and better breathing in asthmatics.

In this age of self-help, writing is an inexpensive way to use the benefit of self-reflection to increase our joy in living. Researchers warn that writing is not a cure-all and may not work for everyone. But if you are one who believes in gut feelings, you might want to give it a try. Writing as therapy is not about being a “writer” or “published author;” it’s about expressing your emotions through writing.

My current book project, Writing as Therapy: Rocks and Pebbles, explores how writing memories, or even fiction, can be cathartic. Writing allows me to reflect on life, examine my values, and validate my faith that my existence has meaning. Writing is a stress-free health choice that allows me to feast on spiritual food. No calorie counting required.

Sunday, June 29, 2008

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

Saturday, June 28, 2008

As the Crow Flies and Talks

Jim always liked to talk to crows. That’s not really as strange as it seems since they talked back. When he was a teenager, his aunt and uncle in Kansas City had a pet crow. One day the crow got out of the house and Jim helped his uncle comb the neighborhood searching for Jim Crow. A neighbor called and said a bird was on his roof yelling “Help me! Help me!” Sure enough it was Jim Crow.

On our many trips to Colorado, we camped at Moraine Park. One day I was in the tent enjoying an afternoon nap until my solitude was disturbed by voices. I thought it was children playing, but when I stepped outside the tent, Jim was sitting on a moraine talking to the crows. They were having a lively conversation in high pitched crow talk.

Last year, Ginger and I went to visit the spot where my sons scattered part of Jim’s ashes, per his request. Maybe, “request” is too mild a word. He instructed me—showing me the exact spot. As Ginger and I hiked to the quiet little meadow, a noisy crow followed us up the trail and perched in a tree nearby.

In the early shade of evening we walked across the bridge to the parking lot. “Did you notice the crow?” Ginger asked, pointing to the persistent bird.

“Yes, I thought it a little strange that he followed us to the meadow and back to the car.” I unlocked the door and we climbed in my Oldsmobile Alero.

“Me too,” she said.

“If Jim was here, he would talk to the crow.” I rolled down the windows to let the heat escape the car.

“I think he is here,” she said. And we grinned at each other as she spoke aloud the very thought I had been thinking.

The crow watched us as we drove away, calling loudly. It sounded like he said, “Y’all come back.” But I could have been mistaken because I never could understand crow talk the way Jim did.

Sedalia Democrat Article: Author Finds Winning Feeling Second Time Around

A link to a Sedalia Democrat article written by Heath Hooper:

"Linda Fisher knew she wanted to be a writer since her first pass at college." Read the entire article at www.sedaliademocrat.com/news/first_9332___article.html/writer_fisher.html - 57k

Sunday, June 22, 2008

Of Boston and Baggage

What was I thinking to squeeze a week long conference into my busy schedule? I spent Friday night and Saturday morning frantically packing for my journey. With airlines so persnickety about the amount of luggage you can carry, more thought must go into the packing process.

I chose my medium-sized suitcase because I didn’t want to exceed the fifty pound weight limit. I plopped it on my bathroom scales and it weighed in at 36 pounds. The suitcase was so jammed that my purchases in Boston would have to be limited. And darn the luck, our hotel was attached to a mall. Thinking ahead, my co-worker, Brenda, opted for a large suitcase lightly packed.

This was my first trip to Boston, a city of historical beauty, the freedom trail, brownstones, Fenway Park, and the World Champion Celtics. It is a bonus to enter a city during a historic event. I captured a picture, in my mind and on my cell phone, of the Celtics riding the Ducks in a green and white tickertape parade. I was caught up in the excitement of the enthusiastic crowd.

I might have known things were going way too smoothly. We mailed two boxes of conference materials and checked out of the hotel. Brenda hooked up her laptop to print out our boarding passes. Our flight had been cancelled. Now we would leave three hours later and arrive at Kansas City after 10:00 P.M.

We rolled our luggage up to the ticket counter, and I heaved my bag onto the scales for weigh-in. I breathed a sigh of relief when the red LCD stopped on 44 pounds. Brenda wasn’t so lucky. Her bag was six pounds overweight. “That will be $50.” Brenda opened her suitcase, pulled out a large shopping bag and began cramming items into it. The shopping bag saved her $50 when her lightened suitcase weighed in at 49 pounds.

The lesson learned is that excess baggage comes at a cost. The Alzheimer’s journey requires us to share our load in order to complete the trip. The weight we are willing to carry around on our shoulders is self-monitored, and the cost is not only more than $50; it is immeasurable.

Saturday, June 14, 2008

Gifts for Father's Day

I watch Father’s Day ads on TV and think about how many years it has been since I’ve bought a gift. My dad and father-in-law both died in 1990, so my husband became the recipient of Hallmark cards and aftershave. Of course, during his nursing home years, I usually bought Jim NASCAR or Kansas City Chief tee-shirts for all special occasions.

As the big day for dads nears, I began to think about what these three special dads have taught me. My dad, Robert Capps, passed on his work ethic to all eight of us kids. He taught us to give a full day’s labor for a day’s pay. He encouraged us to stay in school and get an education so we could have a better, easier life than he and Mom. My dad wasn’t a religious man, but he taught us honesty, compassion, self respect, unselfishness, and ethical behavior. He always wanted a better life for us kids. He said, “It’s as easy to love a rich man as a poor man.” My two sisters and I never listened to that. In the first place, we didn’t know any rich men, and living in the Ozarks, we weren’t in danger of ever meeting any. Maybe that was his point. He also wanted us to be independent.

My father-in-law, William Howard “Bill” Fisher, taught me to laugh and find humor in unexpected places. His personality was totally different from my dad. Bill played music and his idea of a good time was to have a jam session with his family and friends. Their extended family could usually be found in a campground alongside a creek with good fishing. The Fishers traveled, moving from house to house, state to state. Bill was sentimental and somewhat superstitious. He saw life as mysterious and intriguing. I once lost a contact lens, back in the days when they cost a lot of money. Bill had a dream and knew exactly where to look for it the next morning.

Jim inherited good qualities from both his parents. He was happiest when he was driving down the road and taught me to love travel. Jim was the most generous person I ever knew. Jim would not only give someone the shirt off his back, he would give away his last $10 if someone else needed it.

I came home one day to find Jim digging in his mom and dad’s yard.

“What on earth are you doing?” I asked.

He leaned against his shovel, wiped the sweat off his brow and said, “I’m going to build Mom and Dad a house. That trailer is falling apart, and they can’t live there anymore.” Our mobile home was in better shape, and we had barely begun construction on our home. We put our house on hold, and built a small, solid house for his parents.

Most important, Jim taught me about true and enduring love. Jim was generous with his love, and family always came first. I knew that no matter what, he was always on my side.

I have no father to buy presents for this Father’s Day, but these three fathers left valuable gifts behind. On Father's day, I will pause and cherish their legacies.

Saturday, June 7, 2008

Red Roses in a Blue Plastic Bottle

The Veterans Cemetery has a rule that during certain times of the year, live flowers in non-breakable vases are the only acceptable decorations. The day before Memorial Day, I look over the fresh flowers at Wal-Mart.

Sentimentality wins out and I purchase a half-dozen red roses to put in front of Jim’s niche. The roses may not be the most practical choice. If the day is hot, they may wilt before the ceremony is finished. But my heart is set on the red roses. A single long-stemmed red rose was Jim’s way of saying “I love you” on anniversaries, Valentine’s Day, and for no reason at all.

Do you think I could find a plastic vase in the entire Wal-Mart Supercenter? I risk my groceries to stop at Big Lots, but they don’t have any plastic vases either. At home, I find a plastic jar that I decide I can use if my last ditch stop at the Higginsville Wal-Mart ends in failure.

Once we pull off I-70 on the way to the cemetery, my sister-in-law, Ginger, and I storm into the store; two women on a mission. First we look in the obvious places and find the normal grave arrangements along a wall. Picnic supplies are jammed onto shelves nearby.

“How about these water bottles?” Ginger asked.

“They have possibilities,” I said.

The bottles are translucent red and blue, and don’t have logos or ounce markers on them. The price is good—two for $4. They look much like vases, or at least will if we remove the lids.

We put the bottles into the cart and head for the craft section where we select white wired ribbon and some decorative pebbles. In the parking lot, we take scissors to the roses and put pebbles in the bottom of the blue bottle. The arrangement seems a little top heavy so Ginger continues to stuff pebbles into the bottle on the ride to the cemetery. By the time we put a ribbon on the improvised vase, we have a red, white, and blue floral arrangement.

A light rain falls, and we think the ceremony may be cancelled. The rain dwindles off, and the stars and stripes proudly line the white fence, and the service flags atop the columbarium whip in the gusty breeze.

Of course, when I place Jim’s roses in front of his niche, I notice about half the decorations are artificial arrangements or potted plants. Jim’s roses look nice and smell good and are worth the extra effort. Ginger and I sit a stone bench for the ceremony, and watch the roses open up to embrace the day and proclaim that love is the one thing that doesn’t die.

Saturday, May 31, 2008

Early Onset Project: Share Your Alzheimer's Stories

The Early Onset Book Project seeks submissions for a book devoted to young onset dementia. Many books have been written about Alzheimer’s, but Alzheimer’s Anthology of Unconditional Love: Early Onset Dementia will provide a rare opportunity to demonstrate how the disease affects families from different points of view. This book will bring to life the challenges of living with dementia and show the courage of persons with dementia and their families.

Writers do not need to be professionals. Stories written by the primary caregiver or the person with dementia are often the most compelling. I will edit stories, if necessary, before submitting them to the judges who will select approximately thirty stories for the collection.

The Early Onset Project is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. The book will be formatted much like Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians, with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles. Missouri advocates distributed copies of Alzheimer’s Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer’s to all Missouri legislators in Jefferson City and Washington, D.C.

During our legislative visits at the Alzheimer's Association Public Policy Forum, Sarah Wilson of the Mid-Missouri Chapter compared Alzheimer's to another disease that affects so many people. "When a family member has cancer, that person takes chemotherapy, and the rest of the family provides support for them. With Alzheimer's, it's like the whole family is taking chemotherapy."

Those of us who have lived with dementia understand that analogy. When my husband developed dementia at age 49, advocacy and writing helped me cope. He had aphasia and could not express his feelings, so I became his voice.

Writing our experiences has a cathartic effect and helps promote spiritual healing. Once we record the events and emotion, we realize we did our best and love makes us stronger than we ever thought we could be. I have a presentation on this subject and will publish a book, Writing as Therapy: Rocks and Pebbles, in 2008 or 2009.

Your personal stories give a voice to the 500,000 people with early onset dementia and their loved ones. No one can tell your story but you. Please share a slice-of-life moment with The Early Onset Project and let your voice be heard.

For more information about submissions for the Early Onset Project, visit http://www.lsfisher.com/, or www.alz.org/mid-missouri/


To download complete submissions guidelines: http://www.lsfisher.com/projectearly.html
The submissions deadline has been extended to October 31, 2008. If you have any questions, please email me at earlyonset@hotmail.com.

Saturday, May 24, 2008

Memorial Day: Honoring America’s Heroes

While in Washington, DC, for the Alzheimer’s Association Public Policy Forum, my grandson and I visited Arlington Cemetery in Virginia. The only other time I was there was with Jim more than twenty years ago. My recent visit brought back memories of the prior visit with my husband long before we knew anything about Alzheimer’s.

With more than 250,000 gravesites on 657 acres, Jim and I did what most reasonable people would do—took the bus tour so we wouldn’t miss the highlights. As it turned out, the highlight for Jim was Audie Murphy’s grave.

We were on the last bus tour of the day so we had to quickly visit each site and board the same bus. The bus stopped for the changing of the guard at the Tomb of the Unknowns. Everyone hustled past the Memorial Amphitheatre, except Jim. I hung back to see where he was headed.

“We’re going to miss the changing of the guard,” I said.

Jim stood in front of Audie Murphy’s plain grave marker videotaping. “This is what I wanted to see more than anything,” he said.

After several minutes, we walked toward the crowd and saw part of the ceremony. This incident stands out in my memory as an example of Jim’s unique view of life. He was a person more intrigued by a simple grave marker than by a ceremony. He appreciated the grace and beauty of endless rows of marble stones

“I would like to be buried here,” he said.

“That’s not a good idea,” I argued, “because I wouldn’t be able to visit your grave.”

He smiled and put his arm around me. It was just a passing thought and not something he dwelled on.

On Memorial Day, I will travel to the Missouri Veterans Cemetery which has the grace and beauty of Arlington on a much smaller scale. At 1:00 p.m., they will have a ceremony to honor our heroes buried there.

I knew Jim well enough to know that had he seen the Missouri Veterans Cemetery, he would have preferred it to Arlington. Jim’s ashes are in a niche in a columbarium which overlooks a small lake. While the ceremony goes on, I imagine that, in spirit, Jim will be fishing in the lake and pretty much ignoring the crowd, being his own person, doing his own thing.

Sunday, May 18, 2008

Alzheimer’s Association 20th Annual Public Policy Forum

This was my eighth trip to Washington, DC, to ask for increased research funds for Alzheimer’s. It becomes frustrating when nothing seems to happen. NIH funding for Alzheimer’s research has remained flat for the past five years, and Maureen Reagan’s $1 billion goal appears to be unattainable.

It is our job as advocates to educate our legislators and remain visible. We wore our purple “beauty queen” banners which made us hard to forget. Sandra Day O’Connor and Newt Gingrich both testified at the Congressional Hearing on Alzheimer’s. One of the senators said, “This is the biggest group I have ever seen at a hearing.” The room was crowded and people stood along both walls and in the back. Mrs. O’Connor said, “This is a problem that cries out for help.” She said research was closer than ever to finding a way to dissolve the plaques which are the hallmark of Alzheimer's.

My grandson, Colby, traveled to Washington, DC, with me for his second Public Policy Forum. The Alzheimer’s Association asked us to focus on two main issues this year. We asked for $125 million increase to the $644 million spent on Alzheimer’s research, and to phase out the Social Security disability two-year wait for Medicare benefits. The two-year wait places a hardship on people with early onset dementia during the time when medical treatment is most helpful.

It is more urgent than ever to find a cure for Alzheimer’s as the baby boomers age. “A cure can save Medicare and Medicaid $60 billion a year,” Colby told his parents on the ride home from the airport. “I learned a lot,” he said. And he did. He learned that 500,000 Americans have developed Alzheimer’s before age 65 and more than 5 million people in the United States have Alzheimer’s.

“Why do you stay involved?” is a question I hear frequently. Alicia, who has early onset Alzheimer’s told our representative's legislative aide, “Linda doesn’t have to do what she does since her husband passed away.”

I don’t have any choice but to remain involved. Advocacy didn’t end when Jim died! Through my involvement with advocacy, I’ve become friends with many people who have early onset dementia, and I care about them and their health. I worry about what the future holds for Alicia, Charley, Tracy, Karen, Bill, David, Lynne and many others. I ache for the caregivers because I know how emotionally and physically challenging their journey will be. I grieve for the man whose wife held his hand and led him from session to session at the Public Policy Forum; the lost look in his eyes haunts me and revives memories of Jim.

Alzheimer’s is a disease, not a normal part of aging. We need to advocate for a cure and for programs to help those living with dementia. It is time we have Alzheimer’s survivors to honor at our Memory Walks!

Thursday, May 15, 2008

Sedalia Democrat Article: Alzheimer's Advocate Receives Award for Work Against Disease

This is a link for an article in The Sedalia Democrat about the Alzheimer's Association Missouri Coalition first annual Advocate of the Year Award:

http://www.sedaliademocrat.com/news/advocate_7818___article.html/forum_walk.html

Thank you for this honor! Linda Fisher

Saturday, May 3, 2008

Mushrooms in the Ozarks

Those of us living in the Show Me state tend to get excited about tangible things, which most definitely include morel mushrooms. Due to the heavy rain this year, morels are being found in record numbers. My sister-in-law has been combing the woods and shared her abundant supply with me.

I grew up in the heart of the Ozarks where mushroom hunting should qualify as a sport. During my years of hunting, I’ve been chased by bulls, came within a hairs’ breath of stepping on a copperhead, came eyeball-to-eyeball with a snake hanging out of a tree, jumped creeks, balanced on a log to cross a ravine, slid down embankments—just to mention a smattering of the dangers involved. Rather than suffering from post traumatic stress disorder because of my innumerable misadventures, I think of mushroom hunting with fondness.

At mushroom time, the woods come alive. Dogwood, redbud, and wildflowers burst into bloom. Mayflowers open their umbrellas, birds chirp, twitter, whistle and squawk, squirrels chatter and dance precariously on limbs, the scent of wild onions and garlic fill the air. There’s something refreshing about carrying a walking stick and pushing aside nature’s ground cover to find a perfect morel poking up through the leaves.

It is best to hunt with a partner so that when you wander into dangerous situations, someone has your back. I was always confident hunting with Jim and knew he would see that nothing would harm me. I remember one year Jim found a patch of mushrooms and didn’t pick any of them. He led me to them and let me “find” them. If you aren’t a mushroom hunter, you don’t realize how symbolic that is of true love.

You notice I didn’t say anything about hunting mushrooms this year. For all my fond memories, I haven’t braved the snakes and ticks to find those little darlings. It’s something I long to do, but haven’t been motivated to do. In life, we constantly balance memories against reality. The sun is shining today, and we had more rain yesterday. Wait—is that the siren song of a great spring mushroom hunting day I hear outside my patio doors?

Sunday, April 27, 2008

On a Slow Train to Chicago

The whistle makes a soothing mournful sound in the coach section of Amtrak. The rain snakes across the windows blurring the trees with their tease of green. Water pools in every dip of land from the April rain that has been falling for the past two days. Miniature lakes are surrounded by grassy meadows. The Missouri River is grey and turbulent from the flooding streams. A barge pushes a load beneath the grey metal structure of a bridge.

The leisurely train ride affords a chance for people, like me, who take advantage of every quiet moment, to write. My laptop fits nicely on the tray and an electrical outlet lets me work long after a battery would shut down. I spend most of the twelve hour ride from Sedalia to Chicago working on a new book, Writing as Therapy: Rocks and Pebbles.

As the train passes through small towns and past St. Louis, I think about how this leisurely mode of travel would have suited Jim. He inherited wanderlust from his parents’ vagabond lifestyle and was happiest on the road. Jim always said the best part of any journey was traveling down the highway. He was just as happy throwing a sleeping bag on the ground as he was staying in a motel. Jim preferred travel by car much more than flying, and I know he would have enjoyed the train ride.

Although the train outpaces the trucks on the interstate, train travel is not for those a tight deadline or people with no patience. Sometimes the train pulls to a side track and waits for a freight train to pass. Or, may even back up and hook onto a train having engine trouble and pull them along to their next stop. Sometimes cranky children cry or someone shouts into his cell phone and disturbs the quiet. Most of the time, it is peaceful and the seats are comfortable.

Something about the train makes me long for the days when Jim taught me to think about the journey and not just the destination. When the whistle blows, the sound makes me lonesome for those youthful days. The rain weeps, but I smile in remembrance of our journeys.

Wednesday, April 9, 2008

L. S. Fisher, Alzheimer's Anthology: Book Signing at Barnes and Noble, Columbia, MO, April 13


Linda Fisher, Author
Alzheimer’s Anthology of Unconditional Love

Invites YOU to a Book Signing

Barnes and Noble
Columbia, MO
Sunday, April 13
1:30 – 3:30 PM

A Voice for Missourians with Alzheimer’s


In Missouri, an estimated 110,000 people have Alzheimer’s or a related disorder. Caregivers, family, and friends bring the number of Missourians directly impacted by the disease to more than a half-million.

Alzheimer’s had never affected anyone close to me until my husband Jim began his downward spiral into the abyss of dementia. A diagnosis of Alzheimer’s is frightening and the prognosis is devastating. Alzheimer’s has remained a mystery, the cure illusive.

How could Jim have dementia when he was only 49 years old? The concept was unfathomable that small mental glitches could escalate into massive cell death that would erase my husband’s memory and skills. Jim once repaired our van with a piece of baling wire, but two years into the disease he could not focus enough to screw in a light bulb, twisting it first one way and then another.

Jim was a talented singer and musician who could play a multitude of stringed instruments. Eventually he could not play his guitar, and his voice was stilled by aphasia.

Alzheimer's Anthology of Unconditional Love is a collection of stories that give a voice to Missourians who have experienced this life altering disease. When our loved one has dementia, we embark upon an unwilling journey into an uncharted world. It is the death of our dreams, our plans, and the birth of unconditional love. Alzheimer’s brings about role reversals as we struggle to provide care for people who once took care of us.

The stories in the collection capture the effect Alzheimer’s has on caregivers, sons, daughters, in-laws, children, grandchildren, and healthcare workers. The writers range from a Pulitzer Prize nominee to unpublished authors.

Tracy Mobley, diagnosed at 38, wrote a story filled with humor and laced with the tragedy Alzheimer’s has brought to her family. Charles Schneider describes the shock of being diagnosed with early onset Alzheimer’s.

For those beginning the journey, these true slice-of-life stories will help them realize they are not alone. We all walk together, holding hands, giving each other hugs and encouragement.

I look forward to seeing you April 13 at the Columbia Barnes and Noble Bookstore.

Linda Fisher