Presentations

Friday, December 31, 2010

Reflections, or Through the Looking Glass?

The year end and the New Year are like a two-sided mirror, and I stand in front of it. In one side I see my own reflection,  to see the other side I have to step through the looking glass. The decision is mine, do I continue to look at a reflection of the familiar, or take a leap of faith and step through to a new world?

What’s on the other side? Maybe it is just more of the same, but it could be a strange new world where nothing is familiar. It could mean that someone raised the stakes when I wasn’t looking, or it could be a wondrous land unlike anything I’ve ever known. Either way, through the looking glass means excitement and adventure—the reflection is security and safety.

But does the mirror reflect only the familiar? I’m reminded of an exercise in my Train the Trainer: Building Creative Caregivers workbook. The "Mirror Exercise" is designed to sensitize participants to how hard it is for a person with dementia do perform simple tasks.
The Mirror Exercise (from Building Creative Caregivers):

• You need a hand mirror, pen and paper
• Hold the pen in one hand and the mirror in the other, reflecting side out slightly above your shoulder
• Locate your hand and pen in the mirror
• Looking only in the mirror, draw a house on the paper
• After you draw your picture write your name on the paper

Try the exercise and you learn that sometimes you are in unfamiliar territory even when you don’t take a chance. The reflection may not be as safe as stepping through the looking glass.

Life changes and evolves every day. Sometimes the changes are internal as we struggle with meeting our daily emotional needs. We face external changes as we wake up each day to find our world has changed. Sometimes the changes are upheavals—the test results came back positive, a loved one passes away, a home is destroyed by fire or tornado; while other changes are subtle—another gray hair, bad dreams, indigestion, gained another two pounds.

The only thing we can really count on is that today will not be exactly like yesterday or the same as tomorrow. We cannot stand still while everything moves around us. Instead, we are swept along life’s journey at breakneck speed.

So back to the original question—look at the reflection or step through the looking glass? Maybe it doesn’t make any difference. It depends on what we see in the reflection and whether we can look at it from a little different perspective to keep it interesting.

If I step through the looking glass, the world may change drastically—for better or worse. If my choice is through the looking glass, I must be sure the entire goal is not to find my way back. This choice doesn’t have to be made on New Year’s Day, it needs to be made when the time is right. I’ve stepped through the looking glass before, and when I can do it without regrets, I’ll step through it again. For now, I’m happy looking at the reflection in a different way. That’s enough excitement and adventure for me.

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

Sunday, December 26, 2010

The Day After Christmas

Ever thought about how the day after Christmas is so different from the night before our biggest holiday? Before is filled with anticipation, excitement, and preparation. The day after is clean up the mess time, work on leftovers, procrastinate about undecking the halls (sounds like a New Year’s Day project), and maybe a twinge of depression that the big day is over.

This year, the day after fell on Sunday, so the normal “day after” seems to me like it’s on overdrive. The house is quiet—holiday music seems so “yesterday” and I just couldn’t Face the Nation this morning. Why would anyone want to hear that squabbling on the day after Christmas?

Overnight, more snow fell—okay, we already had a white Christmas so I’m ready for it to stop. I decided to stay home instead of braving the slick roads to go to church this morning. Instead, I watched Joel Osteen on TV.

Joel’s message this morning, “Enjoy the Journey,” really hit home with me. The gist of his message was how we get too busy to enjoy the simple things in life. He talked about how we rush through life in anticipation of the big events and don’t have time to savor the small moments that make the memories. We need to squeeze time in our busy schedules to spend with family and loved ones, instead of zapping our energy with work and obligations.

I guess if a busy man like Joel Osteen can take time to savor the moment, it should be easy for me. When I examine my life, it seems to be mostly hectic, and too often hectic turns to frantic. I’ve just kept piling on obligations until they’ve taken on a life of their own. For the past week, I haven’t worried about all the things I should be doing, but have pretty much just shoved them aside. For once, my holiday has been respite from responsibilities.

Holidays were especially hard during the ten years of Jim’s dementia. Christmas activities pretty much confused him and he didn’t like the house being changed with decorations. When he was in the nursing home, he enjoyed the small Christmas tree I put in his room.

Each year is different in some way. If nothing else, the kids or grandkids are getting older. After our family get-together this year, my oldest grandson got behind the wheel of the family vehicle to drive them home. It doesn’t seem that long ago that we bought him Woody and Buzz Lightyear for Christmas.

While some really relate to the ho-ho-ho and jolly part of Christmas, others are filled with dread as they struggle to establish new traditions, or wonder how they will put on a happy face for everyone else. There’s a lot of internal and external pressure to be merry at Christmas. It’s expected.

As far as Christmas, I think I’ll just go with Joel Osteen’s idea to “Enjoy the Journey.” Each Christmas is different, but that doesn’t mean it is necessarily better or worse. The Christmases that may have seemed the most challenging at the time yield happy moments that turn into cherished memories. I can still see Jim wearing his Kansas City Chief’s shirt, mesmerized by the fiber optic tree. When I walked into his room, sometimes he would turn to me and his eyes would light up.

Life’s journey seems to be flying by and Christmas is a mile marker. Christmas is over, again. Now, it’s time to think about how to make the most of the 365 days of 2011. No one but me can put the “happy” in my New Year, but I might as well start with this day after Christmas. No time like the present to make a memory.

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

Monday, December 20, 2010

A Letter to the President: Sign the National Alzheimer’s Project Act

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure  your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

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

Tuesday, December 14, 2010

The Big Chill: Keeping Loved Ones Safe

Winter hasn’t officially begun and I’m already tired of the frigid weather. Single digits and thirty-mile-an-hour winds make me want to burrow in and not make an appearance until springtime.

I started out bundled up in my winter coat and wearing a hat on a mission to finish my Christmas shopping. After a few miserable trips from car to store, I purchased a heavy sweatshirt and put it on beneath my coat. I pulled the hood up and spent the rest of the day with hair that was crushed to my head in places while static lifted the rest of it in wisps high above my head. Not a good hair day!

Hair is not the biggest challenge on a cold, windy winter day. The danger lies in being exposed to the elements for any length of time—especially without protective clothing.

Winter is especially dangerous when a family member has Alzheimer’s. A person with Alzheimer’s may not remember to dress appropriately for the weather and a trip across the yard to check the mail could turn into a tragedy.

About 60% of those with Alzheimer’s wander. Wandering is especially dangerous in inclement weather when every minute counts. Snow can change the look of the terrain and familiar surroundings may become unrecognizable to someone with dementia. Slippery sidewalks and snow filled ditches become an obstacle course fraught with danger.

In the early stages, Jim walked our two big dogs every day. One day, a neighbor became concerned about Jim when she saw him trudging through a deep snow walking the dogs. He was wearing his winter coat, but had neglected to zip it up. She met him at the end of her drive and convinced him to turn around and head toward home.

After Jim began to wander, I tried different types of safeguards. I tried a device on the doorknobs that made them hard to open, but they didn’t slow Jim down when he decided to open the door. Eventually, I installed an alarm on the door so he couldn’t go outside undetected. I registered Jim with Safe Return which gave me some peace of mind.

When a person is lost, it is critical to find him within the first 24 hours to increase the chances of having a good outcome. In cold winter weather, like we have now, the safety zone is further reduced.

Cold weather is dangerous for everyone, but when reasoning is impaired it is important for family members to be vigilant. If your loved one must go outside, make sure he or she is dressed warmly and limit outdoor activities to short period of times. Do not let a person with dementia go outside alone in inclement weather especially if they have been known to get lost.

Winter officially begins next week so we have plenty of time to experience the big chill. Let’s keep our loved ones warm and safe throughout the cold days ahead.

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

Monday, December 6, 2010

Frontotemporal Dementia (FTD)

I found an Alzheimer’s Weekly in my inbox that gave me hope that scientists may be on track to find effective treatment for the rare type of dementia Jim had. While Jim was living, we didn’t know exactly what disease he had, only that it was an Alzheimer’s type of dementia. Early on, the neurologist suspected Jim might have Pick’s disease, or a disease that didn’t even have a name.

When the autopsy report came in, I sent it to the neurologist to find out exactly what disease Jim had. All I knew for sure after reading the report was that Jim had no evidence of Alzheimer’s. The neurologist called me back in a few minutes and gave me the name of a disease I had never heard of: corticobasal degeneration, sometimes called corticobasal ganglionic degeneration.

The 7th Annual International Conference on Frontotemporal Dementia focused on a disease that so rare it affects only about 20,000 people.

Frontotemporal Dementia Facts:

  •  Accounts for 2 – 10% of dementia
  • The onset is usually between 40 and 65 years of age
  • The expected lifespan is 5-10 years
  • Can run in families
  • Familial FTD is linked to the “tau” gene, chromosome 17
The Frontotemporal Family of diseases affects behavior and causes problems with language. Jim developed dementia at 49 years old and died at 59. His personality changed and his behavior became childlike at time. One of Jim’s first symptoms was problems with language—spoken and written. Jim could write letters and sometimes even have the correct letters in a word, but they might be jumbled. I had him write a grocery list for me once and he wrote “taper powels.” He later looked at the list and said, “Why did I write it like that?” He spoke in familiar phrases for a long time and was almost totally silent the last two years of his life.

The FTD diseases include:
  • Pick’s Disease
  • Primary Progressive Aphasia
  • Semantic Dementia
Some doctors propose adding other diseases to the FTD classification and call the group Pick’s Complex. The diseases that may soon be included in FTD beneath the umbrella of Pick’s Complex are corticobasal degeneration and progressive supranuclear palsy.

I’ve never understood why corticobasal degeneration was not included in the various Alzheimer’s type of dementia. Jim's diagnosis after the mental exam was “dementia of the Alzheimer’s type.” And corticobasal is definitely that.

One of the differences between FTD and Alzheimer’s is that FTD usually begins with behavior and communication problems, where Alzheimer’s begins with memory loss.

FTD Symptoms:
  • Personality and behavior changes
  • Lack of empathy and impaired social interactions
  • Language difficulty
  • Compulsive behavior and repetitive actions
  •  As the disease progresses—impaired motor skills, speech, and movement
Corticobasal degeneration is considered a movement disorder. Late in the disease, Jim kept falling and used a device that looked much like a giant baby walker to keep him in an upright position. He also had what is known as “alien limb” and didn’t seem to know what to do with his right arm. He clinched his right hand so hard for so long that he developed a pressure sore and had to have his little finger amputated.

People with FTD cannot stop or control their behavior—the frontal and temporal lobes are the first part of the brain to sustain damaged. Since FTD is typically a younger onset dementia it is often mistaken for a mental disease rather than a degenerative brain disorder. Out of control behavior, personality changes, and poor financial judgment are some of the symptoms that create strained relationships with loved ones. Caregivers are only human and although logically we know our loved one is not deliberately being difficult, sometimes feelings are hurt, or the caregiver feels unappreciated, unloved, and becomes depressed.

My experience is that it is best to take one day at a time—or even one hour at a time. I accepted Jim for the person he became, knowing that he would never again be the man he had been. It helps to know that some of the behavior can be controlled with medication and from time-to-time you see a fleeting glimpse of a familiar expression, or a genuine smile.

I always cherished the moments when I said, “I love you” and Jim replied, “I love you too”--especially, when he said it like he meant it.

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

To read more about frontotemporal dementia:

Sunday, November 28, 2010

The Brighter the Light, the Deeper the Shadows

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

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

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

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

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

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

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

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

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

Monday, November 22, 2010

Early Onset Blog Book Wins Book of the Year Award

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

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

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

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

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

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

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

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

___________

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

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

Sunday, November 14, 2010

The Journey Ends: Memories of Lynne

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

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

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

From my journal—Meeting Lynne and becoming friends:

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

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

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

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

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

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

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

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

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

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

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

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

“That makes me feel better,” she said.

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

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

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

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

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

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

Sunday, November 7, 2010

A Pac-Man Kind of Morning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 3, 2010

Eating Out

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

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

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

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

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

“Yeah,” I said. “It looks fine.”

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

“It wasn’t done,” I said.

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

“Ugly? I never said that.”

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

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

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

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

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

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

“It’s okay,” the lady said.

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

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

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

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

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

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

Tuesday, October 26, 2010

A Long Drive, Deep Thoughts, and a Cup of Joe

For a short delusional period this morning, I thought I had a day to just kick back and relax. Then I remembered I was taking Mom to the hospital to see my brother. So rather than drifting back into the dream I was having about going on a trip with an empty suitcase, I staggered to the kitchen to fix a pot of coffee. I just can’t pry my eyes open until I’ve had a cup of coffee.

When Jim and I were first married, I didn’t drink coffee. I thought the stuff was a bit on the bitter side and just didn’t have any appeal for me. I blame my coffee drinking habit on Jim’s grandma. Apparently, she thought everyone drank coffee and as soon as we walked into her house, she plunked a strong cup of coffee in front of me.

The conversation always went something like this:

"Grandma, I don’t drink coffee.”

“What? You don’t drink coffee?” The look on her face was priceless. She would look at Jim and say, “She doesn’t drink coffee?”

“No Grandma, she doesn’t drink coffee.” Then Jim would look at me and grin because he knew what was coming next.

“But, I’ve already poured it!” Like that was the final say. There I would sit: cup of coffee in front of me, Grandma expecting me to drink it, and husband who thought it was funny.
So, I would take a small sip and try not to shudder. First chance I got, I poured it down the sink. When we went for the next visit, the scene played again. Eventually, I just drank the cup of coffee treating it like a dose of medicine. Get it down and get it over with, except, when she kept refilling my empty cup—then, I learned to make it last longer.

Now, I need no urging to drink coffee and feel downright deprived if I can’t have a cup of Joe in the morning. After coffee and a quick shower, I was dressed and out the door. On the long drive to my mom’s house, I roamed through the XM stations on my radio trying to find something she would like to hear. I just knew she wouldn’t appreciate the Classic Rock channel. I came across enLighten and knew the gospel music would be a hit with her.

Listening to the sweet, almost angelic, harmony, I found myself thinking deep thoughts. The kind of thoughts Jim and I used to share about life, death, and all the unexplained things that happen in between. Of course, one of the first things I question is why did Jim develop dementia and why did his life end at the age I am now. I wonder why my brother keeps having strokes. It seems that if I think things can’t get any worse, they can and sometimes do.

My brother already lives in a nursing home and can’t walk, has constant pain, endless headaches, and basically a pretty miserable existence. He is in the hospital because of more strokes. His speech is slurred and hard to understand. He has trouble swallowing and has to be on thickened liquids and mechanically softened foods.

When Mom and I walk into his room, we find Donnie twisted to one side of his bed. He asks us to straighten him up. I push and Mom tugs and we get him in a more comfortable position. After Food Service brings his lunch tray, the nurse wants to move him into a more upright position in the bed. She calls an aide to help her.

“She can help you,” Donnie tells the nurse pointing in my direction.

“Can you?” she asks.

Of course, I can. After all the time Jim spent in the nursing home, I learned how to do everything to make him more comfortable.

On the way to Mom’s house, the hospital called to tell her Donnie had been released. He has to return in about a month for surgery, but for now, he is headed home.

After I dropped Mom off, I did more deep thinking to the backdrop of gospel music. The trip home seemed faster than the trip down. When I reached Sedalia, I stopped by McDonald’s for a cup of Joe—only I got a Mocha Frappe. I can only imagine what Grandma Fisher would think of such a sissy version of coffee. I don’t think Jim would be impressed either—he liked his coffee steaming hot and black. He would appreciate the gospel music, I’m sure, and he would have enjoyed the long drive on a beautiful October day.

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

Tuesday, October 19, 2010

What is Life All About?

Sunday morning my seven-year-old granddaughter sat beside me drawing pictures. She labeled the pictures “Cartoon Network” and told me the girl with pigtails was her.

“Daddy doesn’t know what life is all about,” she told me as she put the finishing touches on the picture.

I almost choked on my coffee at her solemn tone. I finally managed a strangled, “Oh? How’s that?”

“He thinks life is about winning,” she said, “and it’s not. Life can be about losing.”

When she said that, I laughed. Rob had warned me about the trophy generation who expect trophies for participating. Kids that don’t want to win, they just want to tie. Winning might upset someone who didn’t win—or (heaven forbid) might feel like a loser.

I’ve always considered winning to be important. Not winning at all costs by any means—but winning fair and square. I never liked to play on a team with someone who didn’t put out their best effort because of an “it’s just a game” philosophy. Competitiveness is an inner urging to do our best whether we are playing a game, facing a tough challenge, or pulling our share of the weight, or more, at work. Coming out in first place is an accomplishment and cause for celebration. Sometimes, the will to win can be the difference between life and death. We have all heard stories about people who refused to die and survived against insurmountable odds because they were determined to win.

“Grandma Linda, I’m serious. If you have the prizewinning pumpkin you can’t make pumpkin pie out of it. The losers get to eat pumpkin pie.”

I had to admit there was some logic to her theory.

“Where did you learn what life is all about?” I asked, curiosity getting the best of me.

“The Berenstain Bears,” she said.

Who am I to dispute the Berenstain Bears? Since I often ponder what life is all about while driving to and fro from my various commitments, I thought about the validity of how life can be about losing.

Anyone who is a caregiver for a loved one with dementia understands losing. We lose our loved ones one skill, one memory, at a time. Day after day we grapple with this situation life has thrust upon us.

When Jim developed dementia, I learned about losing the man I had married, first to the disease and eventually to death. Up until then, life had been difficult at times, but Jim had been my strength and the person who propped me up when I was sad, or just felt like a loser.

Losing Jim made me a much stronger person. I had to make the tough decisions and with no one to pass them on to, I understood Harry Truman’s motto that the “buck stops here.”

So thinking back to a seven-year-old’s statement that life can be about losing, I have to admit that sometimes it is. Losing shapes our character and the fabric of our being in a different way than winning does. We find inner strength that makes us appreciate when life is good.

And my final thought on the matter—pumpkin pie isn’t the only thing we would miss in life if we don’t take a chance on losing.

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

Saturday, October 9, 2010

Changing the Rules

My granddaughter’s last home volleyball game was Thursday night. Somehow I had never seen the volleyball schedule and had missed every game so far. I looked at my calendar and sighed.

“I have an SBW meeting Thursday,” I told my son, Eric, when he called to tell me about the game. The games started at 5:30 in a nearby town, but I don’t get off work until 6:00. Still, I had intended to take some vacation to go to some of the home games.

“Well, maybe you can go to her tournament. That will be either next Saturday or the next one, I’m not sure which,” Eric said.

I didn’t have to look at my calendar to know that it didn’t matter which Saturday—both were booked solid. “I’ll just take off work early and be a little late to my meeting,” I said.

Before I left work, I gave Brenda (co-worker and SBW member) the money to pay for my dinner. She said she would save me a place. “Ask them to serve my meal and if I’m late, I’ll just eat it cold.” I figured that if necessary I could leave before the game ended and be only fifteen minutes late.

I arrived at the gymnasium just as the “B” Team was finishing up their game. I found Eric, Shawna, and Shawna’s mom and dad sitting on the bleachers. Soon the “A” Team finished their warm up and the game was on.

I played on the volleyball team when I was in school and on both a women’s recreational team and a co-ed team with Jim when I was younger. I settled in to watch the game confident that at least this was a game I understood.

A girl served the ball and it went out of bounds. The scoreboard chalked up a point for the other team. I thought my eyes were playing tricks on me. Then, a girl on our team served the ball and the other team returned it, our girls dropped it, so score another point for the visiting team.

“I don’t understand why they are getting points,” I said to Shawna. “Only the team serving can make points.”

“Either team can score regardless of who serves,” she said.

“Yeah, they’ve changed the rules since we were in school,” said Shawna’s mom, Wanda. “At first I was really confused.”

My granddaughter was her team’s best server. She scored five quick points just by tossing the ball in the air and slamming it over. “We couldn’t serve overhand in school,” I said.

As I watched the game, I realized the changes made it a much faster paced game. I suppose that’s much more suited to today’s faster paced world.

On my way to my meeting, I pondered on how many rules have changed over the years. When I was young and dressed up, the only question was whether to wear short or long white gloves. Shoes were generally black or white and you didn’t wear the white ones after Labor Day or before Easter. Everyone dressed up for church, and you wouldn’t have dreamed of wearing your blue jeans or shorts and sneakers. Girls wore dresses to school—it was in the rules.

Some of the rules of life have changed. I heard on the news that for the first time in America, more couples live together without tying the knot than couples who are married. How could such a thing happen? Just to mention a few reasons: people marry later in life, divorce can be financially devastating, there is little to no stigma attached to having children when the parents aren’t married. Sometimes when a loved one has a serious illness, like Alzheimer’s, couples divorce to be able to afford nursing home care.

Rule changes affect everything and everyone around us and can be either good or bad. Changes are bad when it makes things easier, but not better. Rule changes are good if they make the mundane or outdated fresh and new. They may be good if the only good reason for keeping a rule is “that’s the way it’s always been done.”

When I walked into my meeting every woman in the room faced the flag with her hand over her heart. I stopped inside the doorway and joined them to recite the same Pledge of Allegiance I had learned in elementary school. There is no doubt that some rules are better left alone.

Copyright © 2010 L. S. Fisher
http://earlyonset@hotmail.com

Tuesday, October 5, 2010

When Counting Blessings—Count Your Friends

I walked into church Sunday and heard someone call out “Hey, girlfriend!” Looking around, I spotted a woman from last Wednesday’s “Girlfriends Guide to Christian Living” class.

Her greeting made me smile with the memory of the evening spent with a new group of girlfriends of all ages. Last Wednesday, we listed the qualities of a girlfriend. The leader, Jo Perusich, wrote them on a whiteboard. The women called out: Honesty, Loyalty, Steadfastness, Can keep a secret, and Bathroom Buddy.

“Bathroom Buddy. I love it!” Jo said.

“Yes,” said the youngest member of the group, Bethany. “When you go to the bathroom, she gets up without you asking so you don’t have to walk across the room by yourself.”

Jo asked us several thought-provoking questions and we were to write the name of a friend and the incident. When we finished, she asked what we had discovered.

“I was surprised that I thought of certain people as friends,” said one woman.

“I noticed the same name came up several time in different roles,” said another.

The homework assignment was to connect with a girlfriend and tell her that you considered her a blessing, a gift of God, and how much you value the friendship. I thought about this and had an old friend in mind.

Sunday morning, I sat beside Sheila, the Memory Walk Coordinator, and shared the news that our walk total was now more than $18,000. After the services, she and I talked all the way to the lobby where we parted. We hugged each other, and suddenly I knew who I needed to share the message with. I took her hands, looked her in the eye, and told her that she was a real blessing in my life.

She got tears in her eyes and said, “You don’t know how much that means to me.”

I am so thankful that Jo challenged us to put into words how precious friends are to us and how much our lives are enriched through giving and receiving the love of friends.

When Jim developed dementia, I lost my best friend in the world. He was the person who always had my back, was always on my side, no matter how misguided I might be. Strangely enough, it was because of Jim’s dementia that my circle of friendship grew.

First, I became closer to my other female family members as they pitched in to help me. I became close friends with women I met through my Alzheimer’s volunteer work including three women I met in Washington DC. We called ourselves the four musketeers. My connection with these women—Jane from New York, Sarah from Virginia, and Kathy from Maryland—would never have happened if I hadn’t gone to the Alzheimer’s Advocacy Forum.

The friendship circle grows through my involvement in writers groups, in my business women’s group, and through work and work-related conferences. We have limitless opportunities to grow our relationships with friends. With each new friendship we open up our hearts to the blessing of giving and receiving.

In this busy, busy world we may not have as much time for friends as we would like. It is amazing how much a lagging spirit can be rejuvenated by squeezing an hour from our schedules to spend quality time with close friends.

copyright (c) October 2010 L.S. Fisher
http://earlyonset.blogspot.com

Tuesday, September 28, 2010

Doctors Age Just Like Everyone Else

Recently, my three-year-old grandson crammed a crayon up his nose and a specialist had to extract it. When my son told me about the incident, I said, “Kind of reminds me of the time I lost the pencil eraser in my ear.”

“Was that you? I thought it was one of your brothers,” he said.

I recall that experience vividly, considering I was only a second grader. My ear itched, and I used the eraser end of my pencil to scratch it. I noticed the eraser had fallen out of the pencil and looked all around my desk for it. When I couldn’t find it, I just assumed it had rolled out of sight.

A week or so later, I developed a terrible earache. Mom took me to our family doctor in Stover. Dr. Hoffa sat me on a table and pointed a bright light at my ear.

“Wow, that light is shining right through your ears and onto the wall,” he said.

I might have been only seven, but that didn’t seem right to me. “No it isn’t,” I said. I did roll my eyes around trying to see if the light really was shining through.

The doctor stuck some high-tech instrument into my ear, tweezers, I’m pretty sure. Then, he showed me the little pink eraser off my yellow No. 2 pencil. “You knew that light wouldn’t shine through because the hole was plugged up with this.” he said.

“I wondered what happened to my eraser,” I said.

“Why didn’t you tell me you had an eraser in your ear?” my mom asked.

“I didn’t know it was there!” I said.

The doctor gave me a sucker and sent me on my way. Dr. Hoffa was the only doctor I saw until I married and moved away. He eventually retired and developed Alzheimer’s before his death.

When Jim and I were newlyweds, our family doctor was Dr. Kirby who retired many years ago.

When a family doctor retires, patients scramble to find another doctor. It’s discouraging when you make call after call to hear, “We aren’t taking new patients.” You keep asking yourself questions: Will I have to resort to finding a specialist for each medical problem I have? How will I find a good cold and flu specialist? Is the emergency room going to be my primary physician?

A 2008 University of Missouri (MU) study predicts a 44,000 shortfall of family doctors by 2025. Jack Colwill, professor emeritus of family and community medicine at MU School of Medicine, attributes the shortage to retiring baby boomer doctors being replaced by younger doctors who specialize rather than go into general practice.

Given how difficult it has always been to find a family doctor, this is not a huge surprise to many of us. We have become a more mobile society and if we aren’t moving from place to place, our doctors are. Either way, it’s up to us to find a doctor that fits our needs.

Rural areas will be particularly hard hit. Programs are in place to encourage medical students to become general practitioners in rural areas. MU has programs to place students in rural hospitals for their residencies and pre-admits students each year from rural areas. The students admitted under these programs are more likely to practice family medicine in a rural setting.

Family doctors know who you are when they see you. Your family doctor knows your family history, as well as your medical history. When Jim began to develop dementia, our family doctor knew Jim’s forgetfulness was not normal for him.

There may not be too many old-fashioned general practitioners like Dr. Hoffa, but as long as kids have No. 2 pencils, we need family doctors.

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

Monday, September 20, 2010

The Dance and Memory Walk

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, September 12, 2010

Alzheimer’s Awareness - The Color Purple

I’ve always had a love affair with the color purple which worked well when I discovered it was the Alzheimer’s color. We are gearing up for Memory Walk so I’ve gotten into the spirit by painting my fingernails and toenails purple. Not just any purple—Xtreme Wear Deep Purple.

I dressed for church today in my “Walk to End Alzheimer’s” shirt and topped, or bottomed, it all off with my brand new purple high-heeled Crocs I bought at the Crocs Outlet in Branson.

It so happened that the air conditioning was broken so we shopped in heat more Xtreme than my nail polish. Perhaps, my brain was overheated when I fell in love with the purple shoes, or so my granddaughter seemed to think. She said the shoes were a little weird, but Crocs are comfortable shoes with cushiony padding underfoot that's a lot like walking around with a Memory Foam pillow tied to the bottom of your feet.

At church this morning during the “greet those around you” moment, the lady sitting behind me said she loved my shirt. On the way out the door, another lady admired my shoes.

“My granddaughter thought they were a little strange,” I admitted.

“They are such a fun color!” she said. I had to agree—but then they are purple slippers so gotta love ’em, right?

“They're comfortable too,” I added.

Getting into the purple zone is more than wearing the appropriate clothing and accessories. It is a time to fundraise and get out the word about the Memory Walk. On Labor Day, Jim’s Team raised $1,150 at our traffic stop.

Saturday some of us stood in front of Walmart handing out “Save the Date” cards and forget-me-not seed packets with the tiny sheets of paper stapled to it with walk information and contact numbers. We had a collection bucket available for donations, but our main purpose was to create awareness about the Alzheimer’s Memory Walk.

The Walk Committee has a busy week ahead. We plan to gather door prizes and last minute items. We will make a lot of last minute preparations so that everything goes smoothly on Saturday, September 18.

I’m trying not to panic because my books haven’t come in. Part of my sponsorship is signing and distributing Early Onset Blog: The Friendship Connection. The turnaround is usually a few days on book orders, but as of the last time I checked they were still “in production.”

A lot of work and planning goes into the Memory Walk and that cuts down on the chances of things going too wrong. Rain or shine, I know one thing for certain—a lot of people will be up early Saturday morning and head to the Fairgrounds for Memory Walk. Purple will be the color of the day when we grab up the banner and walk to end Alzheimer’s.

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

Sunday, September 5, 2010

Labor Day: Happy to Be Busy

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

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

“Fine,” I replied, “and how are you?”

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

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

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

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

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

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

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

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

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

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

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

Wednesday, August 25, 2010

Alzheimer’s Breakthrough Ride - Sedalia MO

I began this day of vacation at 4:30 a.m. to meet and greet the four Missouri researchers who will cycle 71 miles from Sedalia to Jefferson City. Jon Cirrito, PhD, and Jessica Restivo, are researchers from Washington University School of Medicine in St. Louis. Joining them were Ben Timson, PhD, Professor of Biomedical Sciences at MU and David Oliver, PhD, Assistant Director of MU Interdisciplinary Center on Aging and Board President of the Alzheimer’s Association Mid-Missouri Chapter.

The four researchers and the support team stayed the night at Comfort Inn in Sedalia, and I wanted to catch up with them before they left town. I had a cup of coffee while they ate fruit, drank juice, and prepared for the ride.

I know David Oliver and he introduced me to the other members of the team. Dr. Jon Cirrito showed me a Google map of the route. They would be passing through some small towns that not many other than locals have visited. The bicyclists will go through Clifton City (“not a city,” I informed them), Prairie Home, and Jamestown before arriving in Jefferson City. They have three scheduled rest stops along the way and have no time limit other than to reach their final destination before dark.

“Some of the other groups have hit really bad weather in other states,” Dr. Oliver said as he applied generous amounts of sunscreen to his face and arms. “We credit this beautiful 60 degree weather to collective prayer.”
Dr. Oliver, 68, was the oldest in this group of cyclists. He said cyclists had to sign a release and list the medicines they took. “My list was long,” he said. “I have a stent, poor knees, and lousy hearing, but I am functional and know I can ride this bike 71 miles for this worthwhile cause. I’m looking forward to it.”

We walked outside where the four cyclists each filled two bottles—one with water and the other with Gatorade. Finally, the bicycles were loaded onto the two support vehicles, and we headed across town to Hubbard Park.

The bicycles were unloaded, and Jessica decided she needed long sleeves and pulled a long-sleeved T-shirt over her official Alzheimer’s Breakthrough Ride shirt. They climbed on their bikes and fastened their helmets. Dr. Cirrito took the lead on his bicycle equipped with a GPS.

It was exciting to see this group of researchers be part of a nationwide effort to make Alzheimer’s disease a national priority. The Ride began in San Francisco on July 17 and will end in Washington DC on World Alzheimer’s Day, September 21. More than 55 researchers have been collecting signatures to present to Congress urging them to make Alzheimer’s disease a national priority. The original goal to obtain 50,000 signatures has been doubled to 100,000.

Approximately 110,000 Missourians have Alzheimer’s disease. An estimated 5.3 million Americans have Alzheimer’s and as the baby boomers age, the number is expected to swell to as many as 16 million by 2050.

Dr. Oliver explains that research funding is dismal especially considering the toll on individuals, families, and others. “I believe current research spending is around $375 million. We are riding to encourage Congress to push this to $2 Billion and make AD a major priority like other killer and devastating diseases.”

The side of the “pony” (as the truck is called) says, “The toughest hill to climb is Capitol Hill.” Even with the winding, hilly blacktop ahead of them, I’m sure Jessica, Jon, Ben, and David wholeheartedly agree.

Follow the progress of Alzheimer’s Breakthrough Ride at http://www.alz.org/. While you’re there, sign the petition.

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

Tuesday, August 24, 2010

Some Will Walk and Others Will March

Thursday night we began to finalize plans for our September Memory Walk. Months of leg work, calls, and personal contact have led up to the big date less than a month away. Our catch phrase this year is “It all just falls into place.” At least that’s the way it seems to people who show up on walk day to find that helping hands have joined together to make sure the event runs smoothly.

A Memory Walk is a big undertaking and without community Champions, it would never happen. Champions are the teams like Fair View that have participated since the first walk I organized in 1999. They have been part of every walk, every event that the Memory Walk committee has hosted. Not satisfied with doing a little, they do a lot. They fundraise all year, and consistently support us with thousands of dollars. This year, they took another step and became a corporate sponsor.

It warms your heart to know that even in these tough economic times, people continue to support our local chapter. One of our longtime sponsors is Ken Weymuth at W-K. I was having an oopsie fixed on my new car when I asked if Ken was in the office. I had dropped off a corporate sponsor packet a few months back and had never had a chance to follow up on it. I walked into his office and asked him if he would be a sponsor and he asked, “What will it cost me?” A few minutes later I walked out check in hand.

The Sedalia Democrat has been our advertising sponsor for more than ten years. I have worked with three different publishers. The current publisher, Dave Phillips paired us up with Erin Livengood who takes the time to produce professional ads.

Third National Bank and Central Missouri Electric hold perfect corporate sponsor records. Septagon came onboard during the years Shelley Spinner coordinated the walk. That was also the time we started printing the shirts locally and Main Street Logo pitched in to do that for us.

The list goes on and on—the sweet ladies who give $5 to sponsor a walker, companies that donate food, drink, and door prizes, the host of volunteers that turn up to set up tables or dole out T-shirts, and let us not forget Don the Balloon Man who twists balloons into colorful hats.

We have a walk with ordinary people—sorry, none of us are celebrities. But more celebrities are supporting the Alzheimer’s Association and one of them decided to hold a “March” rather than a walk. Maria Shriver, California’s First Lady has organized a 5K March and candlelight vigil. Several celebrities have already committed to joining in the March—Rob Lowe, Leeza Gibbons, and Jane Fonda—to mention a few. Celebrities can make a powerful impact, but that doesn’t replace the efforts needed by everyday people who have spent time in the trenches caring for a loved one with Alzheimer’s. It doesn’t replace the hugs of support and encouragement for caregivers to help them make it through difficult days, or smiles to lift their spirits when they are overwhelmed with responsibility.

Think about what you can do to make it “fall into place.” It takes all of us who know what it’s like to make the effort to bring Alzheimer’s awareness to our local area so that it might expand to the national arena and onward to a global movement. So whether we march or walk, it is important that we do everything we can to call attention to the alarming escalation of dementia as the baby boomers age. The only way to move forward is one step at a time.

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

Monday, August 16, 2010

A Leaf on the Family Tree

My mom stayed all night with me Saturday night. I was trying to remember the last time she spent the night at my house and finally decided it was when Jim was still at home but needed supervision at all times. I could not get professional help for more than about six hours a day, three days a week. That left a lot of gaps during my forty-hour workweek. My mom would pack a bag and drive for an hour to fill out the weekly schedule. She would arrive before the day help had left and stayed with us a couple nights each week.

I know my brothers and sisters agree with me that we are fortunate to have a mother who is in such good health although she is in her eighties. Mom is fun-loving and still likes to play her guitar and pal around with her sister-in-law, Lebetta.

When my mom came up Saturday to spend the night, we didn’t have anything we had to do, so we visited and spent some quality time together. It wasn’t until after we spent the afternoon and evening together that I realized how much I missed having that much time with her. It’s a sad commentary on how hectic I’ve let life become that I have so little time to visit with my own mother.

My mom and I have a lot to talk and laugh about. Sometimes the conversation turned serious as we talked about dreams we have about loved ones who were once a major part of our lives. Mom talked about her dreams of dad. “He is usually about thirty-five in my dreams,” she said. “He’s always young and healthy.”

“Jim never has dementia in my dreams,” I said.

“I dream about Mommy and Poppy,” she said, meaning her parents. “You know, Lebetta and I were talking the other night about how we know more people that have died than are alive.”

I can’t imagine the hole left in a person’s life when they have outlived all their siblings. My mom came from a big family and she is the only one living. Her parents, sister, and brothers are all gone.

I think about my cousins on Mom’s side of the family. How they’ve each lost at least one parent, and many of them have lost both. My dad died in 1990 at 67 years old. That is not much older than I am now. My mom has soldiered on through two serious relationships that have both ended. It is a good thing that she is a strong woman. She checks on my brother Donnie almost every day. She’s moved to town to be near the long-term care facility where he lives. My brothers and sisters who live nearby, provide the kind of relief for Mom that she did for me when Jim was the one that needed looking after.

In many families, relatives feud with each other and every family gathering is tension filled, because no one can keep track of which family members are not speaking to each other or whose feelings are hurt. Our family has always been blessed with a healthy dose of minding your own business. We are supportive of each other, but none of us try to tell a brother or sister how to live his or her life. Nope, we just live and let live. It may not work for every family, but it certainly works for ours.

Each of us is a leaf on our family tree and, like a leaf, we can’t just hop from our tree to another because we don’t like the limb God attached us to. It is always much better to get along with the other leaves on the same branch.

While I was gone this evening, Mom called and left a message on my answering machine. She just wanted me to know that she really enjoyed our visit. It was too late by the time I got home to call her back, but I have to say a resounding, “Me too!”

I’m thinking that having my mom stay the night is something I need to do more often. Maybe next time she can bring her guitar. Jim would be pleased if guitar music once again drifted through the rooms of the house he built.

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

Sunday, August 8, 2010

When Puzzle Pieces Don’t Fit

When Jim developed dementia, I thought it would be a good activity for us to put jigsaw puzzles together. I set up a table and we worked on a 750 piece puzzle. Jim always felt good when he could fit a piece into the puzzle. Sometimes, he bent pieces trying to force them into places where they “almost” fit.

I went to a Business Women of Missouri conference this weekend and was particularly impressed with speaker Mary Gage’s comparison of life to a jigsaw puzzle. She gave some blog-worthy information in her motivating session. One of the things she talked about that I thought was relevant to my life was how sometimes a piece don’t seem to fit, and we just have to lay it aside and put it in later when we find where it belongs.

She asked if anyone ever tried to put a puzzle together without looking at the picture. Not a single hand was raised. No, we all want to know what the picture looks like before we start putting the pieces together. Besides, if we are honest, it makes it a whole lot easier. We don’t waste time trying to place a piece of grass at the top of the puzzle when we know from the picture that it goes at the bottom.

As with many conferences, my “ah-ha” moment didn’t come from the speaker, but rather from a stranger sitting across the table from me. We had a puzzle on our table, and as a group, we were asked to put the puzzle together. Well, it wasn’t a jigsaw puzzle, or I’d still be sitting at that table trying to do my part. It was one of those children’s puzzles with probably less than 30 pieces in it.

We chatted while we put the puzzle together, and the woman said she was a “puzzle person” and that one time she had planned an exercise with puzzles. She had taken two puzzles with the same picture and mixed them together. The idea was that the pieces would be interchangeable and make two puzzles when they were done.

I’m not sure what the point of the exercise was, but she learned that just because two puzzles have the same picture, doesn’t mean the pieces are interchangeable. What she discovered was that the pictures were identical on the boxes, but pieces were shaped differently.

So where is my “ah-ha” moment in this story? People with Alzheimer’s have the same picture on the outside that they had before they developed the disease, but they are trying to fit pieces from a different puzzle into their life’s picture. It’s like they’ve been handed a different box of puzzle pieces to fit into the puzzle they already have. The pieces no longer fall into place, and even if you put one aside, you won’t find a place for it later.

We all know from past experience, that unless the pieces are a perfect fit, you can’t force them into place. A misfit piece leaves a gap, and you know immediately it won’t work. Occasionally, you will find a piece of a puzzle that seems to fit, but it may stand out from the surrounding pieces because it is the wrong color and doesn’t complete the picture.

While Jim and I worked on our puzzles, he would sometimes pick up a piece and walk away with it in his hand. He would lay the pieces down in out of the way spots and sometimes I couldn’t find them. In the completed puzzle all the pieces we had fit neatly together, but sometimes as many as five pieces were missing.

We know where we want our lives to go, and we plug away at the pieces until we find where they belong. But isn’t our personal life’s big picture fuzzy and not a finished image? I believe that our pictures change and our puzzle pieces are constantly adapting to the uncertainty.

When a person has Alzheimer’s, he struggles every day to fill in missing pieces of this puzzle called life. By being supportive, you might help your loved one find some of the misplaced pieces and fit them where they belong.

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

Monday, August 2, 2010

Already August

I turned the calendar this morning and found it hard to believe it is already August. Before this month is over, kids will be back in school, and we’ll all be wondering what happened to the summer and all the plans we made in the springtime.

When I was in elementary school, it seemed to me that summer lasted for a long time. The first day of school some kids had changed so much over the vacation we might not recognize them at first glance.

Now that we are adults, we don’t usually see drastic changes over three months’ time. It’s hard to notice a few more “laugh lines” or that the sun is glinting off more gray hair than the last time we saw someone. And unless you are in the educational field, you most likely see your co-workers nearly every day and don’t have much occasion to be shocked by a change that happened while you weren’t looking.

August is State Fair month. It is usually extremely hot or stormy. What is it about the State Fair that brings out the worst in the weather? Is it because all us wimps are used to air conditioning and suddenly find ourselves in the great outdoors—walking around on hot pavement—without any shade. What’s not to love about that?

It seems like time goes by faster than it ever did. Not only is summer almost gone, but with surprising speed we’ll be into 2011. Here we are ten years into the twenty-first century and I still sometimes want to put “19” in front of the year.

August was once a time of birthday celebrations. Jim would have been 65 years old later this month. He lost the battle with dementia more than five years ago—and never made it to his 60th birthday.

At one time, in my youth, I’m sure I thought anyone in his or her 60s was ancient. Now, it doesn’t seem old at all. I have three older siblings who are in their 60s, and I’m getting pretty darn close to it myself. I have a little time left, but as fast as time goes by, we’re going to have to call the fire department before anyone lights the candles.

Growing older is like anything else—there is good and bad. On the plus side, I think we older people don’t worry so much about what others think of us. We still like to look good, but we would rather have a few wrinkles than have a surgeon pull our faces into a plastic mask. Some of us wear our gray hairdos proudly, or else we just cover the gray with whatever dye suits our fancy. See a man with a bald spot and you’ll often see one that shaves it all off as if he had it planned all along. Another plus side to getting older—our eyesight begins to fail us and (guess what!) that makes everyone look better. We can’t see the flaws like we once could.

On the downside, we find we can’t always ignore some of the things we used to. Last night when I woke up with a heavy feeling in my chest, I debated whether it was from all the acidy tomatoes I had eaten, or whether I needed to call 911 to get emergency medical help. I look at myself in the mirror and think, I may not feel too old, but I am for sure old enough to have to consider a heart attack as something not too far out of the realm of possibilities.

Another down side—you may only pack on a pound or two a year, but we know what that means. The more candles on the cake, the more likely we are to be packing extra pounds around the old midsection. That in turn causes health problems—diabetes, high cholesterol and triglycerides, high blood pressure, and on and on and on. We wind up with problems in body parts that we didn’t even know we had. Thank goodness for Google and all the health networks available with all the symptoms, side effects, and health alerts that any aging computer savvy middle-age-going-on-senior might have.

Here it is already August—and the next thing you know it will be autumn. Probably in the next week or so Halloween decorations will be in the stores. Time passes by, we flip the calendars and wonder what happened to summer. It used to seem like it lasted so long and now it just flashes by with the speed of life.

Copyright © August 2010 L.S. Fisher
http://earlyonset@hotmail.com

Sunday, July 25, 2010

Something to Look Forward To

Life is more fun and exciting when we move through it with anticipation. It is easy to get into a rut or a funk when all you have to look forward to is drudgery.

Jim was always the traveler in the family, and he was happiest when we had an upcoming trip. He would plan for months and pack weeks in advance. “I have to have something to look forward to,” he would always say.

Later, to make it through the caregiver years, I took Jim’s advice. I’ve kept up the habit of marking my calendar months in advance when I have an upcoming event or trip.

It doesn’t take a major event to give my spirits a makeover—I’ve learned to find joy in unexpected places. I spent last week in Minneapolis for a benefits conference which is held in three or four different locations throughout the year. Minneapolis isn’t the most popular location, but it is the one that worked out for my schedule. To sweeten the deal, my co-worker and I went online and found tickets to “A Streetcar Named Desire” at the Guthrie Theatre.

With the extensive traveling I’ve done throughout my lifetime, I had not once been in Minnesota. As the plane came in for a landing, the thing that caught my eye was all the lakes. It looked like every housing development was clustered around its own lake.

Our hotel was at the city center and Brenda, my co-worker, and I pulled our suitcases toward the exit with full confidence we could catch a taxi to the hotel. All the taxis were on the other side of the street behind a barricade. I had never seen a setup like that before. We found a policeman and asked him how to cross the street. If that doesn’t make you feel like a country cousin, nothing will. He called it “poor design” and we had to go back inside the building, down a level, cross under the street and then up a level to come out on the other side.

On the way to the hotel, Brenda asked the taxi driver where the Mall of America was located. “It’s the other side of the airport,” he told us. “It will cost you about $80 for a taxi from your hotel.”

How can you go to Minneapolis and not visit the iconic Mall of America? Isn’t that sort of un-American? Not to be deterred, we checked with the concierge, knowing that downtown hotels would not want to lose customers because it cost so much to get to the huge tourist attraction across town. Sure enough, he told us we could exit the hotel turn the corner, go two blocks and take the light rail to the Mall of America for $1.75. Much, much better than $80.

The best way to get to the Guthrie Theatre where the Tennessee Williams’ play was showing was on the light rail. We rode the street car known as Hiawatha to watch a “Street Car Named Desire.” The theatre was only two blocks from a Transit Station, and when the play let out at 10:45 p.m. we walked to the station. The trains passing by in the other direction were jammed with Twins fans who had boarded at Target Stadium. Before long, we hopped on and rode back to the hotel. Round trip equals $1, experience priceless.

We kept noticing a lot of young ladies wearing tiaras and beauty queen sashes. They were in town for the Queen of the Lakes competition and the Aquatennial Torchlight Parade. Before the parade, hundreds of runners participated in a 5k run. All this took place within a half-block of our hotel. I don’t recall ever seeing so many people run and the parade turned out to be the parade that never ended. Long after we were back in the hotel room we could still hear the pa-rum-pa-rum-pum of the high school bands.

As a bonus, the conference turned out to be one of the best I had ever attended. Interesting speakers updated us on all things benefit related.

While riding the light rail, we noticed all the people climbing on board with their suitcases to go to the airport. The train stopped at two different terminals, but a chart showed that we would get off at Lindberg to fly on Delta. Okay, we could take a taxi for $40, or ride the train for $1.75. It wasn’t a tough decision at all.

All in all, it was a great little break from everyday work. Having something to look forward to helps me wake up in the mornings and want to get out of bed. Having a good time and not breaking the bank, is a plus. Still, as much as I enjoyed it, a week was long enough and I woke up with a singing heart this morning because I’m at my favorite place—home.

copyright (c) July 2010 L.S. Fisher
http://earlyonset.blogspot.com

Monday, July 19, 2010

Comparing Apples to Pears

The Alzheimer’s Association sent a newsletter this week that says “pear” shaped women are at higher risk of developing Alzheimer’s than “apple” shaped women. This is the first health bulletin I recall that gives apple-shaped women, who carry excess weight around their waists, an advantage over pear-shaped ladies, who carry their weight on their hips and thighs.

I know most women would prefer to be slim and trim, but that becomes harder as we grow older. In fact, a recent obesity report says that slightly more than one-third of Americans are obese. Obesity in my home state of Missouri is 29.3 % and we weigh in at No. 12 in the state rankings.

If you don’t consider yourself to be obese, but merely overweight, you should check the guidelines. BMI (body mass index) is used to determine whether an adult is merely overweight or obese. If your index is in the 25-29.9 range, you are overweight. Anything over the magic 29.9 indicates obesity. If you don’t know your BMI, you can find free BMI calculators on the Web. One thing is obvious when I look at mine—I just need to be a couple of inches taller. Who would have ever thought my goal in life would be to have a BMI that falls into the “overweight” category.

I’ve been honest enough to rank myself with the apple shapes for many years. The extra weight around my middle makes it hard for me to tie my shoes and dang near impossible for me to polish my toenails. That is a major problem during the sandal-days of summer. The only thing I can say is that once I huff and puff until I get it done, the super-duper nail polish I buy stays in place for several weeks.

Finding my way around polishing my toenails doesn’t make me any healthier. Apple shapes have a greater risk of cardiovascular disease. The recommendation for both pear-shaped and apple-shaped women is, of course, to lose weight. Higher risks for any obesity-linked disease have to do with the type of fat stored in our bodies. Women who carry their weight on their behinds, hips and thighs store the kind of fat that increases their risk of Alzheimer’s. Cognitive tests show a relationship between the amount of fat and forgetfulness.

I have high cholesterol and triglycerides. My apple shape puts me at a higher risk for heart attack, diabetes, high blood pressure, and stroke. Holy cow, that should be enough to get me on a serious diet. It is easier to think of dieting right after my cholesterol and fat rich breakfast of bacon and eggs. I have been a bad, bad apple-shaped woman this morning. I don’t make a habit of eating such a breakfast, but there’s something about a Saturday morning that makes it irresistible. I’m usually in such a rush that I’m lucky to eat an English muffin or bagel. Skimping on breakfast goes against my upbringing.

I was raised to believe that a day should start with a good breakfast. Health and nutrition guides tout the importance of breakfast based on student test scores and adult productivity in the workplace. Any diet aficionado will tell you to eat your calories earlier in the day. I’m pretty sure most diets don’t recommend the kind of breakfast I ate this morning, but the general idea of taking time for breakfast is there.

The bottom line is that to reduce Alzheimer’s risk, pear-shaped women should lose weight. Don’t we all know that exercise and losing weight is part of a healthy lifestyle? I have a gym membership and, at least most of the time, opt for low calorie, no-sugar, omega rich foods, I lose probably fifty pounds a year, but it’s the same five pounds over and over.

Genetics determine our body shape, and we just need to do the best we can with our inheritance from our foremothers. Living a long life isn’t the only goal we have as intelligent human beings. We are stewards of our bodies and want to live happy, healthy, independent lives.

copyright July 2010 L. S. Fisher
http://earlyonset.blogspot.com

Sunday, July 11, 2010

States Plan for Alzheimer’s

Alzheimer’s Advocates throughout the United States have worked with their home states to develop a plan to prepare for the silver tsunami made up of aging baby boomers. So far twelve states have completed their plans. Another eighteen states, including Missouri, are developing plans.

In addition to the expected elected officials and aging professionals, the nineteen member Missouri Task Force includes a person with memory loss and a caregiver. Community Forums were held throughout the state to address the challenges of families facing Alzheimer’s disease.

The 110,000 Missourians who have Alzheimer’s disease are cared for by 180,000 unpaid caregivers who provide 156 million hours of unpaid care. Most caregivers want to care for their loved one at home as long as possible. With the necessary support and services in place, this army of dedicated unpaid caregivers can save the state $1.7 billion.

The Missouri Community Forums helped the Task Force pinpoint the areas that needed attention. The concerns family members voiced at the Alzheimer’s Association Mid-Missouri Chapter’s forum were:

1. Access to early and accurate diagnosis by doctors and health care professionals.
2. Availability of affordable home health and respite care to keep loved ones at home longer.
3. Investment from the state of Missouri for Alzheimer’s research.

This short list of goals is reasonable, and any caregiver can attest to their validity. Early diagnosis is important. If dementia-like symptoms are caused by a treatable condition, it is important to take proper measures to address the underlying problem. If the diagnosis is Alzheimer’s, a proper treatment regimen can be started when it does the most good. Early diagnosis helps the family plan for the future.

Affordable home health and respite are basic needs when a loved one is cared for in the home. One person cannot be awake and alert twenty-four hours a day, seven days a week. Providing care for a person with Alzheimer’s is a huge undertaking! Not only do states need a plan, individuals need one to prevent burnout and illness. A care plan designed to provide relief for the primary caregiver with home health support and occasional respite care will keep people in the comfort of their own homes longer.

The state of Missouri annually spends $100 million in Medicaid for dementia long term care. By investing in Alzheimer’s Service Grants to support families caring for their loved ones at home, the state could save millions in Medicaid dollars.

The Missouri Alzheimer’s State Plan will be delivered to the governor in November as part of Alzheimer’s Awareness Month. It is a fiscal responsibility of our elected officials to tap into this valuable resource of dedicated caregivers.

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

To see which states have plans:
http://www.alz.org/national/documents/StatePlanMap.pdf