A Vietnam Veterans Tribute

The Sedalia Democrat hosted a Tribute in honor of the 50^th Anniversary of the Vietnam War. Leading up to the event, Latisha Koetting tracked down family member to tell the stories of the men whose names are inscribed on the Vietnam Memorial on the courthouse lawn. I’ve been saving the newspaper stories because the stories of these young men tug at my heart.

During the course of the event, three local veterans told their stories. James “Smitty” Smith told about adopting a daughter while serving in Vietnam. He spoke of his struggles to go though different embassies and how surprised he was that he had to take the baby out of the orphanage. He found a place for them to live until eventually he sent the baby home with another soldier. His daughter Teresa, who works for homeland security, was present and spoke about how she owed her existence to the Vietnam War and how grateful she was to her mom and dad.

Jim Clark told a humorous account of his time in Vietnam although he had serious injuries. He said that he liked to tell tall tales sometimes so he told a friend one time about the day he was injured. He was in a field without cover and he spoke of trying to hide behind a watermelon. His story was that he took out his knife and cut the buttons off his shirt. “Why did you do that,” he said his friend asked. Clark’s answer, “So I could get lower to the ground.”

The final speaker, Gregg Davis, spoke of living through the loss of his legs and other injuries. He told of how his men ripped up their shirts to make tourniquets for him and another wounded Marine. Gregg was vocal about the damage caused by Agent Orange and the government’s lack of response. He spoke of the name-calling and how the Vietnam Veteran’s were treated after they came home.

It was Gregg’s story that made me think of Jim. I’m sure Jim would have agreed with Gregg’s views a hundred percent. I can’t remember who said it, but one of the speakers said a veteran told him, “I died in Vietnam; I just didn’t know it.” I believe that is true for a lot of the Veterans. I know the war was a big transition for Jim, and he was a different person when he came back.

Jim’s picture was included in a tribute video along with more than sixty Vietnam Veterans who have died since the war. Latisha Koetting made an observation that it seems like the Vietnam Veterans are dying at a younger age that previous veterans. This agrees with my own thinking. I’m afraid we aren’t going to see many old Vietnam Veterans. I can’t help but wonder what part Agent Orange had to do with Jim’s physical problems, and I know that PSTD had everything to do with his depression and emotional problems. It only leaves the question as to whether the war had anything to do with the rare form of early-onset dementia that Jim had.

These thoughts and the tribute must have been the reason I had a dream about Jim last night. I dreamed Jim wore a brown sweater that was much too big for him. He pulled the sweater across his chest one side over the other. “I don’t feel like me in here,” he said, with his hands over his heart. I straightened the sweater and buttoned it for him. I put my arms around him and held him close to me. “Now do you feel like yourself?” I asked. He smiled and said, “Yes, I do.”

When I awakened from the dream, I felt like I had been holding Jim while he slipped into the world of dementia. The feeling of loss was as strong as ever, but the unbearable thought was his loss of self.

The tribute was sad, but it was also long overdue. Jim would have appreciated the tribute, but he would have left before “Taps.” The sad tune always made him think of funeral duty during the year after he returned from his tour of duty in Vietnam. The war changed everything for Jim and for our family. I think he died there, but just didn’t know it.

Copyright © Oct 2011 L. S. Fisher

http://earlyonset.blogspot.com

Alzheimer's puts stresses on caregivers, but these strategies can help | alzheimer, parent, puts - Sedalia Democrat

Alzheimer's puts stresses on caregivers, but these strategies can help | alzheimer, parent, puts - Sedalia Democrat

Life Through the Rearview Mirror

During my lifetime, I’ve gone on many road trips for various reasons. Of course, my favorite trips were those taken during those golden weeks of the year known as vacation. On those trips, life looked great through the windshield.

.I can’t remember many trips that I didn’t travel with someone else. Traveling with others makes life’s little adventures more fun. It also increases the need for flexibility and bargaining. “I’ll go to the amusement park with you today, if we stop at a museum tomorrow.”

When we are on a fun trip, we wake up each morning filled with anticipation. On a long trip, each day brings us closer to our destination—the ocean, the mountains, an exciting city, or maybe the breathtaking beauty of a national park.

If we are lucky, the sky is blue, the sun shines, birds sing and every event, place, and day exceeds our expectations. Other journey don’t measure up to our expectations, and we feel disappointed. Sometimes it’s just something way beyond our control—the weather, illness, car trouble, an emergency at home, or various combinations of disasters. We may even regret wasting our time and vow we will not return to that particular destination.

Some journeys we plan, others just happen. Some we move ahead with confidence and other times, we look back and wonder why we are even on this trip.

Throughout the Alzheimer’s journey, we often find ourselves taking our eyes off the road ahead and looking at life through the rearview mirror. This holds true for both the caregiver and the person with the disease.

The person with the disease becomes more dependent on the familiarity of the road already traveled. As the ability to process new information becomes more difficult, the more important the rearview mirror becomes.

The caregiver may worry about the dangers of the journey ahead and believe that if they look into the rearview mirror they will feel safer. They have managed to navigate the road so far, and the road ahead may have hairpin curves, tedious detours, drop-offs without guardrails, and maybe even a bridge out.

When I travel, I know that the rearview mirror has it place. I like to check the rearview mirror to see how the traffic behind me is flowing. Is that car going to pass me on a curve? Okay, I need to change lanes and although I don’t see anyone now, I know a car was behind me a few minutes ago and they haven’t exited or passed—yeah, there they are in my blind spot. Oops, is that highway patrol officer flashing his lights at me? When you pass another vehicle, it is more certain you have cleared the vehicle when you see it in your rearview mirror rather than in side mirrors that plainly say, “Objects are closer than they appear.”

So what can it hurt to look at where you’ve been more than where you are going? You never want to become so distracted looking at what is behind you that you miss important signs of what may lay ahead.

Not everyone wants to be a trailblazer, and you don’t have to be when you are traveling the Alzheimer’s Journey. Others have been down the road you are traveling and they are willing to share their knowledge and help you chart your journey. Any journey is easier with a map and an itinerary. If you know which route you are going to take and what you will be doing along the way, the trip runs smoother and is much less stressful. 

Copyright © October 2011 by L. S. Fisher

http://earlyonset.blogspot.com 

The Colors of Autumn

On a drive last weekend, I had my first glimpse of autumn colors. No other time of year is as beautiful as autumn with its hues of blazing orange, yellow, red, purple, and rust. Between the colors and the brisk morning air, I was inspired to begin my autumn decorating. Not satisfied with pulling out my Halloween decorations, I was compelled to go ahead and decorate for that seemingly forgotten holiday—Thanksgiving.

The two holidays blend well together with their autumn tones. I learned a long time ago that when you turn jack o’lanterns to the wall, they look just like Thanksgiving pumpkins. I guess my pilgrims can be Halloween costumes, but I don’t think many kids dress as pilgrims. It just seems to me that the two holidays are related—not as closely as brother and sister—more like first cousins.

With the holidays ahead and the temptation to go overboard on decorations, it may be time to consider whether decorations are in the best interests of a person with Alzheimer’s. If your loved one is in the early stages of the disease, she may be more enthusiastic about holiday decorating than she ever was. He may enjoy handing out candy to trick-or-treaters.

As the disease progresses, decorations and all the hubbub of the holidays may become more of an ordeal than a pleasure. One of the best ways to make life more pleasant for a person with dementia is to avoid change. Holiday decorations can change the look of a familiar place—home.

When Jim was in the later stages of the disease he became agitated and distressed when I started putting away pictures and other decorations that normally sat on end tables and on the bookshelf. One year, he followed along behind me removing the pictures from the storage box and putting them back on the shelf.

It taught me a lesson. Just because it was what I wanted to do did not mean that it was the best decision for that particular time. When he was living at home, it was better to simplify the holidays and  rethink traditions that no longer worked with our situation.

And, guess what? I never felt the least bit guilty about it and it never ruined the holidays. Throughout life, traditions have to be adjusted to each particular era. If a tradition makes someone unhappy, it is time to create new ones.

There’s something about autumn harvest that says it is time to benefit from the hard work that came before. It is time to store up for the frigid weather ahead when winter brings the beauty of the snow and glistening ice tinged with the dangers of wind chills and treacherous roads. Aw, time marches on, and we always have the unique beauty, and excitement, of the seasons ahead.

Copyright © October 2011 L. S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Journey – Alzheimer’s Resource

On Alzheimer’s Action Day, “Alzheimer’s Journey” was launched as a new section to my www.lsfisher.com website. Journey is written for caregivers, those with dementia, or for others who want basic information about Alzheimer’s. Knowledge is key to coping with Alzheimer’s.

When my husband, Jim, was diagnosed with dementia, we were at the bottom of the Alzheimer’s learning curve. Neither of us had a close relative with Alzheimer’s and really knew nothing about the disease.

I thought Alzheimer’s was forgetfulness that developed in old age, and couldn’t really understand why my forty-nine-year-old husband was being told he had this condition. Still, the rudest awakening for us was to learn that although medications were available, they did not slow the progression of the disease. Yes, medication could help with symptoms, but the inevitable decline could not be avoided.

I began to learn everything I could about Alzheimer’s by exploring every resource I could find. I read every book I could find on Alzheimer’s, watched documentaries, visited countless websites, attended caregiver training (for professionals and family caregivers), forums, conferences, support groups, workshops, educational symposiums, and various other learning environments.

Every scrap of information helped me cope with a disease that wreaked havoc on life as I knew it. Once Jim and I began the Alzheimer’s Journey nothing was the same.

An Alzheimer’s diagnosis is like any other crushing blow in life. Once I worked through the stages of grieving for what should-have could-have been, I decided that I just didn’t have the personality to give up and say, “Okay, Grim Reaper, you win.” My time was much better spent with living than with dying. After all, we are captive to the human body we inhabit and perfect health is the exception, not the rule.

My plan of action: (1) Learn as much as I could about Alzheimers, (2) Test for any treatable conditions that might cause dementia symptoms, (3) Treat any other health problems to maintain quality of life, (4) Accept the personal responsibility to ensure that Jim received the best care whether he was at home or in long-term care, and (5) Love him for the person he was at that particular time without mourning the loss of the man he had been or worrying too much about the man he would become.

It helps to take one day at a time, or as one caregiver said, “Sometimes I have to take one minute at a time.” Talking to other caregivers kept me from feeling all alone. I learned from their mistakes, and they learned from mine. By supporting each other, we became stronger spiritually, and made much better caregivers. Sometimes, it’s hard to attend a support group meeting, and the group may not have a meeting scheduled when a crisis occurs. Between group meetings, I found it easier to go online and post my questions, frustrations, and fears to a forum.

Alzheimer’s Journey will have a forum where people who have been touched by Alzheimer’s can communicate with each other. It will be a virtual support group. You will be able to view the forum without joining. If you want to join in the conversation or want input on a problem, create a user name and register.

Alzheimer’s Journey will be an Alzheimer’s resource with articles, news updates, and a forum. Everything will be in an easy to find format and you won’t have annoying advertisements blocking your view of the screen. I also won’t take you in endless loops trying to build “clicks” to increase advertising revenue. This site is for you, not for profit.

Copyright © September 2011 L. S. Fisher

http://earlyonset.blogspot.com

www.lsfisher.com

Alzheimer’s Action Day – September 21

September 21 was known as World Alzheimer’s Day for many years. This year, September was designated World Alzheimer’s Month and the 21^st took on a new role—Alzheimer’s Action Day.

Alzheimer’s disease is a world problem with 35.6 million affected. It is a national crisis affecting 5.4 million in the U.S. It is an issue in every state—Missouri has 110,000 residents living with Alzheimer’s. Once Alzheimer’s deals us a devastating blow on a personal level, we learn the harsh reality behind the statistics. When Alzheimer’s claims a close friend, a cherished spouse, a beloved parent or grandparent, or sibling, we find ourselves in a battle with a formidable enemy.

In this country, more than 15 million caregivers provide comfort for loved ones who have Alzheimer’s disease. Few family caregivers have professional training. Most learn by doing the job with a loving heart, compassion, and forbearance.

A primary caregiver doesn’t sacrifice a few hours here and there. Caregiving is a day in, day out job. The duties go on, and on, and on. Just when the caregiver thinks he or she has a handle on the situation, something will change. Or the solution for a problem yesterday, might work again today, and tomorrow it may make things worse instead of better.

No one ever said life was easy, but most of you don’t expect life to be a constant uphill battle without any rest. Life shouldn’t be a tug of war where you are in danger of being dragged into the mud pit no matter how deep you dig in our heels or how hard you try.

Caregiving can seem to be a thankless job. Sometimes the people you expect to support you, instead let you down. They may wish you good luck—but want to be left out of it.

Probably, one of the most difficult aspects of being a caregiver is to realize that not everyone is cut out to be one. Caregiving is only for the strong at heart, and it sure isn’t for sissies. You can’t shame or “guilt” someone into being a caregiver. Anyone who provides care grudgingly will do a lousy job of it.

It is best to let those who can’t go the caregiver route help in other ways. So maybe your brother can’t help mom with her bath, but what if he will mow the grass instead? Maybe your sister can’t tolerate your dad’s repetitive questions, but if she loves to cook, maybe she can provide dinner a few nights a week. Let people help at the levels they can. Accept any offers of help that come your way! Never, ever turn anyone down and have a list ready for those who really want to help, but don’t know what you need. It won’t take long to separate the sincere offers from vague platitudes.

Why do caregivers hang in there day after day? Is it out of a sense of duty? Sometimes. Is it because caregivers love being martyrs? Not often. The most common reason is love for the person with dementia—and to keep him or her as productive, happy, and physically healthy for as long as possible.

Whether you are a caregiver, or play a supporting role, have you thought about what you will do Wednesday to raise awareness? At the Alzheimer’s Action Summit last spring, we brainstormed some ideas to create awareness, so I’ve had some time to think about it.

At the beginning of September, I changed my Facebook photo to the "End Alz" icon. I will be on a local radio station (KSIS) at 9:30 Wednesday morning to talk about the human and economic cost of Alzheimer’s. In the afternoon I’ll be at Sedalia Book and Toy for a signing of my four Alzheimer’s Books. In honor of “Go Purple Day,” I’ll be giving a discount for anyone wearing purple. All my royalties will be donated to the Alzheimer’s Association Mid-Missouri Chapter.

On September 21, I hope you wear purple to show you are in the battle against Alzheimer’s. The bigger the army, the better our chances are of someday living in a world without Alzheimer’s.

Copyright © September 2011

http://earlyonset.blogspot.com 

Voices, Pain, and Hope

 “Hey, Sheila, just touching base,” my call had gone to voice mail, as I pulled out onto the highway early Saturday morning on my way to the Walk to End Alzheimer’s. “It’s a beautiful day and I don’t think it is going to r-a-i-n.” I spelled the word rather than say it aloud. All week the forecast had been for a beautiful day, and two days ago, it changed to a 40 percent chance of rain.

At the fairgrounds, Bobby and Kim had arrived with tables and chairs. Since this was my thirteenth walk and their first, I showed them where we needed tables. A year’s worth of planning has gone into making this day special for the people who know the pain this disease leaves in its wake.

Banners flew high, balloons were delivered, and my books lay on the table ready to sign. As I signed books, I heard their stories.

“I used to walk for Jimmy,” my husband’s cousin Shirley told me. “Now, I walk for my mom too. She doesn’t know me anymore.” I heard sorrow in her voice and saw pain in her eyes.

“I just lost my husband,” an elderly lady said as I signed her book. “He had Alzheimer’s.” Her family was one of our new teams.

“I’m so sorry,” I said. Our eyes met and we connected—person to person, woman to woman, widow to widow. We shared through silent communication the knowledge of watching a loved one change, and oh, so slowly, fade away.

“You are Lynne’s sister,” I said as I looked up and saw a woman holding a small dog in her arms. Lynne, my friend, had early-onset Alzheimer’s. “I wrote about her on my blog, but it will be in next year’s book.”

The stories lay on my heart. I heard about grandparents, sisters, brothers, uncles, spouses, friends, co-workers… Voices shared special memories and snippets of lives lost to a disease whose only survivors are family members like those standing in front of me.

Oddly, enough, the day was festive. The sorrow pushed aside as we do what we can—support the Alzheimer’s Association and wear our purple to create awareness that Alzheimer’s is a formidable enemy and we are going into battle. The music was upbeat and the teams lined up to begin the walk.

Sheila and I carried the banner through the arbor and as we headed out onto the fairgrounds, her son Phillip took over for her, and Phillip and I led everyone onto the route. We passed signs with Alzheimer’s information: Every 69 seconds a person develops Alzheimer’s. How many minutes does this walk take?

As we looped past the midway area of the fairgrounds, Phillip said, “People are just now coming out.” He was right. This had to be a record-breaking crowd.

A few people passed us up. My nieces Taylor and Alex decided they wanted to run and moved ahead of us. Everyone was greeted with applause and “Chariots of Fire” music at the finish line.

While we were gone, numbers were tallied. Sheila announced that we had more than 350 walkers and raised more than $23,000, surpassing all our goals.

We gathered in a grassy area to release the balloons. Sheila brought began a countdown. Purple balloons sailed toward heaven with names, messages, and prayers written on them. Through my own tear-blurred eyes, I noticed a young couple holding each other tight as they both cried.

Through the pain, I heard whispers of hope. We want this cruel disease to end. This vicious cycle of disease, loss, and certain death needs to be stopped. We are families and friends of 5.4 million Davids fighting a formidable giant.

The walk ended, goodbye hugs shared, the cleanup finished, and we went our separate ways. On the drive home, I felt like pinching myself. Was the day really over and as successful as I thought, or was I just dreaming again?

My elation with the success of the day, so perfect, was replaced with other more sobering thoughts. I couldn’t call my friend Ted to tell him the great news. His numbers are still programmed into my cell phone, but he is gone. The stress of caring for a loved one with Alzheimer’s can be deadly for the primary caregiver.

For a crushing moment, I’m overwhelmed with a vivid image of Jim and painful loss. Then my phone rang and brought me back to the present. Life goes on, and I have much, much more work to do. This battle isn’t over yet!

As I unloaded my car, I heard the distant rumble of thunder. Droplets felt cool on my skin and refreshing to my spirit. It was a perfect time for r-a-i-n to begin a new cycle of life.

Copyright © September 2011

http://earlyonset.blogspot.com
Photo courtesy of Randy Kirby, Sedalia MO

Sedalia Walk Exceeds Goals!

Follow the link below to hear my interview with KMZU radio. I'm sure they only aired a small segment of the interview. You will notice I used the word "awesome" several times, but then it WAS awesome!

Just follow the link and click on my name to hear the interview: http://www.kmzu.com/2011/09/walk-to-end-alzheimers-surpasses-goal/

Sedalia, MO: Organizers prepare for Saturday's Walk to End Alzheimer's |

Organizers prepare for Saturday's 'Walk to End Alzheimer's' | fisher, linda, organizers - Sedalia Democrat

The Power of Purple! The End of Alzheimer’s Starts With Me—and You!

Aren’t we all getting tired of the years that have passed without finding the elusive cure for Alzheimer’s? It is time to take up the banner and proclaim we want to end Alzheimer’s NOW.

Alzheimer’s has no cure or prevention and according to the CDC nearly 75,000 die each year from the disease. More than five million people in the U.S. have Alzheimer’s, and worldwide 35 million have the disease. Alzheimer’s Disease International estimates that 115 million people worldwide will have Alzheimer’s by 2050.

At one time, I knew nothing about Alzheimer’s and certainly didn’t think it affected anyone but the elderly. When the doctor told my 49-year-old husband he had dementia, most likely Alzheimer’s, my first reaction was, “They have medication for that now, don’t they?”

After our ten-year journey, I learned many harsh truths about Alzheimer’s. I know that I don’t want to have the disease, not now, not ever. I want to always recognize the people I love and continue to enjoy the talents and skills I’ve accumulated during my lifetime.

I don’t want anyone in my family to develop Alzheimer’s. I love visiting with my mom and discussing practical and philosophical matters with her—trivial details, or sweeping generalities. If she were to develop dementia, I would miss that important relationship. Not only do I wish that no one close to me has Alzheimer’s, I wouldn’t wish it on my worst enemy.

September is World Alzheimer’s Month and a perfect time to continue your support of the Alzheimer’s mission if, like me, you are a longtime volunteer. It is also an opportune time for newbies to learn about Alzheimer’s and become advocates.

Those of us who know Alzheimer’s from personal experience can show our support of this special month by wearing purple. After looking up information about purple, I believe it is a great choice for the fight against Alzheimer’s.

The color purple symbolizes mystery, and Alzheimer’s is indeed a mysterious disease. Researchers have learned much about the disease, but cannot solve the mystery of how to cure or prevent the disease. Purple represents magic, and we are ready for that magical moment when we live in a world without Alzheimer’s.

Purple is a combination of red (the warmest color) and blue (the coolest color). The color spectrum extremes could be compared to the emotional turmoil Alzheimer’s takes on the family of a person with Alzheimer’s.

It is only the second day of the month and I’ve polished my nails with an X-treme shade of purple. That way I’m sure that I’m wearing purple every day of World Alzheimer’s Month.

For many years, the 21st day of September was known as World Alzheimer’s Day, but since we now have an entire month, this day is known as Alzheimer’s Action Day. I have already changed my Facebook icon to END ALZ and encouraging everyone to do the same if they are ready to take the power of purple to the X-treme.

Why don’t we really make September 21 an action day? When you put on purple that day, take a few minutes to call your senator and representative to let them know Alzheimer’s research is a priority for you. Alzheimer’s research has always been underfunded and in this time of budgetary crisis, the belt may be tightened to the point of drying up Alzheimer’s research funding.

It will take millions of advocates to convince our legislators that Alzheimer’s isn’t going to go away on its own. The cost of Alzheimer’s disease is staggering. It is an expensive disease and a devastating disease for individuals with Alzheimer’s and for their families.

September 21 is Go Purple day! Wear your purple and share your personal story. The End of Alzheimer’s Starts With Me—And You. Individually, and collectively, we can take the POWER of PURPLE to a whole new level.

Copyright September 2011, L. S. Fisher

http://earlyonset.blogspot.com