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Tuesday, September 27, 2011

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

Monday, September 19, 2011

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 21st 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 

Monday, September 12, 2011

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/

Saturday, September 3, 2011

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