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/

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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

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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

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The Friendship Connection

When Whitney and her friend Mariah donned their balloon hat, it reminded me of how we are connected to our friends. Don the Balloon man’s hat-for-two gave the friends a different kind of connection at our Sedalia Memory Walk this year.

Friendship connections have evolved since my friend Sharon and I wrote notes in study hall. To keep our words private, we wrote them backwards and held them up to a mirror to read them. Now people email, text, Twitter, or use Facebook. Many of us have cell phones with nationwide plans and think nothing of calling someone across country to chat for a few minutes.

Not too long ago, I was riding with my daughter-in-law and my grandkids were texting each other—and they were both in the backseat. Of course, one advantage of text messaging is that siblings can have a disagreement without getting the parents involved.

I finally caved to the pressure and opened a Facebook account. It is a good way to stay updated on what is going on in my friends’ lives. I’m sure all friends on Facebook are not necessarily friends in the true sense of the word. Many of these “friends” are only casual acquaintances. A person is not a friend unless we care about what happens to them, we keep their confidences, and we overlook their faults. We support our friends and celebrate their successes without a twinge of envy.

When we meet people, we feel an immediate connection with some but not others. Our friends aren’t necessarily mirror images of ourselves. Sometimes we are drawn to others because they have a trait or skill we lack but admire.

I have been blessed with many friends. My involvement in my business women’s group, writers’ guild, work, and the Alzheimer’s Association brings me into contact with a lot of talented people. A combined effort to support a cause forges a lot of other personal differences to create a bond.

The Memory Walk took months of planning, organization, leg work and fortitude. My sister-in-law, Ginger Dollinger, and team coordinator, Sheila Ream, logged countless hours of preparation. All this effort birthed a fun Memory Walk with music, balloons, face painting, raffles, prizes, and a cake walk.

Friends pitch in and help you when you need it. That’s what Connie Pope did when she saw we needed help at Memory Walk. Cindy stopped to visit while I signed books, casually bagged them and handed them out with a smile. Brenda called to let me know she couldn’t be at the walk because she felt she needed to stay with her gravely ill husband. Sheila gave me a comforting hug as we released our balloons at the end of the walk. These are just a few of the contacts I made with friends at one event.

My favorite part of Memory Walk is spending a few hours with family and friends—hugs, smiles, and a lifting of spirits as we connect with each other. Weeks, months, and years disappear when I greet a friend after a separation.

We don’t need a balloon hat to physically connect us to our friends. A real friendship connection is not diminished by miles and time. It has no boundaries or limits and lives deep within our hearts.

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If I make it through September!

My life has turned into a NASCAR speedway and sometimes I feel like I’m driving a tricycle. It leaves me in danger of being pancaked by the big boys.

I’m not sure how it got to be September already. What happened to summer? Please don’t tell me I Rip Van Winkled right past it. Considering my sleep deprivation, that doesn’t seem logical. Somehow I survived the summer without once shinnying into a swimsuit, visiting a beach, suffering heat stroke at Silver Dollar City (so much for season tickets!) or for that matter, turning lobster-red from a sunburn. What a waste of summer months, and uh-huh-oh summer nights.

I thought Halloween was supposed to be scary, but it doesn’t come close to the feeling I had in the pit of my stomach when I flipped the calendar page and saw all the scribble marks. Here I am on Labor Day weekend, laboring, trying to catch up to all the events that are now staring me in the face.

Today started with a radio program “Open Mike” where Chris and I talked about Alzheimer’s and our September 19 Memory Walk. Then, I stopped off at the office to use high speed Internet and my duo screens to send emails and media releases for two different organizations. After four hours, I made a small dent in my calendar to-do list.

I only have fourteen “events” written on my calendar, so shouldn’t that mean I have more free time than scheduled time? That might be true if they were events where I just had to show up, but it doesn’t work that way for those of us on the planning committee or in charge. Oh, and let’s not forget the 101 items that didn’t make the official calendar. That would be those things I intend to do if I have time.

One of the best things about hectic life is I never have time to be bored, or even think about being bored. My goal on Wellsphere is to take a thirty-minute stress break five times a week. That doesn’t seem like too lofty a goal until I actually went through the stress of trying to find a spare thirty minutes.

In the meantime, I’ll just keep peddling until I make it through September, and then, I can relax awhile. After all, I have two free weekends in October. Yes, if I make it through September, I’ll be fine.

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The Alzheimer’s Project

When Jim was first diagnosed with dementia of the Alzheimer’s type, I knew nothing about the disease. One day shortly after Jim’s diagnosis, I watched an HBO special on Early Onset Alzheimer’s. The show followed a brother and sister with the genetic form of Alzheimer’s. The sister was in the end stages, and the brother was beginning to need help dressing himself. I remember the gnawing feeling in the pit of my stomach when his wife fastened his belt. As the sister lay dying, the younger generation, a boy and girl in their teens, talked about their fifty-fifty chance of developing early onset Alzheimer’s. That show was a crash course on the relentless disease and how it affects the entire family.

With families of 5.3 million Americans traveling the Alzheimer’s journey, HBO has developed a documentary called “The Alzheimer’s Project.” HBO opened their airways to non-subscribers to make this program available to the general public. Anyone with Internet access can watch the programs on the Alzheimer’s Association website at http://www.alz.org/.

Many reviews have been written about “The Alzheimer’s Project” and this is not going to be one of them. I’m only going to talk about my reaction to the series.

I did well on Part I, “The Memory Loss Tapes,” until the death scene. Too many things about that scene brought back the emotional tumult of Jim’s death. As I watched the family’s faces, I remembered the inner struggle to face the reality of our journey’s end.

My first reaction was HBO should not have shown that scene. My friend, Ted, whose wife is in the final stages of the disease called me to make sure I knew about the series. He said, “They are telling it like it is.” I had to admit he was correct.

I imagine not everyone at HBO was in agreement about showing the death scene. I had the same internal struggle about including the final story in Alzheimer’s Anthology of Unconditional Love. I was afraid “The Aftermath” would be too depressing, but something compelled me to share Jim’s death and my reaction. Caregivers and people with Alzheimer’s have enough to deal with to make it through the day-in-day-out struggle with dementia. Did I want to let them know that the death of their loved one is the final insult? That was the moment I realized that no matter how much I had done, the disease won.

Part II, “Grandpa Do You Know Who I Am” shows how young people see the disease. I think about how my grandchildren never knew what Jim was like before dementia. Their image, like some of the children in the film, is of a different person whose brain has been destroyed by disease.

The “Caregivers” is helpful with its real live experiences, and we plan on showing this film at our support group. Knowledge is power and the more we know about the disease, the better caregivers we are. Jim had aphasia early in the disease and wasn’t able to tell me what he was thinking or how he felt. I was blessed by becoming friends with people with Alzheimer’s who retained their communication skills. I learned so much about how a person with Alzheimer’s feels from my friends with the disease. I truly appreciate their insights, fears, and hopes.

“Momentum in Science,” both parts, assures me that progress is being made toward diagnosing and understanding Alzheimer’s affect on the brain. One of the researchers featured in the film, Randy Bateman, MD, from Washington University, accompanied our Missouri Delegation on legislative visits at the Public Policy Forum in 2008. I was impressed with his down-to-earth manner.

The early HBO series helped me understand Alzheimer’s, but the Alzheimer’s Project has a much wider scope with its marriage of personal stories and the hope of scientific breakthrough. Unless science moves forward and finds a cure for Alzheimer’s and related dementias, death is the conclusion of the disease. I look forward to the day when we have Alzheimer's survivors walk a victory lap at Memory Walk. Until then, the only survivors of Alzheimer’s are the caregivers and families.

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The Days are Getting Shorter!

Today, slate skies are gushing rain onto Mid-Missouri. Ike is pushing inward and brings more of the same for next few days. The NOAH weather station on my weather alert radio spews out county after county with flash flood and tornado warnings. The days are getting shorter, and not just because autumn is nigh.

My days seem shorter because I’ve got more to do than time to do it. When I look around at other people, I see the same scenario played over and over. Life is hectic and the days aren’t long enough.

I work four ten-hour days each week. My “Day Off” To-Do List is jam packed with items. Some days, I barely scratch the surface. Weekends fly by and my list gets longer yet. My calendar for this month has events for every weekend—sometimes for Friday night, Saturday, and Sunday. This is a month with two family reunions, Memory Walk, writing, speaking engagements, radio/TV interviews, the BPW Chicken Dinner, writers’ guild, support group, fundraising for three different groups, and more. Whew! No wonder the days seem too short.

The dreary weather depresses me and makes me anxious. Our Memory Walk is next weekend and I pray for sunny skies. So much needs to be done before the walk and the morning of the walk. I have nightmares about downpours and no walkers. We will not cancel the walk for rain, but rain changes the entire dynamics of the event.

I may grouse about the constant rain, but I’m not complaining about the short days. The big advantage is that while the days are too short, they are full and fulfilling. Would I trade my short busy days for long leisurely ones? No, BUT I might be willing to swap some of them. A little down time seems like a dream come true. I would like to read a book, watch TV, and eat chocolate bonbons. I would be especially interested in a week on a tropical island—without a hurricane.

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Double Booked

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

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

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

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

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

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

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

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

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From Memory Walk to Memory Talk

“I want to go to the Memory Walk because I’m having trouble with my memory,” Jim said. He had spotted a small ad about the upcoming walk in the Sedalia Democrat. I hadn’t mentioned the walk but had already registered and raised $400. I thought Jim wouldn’t want to go because it was for Alzheimer’s.

When the doctor told Jim he had probable Alzheimer’s, Jim’s reaction was, “I guarantee you, I do NOT have THAT!” I didn’t want to believe it either, but what began as memory glitches had developed into gaping deficits. By Memory Walk time, Jim was on Aricept, but it made him sick and he resented taking an Alzheimer’s drug.

We arrived at Liberty Park, expecting a crowd of walkers. We joined Helen and Chuck from Slater, Penny and Joetta from the Mid-Missouri Chapter, and Penny’s German shepherd, Vicky, beneath the small shelter.

Helen, an energetic, vivacious 70ish woman had organized the walk because the Association couldn’t find anyone in Sedalia to do it. She toted a hunter’s horn, and was raring to go.

We received tee-shirts, sweatshirts, caps, cups, and water bottles. I donned my purple tee-shirt, but Jim insisted on wearing his cowboy hat and denim shirt. We waited. Walk time arrived, and no one else showed up.

Our small group headed toward the downtown area. Helen blew her horn, and we collected donations from the few people we met on the street and most of the downtown businesses. It was hot, and Jim began to sweat, but he was a real trouper and wanted to continue the walk. Helen swooped into the VFW Hall on Ohio Street. The veterans asked her to blow her hunter’s horn, and the sound bugled throughout the building.

Jim collected the largest donation of the day from Wilken’s Music Store, where he was a regular customer. He was excited about people giving us contributions and with no concept of the value of money, pocket change was just as exciting to him as ten-dollar bills. In all, the Sedalia Walk earned about $600 that year

The Mid-Missouri Chapter asked me to organize the 1999 walk. I had never been involved in community service, and this was a giant step for me. The Sedalia Memory Walks were successful initially due to family support. Eventually the walk was embraced by our entire community. My passion carried me through five years as coordinator. Our six walkers mushroomed into 444 walkers who contributed $36,000.

The decision to become the Memory Walk Coordinator changed my life. Throughout Jim’s illness, being an Alzheimer’s Association volunteer gave me a sense of purpose and became my lifeline. The Mid-Missouri Chapter staff and Board gave me a Kleenex to dry my eyes and inspired me on my life’s greatest mission. Over the past ten years, I’ve been a primary caregiver, a support group facilitator, an Alzheimer’s Board Member and Assembly Delegate, a spokesperson, and active advocate for people with Alzheimer’s and their families.

I’m not telling you these things so you will think I’m a giving person; I have received so much more than I’ve ever given. Jim developing early onset dementia was my life’s greatest heartbreak, but this tragedy gave birth to my greatest blessings.

Being an Alzheimer’s volunteer, I’ve met amazing people, made life-long friends, and had opportunities I never dreamed could be possible. I share my experiences through Memory Talk presentations and book projects. I see sunshine breaking through the giant shadow of Alzheimer’s.

Every journey begins with one step, so make sure your step is in the right direction. May you walk the Memory Walk and talk the Memory Talk to make the world better for the 5.2 million Americans with Alzheimer’s.


*****
To find a Memory Walk near you, call your local Alzheimer’s Association Chapter or visit http://www.alz.org/ and click on your state on the map. You don’t have to be an athlete. Our top fundraiser for years called all her friends and never left her home. If you prefer email, the Alzheimer’s Association’s Kintera makes fundraising easy.

For information on Memory Talk presentations, visit http://www.lsfisher.com/, and click on the Alzheimer's Speaker link. Alzheimer's Anthology of Unconditional Love available at Barnesandnoble.com, Amazon.com, and selected Missouri Barnes and Noble stores.

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