Friday, December 15, 2017

Kathy Siggins Stamps Out Alzheimer’s

I went to my local post office this week and bought a sheet of Alzheimer’s semipostal stamps. I couldn’t help but brag, “My friend, Kathy Siggins, is the one who got the approval for this stamp. She worked eighteen years to make it happen!”

Often, we claim people as friends when they do something extraordinary—something that makes a mark in history. In this case, I wasn’t exaggerating. I met Sarah Harris, Jane Adams, and Kathy Siggins at the first Alzheimer’s forum I went to in 2001. We forged a lasting and special friendship of the heart. 

And guess what? Kathy was already working on the Alzheimer’s semipostal stamp, and was still working on it at the 2017 forum.

Well, frankly, I didn’t even know what a semipostal stamp was, or why we wanted, much less needed, an Alzheimer’s stamp. Since then, thanks to my friend Kathy, I’ve learned quite a bit about them.

Getting a semipostal stamp approved isn’t easy. As you’ve heard said before…it takes an Act of Congress. The Semipostal Authorization Act grants the U.S. Postal Service authority to sell fundraising stamps to further causes that are in the national interest. They will issue five semipostal stamps over the next ten years, with the Alzheimer’s stamp being the first discretionary semipostal stamp. The second stamp, already approved, is another cause near-and-dear to me: Post Traumatic Stress Disorder semipostal stamp.


Why are these stamps important? Prior semipostal stamps have raised millions of dollars. Congress mandated the first semipostal stamp in history for Breast Cancer Research  which raised $86.7 million and a Save Vanishing Species Semipostal stamp that raised $4.3 million.

The Alzheimer’s stamp costs sixty cents. The additional cost of the stamp will go toward Alzheimer’s research. As Congressman Elijah Cummings said at the dedication, this is a “big deal.”

Kathy Siggins has been busy lately. The stamp was released on November 30 and she was a special guest at the official dedication of the stamp. The Congressman recognized Kathy for her work. “You turned your pain into a passion and to a purpose.” He said it would affect generations yet unborn. He went on to say, “Your name may never appear on the front page of the Washington Post. You may not even make the local gazette… By the way, you may never be famous, but there will be people who will benefit from what you did.”

The Congressman said Kathy was as an example of how “one person who instead of standing on the sidelines of life having a pity party” used her energy to make life better for somebody else.

I’ve followed Kathy’s various events online: award presentations, television interview, dedication parties, and celebrations. She takes it all in stride. Kathy has worked toward this day for so long, I’m sure she is filled with exhilaration.
  
The stamp, thanks to the unwavering efforts of Kathy Siggins, will be on sale for two years. Buy early and often! Let this be the only stamp you buy in the next two years.
Kathy and Sarah (back), Linda and Jane (front) 

Yes, Kathy, you are our Alzheimer’s hero. Speaking for Sarah, Jane, and myself, we
salute you, our sister of the heart, and heap our gratitude and love on you for being the special person you are.

The US Postal Service dedication ceremony: https://www.facebook.com/USPS/videos/10155960281864810/

#AlzheimersStamp

Copyright © December 2017 by L.S. Fisher

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Slaying Dragons

An old story that came to my mind this morning: a man asked his friend with a terminal disease, “How does it feel to know you are dying?” The friend responded, “How do you feel to think you are not?”

How you cope with terminal disease depends on how you feel about battling dragons. You can meet the dragon head on, or you can turn tail and run. Fight or flight. It depends on the kind of person you are.

Alzheimer’s is a big, ugly fire-breathing dragon of a disease. It is a terminal disease that can take a decade or more to reach its ultimate conclusion. That’s entirely too long to be in “dying” mode.

As if having a terminal disease isn’t enough of a problem, people often have more than one potentially fatal condition. Heart disease, diabetes, kidney disease, cancer…the list goes on and on. While you are battling the big dragon, smaller potentially dangerous dragons are coming at you from every side.

In real life, you battle diseases as if you were fighting those mythical dragons, that is, one at a time. Otherwise, it is overwhelming.

When Jim developed other medical problems, we dealt with them as they came. I decided it was best to address each issue as it arrived. My thoughts were to keep him as healthy and mobile as possible.

Alzheimer’s is a disease that affects every person in the family. It may affect them in different ways. One person steps up to be the caregiver—usually a spouse or child. Some may withdraw while others go into overdrive to provide support for the primary caregiver. Then, there’s Mr. or Ms. Know-it-All who doesn’t really want to do anything but tell everyone else how to do it. Yes, the personalities of those involved can be quite challenging.

Ultimately, the biggest choice is whether to give up or go slay the dragon. When you give up, you waste precious time. Chronic illness of any type becomes a dragon that needs to be slain.

If you look at what you still have instead of what you’ve lost, you can begin to enjoy life. Cherish those little moments of joy, and make memories. You don’t want to lose a decade of your life seeing only the doom and gloom of a terminal disease. Become a dragon slayer!  

Copyright © December 2017 by L.S. Fisher
#ENDALZ

Sunday, December 3, 2017

Sights, Sounds, and Traditions of the Holidays

I’m not sure where the year went, but it definitely swooshed by. It’s hard to believe it is Christmastime, even with two trees and a complete army of nutcrackers scattered throughout the house.

Holiday movies threaten to overflow my DVR. They all have a similar theme: a person who loathes the holidays, but magically “gets” what all the fuss is about. A Hallmark movie can turn the Grinch into a Santa’s helper. Life is not a movie, and not everyone has a magical moment each holiday season.

Holiday sights and sounds greet us everywhere we go, beginning earlier and earlier each year. All that holiday joy and ho-ho-hoing can be a bit much for those who are dealing with the unpredictable nature of dementia.

Three important lessons I learned throughout my ten Christmas seasons as a caregiver:
(1) simplify sights, (2) simplify sounds, (3) simplify traditions.

For most of his adult life, Jim was pretty much a Grinch about Christmas. He thought it had become so commercialized that it had lost its meaning.

In some ways, dementia made the holidays a little more tolerable for Jim. In other ways, it only added to his confusion. One year, I was putting framed family photos in a box to clear the shelves for Christmas decorations. Immediately after I cleared the shelves, Jim put the photos back where they had been. That was my first clue that he wasn’t as crazy about the decorations as I was.

More than the decorations, I think it bothered him that I was changing his familiar environment. I learned to simplify the sights of Christmas. The holidays can entirely too bright for a person who is confused. And it just isn’t as much fun for the caregiver to do all the decorating alone and even less fun taking it all down.

Christmas can be a noisy holiday with traditional parties, dinners, and loud holiday music. When you combine dozens of conversations with music and piles of food, you are just asking for trouble. Communicating with a loved one with dementia is an acquired skill. Rapid fire conversation is hard for a person with dementia to follow and can bring about a negative reaction. Simplify the sounds of Christmas. Replace noisy gatherings with soothing traditional music your loved one will remember from his or her childhood.

Simplify traditions by getting rid of the ones you have clung to through a sense of obligation. If you don’t enjoy it, don’t expect your loved one to tolerate it. Do the things that make you happy. If your idea of a good Christmas is a quiet evening at home, then do it. Most of the stress of Christmas is caused by trying to meet the expectations of other people. Those who truly care about you are not going to want to add any more stress in your life.

Simplifying your holiday can bring the joy back to the season. The spirit of Christmas isn’t wrapped up in glittery packages or found in a department store. The spirit of Christmas is a child wrapped in swaddling clothing, placed in a manger. The spirit of Christmas is love, peace, and a light that shines within our hearts and souls.

Copyright © December 2017 by L.S. Fisher
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Sunday, November 26, 2017

Caregiving: Confidence, Doubt, and Little Things

When I was caring for Jim, I showed great confidence. I tracked his medications, I knew his health history, and we communicated on an almost subliminal level. Through classes, seminars, workshops, online training, talking to medical professionals, from the Alzheimer’s website, and support group, I learned everything I possibly could about Alzheimer’s disease.

Knowledge was my weapon against Alzheimer’s. I tracked research and tried to get Jim into promising drug trials. The major roadblock we ran into was that most required participants to be at least 65 years old. When I finally found a trial that didn’t have the age limit, they had a communication requirement. Jim lost his ability to communicate verbally early on in the disease.

Still, I was confident that I could find the best medical attention possible, and when it became necessary, I tried to find a good home for him. Still, I was vigilant, on top of his medical and personal care. I offered my phone number as their hotline number, day or night.

From time to time, doubt overrode my confidence. On dark days, I would wonder if I was up to the challenge. I second-guessed some of my decisions. At times, I felt like a failure. From time to time resentment battled with fortitude. I mentally beat myself up.

Outwardly, I looked competent, but inwardly, I wasn’t so sure that I could keep on keeping on. When things were going wrong, I would wake up with a cloud hanging over me. I never knew if it was going to rain, or I’d get struck by lightning. It seemed that most of the time, the sun would come shining through. Often, nighttime doubts were simply replaced with daytime confidence.

When I took time to breathe, and think rationally, I realized that I was simply a typical caregiver. In support group, I learned that others had the same doubts I worked my way through.

I never intended to be the best caregiver in the world, only the best caregiver I was capable of being. In retrospect, I realize that I expected much more of myself than anyone else did.

When Jim first showed signs of dementia, we lived life as normally as we could for as long as we could. We cherished the good times. You know what I remember most from the nursing home years? I remember the walks in the park, the trips to Dairy Queen, the times Jim laughed, the kids and grandkids visiting him, wheeling him around the parking lot on quiet summer evenings, seeing his eyes light up from time to time.

Yes, I remember the little things. Happy moments ramble through my mind like old photographs capable of bringing smiles or tears, or more often—both.   

Copyright © November 2017 by L.S. Fisher
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Thursday, November 23, 2017

Thankfulness

I woke up this Thanksgiving morning without plans. For many years, Thanksgiving meant going home to the Lake of the Ozarks. That’s where my mom and dad lived. Thanksgiving was the one time of the year that my brothers and sisters and our families gathered together. Since then, our family celebrates “Thanksgiving” in September at various locations, hence no big plans for today.

The memories of those long ago Thanksgivings crowd my mind on this special day. The table groaned with food, but if you wanted mashed potatoes, you had to get in line ahead of Andy and Derrick.

Jim always had his video camera. He “interviewed” everyone and one year shot a video of an impromptu football game. As he showed the video on the TV someone crashed into a small tree. My dad leaned forward in his recliner, pointed at the TV, and boomed in his “unhappy” voice, “Hey, that’s the tree I planted!”

Yes, Thanksgiving holds many happy memories, and a few sad ones. My dad was the one who insisted we all come home for Thanksgiving. “You can spend Christmas with your in-laws, but the only way we’ll all get together is if you come home for Thanksgiving.” The year my dad died, I had Jim stop at the cemetery to visit my dad’s grave so that he could “see” me on Thanksgiving.

It was almost unbearably sad the first Thanksgiving after Jim was in a nursing home. That was a long, lonely drive with my mind crowded with memories of Thanksgiving past. The ten years living with Jim’s dementia were the most challenging of my life. Still, laced throughout that time are many happy memories, loving moments, and tender moments that will always live in my heart.

On this Thanksgiving morning, I browsed my Facebook photos looking for one to share. As I went down through the photos, I realized that I am truly blessed. Photo after photo of events, reunions, friends, family—old photos, new photos, old memories, recent events.

I have been blessed with love—unselfish and unconditional. I’ve been blessed with the best family ever. I’ve been incredibly lucky in love.

My life has taken some detours, but I know I’m in the place right now where I was meant to be. Of course, I have regrets, but overall everything has worked out and most decisions moved me along the path of my destiny.  

I thank God that I’ve been blessed with an optimistic nature. It’s brought me through the bad times and made me realize that life is cyclical—good times are always ahead.  

No matter what I physically do this Thanksgiving, my heart is full of gratitude. I have health, love, and the best family possible. All is well.

Copyright © November 2017 by L.S. Fisher
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Tuesday, November 21, 2017

Free as a Bird

When I took the dog out this morning, a flock of birds swooped in to sit on the limbs of a bare tree. They were chirping and flitting around like it was a spring day instead of a prelude to winter.

What would it be like to be free as a bird? Most of us are trapped in some way. We are trapped by our mental and physical health, our inertia, our finances, our obligations, or other life circumstances.

I thought about Jim, who was ensnared by dementia. The hardest part of him being in a nursing home was knowing that he had lost his freedom through no fault of his own. Jim had always been a free-spirited being.

I paused in remembrance of my brother Donnie who died on this day in 2012. Strokes  trapped him in his body, and he, too, had to spend his last days in a nursing home. Donnie cherished his freedom.

The biggest comfort now is knowing they are both free from the circumstances that trapped them in life. Jim and Donnie left their sorrows and afflictions behind, and they soar on eagle wings, flying higher and freer than any earthly bird.

Copyright © November 2017 by L.S. Fisher

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Monday, November 20, 2017

Heart Song

Ronnie, Leroy, and Jim Fisher
I was out walking my dog and the wind howled through the trees, making my face sting. The temperature hovered at freezing and the wind chill, well, was downright frosty. I cinched my hood on my coat to keep the wind out of my ears, put on my gloves, and shivered.

The wind made me think of a song I’d been attempting to play on my ukulele:  “The Wayward Wind.” In turn, the lyrics made me think of Jim. I don’t know whether he was actually born to wander or whether he acquired “white line fever” throughout his childhood.

Until I met Jim, I never in my life knew anyone who had travelled as much as he did or lived in as many different places. Or in such strange places for that matter: “We lived under that tree” or “We lived under that bridge.” I would have thought he was making it up, but other family members told the same stories.

Jim was happiest when he was on a road trip. I guess it would only naturally follow that when he developed dementia, he was a wanderer. It required constant vigilance to keep track of him. He would be out the door and down the road in a flash. He was restless and relentless in his pursuit of being where he wasn’t.

When Jim’s wandering made him too much of a challenge for his mom, my mom, and the hired caregivers, I had a short experience with adult day care. Jim took his guitar and amused himself by playing and singing—the same song over and over. I suppose the only ones who really appreciated it was the folks with short term memory problems that didn’t remember it was the same song he’d just finished.

Day care only lasted a couple of weeks. The day they had to track him down and found him on the highway, carrying his guitar, and headed toward home, they told me they couldn’t keep him anymore. It didn’t surprise me that even though he’d had enough of that place, he didn’t leave his guitar behind. His love of music remained in his heart long after it slipped his mind.

The past seven days has been hard on the music industry. Della Reese and Mel Tillis died. Sadly, Malcolm Young, AC/DC died from complications of dementia, and David Cassidy, Partridge Family,  who also has dementia, is in critical condition with major organ failure . Famous musicians leave a legacy of songs. No matter how long they are gone, their songs speak to the hearts of their fans.

A song can express heart emotions for us that we cannot express otherwise. Music provides a direct link to our strongest memories. My mother sings a song she refers to as “Jim’s song.” When Jim sang “The Way I Am,” he sang it from his heart. One thing I can say for Jim is that he never pretended to be anything other than what he was.

Jim was happiest when he was playing music with his uncles, or cousins. He often referred to these jam sessions as “picking and grinning.” It didn’t matter to him if he was playing his guitar, a mandolin, a banjo, or a fiddle. If an instrument had strings, he played it.

Jim loved the traditional gospel songs. I will never hear “Lord, Build Me a Cabin in Gloryland” or “Old Country Church” without thinking of Jim. We went to a country music show in Branson where several people played and sang old gospel songs in the lobby prior to the evening’s extravaganza. Jim was already having trouble speaking by then, but he sang every word with them.

Sunday at church, the minister asked us to join him in singing “Jesus Loves Me.” I fought back the tears and sang along. When Jim was having a really bad day and I was trying to get him to sleep, I sometimes sang “Jesus Loves Me” to him because I knew he would remember that song. His lips moved and he mouthed the words soundlessly, and I think he found comfort. It was one of his heart songs, and because of it, he was able to travel in his mind to a simpler time and a place far, far away.

Copyright © November 2017 by L.S. Fisher

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Friday, November 10, 2017

Veterans Day: Invisible Wounds

Veterans Day is November 11, but this year the holiday falls on November 10. At least this year, Americans will think about and honor our Veterans for two days instead of one.

The Capps family did double duty bringing the veteran’s perspective to Morgan County Schools. My brother Tommy, an Army Vietnam veteran spoke at Versailles High School and my nephew Charles, a Navy Iraq veteran, spoke at Stover High School.

The reality of war veterans is that the majority of them are wounded warriors. Some wounds are undeniable because they are visible, like Tommy’s wounds. Others have invisible wounds inflicted by chemicals and other environmental factors. Agent Orange and chemical exposure during other wars can be passed onto descendents, abroad and here at home.

Equally debilitating are the heart and soul wounds that battle within. Twenty-two veterans take their lives each day. I hate to even think how many contemplate suicide or attempt suicide. I know that Jim contemplated it many times.

There is no hard and fast evidence that Jim’s dementia had anything to do with his military service in Vietnam. I do know that he battled depression throughout most of his adult life. I also know that he was exposed to Agent Orange. I know that he suffered from PTSD, including flashbacks. I know that he had two complete mental breaks that required hospitalization. I know that he took medication that had long-term detrimental effects on his health.

Exactly how much Jim’s military service contributed to his dementia may seem to be more intuitive than proven. Although I had no luck convincing the VA that there was a connection, science is beginning to catch up with my conviction.

Several studies on veterans who have PTSD (or PTSS as it is now known) indicate that they are twice as likely to develop dementia. When you consider that 30% of Vietnam veterans and 17% of Iraq and Afghanistan veterans have PTSS, the dementia connection needs to be seriously addressed.

Our veterans deserve more than a pat on the back or a “welcome home” in recognition of their sacrifices for our country. They deserve the best health care for all their visible and invisible wounds. As a nation, we have an obligation to reduce the risk of suicide, dementia, and other health problems with a connection to military service.

Veterans are the folks who laid their lives on the line for the rest of us. Some came home broken and it is high time that the government does everything in its power to make them whole.

Can we ever have war without fatalities and a host of wounded warriors? Will the world ever be at peace?  

Until that utopia, we must take care of our veterans. Every day needs to be Veterans Day.

  

Source: https://www.agingcare.com/articles/veterans-might-have-higher-risk-of-dementia-169916.htm

Copyright © November 2017 by L.S. Fisher
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