The Broken Road

Broken Road - Photo by Jimmy Capps

As another year winds down, I find myself reflecting on the past year, and the years before that, and how I’ve arrived at this time and place. Have you ever stopped to ponder the small events  that shape our entire lives? The positive influences: a chance meeting, an unusual connection, making the right choice, joy, success, birth, and random acts of kindness. Life isn’t all smooth traveling. We have negative forces at work: accidents, disease, heartbreak, betrayal, deceit, failure, and death.

Everything that happens in life shapes who we are. The choices we make determine the quality of our very existence.

This year the broken road has climbed some high peaks and traversed through some deep valleys. I’ve lost loved ones this year. Most recently a cousin to a lingering illness, a niece to an unexpected death, and today my sister-in-law’s mother died from Alzheimer’s disease.

Life is tainted with a special type of sadness when a loved one is afflicted with dementia. Even with our small successes in Alzheimer’s legislation, this awful disease is still without a cure or effective treatment.

Alzheimer’s changed the course of my life. It took away the man I’d shared my life with, changed the color of the sky, and the taste of the air. It left a hole in my universe. Snapped away all my plans and dreams and left me with a different destiny.

It’s hard to believe that Jim died nearly ten years ago. I’m still sorting through a lifetime of mementos, and my heart breaks when I find one of Jim’s favorite shirts, a guitar pick, an old pair of glasses, an outdated drivers license—things that he once touched, used, or cherished. Old pictures memorialize slices of our lives, and stacks of videotapes provide a record of vacations, jam sessions, or a mundane day with a conversation long forgotten. The loss ambushes me from time to time.

But just like others who lost loved ones, I found more strength than I ever suspected lurked within me. Basically, when life crumbles, you have two choices: quit or move on. I like to say that I’m not a quitter so the second choice was a natural one for me. I conquer another piece of the broken road. Life goes on and life can be so good, sweet with many more smiles than tears.   

I had some major life changes this year—retirement, marriage, living in a different home, publishing two books, and watching time blur by and recede into the past. I have much to be thankful for as most of my family keeps on keeping on without missing too many beats.

When I think about life and all the “stuff” I’ve accumulated—toys, possessions, collections—it becomes clear that the important things in life can’t be bought. It is the intangibles that make life worth living: attitude, love, happiness, faith, hope, family, health…

To move forward in life, I can’t keep looking back at what once was, but must anticipate what is yet to be. After all, everything that happened along the broken road is imbedded in my memories, and seeped into my DNA. I’m comfortable with who I am and where I am at this stage of my life.

Today at the post office I saw a former co-worker. In fact, he was picking up the company mail. “Looks like retirement suits you,” he said.

“I love it!” I agreed. There’s something totally liberating about choosing what to do and when to do it. Oh, sure, I still have commitments and appointments that I keep, but most of my day is what I choose it to be.

“What are your plans for today,” Harold often asks me when we first wake up. He is a planner, I’m a seat of the pants type of person.

“I plan to drink this cup of coffee,” I say.

“Then what?”

“Drink another cup.” One thing I know—until I’ve had my coffee, I don’t want to think about the day beyond this moment, much less plan it. Besides, instead of spending time and energy to make plans, I’d rather be moving on down the road toward my destiny.

copyright © Dec 2014 by L.S. Fisher

http://earlyonset.blogspot.com

Some Days Are Sad

I’m an optimistic person and would classify myself as happy—at least most of the time. Yet some days you get an early morning phone call that seems to just make the earth tilt a little different. I got one of those phone calls Friday morning.

I turn my phone’s sound off at night because the whistling, dinging, and notifications interfere with my sleep. Once I discovered the alarm still rang with the sound off, I just automatically turn it off at night. So when I heard the phone buzz, I picked it up trying to figure out why my alarm was silent. It wasn’t the alarm malfunctioning, it was a phone call from my son with bad news.

My forty-seven year old niece Krystal had passed away in the early morning hours. Shocking, unexpected news. Devastating news. The kind of news that can suck the air from your lungs. A cherished family member gone. Just gone. Forever from Earth.

My sorrow at losing a beloved niece cannot even compare to the crushing blow this was for her parents, husband, children, siblings, grandchildren, and those privileged to be in her inner circle. It was a big circle because Krystal had a loving heart and a gentle nature.

Today was her funeral. Three days before Christmas, and what? The hap- happiest time of the year? No. Hundreds of people gathered together to remember Krystal, honor Krystal, and to lay her to rest.

As the photos on the PowerPoint transitioned, we saw Krystal as a little girl, a teen-ager with big hair, in a beautiful white dress on her wedding day, cuddling her baby, with her family, turn around, turn around. Krystal with her little smile, sparkling eyes, and quiet sense of humor. I had watched her grow up in real time and the photos were fast-forwarding through the years.

When most people can’t find time to join one church, Krystal belonged to two. One a traditional Lutheran Church and the other a more modern non-denominational church. Both pastors, one traditional, and the other quite unconventional both spoke of the woman they had grown to depend on and cherish.

After words of comfort and prayers, we queued up with a long line of cars to go to the cemetery for the interment. After the long drive, we huddled beneath umbrellas as the rain began in earnest, shoes sinking into the soft earth. We shared umbrellas, coats, hugs, and sorrow as the rain beat down and we prayed the Lord’s Prayer.

We went inside the church to share a meal and comfort each other. To share the sorrow. As I talked to Mike, he said, “You know what it’s like, Aunt Linda.” I do know what it’s like to lose a beloved spouse. It’s like losing part of yourself. An unfillable void. “There are no words,” he said. I couldn’t agree more.

I know the pain of losing a parent, and the crushing blow of losing a brother. I do not, thank God, know what it is like to lose a child. We all want our children to outlive us. I can’t even imagine the heartache a parent feels at a time like this.

There’s no amount of optimism that can take away the sadness. Even a belief that those who have gone before us are rejoicing in Krystal’s rebirth, she’s not here with us. We sure would have liked to have kept her a whole lot longer.

Some days are just sad, and the rain keeps falling. There are no words.

copyright © 2014 by L.S. Fisher

http://earlyonset.blogspot.com

        

MRI: Aligning Your Molecules

Magnetic Resonance Imaging (MRI, to most of us) is a way to use your own body composition to analyze what’s going on inside you. A strong magnetic field aligns the hydrogen protons in your body and then radio waves knock them out of their aligned position. I’m not ashamed to admit that knowing my molecules are being messed with kind of gives me the heebie-jeebies.

MRIs are a great diagnostic tool and a way to detect cancer or the brain damage from dementia. When Jim had an MRI, they had to sedate him because of his claustrophobia. In fact, during one test, he pushed the panic button, and they took him out of the machine. It was the results of an MRI that let us know that Jim had brain atrophy.

I recently had an MRI to determine the cause of numbness in my fingers and pain in my arm. Based on the data gained from the tests the neurologist ran, the culprit seemed to be in my spine. The best way to look at it—an MRI. Surely, that couldn’t be as bad as needles poked into me at random places.

This was my second MRI. The first was about two years ago. I suffer from occasional bouts of vertigo that causes severe vomiting for the first day or two. I can’t walk without help because I feel like I’m on a ship caught in the middle of a hurricane. I went to the emergency room, where they performed an MRI to rule out a brain tumor. Thankfully, the MRI was negative—or as I described it to my family, “negatory” on the brain.

I don’t remember much about that MRI since I was a little out of it. It was a blur. I did remember the part about not having any metal, so in preparation for the latest MRI, I carefully removed my earrings and my rings before I left home. When I looked at my hands, I noticed my glittery metallic nail polish. Could the polish have enough metal in it to make a difference?  I was unsure, so to be on the safe side, I removed it. The bad thing was the ruby color came off, but I could still see metallic sparkles on my nails. Suddenly, I became obsessed with removing it. I did another round of polish remover, but the sparkles just seemed to shine brighter.

Okay, now what? I have a super-duper nail buffer that will remove anything. The trouble was, I wasn’t sure where to find it. It wasn’t in the tray where I keep my polish and other nail paraphernalia. So the hunt was on. Harold suggested it might be in my travel bag. Sure enough there it was! With a good buffing, all the metallic glitter was gone.

At the hospital I changed into a gown and they got me as comfy as possible on the narrow hard bed as they readied me to slide me in the tube. “What kind of music do you like?” the tech asked me.

“Soft rock,” I replied. They plugged my ears, put a thick cloth over my eyes, and placed the headphones on. They placed a “panic button” in my hand in case I needed to get someone’s attention.

“Would you like a warm blanket?” she asked.

“Sure,” I replied.

After I was all situated, they slid me into the machine and the clanking began. I knew to hold perfectly still because that was important. I forgot to ask how long it was going to take. I thought maybe ten or fifteen minutes. I listened to song after song as the machine clanked and hissed.

Suddenly, I noticed the hair on my head seemed to be moving. Even my eyelashes were being pulled. I thought about freaking out when my cheeks felt like they were being lifted, but I held out pretty well until my nose started itching. It can’t be much longer, I thought, as another song began. Just then, the machine sounded different. Whew, must be winding down. But no, it just seemed to start all over again.

Finally, by the time they pulled me out, I had stopped being hopeful when the machine quieted down. I didn’t realize I was out of the machine until they removed the headphones and took the cloth off my eyes.

“How long did that take?” I asked.

“Oh, about twenty-five or thirty minutes.” Sometimes it’s better if you don’t know how long something is going to last.

And to make matters even better for me, I never read about how my water molecules would be used to create a signal that would be processed to form an image of my innards. The magnetic coils are turned on and off which creates the noise of an MRI. The sound of the machine can be equivalent to a jet engine at take-off, hence the ear protection.

I guess MRI’s are pretty miraculous and it’s a whole lot better than the exploratory surgery they used to do to find out what was going on inside. But still, it’s a pretty weird experience and not one I’d want to do again soon.

Copyright © by L.S. Fisher Dec 2014

http://earlyonset.blogspot.com

Alzheimer’s Advocacy at Work

For many years, I’ve been an Alzheimer’s volunteer and advocate and have attended the annual Advocacy Forum in Washington, D.C. for fourteen consecutive years. Because of my advocacy on the national level, the Greater Missouri Chapter asked me to be an Alzheimer’s Ambassador, to Congresswoman Vicky Hartzler and I gladly accepted.  

Yesterday, I received an email from Harry Johns, Alzheimer’s Association CEO, sharing good news about Alzheimer’s legislation. Congress has incorporated the Alzheimer’s Accountability Act into the Fiscal Year 2015 Omnibus Appropriations Bill. The proposed $25 million increase in Alzheimer’s research demonstrates our legislators’ focus on finding a cure for Alzheimer’s disease.

Why is the Accountability Act so important? It will require the NIH to submit an annual budget to Congress and the President. This budget will specify the necessary funding to reach our goal of finding effective treatment or a cure by 2025.

The Accountability Act has been a top priority for the Alzheimer’s Association and its sister organization, Alzheimer’s Impact Movement (AIM). My sister, Roberta, and I joined 900 other advocates to carry the message to Congress last spring during the Advocacy Forum.

Harry Johns says the bipartisan effort is a significant step toward winning the fight against Alzheimer’s. He said, “It demonstrates that our relentless efforts working together across our nationwide organization—including our dedicated Ambassadors and our hundreds of thousands of advocates—to make ending Alzheimer’s a national priority are making a real difference.”

Alzheimer’s is the most expensive disease in America and the cost will skyrocket as the baby boomers age. In 2014, the cost of Alzheimer’s will reach $214 billion, including $150 billion to Medicare and Medicaid. In contrast to the cost of the disease, only 0.25% of this total is committed to research—our only hope to end this human and financial crisis.

I have been fortunate to help in the effort to increase research funding for a disease that affects more than five million Americans and their families. We are gaining momentum and it is imperative that we relentlessly advocate until this devastating disease is eradicated.

Copyright © December 2014 by L.S. Fisher

http://earlyonset.blogspot.com 

 

Understanding Alzheimer's: Where's My Memory?

Taylor Osman, author of "Where's My Memory"

The far-reaching scope of Alzheimer’s disease is almost impossible to comprehend unless someone close to you develops the disease. Once you have come face to face with this merciless foe, you recognize the signs and symptoms even in complete strangers.

Several years ago I was at an enormous craft festival when I bumped into a middle-aged man who had a lost look in his eyes. In fact, he was lost, and I instantly knew why. Before long, his brother found him. He saw me standing there and said, “My brother has Alzheimer’s.” I just nodded. He knew that I knew.

Knowing and understanding Alzheimer’s doesn’t have a lot to do with age. My grandchildren have always understood the devastation and gaping hole that dementia leaves in its wake. Some of their memories of their Grandpa Jim are hazy. Our youngest grandchild knows his grandpa only from stories and pictures.

When one person has dementia, it touches the entire family. My sister, sister-in-law, nieces, and grand-nieces have been dedicated fundraisers for Alzheimer’s. We hold an annual traffic stop, and we stand in the heat, rain, or whatever Mother Nature throws at us. We smile, wave, and thank passersby as we collect for Jim’s Team.

One of the nieces that helps us fund raise each year is Taylor. Recently, my niece Rachel shared a poem her daughter, Taylor, had written about Alzheimer’s. The poem was originally published in Accolades, the student poetry collection. Taylor gave me permission to share this poem on my blog.

Where’s My Memory?

by Taylor Osman

Who are you?

I look and think.

Where’s my memory?

I should know you, but I don’t.

You’re in my heart, but not my mind.

I see and feel your warmth.

I know you just for a split second.

Wait, the thought is gone.

Who are you?

Where’s my memory?

Why is it like this?

A tear runs down my cheek.

What is this for?

I have to know, but I just don’t.

Remind me again, who are you?

Where’s my memory?

My memory is fading away.

I have it one minute, but then it’s gone.

Where is my memory?

Dedicated to all the people battling Alzheimer’s

So what is it exactly that makes some people understand Alzheimer’s when others never seem to get it? Taylor gives us the key to understanding in the lines, “You’re in my heart, but not my mind. I see and feel your warmth.”

When you understand that the heart will remember what the mind forgets, you realize how important it is to spend quality time with your loved ones who have dementia or Alzheimer’s. Your warmth and hugs express your love even when your loved one does not remember your name, or understand your words.  Those split-second moments of clarity when you open your heart are far too precious to miss.

Copyright (c) December 2014 by L.S. Fisher

http://earlyonset.blogspot.com

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November is Caregivers Month: Caregiving Isn’t for Sissies

November is Caregivers Month, and I thought it was a good time to share my caregiver story.

I was eighteen years old when Jim and I were married in Honolulu, Hawaii. He was on R&R from Vietnam, and I was on Christmas break after two semesters of college.

We struggled financially for many years. Entertainment was hamburgers at Griffs, an occasional drive-in movie, jam sessions, fishing, camping, or traveling in one of our old vans and sleeping at rest areas. We were short on money, but took pride in paying our bills and putting a little aside.

Jim was always there for me. He was my strength, my companion, and my best friend. Jim had bouts of depression, and I worried about him. Our marriage never wavered; our love for each other was never in doubt.

We finally gained financial security and built our home. Just as we thought life was going to be easier for us, Jim began to have cognitive glitches shortly after he turned forty-nine. His forgetfulness didn’t seem as strange as his loss of mechanical skills. The man who once fixed our van with a piece of baling wire, couldn’t change the oil.

For years, we had gone to bed an hour early and read. It was our quiet time, our time together. Jim lost his ability to read. He became eccentric in the way he dressed, and compulsive about taping every program on TV.

By the time he was diagnosed, I realized the Jim I had loved for twenty-five years was turning into a different person. The man who had always been protective of me and so aware of my needs, began to turn inward. Surely there was a simple explanation—a stroke, a vitamin deficiency, depression. The day the doctor told us that tests results showed Jim had dementia, I asked, “What could cause that?” The answer was shocking: dementia of the Alzheimer’s type.

We knew that whatever happened, we were in this together. We cried for hours as we faced the new reality. We were not satisfied until tests exhausted all other plausible possibilities. Somewhere along the line, I realized that I was going to have to get a grip on the grief and make some sense out of this tragedy.

My first step in the right direction was to learn as much as I could about Alzheimer’s and caregiving. Knowledge became power and helped bolster my confidence. I took caregiving classes, read numerous books, watched documentaries about Alzheimer’s.

I became an Alzheimer’s Association volunteer and advocate—first locally and then nationally. Most people thought I was crazy to take on volunteer work when caregiving took so much of my time. Jim only slept about four hours a night and I spent a lot of my sleepless nights working on Memory Walk, or writing letters to my legislators or to the editor of the local paper. Alzheimer’s made me feel out of control, and being a volunteer gave me a purpose and direction at a time when I desperately needed it.

Jim wandered off constantly and to keep him safe, I put him in a long-term care facility. My caregiving did not end when he went into the facility. I was comfortable bathing Jim, providing his personal care, feeding him, and watching TV with him. We would stop at Dairy Queen, go to the park or just drive around.

Aphasia made Jim silent, but that also meant he was a good listener. Sometimes a sparkle in his eyes let me know that he understood at least part of what I told him.

Jim had more company than anyone else in the facility. Our sons and extended family made sure he had a steady stream of loved ones to check in on him and spend time with him. Throughout the ten years of Jim’s dementia, we learned to cope and adapt to the myriad of changes Jim went through. The one constant that never changed was our unconditional love for Jim.

I lived life in the present without looking back to what he had been because it made me sad. I learned to not think too much about the road ahead or I would worry about what was coming. I could hug him close and kiss him. I could place my head on his chest and hear the irregular beat that was so distinctly Jim’s heart.

Jim left this world in 2005, and I miss him still. I miss the youthful Jim, and even more, I miss the Jim he would have been in old age.

copyright © November 2014 by L.S. Fisher

earlyonset.blogspot.com

  

Salute to Veterans

Today is Veterans Day, formerly known as Armistice Day. In 1919, President Wilson established November 11 as the day to remember our veterans with these words:  “To us in America, the reflections of Armistice Day will be filled with solemn pride in the heroism of those who died in the country’s service and with gratitude for the victory, both because of the thing from which it has freed us and because of the opportunity it has given America to show her sympathy with peace and justice in the councils of the nations…”

In 1968, the Uniform Holiday Bill moved Veterans Day so that it became part of a three-day weekend. But unlike other holidays, the significance of the 11^th hour of the 11^th month was not to be deferred to a three-day weekend. After three years of total confusion, President Ford wisely decided that tradition of this patriotic pride should be returned to its original date. On October 25, 1971, he returned it to November 11 regardless of the day of week.

We dedicate this one day to honor those who served our country. We honor them for their sacrifice.

My dad fought in World War II. He often talked about how soldiers were drafted for “the duration.” What a scary thought that must have been. They were shipped off to war with no idea of when they would come home, or if they would come home. World War II had 297 deaths per day. A total of 405,399 American soldiers died in this war. This entire country was vested in that war. Everyone sacrificed and did their part. People were given rationing stamps for everything from tires to food. Manufacturing of automobiles and home appliances were stopped. And racing fans—all auto racing was banned, including the Indianapolis 500 for the duration of the war.

Jim Fisher, my brother Tommy, and nine percent of their generation served in Vietnam. Jim served nearly a year, and my brother Tommy came home after three months when he was wounded.

Jim’s wounds were harder to see. He was wounded in spirit and had an untreated cervical spine injury. A total of 2,709,918 were sent to Vietnam and 58,202 died. Sixty-one percent of them  were twenty-one years old or younger. Five of them were sixteen years old.

Unlike previous World War veterans, Vietnam veterans did not see a hero’s homecoming. They came back individually. Some were lovingly met by family members, others came home to be spit on and called “baby killers.” Jim never forgave “Hanoi Jane” and was thoroughly disgusted with Hollywood’s portrayal of “crazed” Vietnam veteran killers in TV shows  and movies. He suffered from PTSD, and I can’t help but wonder what part the aftermath of Vietnam played in his early-onset dementia.

Many Americans reap the benefits of our country without personal sacrifice, and it seems that disparaging our government has become the norm. We whine about how awful things have become and borrow trouble on a daily basis. We have split this country along party lines rather than being united in the common good. We’re too busy placing blame for what goes wrong and taking credit for what goes right. We salute the flag with our hands over our hearts, but too many hearts don’t believe in the United States of America. We take freedom for granted, and by doing so, we are figuratively slapping our veterans’ faces.

Today, November 11, is a day to not only honor our veterans, but also to truly appreciate them. Going to war to preserve our freedom to complain, whine, and gripe is not a small feat. It involves sacrifice, dedication, bravery, and often leaves scars externally and/or internally.

Today would be a good time to count blessings and be thankful for the freedom we have here in the United States. It is an opportunity to be grateful, truly grateful. Veterans Day is one day to find every veteran you know and say, “Thank you for your service.”

copyright © November 2014

http://earlyonset.blogspot.com

Fright Night—What Spooks Us?

The ghosts and goblins of All Hallows’ Eve are lurking in the dark ready to jump out from behind that old dead tree to send shivers of fright down our spines. Since we associate Halloween with scary beings that go bump in the night, it is a good time to talk about what frightens us.

The scene is set for me to talk about the things that scare us. As I sit in my office working on this article, the wind howls around the corner of the house and branches scrape against the window. In fact, the unusual sounds are downright creepy.

Although some of the surveys show slightly different results, I’m going to hone in on ten common fears.

Things that go BOOM in the night.  A lot of folks are scared of storms. Thunder and lightning can shake up the best of us. Throw in a tornado warning complete with a heart-stopping siren, and you can create panic. I used to be terrified of storms, but somewhere along the line, I just learned to respect them and find a safe spot if possible.

Dark and spooky nights. No wonder the cliché for the beginning of a story is “It was a dark and stormy night.” Two fears rolled into one. The dark is the most common fear of children. I think that’s because when its dark, you can’t see the monsters in the closet. And you can’t go trick or treating until after dark…

Creepy Crawlers. Let’s face it. Spiders are mean little critters that can give you the kiss of death before you can say “Granddaddy Longlegs.” They all scare me…black widows, tarantulas, or brown recluse…and the only good spider is one that I see first because it will become a ghost spider.

Slithering Sneaky Snakes.  I never saw a snake that I liked. A few weeks ago, I was at a wedding rehearsal dinner where Sedalia’s own “Snake Lady” dressed up as a witch and brought one of her pet snakes in a caldron. Fortunately, I was sitting at the back of the room. Needless to say, I wasn’t one of the people who let the snake slither around my arms.

Crash and burn.  If you are afraid of flying, you have lots of company. As many as twenty-five million people are nervous flyers. I don’t think they are so much afraid of flying as they are crashing.

Hitchcock’s Vertigo. I have a love/hate relationship with heights. I love looking at scenery far below, but I can freak out if I get too close to a canyon. The spinning sensation makes me feel that I’m just going to topple over the edge, plunging to my death far below.

Hell Hounds. I’ve never really been scared of dogs in general, but I’ve had a couple of close encounters. One time I was handing out some literature door-to-door for a local organization. At one house, I knocked, but no one was home. As I started back to the car, a German shepherd wedged himself between me and the car. I talked really nice to the dog as I slowly backed around him, never turning my back. “Nice doggy. Aren’t you a pretty boy? Are you having a good day, little doggie?”

Coffin Claustrophobia. Nobody likes to feel like they are in a tight spot where the air is hard to breathe. I’ve known fearless men who would climb a high wire or chase storms, but put them on an elevator and their knees began to knock.

Evil Drilling Dentist. Some people treat the dentist like he’s Dr. Frankenstein and they expect him to drill right through a tooth and into the brain while laughing manically.

Mice and Rats. Yep. Rats are pretty scary if they wind up in bed with you. That happened to me while staying at a very nice resort in Mexico. Not one of my more restful nights. But still, better a rat touching my hair than a ghost.

 
I don’t know why, but ghosts didn’t make the list. I’ve had a few experiences in my life that would be classified as supernatural. I’ll save those stories for another time. In the meantime, I’ll wish you a spooky, spine-chilling Halloween.

copyright © by L.S. Fisher, October 2014

https://earlyonset.blogspot.com

Depends on Your Perspective

Often, what we get out of life depends on how we look at things. These last few weeks of rain began to get on my nerves. The grass is growing and the tree that came down in the storm needs to be hauled off. Except the yard is soggy from all the rain, so it all has to wait. This both gets on my nerves, and also is simultaneously a relief. I can use the time to work on my projects.

While I shivered in the blustery wind and cold rain as I took the dog out for her morning constitutional, I couldn’t see much good in the weather. I turned on my computer and my brother Tommy had posted: “Been shelling chestnuts this morning, now in the lanai enjoying the cool air and a hot cup of coffee.”  The accompanying photo was peaceful, beautiful, and gave me a new perspective of the incessant rain.

I drove through town yesterday and saw that gas had dropped to $2.83. All of a sudden, I noticed my tank was half empty. As I pumped the gas, I realized that when gas was reaching new highs, I’d have considered my tank half full and would have passed up the gas station. It’s all in how you look at things.

When I drove into Walmart’s parking lot, I noticed my car thermometer showed sixty-six degrees. The sun was shining brightly so I left my jacket in the car. As I walked toward the door, I noticed a cold breeze and pulled my thin sweater a little closer. I noticed that people’s different perspectives of this autumn day varied from a woman wearing a winter coat to a man clad T-shirt and shorts pushing a cart. They all seemed more comfortable than I did considering that I was dressed more appropriately for the weather than either of them.

Perspective affects our big decisions in life as well as how we react to the small moments that make up our day. As we plug along from day to day, we can lose sight of the possibility that the rug can figuratively be pulled out from beneath our feet and we fall flat on our keister. What happens then depends on us. We can sit on the floor and cry from the pain, or we can stand up and keep moving forward.

We’ve all seen it, haven’t we? Those amazing people who choose to refuse to stay down, but instead continue to live life to the fullest. When life looks the bleakest, they focus on the thin ray of sunshine that breaks through the gloomy haze.

As my niece, Angie, explained it: clarity. From the moment, she found out that she had colon cancer, she knew she was terminal. Taking what time she had left, she experienced her dream wedding and spent quality time with her family, sharing her radiant smile, love, and hugs.

She shared her thoughts, hopes, happiness, on Facebook. On November 23, 2012, she wrote:  I think we all know what I’m thankful for. I’m thankful I’m still alive. Alive, to love my family. Another day to see Reiana smile, hear Madison’s laugh and see Connor’s beautiful eyes. And most of all to hear my hubby tell what “he thinks” are funny jokes. BTW, God, thank you for bringing my brother back to me. Occasionally, she spoke of her regrets, sorrow, and fears, but by far her words reflected her positive perspective on life. She died on December 11, 2012 a short time after her thirty-ninth birthday.

Alzheimer’s is another disease that can challenge a positive attitude. It is a disease without a cure or effective treatment and the only prognosis is death. Upon diagnosis, death isn’t normally immanent, which makes it more difficult to see the urgency of seizing each moment of joy. The care partner may be facing ten to twenty years of watching a disease rob a loved one of his or her memory, communication ability, skills, and talents. Yet, if you consider the expanse of time, it would be foolish to allow this disease to steal your happiness.

When Jim was in the early stages of dementia we were able to travel, spend time with family and friends. We shared many happy moments and good times. It was a bleak diagnosis, but life went on for ten more years. Even during the final stages, I loaded Jim into the van for trips to Dairy Queen or to take a walk in the park. When he couldn’t walk anymore, I wheeled him around the nursing home or parking lot.

How much you get out of life depends on how you look at it. Most of us don’t know how much time we have so we assume we have plenty. Enough that we can spend hours, days, years, or decades without a thought as to how much time we allow ourselves to sit on our keister and cry about the unfairness of it all.

Maybe the best thing we could do for ourselves is to consider how differently we would live if we knew we only had a short time left. Ask yourself: Who would I want to see? What would I want to do? How would I want to be remembered? Would that change my perspective?

copyright © October 2014 by L.S. Fisher

earlyonset.blogspot.com

A Visit with Vicky

Each year when I visit Washington, D.C., to advocate for Alzheimer’s funding, I take my current blog book. This year I left copies of Garden of Hope with legislators. I leave these books with the thought that someone might read it—often a legislative aide—but seldom believe that the representative or senator will read the book.

I am an Alzheimer’s Ambassador for my representative, but due to a scheduling snafu, I did not get to meet personally with Congresswoman Vicky Hartzler. When I arrived at the scheduled time on my sheet, the Congresswoman was already gone. Her aide assured me that Vicky had wanted to meet with me and had waited several minutes past the time on her calendar. So I left the book and my apologies for the misunderstanding.

In early August, I was pleasantly surprised to receive a handwritten note from Congresswoman Hartzler thanking me for leaving her a copy of Garden of Hope. She wrote, “What a wonderful collection of insights into this tragic disease plus messages of hope in our fight to eradicate this debilitating illness.” She ended her note with “Thank you for leading the charge to bring awareness, spur action, and inspire hope.”

Okay, I’ll admit this was a first! I had never received a handwritten note from my representative. Then, another first…A few weeks ago I received a called from a “202” area code—Washington, D.C. When I answered the call, I was speaking to Adreine from Congresswoman Hartzler’s office. Adreine wanted to set up an appointment for the Congresswoman and me to meet for coffee on October 9. We agreed that I would meet her in the lobby of historic Bothwell Hotel and we would have coffee in the hotel’s restaurant, Ivory Grille.

On Thursday afternoon I arrived at Bothwell Hotel to find Vicky sitting in the lobby. We shook hands and she asked if I’d like to go somewhere else since the restaurant was closed for the afternoon. We decided to have our meeting in the lobby instead.

She talked about her morning at State Fair Community College where she spoke at a teen leadership summit. After our visit she was going to visit the Boys and Girls Club.

For the next forty-five minutes, we talked about Alzheimer’s disease and its impact on families. I had brought fact sheets that served to remind us how many Americans know the heartbreak of Alzheimer’s. There it was in purple, black, and white:

·         More than five million Americans have Alzheimer’s

·         Every 67 seconds someone in the U.S. develops Alzheimer’s

·         Alzheimer’s is the sixth leading cause of death in the United States

·         Fifteen million Americans provide unpaid care for a person with Alzheimer’s

·         In 2014 the total cost of Alzheimer’s will be $214 billion—$150 billion to Medicare and Medicaid

·         0.25% of the cost of Alzheimer’s is being spent on research

·         Approximately 500,000 people die each year because they have Alzheimer’s

We talked of the frustration of how a mere 1.7% of the NIH’s budget goes toward Alzheimer’s research. I thanked the Congresswoman for being a co-sponsor of the Alzheimer’s Accountability

Act and for her unwavering support for Alzheimer’s research.

We shared our personal experiences. Talked of nursing homes, caregiving, and recognizing that a person with Alzheimer’s is a person first. Someone to love, and to find joy in his or her moments of clarity or humor.

We ended on a high note. I gave her a handout of what we are doing in Sedalia: Photos of our successful Walk to End Alzheimer’s and information about our local support group facilitated by Betty Hopkins.

Our meeting began with a handshake and ended with a hug. The Congresswoman and I are united in this battle against Alzheimer’s and for a world without it.

Copyright © October 2014 by L.S. Fisher

http://earlyonset.blogspot.com

   

Watch the video of Facts and Figures: https://www.youtube.com/watch?v=waeuks1-3Z4

Clues to What Is Normal: Ten Warning Signs

For the past few days, I’ve been immersed in reading mystery stories for an anthology. A good mystery writer sprinkles clues throughout the entire story and then at the end it all makes sense. Sometimes you slap your head and believe you should have figured it out, and other times, you are completely surprised. It depends on the skill of the storyteller and how attentive you are.

I guess our greatest mystery in life is life itself. It seems that clues pop up every day in our relationships and our health. If we ignore those clues, or just don’t “get it” life can move forward while we are oblivious to what is happening.

Most of us fear the unknown. No matter how dire the diagnosis or prognosis, we realize that we have two choices: give up and be miserable, or live life to the fullest choosing quality over quantity if necessary.

Almost every disease has warning signs—and have you noticed that it is usually ten? Alzheimer’s is one that has narrowed the multitude of clues to a manageable ten. I’ve taken a look at the ten to see what the clues have to tell me.

The number one warning sign of Alzheimer’s is memory loss that disrupts daily life. We all forget things. Last month I showed up at the hair salon for my appointment a few minutes early so I sat down and started reading a magazine. My hairdresser came back from lunch and began to leaf through the appointment book. “Linda, I have your appointment down for tomorrow,” she said. Sure enough, I checked my calendar and there it was, same time, same place, wrong day. That interrupted that day a little for her and me, but it isn’t a warning sign of Alzheimer’s. Occasionally forgetting appointments is normal. Whew!

 The second warning sign is challenges in planning or solving problems. I had a nightmare about this a few nights ago. I dreamed I was taking a test and it used two words in questions that I didn’t recognize. How was I supposed to answer a question if I didn’t understand the words? Well, when I awoke in the middle of the night, I Googled paradigm (pattern) and esoteric (cryptic). The strange thing is that although I couldn’t place the meaning immediately, they made sense when I inserted them into the problems. With Alzheimer’s words and numbers may not make sense which can make solving a problem impossible.

Sign three is difficulty completing familiar tasks. I run into this often when I need a password or user name to pay a bill online. Part of the reason is that to get to the familiar task, I am using a new method. This is normal unless I forget that I need to pay bills.

The fourth sign is confusion with time or place. Since I’m retired, the days and months seem to swirl together. So sometimes I admit to being a little vague about the day of the week. Thank goodness, my granddaughter plays volleyball so monitoring her schedule helps me keep track of the days and the date. Oh, and the place. It really helps to show up at the correct gym.

The fifth sign is understanding visual images and spatial relationships. This includes reading and judging distance, both of which can affect driving. We won’t talk about me getting too close to the curb and scratching my fancy wheels—twice.

Number six: problems with words in speaking or writing. A person with Alzheimer’s might have trouble finding the right word…okay, so we all have that trouble from time to time. Sometimes, I’ll be leafing through my mental dictionary and can’t seem to come up with the correct word to express an idea. My mental Google is offline, the “page cannot be found” or is “not available at this time.” Sometimes it comes to me. Sometimes not. Still, considered to be normal.

The seventh sign is misplacing things and not being able to retrace steps. Let’s just say that I’ve had to call my cell phone everyday this week to locate the darn thing. I can’t remember where I left it. As long as I can remember the number, I’m considering that a normal sign of aging.

Number eight is poor judgment. My judgment is normally pretty good, but sometimes I’ll buy both pair of shoes rather than having to choose. Just saying!

The ninth sign is withdrawal from work or social activities. I withdrew from work permanently when I retired at the beginning of the year. I need to withdraw from a few social activities just because I like to stay at home once in a while. After all, there’s a new season of The Voice to watch.

The tenth sign is changes in mood and personality—becoming fearful, depressed, confused, etc. Okay, I take ownership of being irritable from time to time, but, hey, that falls within normal range.

After reviewing the ten clues, I consider myself to be as normal as I’ve ever been. Life is a challenge for each of us, but as long as we use our strengths to compensate for our weaknesses, we’ll get by. Whatever the clues say is wrong with us, we always have the ability to opt for quality over quantity.

copyright © October 2014 by L.S. Fisher

www.earlyonset.blogspot.com    

Autumn and Alzheimer’s Risk

My mind is gravitating from Summer to Autumn. There are few signs of autumn here in Missouri unless you count Halloween decorations, corn fields, and maple trees. Grass and most trees are hanging on tightly to their summery green hues. Temperatures are still hovering around the 70s and 80s—more indicative of summer than fall. Heck, I even managed to get my worst sunburn of the year yesterday while working in the yard. I wore a swimsuit top (hate the look of an entire suit!) and a pair of shorts. My formerly pale back is now fiery red and hot, hot, hot.

Apparently the autumn equinox in the northern hemisphere, according to Google is either  September 21st, 22nd, or 23rd depending on the source. So, I went with my best source—the Old Farmer’s Almanac, which gives the date and time as September 22 at 10:29 p.m. Eastern Daylight Savings time. That makes me understand the discrepancy between the 22nd and 23rd, but not sure how the 21st fits in.

 When autumn is in its full glory, it is a season hard to beat. Often the retirement years are considered to be the autumn of life. After working at a day job for years, I’m looking forward to coming into full and colorful splendor and living a full, and still, productive life. Most healthy retirees have this same ambition.

Unfortunately, just when we are hitting our stride all those darn pesky diseases try to interfere.

I could easily break my biggest concerns down to a few major illnesses that I wouldn’t want to develop—the Big “C”, heart disease of any kind, or dementia. Our risk of developing any of these diseases increases with age.

Sometimes, it’s just the luck of the draw that determines what our future holds in store. Other times, we are our own worst enemies when it comes to maintaining good health. Most of us fall somewhere in the middle—luck of genotype and health habits. We all know people who smoke their entire lives and never develop lung cancer. Yet, smoking is clearly a risk factor for lung cancer since 80-90 percent of lung cancer is attributed to smoking.

Although we don’t have such numbers to indicate this strong connection between smoking and Alzheimer’s, smoking is considered a “significant” risk for vascular dementia and Alzheimer’s disease.  Those especially at risk are people who smoke heavily between the ages of fifty to sixty.

Smoking is by no means the only culprit to increase our risk of developing Alzheimer’s—at the top of the list is my personal nemesis—obesity and sedentary lifestyle. I continue to battle with weight issues and make an effort to make healthy food choices. And after the past three days, I’m feeling downright cocky about conquering the sedentary lifestyle. I’ve been doing yardwork, mowing, lifting and loading brush, bending, stooping, walking, and more aerobic/weight lifting than I ever accomplished when I had my gym membership. I don’t see any short-term end to the physical workout either with all that remains to be done.

To further complicate matters, obesity and sedentary lifestyles contribute to two other risk factors of Alzheimer’s—hypertension and diabetes. It’s a catch-22 situation.

In addition to controlling these risk factors, Maria Carrillo, Alzheimer’s Association vice-president of medical and scientific relations, adds other helpful ideas to cut the risk of Alzheimer’s. She said, “Other lifestyle aspects that may contribute to healthy brain aging are eating a brain-healthy diet, being mentally active, and being socially engaged.”

The best and safest way to modify Alzheimer’s risk is to make healthy lifestyle changes: don’t smoke, exercise your brain and body, control your weight, and become a social butterfly. Is it easy? Not a chance!

Remember the three dreaded diseases that cut short the autumn of many, many lives? Well, guess what? Reducing the risk for cancer, heart disease, or Alzheimer’s slashes the chances of developing any of them. Sometimes good health can be attributed to genetics, but more often it requires a personal commitment,  determination, and perseverance.

copyright © September 2014 by L.S. Fisher

http://earlyonset.blogspot.com 

Know What to Throw Away; Know What to Keep

Our Walk to End Alzheimer’s was Saturday and, as usual, I couldn’t help but be a little nervous about the weather. We were at the fairgrounds at 6:30 a.m. unloading vehicles, setting up tables, and trying to figure out the best places to put everything. Before the 8:30 a.m. registration time, we were set up and ready to go.

By walk time, we heard good news from the registration table—we were very close to our $34,000 goal, and with the pledges to come in after the walk—we would easily reach that amount. We handed out trophies to the largest team and the best-fundraising team which turned out to be the same team—Sylvia G. Thompson Residence Center. Fairview Nursing Home came in second in fundraising, and Jim’s Team came in third. I think that as a family team, coming in third is quite an honor.

In addition to the trophies, we recognized the youngest walker and the one with the most birthdays. This year it turned out that I was well acquainted with one of them and knew the proud mama of the other. The youngest “walker” was Catherine, daughter of Jessica and Brandon Snell. Jessica is a co-chair of the Sedalia Walk. And the guy with the most birthdays was ninety-year-old John Chambers, better known to be as Uncle Johnny.

As soon as I came home from the walk, I faced the reality of having to find a new place to put everything in the home that I share with my new husband. I knew that the fundraiser and walk materials that I keep from year to year couldn’t stay in the back of Harold’s Tahoe forever. So, I went through the supplies and organized them to store on a shelf in the garage. Easy peasy, you say? Not quite. We had to reorganize the shelves in order to find a place for my three totes. We wound up with several trash bags, totes full of recyclable items, bags and boxes for Open Door, and, of course, there were the things to keep.

Wednesday, we made another trip to my house to start the monumental task of sorting through forty-five years of accumulation. The problem for me is that digging through drawers, boxes, papers, and miscellaneous cubbyholes, storage boxes, and stacks of stacks amounts to tearing at the heart of memories.

It’s easy for me to decide what to give to charity. Some items were easy to toss, especially those things I should never have kept in the first place, or those I’d just never gotten around to throwing away. But other things—Jim’s belt buckles, his knife, one of his many pocket watches—okay, those I had to keep. Harold kept pulling things out of drawers. A phone call to the optometrist settled the issue of Jim’s and my old eye glasses. Recycle.

Am I the only person that hides a few secret things in an underwear drawer? Harold tossed an old diary and a few of Jim’s letters from Vietnam that I managed to keep since 1969. I tossed them in the “keep” tote.

“What’s this,” he asked.

I looked up to see the yellow nightie I had taken to Hawaii when Jim and I married. Moment of truth. I couldn’t wear it anymore. It was old. I certainly wasn’t going to give it to Open Door for someone else to wear. “Hand it here,” I said. I threw it in the trash. And started crying.

So, in a few hours we cleaned out the dresser and chest of drawers. We hauled out several sacks of trash, but I still have to go through the bags of socks, underwear, pajamas, shirts, shorts, and odds and ends that would clothe a small nation.

It had been raining most of the day and as soon as the rain let up we loaded the Tahoe and started down the drive. I told Harold that I felt like I was throwing away part of my life. “You don’t have to throw away anything,” he said.

“Yes, I do.” I turned my head and looked out the window as we drove away. The tears came again.

It’s just too easy to accumulate and so hard to pare it down. I never wanted my kids to have to go through all my stuff when I’m gone. Yet, in reality, it would be much easier for them to decide what to throw away and what to keep. They wouldn’t have the emotional ties that I do and wouldn’t feel so much like they were throwing away a lifetime of memories.

copyright © August 2014 L. S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Walk Season: I Challenge You…

Sedalia Memory Walk 1998

We are entering Walk to End Alzheimer’s season, and I challenge you to join the fight against Alzheimer’s by participating in the Walk to End Alzheimer’s or donating $100 to support someone who is walking.

I first walked in 1998 with a small group—a couple from Slater, two people from the Alzheimer’s Association, and from Sedalia—Jim and me. Oh, let’s not forget the dog, Victoria. That was it, the Sedalia Memory Walk, 1998.

We are gearing up for Walk season and chipping away at our Sedalia Walk goal of $34,000. Our walk is one week from today—September 6. This morning, I went online and donated $100 in honor of Jim’s birthday. He would have been sixty-nine Wednesday.

Fundraising for a disease is hard work, and it seems that without a “fun challenge” it’s hard to compete for charity dollars. Social media has been abuzz about the ice bucket challenge for ALS (Lou Gehrig’s disease). The ice water videos have gone viral, netting $100 million in August for ALS. The movement is still going strong, and is in fact accelerating and gained over $65 million in one week. I’ve seen videos ranging from my grandchildren to mega-star celebrities like Dolly Parton.

I have to say that the ALS Association has been brilliant to latch onto the idea which they credit to Pete Frates, a 29-year-old former Boston College baseball player who was diagnosed with ALS in 2012. The ALS Association sought to trademark the “Ice bucket challenge” but withdrew the applications after public concern.

Why the heck would the public be concerned? Well, for one thing, the ice bucket challenge began as a pro athlete’s stunt giving $100 to a charity of choice. The dousing began with golfer Greg Norman and motorcycle racer Jeremy McGrath. If you declined the challenge, you were supposed to give $100 to a charity of your choice.

ALS is a horrible disease and when the ice bucket challenge turned exclusively to ALS it gained attention and a huge amount of funding.  According to ALS’s fact sheet 12,000 people in the U.S. have the disease, and my heart goes out to those who suffer from this debilitating motor neuron disease.

Let’s shift to ALZ (Alzheimer’s). We weren’t clever enough to latch onto the ice bucket challenge. Our premier fundraiser is the Walk to End Alzheimer’s. Our 600 Walks nationwide support more than five million Americans with Alzheimer’s. Nearly everyone you meet has lost a beloved relative or friend to this fatal disease. As we age, our chances of developing the disease increases to nearly fifty-percent. Every single one of us has a stake in finding a cure for Alzheimer’s and related dementias.

So my challenge to all my family and friends is not to douse yourself with ice water, but to put on walking shoes and head to the nearest Walk to End Alzheimer’s. If you can’t participate in a walk, donate $100 to your local Walk, and then challenge five friends to Walk or donate $100. It is easy to donate online at www.alz.org/walk!

Okay, so I realize that isn’t nearly as much fun as watching someone get drenched with a bucket of ice water, but Alzheimer’s is a scary disease and without a cure, it will become even scarier in the next twenty years as we baby boomers age. So consider yourself challenged, and share the opportunity to End Alzheimer’s Now!

You can donate to Jim’s Team at act.alz.org/WalkSedalia.

copyright © August 2014 by L.S. Fisher

http://earlyonset.blogspot.com 

Life Is Short, Live It

Love is rare, grab it.

A few days ago, I came across a saying that really struck home with me: “Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet, cherish it.” The person who came up with these words of wisdom is unknown, but it could be the story of my life, and perhaps yours.

When I was young, I thought life flowed forward with countless days of sunshine. I had that invincible conviction so common to the young. Eventually, I found out how short life was as the hard hand of death entered my life. Schoolmates died from terminal diseases when I was young. In early adulthood, the terminators included drug overdoses and car wrecks.

I also learned at an early age how rare true love is. Of course, I had my heart broken a few times, but when Jim entered my life, it was an entirely different experience. I found out what it meant to love and be loved without reservation, fearlessly, and with all my heart. Then, love blossomed with the birth of our sons, and later when our grandchildren were born.

Jim and I faced the world together, united. I had his back, and he always had mine. He was my protector, my best friend, and my love. When dementia struck, we faced the awful fear of the unknown along with the predictable outcome of the known. When Jim died, I was reminded of the shortness of life, the heartbreak of love lost, and the empty spot that replaced the part of myself that died.

I’ve never been a person to wallow in self-pity so I dumped the anger and began to pick up the pieces. I found happiness with my family and friends. I kept busy—oh, my, have I ever kept busy. My life became full and rich again.

That rare emotion, love, entered my life again, and I said “yes” to grabbing it. On Saturday, August 16, I took the final step to make my life complete when I married my longtime best friend, Harold.

My sons walking me down the aisle

We started our married life with a lovely ceremony surrounded by family. While honeymooning in Branson, we stopped at a scenic overlook. I offered to take a photo of two couples, older and younger. They offered to take a picture of us. When Harold retrieved our camera, he told them we had just married the day before. “Oh, are you going to start a family?” he asked Harold.

“We already have grandchildren,” Harold replied.

An only child, never married, Harold has inherited an instant, large family. My mom and I were talking about the change in his status recently. “I hope the shock doesn’t kill him,” she joked.

Sure, being married again is going to require adjustments for me. I still find it hard to think of Jim as “my first husband.” I’ll no longer have all the personal time that I’ve had in the past. And I’ll no longer have sole possession of the TV remote control. We have a few conflicts with what we record on our DVR’s—after all I don’t want to give up American Idol or The Voice.

In the big scheme of things, those are just minor adjustments. The major benefits of our marriage far outweigh the drawbacks. I now have someone to love—and he’ll always have my back, and I’ll have his. We have good times together, whether it’s working on a project, traveling, visiting family, watching TV, or sitting on the deck, drinking coffee, and playing with our dog Lucy.

Unity Sand Ceremony

Harold and I have joined hands to make one heart. During the unity sand ceremony on our wedding day, Pastor Burton said, “As these containers of sand are poured together, the individual containers will no longer exist, but will be joined as one. Just as these sands can never be separated and poured again into the individual containers, so will your marriage be a molding of two individual personalities, bonded together forming one heart, one love.”

What can I say? Life is good. I’ve been lucky in love, twice.

When I look back on my life thus far, I have a treasure chest of sweet memories stored in my brain. I appreciate the value of life, and love, and look forward to creating many more special moments.

copyright © August 2014 by L. S. Fisher

http://earlyonset.blogspot.com