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
#ENDALZ

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

#ENDALZ 

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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

#ENDALZ 

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
#ENDALZ

Sunday, October 29, 2017

Chilly Days and Spooky Nights

Fall is in the air, and when I take the dog out first thing in the mornings, I see frost on the ground and ice on the stock tank. Each day, I think I’m dressed warm enough for a winter’s day, but haven’t convinced myself that I’m to the point of needing gloves and a stocking cap. At least that’s how I feel until the wind hits me.

Halloween will be here soon so my thoughts turn to things that scare me. I know I’m in the age group where Alzheimer’s isn’t even considered “early onset” anymore. I’m now included in the scary statistical risk for women over age 65. One in nine people over age 65 have Alzheimer’s disease. The really scary part for me is that of the 5.2 million people with Alzheimer’s, more than 3 million are women.*

A few weeks ago, I wrote about showing up at grandparent’s day a day early. Now, I’m so paranoid about appointments that I keep them in electronic form and write them on the wall calendar. Yet, I still second-guess myself. I’ve been bringing the music for line dancing class while our fearless leader is recuperating from knee surgery. I arrived early to set up the equipment, and no one was there. I glanced at my watch to double-check the time and saw that it was still ten minutes early. I mentally assured myself it was the right day. Eventually, everyone showed up and I breathed a sigh of relief that I was at the right place, at the right time, and on the correct day.

A few days ago, I opened the microwave and started to put the gallon milk jug in it. “Oh, my gosh!” I said. “What was I thinking?”

The next day, I shook creamer into my cup because it mixes in better when I pour the coffee. I opened the refrigerator, grabbed the milk, and started to pour milk on my creamer. Wouldn’t that have been an interesting drink?

Yeah, Halloween is a time to think of scary things, like Alzheimer’s and the ten warning signs of Alzheimer’s:  (1) Memory loss that disrupts daily life. (2) Challenges in planning or solving problems. (3) Difficulty completing familiar tasks at home, at work or at leisure. (4) Confusion with time or place. (5) Trouble understanding visual images and spatial relationships. (6) New problems with words when speaking or writing. (7) Misplacing things and losing the ability to retrace steps. (8)  Decreased or poor judgment. (9) Withdrawal from work or social activities. (10) Changes in mood and personality, including apathy and depression. *

Scary behavior aside, this Halloween has been special. My brother and I finally put our twisted tales and yarns together into a book titled Apparitions.  The goal was to have it finished in time for Halloween. Well, we made it in some respects since the e-book and paperback are available online. I don’t have the copies I ordered yet. There was a delay while we tried to get the cover to suit us. Another delay was my reluctance to let the book go live because of my fear that I’d made a stupid mistake during the editing process or missed a simple error.

My husband assures me that my mind tends to jump ahead rather than staying in the present. It might have to do with mental overload. I have too many appointments, obligations, and an out of control to-do list. Multitasking has turned into multi-taxing on my poor stressed out brain.

Halloween is a time of trick or treat. I’ve decided to treat myself to peace of mind in regard to turning into an absent-minded retiree. At least with my optimistic attitude, I believe my occasional odd behavior is from being distracted rather than a sign of early stage dementia. At least, that’s my story and I’m sticking to it.   

*source: Alzheimer’s Association: 2016 Alzheimer’s Disease Facts and Figures, https://www.alz.org/documents_custom/2016-facts-and-figures.pdf

Copyright © October 2017 by L.S. Fisher

#ENDALZ 

Monday, October 23, 2017

Individual Results May Vary

How often have you seen an advertisement—weight loss, growing hair on a bald head, miracle cure—where the final statement is: Individual results may vary. Yep, that is the catchall phrase to get the advertiser off the hook when the product miserably fails to deliver.

It is not just advertisers who promote the cautionary tale about individual results. When you develop a disease, you may often hear the same comment from your doctor. Along the way, they’ve tried to steer you toward the healthy path, but they know that some people defy all the odds, which they refer to as statistics.

I participated in a video conference recently, and the speaker talked about lifestyle as a way to increase your chances of attaining overall health for your body and brain. Of course, the ideal situation would be a strictly healthy diet, an exercise plan, and mentally stimulating activities.

The downside is that as humans we can’t always resist the donut, we’re too time crunched or physically drained for exercise, and rather than read a book, it’s much easier to zone out in front of our favorite TV program.

Although population in general would benefit, we all know individual results may vary. We all know the person who smoked, ate junk food, and never left the couch for anything more important than getting a beer out of the fridge. We may write off these individuals as having a death wish, but sometimes they just go on and on until they reach a ripe old age. On the flipside, we all know people who eat right and exercise but develop cancer or die from cardiac arrest. Individual results vary.

Yes, there are exceptions to known statistical risk factors, but as the researcher pointed out: Most of us fall within the middle and how we monitor our health can make a life changing difference. Lifestyle may be our best defense against Alzheimer’s disease and other dementias.

Genetics and environment play a major part in our overall health. If we are born with genes that increase our chances of developing Alzheimer’s, we can’t change that. In some cases, we can improve our environment. Where we are born and raised can affect our health throughout life. If we live in an area with air pollution, contaminated drinking water, or unhealthy living conditions, it increases our chances of developing life-changing diseases.

The bottom line is that no pill or treatment is a cure all for any disease. Hopefully, we are on track to find an effective treatment for Alzheimer’s, but even when that happens, how we take care of our bodies and minds can make a huge difference.

When individual results vary, we should strive to make sure our individual results vary toward a positive outcome.

Copyright © October 2017 by L.S. Fisher

#ENDALZ 

Wednesday, October 11, 2017

A Lucky Mistake

I left early for grandparent’s day at my grandson’s school so I could go by and visit my mom. Delays can happen when driving more than an hour, and I didn’t want to be late for the 2:10 event.

I  had called Mom as I pulled out of the driveway. “Would you like to go with me?” I asked.
She was having lunch with my younger sister. “We’ll be home by the time you get to town,” she said.

When I arrived, my mom and sister were at Mom’s house. We had a nice visit and a photo op before Mom and I headed to the school. We arrived at the school at 2:00 p.m. and I sent my daughter-in-law a quick text to double-check the grade he was in. “I think he’s in the fourth grade,” I told Mom, “but one year I showed up for grandparent’s day and went to the wrong room.”

My daughter-in-law confirmed that he was in the fourth. “We’re here!” I texted.

Mom and I walked up to the door and pushed the buzzer. “We’re grandparents,” I said. The door unlocked and we went inside. A woman behind a desk motioned for us to come inside the office.

“Grandparents day is tomorrow,” she said, holding up a flyer as proof.

Just then my phone buzzed, “Oh, no,” my daughter-in-law texted, “it’s tomorrow.”

I immediately thought of Alzheimer’s sign #4 “Confusion with time or place.”  Just as quickly I remembered that, occasionally, messing up an appointment is a normal age-related change. Whew! Dodged that bullet.

“This is what happens when you retire,” I said. “You lose track of the day of week or the date.” Today was the tenth and grandparent’s day at school was the eleventh. Close, but no horseshoe, as the old saying goes.

“You are exactly on time,” the woman said as if I needed some reassurance that I wasn’t completely in la-la land. “You’re just a day early. You can come back tomorrow.”

“I have an appointment tomorrow,” I said. Yep, for 2:15 p.m. no less.

“We have practice tomorrow,” my mom said. She and other family members play music at area nursing homes and they do a final run through before the week begins.

“Could we at least see him?” I asked.

She buzzed his room and in a few minutes, he came down the hall. We had hugs and a photo op.

“Enjoy visiting with your other grandma tomorrow,” I said.

I couldn’t help but think going a day early was a lucky mistake. I was able to spend time with my mom and saw my grandson. Grandparent’s day came a little bit early this year.

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

Wednesday, October 4, 2017

The Ten-Year Leap

I can remember a co-worker who always said getting old was better than the alternative. She did have a solid point.

Unfortunately getting older does have its pitfalls. A good day can be defined as one when something isn’t aching. It seems that the older we get the harder it is to jump out of bed in the morning. I tend to drag myself out of bed and head toward the coffee pot. After the first cup and a few stretches, I feel almost human again.

It scares me to think that I’m the age now when Alzheimer’s isn’t even considered early (or younger) onset. Nope. I’m solidly into the age where if it happens, it falls into the statistical data as the ages of greater vulnerability.

Although Alzheimer’s is a disease and not a normal part of aging, age is still the biggest risk factor. If that news wasn’t bad enough, two-thirds of the Americans living with Alzheimer’s are women.

A gene called APOE (apolipoprotein E) regulates lipid metabolism. Less than five percent of the population has APOE2. This gene lowers the risk of Alzheimer’s. The most common variant is APOE3 which does not affect risk of the disease.

The culprit is the e4 version that increases the risk of Alzheimer’s disease. Most of us don’t know whether we carry the e4 version of APOE. Jim’s neurologist asked to do genetic testing on Jim and I gave permission. He had one copy of APOE4 and one APOE3.

Gender further increases risk, especially for women. A study at Stanford University Medical Center in California used brain-imaging studies to determine that a woman with one copy of APOE4 has a much greater risk of developing Alzheimer’s than a male with one copy.

A study at the University of California found that women with a genetic predisposition to develop Alzheimer’s disease do so at an escalated rate between the ages of 65 and 75. It is believed that the reason the risk increases for women in this age bracket is because menopause and decreased estrogen begin at about 51.

If you inherit two copies of the APOE4 gene, your risk is even greater. This too, is not a complete determinant since some who have two copies do not have Alzheimer’s and some who don’t have the e4 version have Alzheimer’s.

People whose parents have dementia often fear developing dementia in their older years. My dad died when he was my age, but my ninety-year-old mother is as sharp as ever. I believe part of mom’s success is that she is active and takes almost no medications. In fact, we’re pretty sure she’s in better health than my siblings and I are.

The good news is that APOE4 isn’t a doomsday diagnosis. The bad news is that I have entered the ten-year period when women experience a leap in developing Alzheimer’s disease. More good news is that I at least plan to stay active like my mom. My goal in life is to find that fountain of youth she found and drink my fill.

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

Thursday, September 28, 2017

Catching Up

Here it is autumn already. The season is catching up with the dead looking leaves on the trees attacked by the Japanese beetles. Hopefully, we’ll get some nice fall colors out of the remaining leaves.

The yard is starting to look like autumn. We are surrounded by cornfields that have turned golden brown as they quickly approach harvest time.

Yesterday was the first day it was cool enough to think of dragging out the autumn wardrobe. At least it was a day I didn’t feel like I had to wear a sleeveless blouse to keep from melting. We even had a gently autumn rain.

I wore a hoodie this morning when I walked the dog. With her long hair, she seems to be enjoying the autumn crispness too.

I keep telling myself that I need to get in gear and drag out my fall decorations. Last year, it was nearly Halloween before that happened. Unfortunately, decorating often falls into the “I can do that tomorrow” category. It seems each day I have a list of things that have to be done that day and can’t wait until the next. Or worse yet, the things that should have been done last week…or the week before that.

Catching up happens every year after Walk to End Alzheimer’s. I have a lot of catching up to do. I tend to let everything else slide in the last few weeks before Walk, and often in the two weeks following. That means the last week in September and the first week or so in October are times to put on a different hat and catch up on everything I put on hold during the walk.

Every year I look at my September calendar and think…it won’t get busier than this. Then, I flip the page to October and have to take deep breaths before I admit that I’m not going to be caught up until at least November.

I have several days on my October calendar double-booked and two days triple-booked. I have some serious choices to make. Throw into that the unknown, unexpected things that happen and October just got really, really scary.

I can’t help but wonder what I would do if I ever did actually catch up. I kind of think that’s never going to happen. Makes me think of what my sister-in-law used to say, “The hurriered I go, the behinder I get.” That just about sums it up.

Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, September 21, 2017

For Those Who Wait

We didn’t get any decent tomatoes all summer long. Harold left for town this morning and gave me a call. “We have three or four semi-ripe tomatoes.”

“Okay, I’ll go out and pick them,” I said. I walked out to the potted tomato plants expecting to pick a few and bring them inside. Ripe tomatoes were everywhere. The saying, “Good things come to those who wait” popped into my head.

You wouldn’t think that I’d even think of this expression since patience is not one of my virtues. Sure, I have a lot of good qualities: empathy, a good work ethic, general optimism, and so forth. Patience does not make that list. Nope, not even as an afterthought.

My lack of patience gets me into trouble sometimes. I get really frustrated when I’m trying to open a file on the internet. I absolutely hate waiting for that little circle to stop spinning. Or for an ad to pop up and obstruct my view. Life is too short to wait, and wait, and wait. Often, I’ll just close it and figure that I didn’t really need to know the latest “shock and awe” news story.

Patience. I know men don’t usually have any patience, but everyone expects a woman to have it. I used to have a certain amount of patience, but I guess years of budgeting my time has zapped what was left of it.

My saving grace is stubbornness, or bull-headedness if you ask certain people. When I don’t have the patience to complete a task, I’m stubborn enough to see it through.

I’m starting to lose patience with a cure for Alzheimer’s. People die every day from Alzheimer’s and related dementias. We can’t find a cure soon enough to suit me. I can’t wait for the first survivor.

We thought about that first survivor at the Walk to End Alzheimer’s this year. During opening ceremony, we hold high pinwheel flowers in various colors to represent the walker’s connection to the disease.

I always choose a purple flower because I’ve lost someone to the disease. Yellow is the color for caregivers, blue for those who have the disease, and orange for those who are supporters. This year, a new flower was introduced. Two young children held up the white flower that represented our hope for the future. The white flower is for the first survivor. That person does not exist at this time.

After the ceremony, they gave me one of the white flowers. I hope before much more time passes, I can take the white pinwheel back to the walk and personally hand it to the first survivor in our town. I hope to see our walk filled with white pinwheel flowers.

No, I will not patiently wait for the first survivor. I’m going to be walking, advocating for more research funds, and doing all I possibly can to push, cajole, and become the squeaky wheel.

Patience is not one of my virtues. I might as well make the most of my shortcoming.   

Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Monday, September 11, 2017

Together We Can…

Saturday was my twentieth Alzheimer’s Walk.

In 1998 the year of my first walk, four troublesome years had passed from the time I had noticed Jim was having trouble remembering basic information. Jim had always had an amazing recall for numbers and dates, but had forgotten his social security number. I thought that strange, but I didn’t push the panic button until he admitted he didn’t know his birth date either.

After testing, it was determined that Jim had dementia of the Alzheimer’s type. Jim, of course, insisted he didn’t have “that,” as he referred to it, but when we saw an article about an upcoming “Memory Walk” in Sedalia, he wanted to go. “I have memory problems,” he said. I had already signed up for the walk and had raised some money, but since Jim didn’t have “that” I thought he wouldn’t want to go.

We arrived at the first walk to discover we were the only people from Sedalia. The other walkers were Helen and Chuck from Slater, Joetta and Penny from the Alzheimer’s chapter office in Columbia, and Penny’s dog, Victoria. Six people and a dog, and I knew all their names—including the dog.

Saturday, was a different story. More than three-hundred walkers and thirty-six teams crowded into the highway gardens. We had professional DJ’s, a super sound system, corporate sponsor booths, volunteer shirts, a professional photographer, and pinwheel flowers. We even had an official playlist of songs. At the first walk, the closest thing we had to music was Helen’s hunting horn. The highlight of the walk was going into the VFW where a veteran asked Helen to blow her horn. After she blew her horn, they took up a collection to add to the walk total. The grand total was $600, almost all of which I had collected from co-workers and friends.  
 
To make my twentieth walk special, I wore my 1998 shirt and my team wore the 1999 - 2017 shirts. We knew they weren’t exactly vintage shirts, but my niece and I laughed about struggling not to call them vintage. Old, I guess was the correct terminology.

Yesterday, Facebook posted a “memory” from twelve years ago, September 10, 2005. My son, daughter-in-law and their two kids were at the Memory Walk wearing 2005 shirts. I smiled at how small the grandkids were, and then I realized that was how small they were when Jim died earlier that same year. It made me incredibly sad to realize that they lost their grandpa at such a young age, and Jim missed out on seeing his grandkids grow up. Family was everything to Jim. He loved being a dad and was over the moon about being a grandpa.

It’s hard to believe that I’ve been doing what I’ve been doing for twenty years. I logged my shirts before I took them to the walk to make sure that all the years were covered. Some of the shirts did not have a year and I had to look at photos to determine which years went with which shirts. Then, I identified the shirt by what it said: Move; We’re on the Move; WALK (in Alzheimer’s Logo).

After the walk changed from the Memory Walk to the Walk to End Alzheimer’s, the message on the shirt conveyed increasingly positive meanings. The 2017 shirt, Together We Can End Alzheimer’s, told its own story. When we work together, we can change impossible to possible.

It is shocking to realize that my kids are older than I was when Jim developed those first troubling symptoms. Time passes so quickly. Lifetimes come and go. There have been times in my life when I felt I was walking alone, but more often, I’ve relied on and been supported by others. Together, we can accomplish anything. Together, we can accomplish everything. Together, we can end Alzheimer’s.

 Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Sunday, August 27, 2017

Remembering Jim

Today would have been Jim’s 72nd birthday. In honor of his birthday, I wanted to share some of my memories of Jim before dementia.

Jim’s uncle introduced me to Jim on a hot summer day in 1968. I don’t know if it would qualify as love at first sight, but it was darned close to it. He was drafted in September and after training, he left for Vietnam in May of 1969.

Jim liked to say he won me in a craps game. He came up with the idea that he could take R&R in Hawaii, and I could fly there and we could get married. The only problem was, neither of us had any money. Jim decided to take what money he had and shoot craps to finance a honeymoon. Sure enough, based on the roll of the dice, he had enough money to fund the trip.

We were married at Fort DeRussy on December 20, 1969. It was a small wedding with the chaplain, Jim, and me. The witnesses signed our marriage certificate before the nuptials so they could go home. Jim, being Jim, refused to wear his uniform for the wedding. He bought some “civvies” for the ceremony.

During the early morning hours of Christmas Day, Jim went back to Vietnam and I flew back to the states. We began our lives together when he returned home April 5, 1970. He still had a year’s obligation to Uncle Sam so we moved to Manhattan, Kansas.

The couple who had the smallest wedding also had the smallest apartment: one small room with a bathroom. We had no air conditioning, and I mostly remember the sweltering heat and the two of us sleeping on a twin bed. In early fall, we moved to a bigger apartment in the same house.

Jim was a family man. He loved spending time with his family and my family. We traveled home about every other weekend. We always drove an old clunker because Jim was a genuine shade-tree mechanic and could keep any vehicle on four wheels running well past its prime.

The army didn’t pay much so we learned early on to budget our money. We always had a savings account for emergencies. Our entertainment was inexpensive. Jim would play his guitar and sing, we went for long drives, and we spent a lot of time at Tuttle Creek because Jim loved to fish. If we really wanted to splurge, we went to the movies or ate at Dog and Suds.

Glen Campbell’s song said “Manhattan, Kansas, Ain’t No Place to Have a Baby,” but we were excited to become parents. Eric was born at Fort Riley Hospital and cost us a whopping $7. When Rob was born two years later at Bothwell, we sold my car to pay the $700 bill.

Jim loved to travel, and we often made trips to Oregon to visit relatives and his childhood places. Later, we went to Colorado every summer to camp in the Rocky Mountain National forest. Jim was happiest when he “had something to look forward to” code for a road trip. He would pack the van for days in anticipation of our annual vacations.

Jim was generous to a fault. He would literally give someone the shirt off his back. He gave away valuable musical instruments to other family members. He was stubborn and wouldn’t do anything that was against his principals. He could be exasperating at times.

Vietnam haunted him. He was mentally and physically broken by his time in the jungle. He had a fractured neck that wasn’t treated until years later. He had PTSD before anyone knew what it was. He suffered deep depression and had to be hospitalized twice.

Jim was intelligent, loved to read, play video games, had a wacky sense of humor, was musically talented, and a deep thinker. He believed in ghosts, the unexplainable, angels, God, and that death was simply closing one door and opening another.

He loved with all his being and was fiercely loyal to those he loved. He loved his boys, his grandchildren, his parents, siblings, aunts, uncles, nieces, nephews, cousins, friends, and I never, ever, doubted his love for me. He called me his bride, princess, honey, sweetheart, but never called me Linda.

Of all the things I miss about Jim, I think I miss our quiet times the most: drinking a cup of coffee and talking about the mysteries of life. I miss the adventures, the comfort, and all the things that made Jim the unique man who stole my heart and held it gently.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 24, 2017

Memory Trick and Tricks of Memory

As an Alzheimer’s blogger, I think a lot about memory and how it often tricks me. My husband finds that memory tricks, or association, helps him to remember some important fact.

One day last week, Harold asked me to remember a number. Generally, when he tells me to remember something, I write it down. That is the only memory trick I know. It so happened that when he asked me to remember the number, I was outside on the deck drinking coffee and didn’t have anything to write with, or on, for that matter.

“Okay,” I assured him, “I can remember that.”

About thirty minutes later, he said, “What was that number I asked you to remember?”

“Two-eight-four?” I guessed.

“You are close, but wrong,” he said. “It was two-eight-six.”

“Well, if you remembered it, why did you ask me?”

“It’s really easy to remember, if you remember the first number is two, and if you subtract two from eight, you get six.”

“Uh, okay,” I said. I really didn’t think that would help much.

My most memorable experience with association as a memory trick was a speaker who spoke at an assembly at the College of the Ozarks. The man, whose name I do not remember, walked around campus and learned the names of a few dozen students.

At the assembly, he had them stand up and he pointed at them one at a time and gave their names. He explained that he had accomplished this feat of memory by associating the name with a mental reminder.

Later, a student inspired by the speaker’s phenomenal memory decided he could learn the trick . “Everyone calls me Capps,” I said. After that day, he called me “Tops” because he pictured something on top of my head.

Memory problems can create amusement for those of us who are so distracted that we can’t remember simple things anymore. Normal aging accounts for a certain amount of forgetfulness. My husband thinks my memory problems are because my mind is clogged up with too much trivia. “It doesn’t work like that,” I confidently assure him every time he says that.

Short-term memory loss is an early sign of Alzheimer’s disease. Along with short-term memory loss, a person with dementia can’t remember all the steps to complete a task. A strange environment can make this even worse.

One time, we were on vacation and Jim started to make a pot of coffee. The following excerpt from Jim’s memoir Indelible explains how dementia can turn an everyday task into an ordeal:
  
One morning Jim prepared to make coffee in the in-room coffeemaker. He picked up the pot, set it down, picked it up, and set it down. He looked around in confusion trying to decide what to do next. From the bed, I said, “Put coffee in the basket.” 

“Oh! That’s right.” He added the coffee and then acted as if he expected the coffee to make itself.

“Put water in the pot.” He put water in the pot.

“Pour it in the top.” He poured it in.

“Turn the pot on.” He turned it on. As soon as the coffee was done, he was back in full form. He poured the coffee into the thermos, cleaned the pot, and brought me a cup of coffee in bed.

Memory is a tricky thing. As far as that pesky number, Harold and I were on our way to an appointment and he asked, “Do you remember the number I asked you to remember yesterday.”

“Two-eight-six,” I replied without hesitation. “What I don’t remember is why the number was important.”

Harold thought about it for a few minutes. Finally, he broke the silence with, “I don’t remember either.”

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 17, 2017

Total Eclipse of the Heart


I can remember a solar eclipse when I was a kid. We were warned not to look directly at the sun, but to use a pinhole in a box to see the shadow of the eclipse. Now, in less than a week, we are going to see a total solar eclipse—a once in a lifetime event.

So how this weird happening is going to shake out remains to be seen. I live in the area of totality. That means I can observe the eclipse in my own backyard. It also means that some of my relatives who live outside the area of totality are going to share in the experience by coming to my house. That is, if the roads aren’t gridlocked with the thousands of folks from the four corners of the United States who plan to flock to the area of totality.

Watching the eclipse isn’t something you do on the spur of the moment. If you plan to look at the eclipse, you must have proper eyewear. Before we ordered ours, Harold researched the ISO ratings, reputation of the seller, and recommendations from the brightest minds in the world. His vigilance paid off since our glasses were not among those “recalled” due to being questionable.

All this talk about eclipses reminds me of Bonnie Tyler’s “Total Eclipse of the Heart.” I visualize a total eclipse of the heart as a heart that is beyond broken--a heart with a shadow hanging over it.

Some events in our lives can hurt our hearts seemingly beyond repair. When we lose a loved one to an accident, to incurable disease, or from suicide, life ceases to be the same. During the total eclipse of the heart, it seems that life will always hurt.

I can’t think of anything sadder than losing a child or a grandchild. As hard as it was for me to lose Jim to dementia, I can’t even imagine how heartbreaking it was for my mother-in-law. Our sons were grown when Jim developed dementia, but younger onset dementia or familial Alzheimer’s disease can often leave school aged children without a parent.

In the United States, 15.9 million unpaid caregivers provide care for a loved one with Alzheimer’s. Caregiving for a loved one with dementia is more labor intensive than for seniors without dementia. About a quarter of the caregivers responding to a survey reported they provided 41 or more hours of care a week. Caring for a loved one with dementia is often a long-term commitment. According to the NIH and aging trends study, 47.4% provided care for more than six years.

Investing the time and energy to provide quality care for a loved one with dementia is the ultimate act of love. Caregiving becomes a way of life and when that ends, emptiness fills the space.

The concept that love can be a total eclipse of the heart takes on additional meaning when you learn more about a total eclipse. The world, as we know it, is transformed into a strange place when darkness falls in the middle of the day and the temperature drops dramatically.

Time becomes your friend as you rebuild your life. Much like the total eclipse, the shadow gradually moves away and the world is bright and normal again. A new normal, but normal.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Tuesday, August 8, 2017

Rest in Peace, Rhinestone Cowboy

At the National Alzheimer’s Dinner in 2013, my mom and I were seated at a table near the stage. Our table was on the outside edge near some curtains.

“Rhinestone Cowboy” cued up and everyone began to clap in time to the music. Suddenly, from behind the curtain, several people emerged. All eyes were on Glen Campbell as he brushed past us smiling and waving his way toward the stage.

Filmmakers James Keach and Trevor were working on the documentary I’ll Be Me, the story of Glen’s Alzheimer’s journey. They were on hand to present the Sargent and Eunice Shriver Profiles in Dignity Award to Glen Campbell. Glen was a truly deserving recipient. His “Good-Bye Tour” and the documentary were unselfish ways of bringing a new level of awareness to a vast audience.

Glen seemed humbled by the award. His voice broke with emotion when he said, “Everyone’s been so good to me throughout my years as a musician. Thank you for helping me and my family.”

We sang “Happy Birthday” to the country music star and helped him celebrate his 77th birthday. I brushed away tears as my heart broke for the years he would be facing.

After the program, Glen posed to have his photo taken with many of the ladies, including my mom. He was charming and sweet, but I could see his hesitation and hear his halting words as he struggled to adapt to his new reality.

His daughter, Ashley, testified in front of a congressional hearing on Alzheimer’s. Advocates wearing purple Alzheimer’s sashes, packed the room. Ashley’s emotional testimony explained the changes in her relationship with her dad. She said it was hard for him to recall her name. Their times fishing together no longer lived in his memories.

Two years after the forum, I saw the documentary, I’ll Be Me. My impressions as written in a 2015 blog post:

It brought back memories of Jim’s loss of communication and musical skills. At least only family witnessed Jim’s problems and not a paying audience.

The Campbell family told of their struggles to make sure they walked the fine line between the cathartic benefits of Glen performing and being vigilant of him embarrassing himself. Audiences were tolerant. If he played the same song twice, so what? At least they got to see him perform.

Campbell’s physician felt that performing on his “Goodbye Tour,” doing what Glen loved, helped him maintain the ability to function longer. Sometimes his daughter, Ashley, had to tell her dad the correct key for certain songs. During their “dueling” instruments, her with a banjo, him with his guitar, she admitted that sometimes he didn’t always follow along. Glen relied heavily on Teleprompters to remind him of the words to songs he had sung for years.

When watching old family films, Glen asked, “Who’s that?” His wife, Kim, gently supplied the pertinent information: “It’s you, honey,” or “That’s your first wife,” or “It’s your oldest daughter.”

The film shows the relentless progression of Alzheimer’s disease. By the time of his final performance on stage, Glen did not know it was his last performance.  Cal Campbell said that when his dad performed, “He actually becomes himself again.”

The story ended with the recording session of “I’m Not Going to Miss You.” At this point, Glen is already fading away but his eyes sparkle when he finally gets into the song. This song really tugs at the heartstrings. The idea stemmed from Campbell’s remark that he couldn’t figure out why everyone was so worried about him having Alzheimer’s. He said, “It’s not like I’m going to miss anyone, anyway.”

Glen Campbell’s Alzheimer’s story was heartrending and, oh, so familiar to millions who have lived a similar story. Today, August 8, 2017, Glen Campbell ended his courageous battle with Alzheimer’s, and the Rhinestone Cowboy rode to his final horizon.

Copyright © August 2017 by L.S. Fisher
http://earlyonset.blogspot.com
#ENDALZ #GoJimsTeam

Monday, July 31, 2017

Beautiful Feet Carrying the Message

Sunday morning I took my usual seat for early church services. A woman came in and sat at the end of the same row. When the pastor gave us an opportunity to greet each other, I introduced myself to her, and she told me her name.

I recognized Laura's name as one I had seen on the Sedalia walk site. “Are you involved with the Walk to End Alzheimer’s?” I asked.

“Yes, I am!” she said.

We had a brief discussion about walk committee meetings, and then it was time for services to resume. The sermon was based on Romans 10:15 (NLT) “...How beautiful are the feet of messengers who bring good news!”

I know that we may not see physical beauty when we look at our calloused feet, maybe marred with hammertoes, blisters, corns, or bunions . What we can imagine is the power of these “beautiful” feet to bring about change.  

Each year we have about 400 pairs of beautiful feet spreading the not-so-good news about Alzheimer’s disease. Many of the participants in the Sedalia walk have a loved one living with Alzheimer’s. Others, like Jim’s Team, walk to honor someone lost to the disease. Many members of Jim’s Team walk to honor other loved ones who have, or had, Alzheimer’s.

All these beautiful feet are boots on the ground in the battle to turn Alzheimer’s into a national priority. The walkers’ beautiful feet raise awareness and funds to help families coping with Alzheimer’s find resources to help them throughout the difficult journey.

At the same time, the Walk to End Alzheimer’s helps the Alzheimer’s Association fund research grants that explore new avenues toward finding a cure. New approaches, coupled with prior research, will hopefully build the momentum to find what has thus far been an elusive cure.

Alzheimer’s volunteers are a special breed of focused individuals. It’s kind of scary to me to realize how different my life would be if I had not taken that first step to become involved with the Walk to End Alzheimer’s. Because of my volunteer work, I’ve gained dozens of amazing friends.

Perhaps it was merely a coincidence that Laura sat close to me Sunday morning. Or maybe, it was divine intervention to bring together two warriors to fight the Alzheimer’s enemy.

As we left church on that beautiful day, we paused to talk.

“There’s a woman on another team in my line dancing class. You should meet her too,” I said. I hadn’t realized who she was until our instructor Ruth had encouraged the class to participate in the Walk to End Alzheimer’s. She told me she was already walking. In fact, I had just announced her team, Poppy’s Posse, on the radio as the current top fund-raising team.

“I’d like to go to line dancing,” she said.

“You should join us. We have a lot of fun! Our instructor Ruth is a joy to be around.”

While we talked, people from the early services were leaving, and others were streaming in for the next services.

I told Laura the days and time of our three line dancing classes, and while we were talking, Ruth, joined us.

“I heard some women were talking about line dancing.” Ruth explained that the young man greeting people at the door had gone to the bookstore where she was volunteering to let her know some women were talking about line dancing. Ruth invited Laura to join us for line dancing exercise class.

Sunday was a day of connections with a dear friend and a new friend, both with beautiful feet to spread the good news that we are on the MOVE to End  Alzheimer’s.

Copyright © July 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Sunday, July 23, 2017

Use It or Lose It


For the first two years of our marriage, Harold and I drank our morning juice out of mustard-colored Tupperware juice glasses. One day, I noticed some stunning crystal goblets shoved to the back of the cabinet. I knew they had never been used because they still had the stickers on them. Now, wouldn’t my tomato juice and his apple juice look so much better in those glasses?

After using the glasses about six months, I managed to break the stem off one of them. I threw it away and took another one down. A few days later, I told Harold, “I broke one of the juice glasses.”

He shook his head and said, “I bet I’ve had those glasses twenty years.”

“Well, look at it this way,” I, the optimist, said, “since we started using them for juice glasses, you’ve gotten more pleasure out of them than you did during the entire twenty years you had them.” Really? How much good is something if you never use it?

Anyway, this little incident caused me to think about the expression, “use it, or lose it.” That expression can be taken a couple of different ways. Like so many people my age, I’ve accumulated so much stuff that I don’t use a lot of it. I basically flunked out of minimalist class because I couldn’t seem to “lose” enough stuff.

There is another way that use it or lose it applies to our health. Lack of exercise is damaging to our minds and bodies. Oh, sure, we all know about going to the gym to exercise, but do we think about exercising our brains?

We lose a certain amount of physical and mental agility as we age. When we exercise our bodies, it helps keep us physically agile. When I was much younger, I went to a wellness seminar. One woman said, “I walk so that I am able to walk.” She had severe arthritis and said that unless she kept moving, she wouldn’t be able to.

When I don’t feel like moving, I am most motivated to do it. A few days ago, Carolyn and I were walking into exercise line dancing class and we were talking about our aches and pains. But we were both there and ready to dance. Amazingly, I felt better by the end of class.

Mental agility works the same way. Use it or lose it. Keeping your mind active doesn’t guarantee that you won’t develop Alzheimer’s, but it may reduce your risk.

We all know how to exercise our bodies, although we may not do it. You might be a little puzzled as to how to exercise your brain. As with physical exercise, if mental exercise isn’t fun, you won’t do it!

To decide on the brain exercise that will work for you, think about the things you always wanted to do, but never seemed to find the time or the motivation to follow through.

Here are a few ideas:
1.      Take a class. Have you fallen behind on technology? Check out online or community college classes. Many colleges offer short courses on a variety of interests.
2.      Learn a new skill or hobby. After going to a few “painting parties” my sister discovered she had an artist’s eye. She’s learning and expanding her skill canvas by canvas. I decided to try to learn to play the ukulele. I may never be great at it, but I have a lot of fun and at least my dog enjoys hearing me play.
3.      Read, read, read. Read for pleasure and for learning. With a library card, reading must be the least expensive pastime ever! I don’t even need to spend gas money to read. I browse hundreds of library books online and check them out on my Kindle.
4.      Working puzzles is another inexpensive hobby. I buy crossword puzzle books and Sudoku books at the dollar store. I also work the puzzles in the newspaper. Heck, I’ve already paid for the paper, so the puzzles are free. A good way for me to ease into the day is to work on a puzzle while drinking my first cup of coffee.

Exercising your brain is a way to lower your risk of Alzheimer’s disease and enrich your life at the same time. Make your own list filled with things you enjoy.

My goal is to have as much mental agility throughout my lifetime as my ninety-year-old mother has. The only way to reach that goal is to think, plan, and take action to use my brain every day.   

Copyright © July 2017 by L.S. Fisher
http://earlyonset.blogspot.com