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

Tuesday, July 18, 2017

Choose Your Battles

In Missouri, 2017 should be put on the calendar as the year of the Japanese beetles. Sure, we had some last year and they were a nuisance, but this year they are a plague of biblical proportions.

These voracious bugs started on our grapevine—just like last year—then they moved on to the wild roses, blackberry bush, returned to destroy the apple tree and all the apples on it, attacked the yard trees making them look like autumn instead of summer.

It’s a dilemma how to battle beetles. The traps attract more, and it certainly was tedious to pick them off and throw them in soapy water. That might work if you had a scattering of beetles, but when they congregate in huge clusters and there are thousands of them, picking seems like an exercise in futility.

So we sprayed a little Seven on them, but mostly we hoped they would move along like they did last year. But oh, no! They were way cockier than last year. One morning while relaxing with my cup of coffee on the deck, I was horrified to see our rose of Sharon bush covered with the foliage eating monsters. “Okay, they have gone too far!” I told Harold.

I used the remainder of the spray he had mixed, and although it killed hundreds, it seemed that a legion was moving along the front line of the battle to kill the bush. Harold got serious and bombarded the tree with spray. That seemed to do the trick. We had chosen our battle and although they haven’t left entirely, the remaining beetles lost interest in the bush.

As a person who is often out of sync with the opinions of those who surround me, I’ve found that choosing battles has become more important than ever. It isn’t always easy for an outspoken, opinionated woman to do that, especially when so many have lost their sense of civility and respect for their fellow humans.

Choosing battles became an integral part of caregiving. When Jim was in long-term care, I could count some residents’ family members charging into the memory unit just spoiling for battle. Nothing was ever done to their satisfaction. Complain, complain, complain. I might mention that the biggest complainers were the ones who seldom visited their family member. Too often, it seemed that since they felt guilty, they wanted to belittle the aides and nurses that tended to the residents.

These were the same people who saw me feeding, bathing, or providing extra care for Jim who would say, “You shouldn’t be doing that! You are paying to have that done.” In the first place (a) it really wasn’t any of their concern what I wanted to do for my husband, and (b) I saw how overworked and unappreciated the aides were.

There were two kinds of aides: the ones that needed a job so desperately they were willing to try anything, and the majority who had a caring nature and whose job was less of a job and more a “calling.” The people who stayed were not working solely for a paycheck.

Abuse and neglect of  your loved one should not be tolerated. Show up for care planning and provide helpful input. Rather than ranting at the unfortunate person who happens to be nearby, rational conversation with the person in charge is much more effective.

In life, we need to choose our battles. Instead of waging war against fellow human beings, negotiation may be the key to settling problems.

On the other hand, an all-out battle against Japanese beetles is not only totally acceptable, it may be the only way to save your yard.

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

Tuesday, July 4, 2017

Company Comin'

My dog goes crazy every time the doorbell rings. She runs through the house trying to get to the front door ahead of us. We have to hang onto her squirmy, wiggly body to keep her from running out the door in her over-excited state. I think she’s always hopeful that the grandkids are at the door, but she’s ecstatic to see the UPS man too.

A few days ago, I took the dog for a walk. We went out the back door, but after walking in the oppressive heat, I decided that we would just use the front door since it was closer. Of course, the front door was locked, and I rang the doorbell so that Harold would let us in.

As soon as I pressed the doorbell, the dog began her happy dance and looked eagerly at the door. When Harold came to the door, she shot through the door running amok in her eagerness. I’m pretty sure, she was wondering who the “company” was, never once realizing it was us.  

When I was a kid, I remember a song “Company Comin’ up the Road.” We lived twenty miles from nowhere deep in the Ozark hills, and company was a rare occasion.

Later, when I became a part of the Fisher family, it was a completely different situation. It was not unusual to have several different families converge on my in-laws’ house. Virginia was an amazing cook, and she could whip up a big meal on a moment’s notice. She always welcomed family and insisted they sit down at her table to eat the mouth-watering meal she prepared “such as it is.”

Family time wasn’t limited to weekends and holidays. Any night of the week might involve a spirited card game, a jam session, or coffee and conversation. Company comin’ was expected and an occasion to rejoice.

Times have changed, and so many of the family are gone now. Recently, Virginia’s baby brother Larry passed away, so one less smiling face will be at the reunion this year.

We lived next door to my in-laws for several years. I always enjoyed the company, but being a person who has to have quiet time, I would sometimes slip away for an hour or so and go to my house. Most people didn’t pay any attention to my comings and goings, but Larry would always smile and say, “You just had to get away for a while, didn’t you?” It was as if he was the one person who understood.

Another time after Jim developed dementia, Larry watched the interactions between Jim and me. “It must be awful hard thinking for two,” he said, having another insightful moment.

Life has gone full circle. Although, we don’t live twenty miles from nowhere, we don’t have a lot of company. Sometimes, the dog hears company comin’ up the driveway, but usually she doesn’t get too excited until the doorbell rings. Today, when she beat a well-worn path to the door, she was dancing with delight as she greeted the grandkids.

After playtime, she was exhausted and ready for a nap. After my busy, busy day, I’m ready for a nap too.

Copyright © July 2017 by L.S. Fisher

Friday, June 23, 2017

We Are Not Alone

When I walk my dog late at night, I always look at the sky. I’ve seen several mysterious lights. Some of them suddenly zoom across the sky, others disappear. What are those strange flying objects? Okay, a disclaimer—I do live close to Whiteman Air Force Base, and they do have some planes that look like they belong in a sci-fi movie.

According to an article I read in the newspaper recently, NASA is on a planet hunting mission. They have determined that ten new planets exist that have the potential to support life. They are in a galaxy far, far away, but the possibility exists that beings may be trying to contact us.

How many people believe our planet has been visited by “men in black” is somewhere between 25% and 45%, depending on the source. So, if you’ve seen something inexplicable, you are not alone.

Other than visitors from other worlds, we may sometimes feel alone. It seems we can live “down the road” from a close relative and seldom see them. We live in a world where many of us do not know our neighbors. We tend to go about our business and mind our own business.

When I was growing up, it would have seemed sci-fi to believe that someday we the entire world would be a few keystrokes away. Who could have foreseen twenty-four hour TV, or so many channels that we never watch them all?

Still, in the world of connectivity, some of us feel alone. I believe many Alzheimer’s caregivers feel the loneliest of all. In fact, caregivers may feel like their world has turned upside down, and they have landed in a strange and foreign land.

We each have our own road to travel; our own frontiers to conquer. We never know how strong we can be until we face an unconquerable challenge. For me, that challenge was Jim’s dementia. For others it may be cancer, or heart disease, or the sudden death of a loved one. We never know what the next day, or for that matter, the next hour, will bring.

Earth is our home for a certain time. We have only a finite number of years to gaze at the stars, fall in love, have children, and visit with our loved ones who may live down the road or across country. We have things to do—so many things to do—and a short time to do them.

When I walk the dog and look at the heavens, sometimes I feel a chill, or an unexplainable ache. I see many things at night, and sometimes during the day.

One day earlier this week while the dog and I were meandering across the backyard, I looked up at a blue sky with a few scattered fluffy clouds. I saw a strange, rectangular white object passing rapidly by.

“Do you see that?” I yelled at Harold. Of course, he didn’t hear me. Just as I marveled at that object, I saw another. In a few minutes, they were gone.

I told Harold what I’d seen, and he said, “Probably a weather balloon.” Just like my dad, he thinks every strange flying object is a weather balloon.

“What I saw was flat. Didn’t look like any kind of balloon.”

Oh, well, there’s no way of really knowing what the strange flying objects were. They could have been something from Whiteman AFB, a runaway pair of drones, sheets off a line that decided to go for a thrill ride, or maybe a deflated weather balloon.

Since the objects were unknown, I like to think they might have been a couple of angels making their way toward the heavens. Maybe, I was the only one looking up during that brief moment of visibility. At least there were two of them, so neither was traveling alone.

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

Friday, June 16, 2017

Silence, Please

My granddaughter was in a production of Dancing to Never Land, and I drove to Jefferson City to watch. As we were waiting for the program to begin, I remembered to silence my phone. While we patiently waited for her part, I took photos with my spanking new camera to make sure I could get quality photos.

An hour-and-a half into the program, my phone began to play a happy tune. What? How could that be? Of course, it didn’t play its tune during a set change or when the music was loud—oh, no, it was during a quiet time. Then, it dawned on me—it was my sunset alarm. Since we’ve been closing the blinds in the evenings, I don’t have my bird’s eye view of the setting sun, so I set an alarm to remind me to look. Turning off the ringer and media sound does not silence the alarm.

Last Sunday I heard a phone ringing during the pastor’s message. It rang, and rang, and rang. I don’t know if the person was deaf, ignoring the ring, or not wanting to call attention to himself by pulling out the phone.

Maybe they thought it was someone else’s phone. That happened to me once many years ago during an Alzheimer’s Board Meeting with my first cell phone. I could hear a phone ringing and thought, “How rude!” Except, when I reached my car I saw I had missed several phone calls. My son wanted me to know that we were under a tornado warning. He didn’t know I was in a different town at a meeting.

Then, there’s always the talker that won’t stop when a prayer begins. They are way too involved in a conversation to notice everyone has fallen into silence. How annoying that all you can hear is their conversation instead of the prayer.

When some people are alone, they have to fill their home with noise—the TV, radio, or some other racket—but I always loved the quiet. I’ve never found anything more soothing than the sound of silence, or the quiet sounds of a country night.

I’m not the only one who reveres silence. Others have provided poetic and practical observations about silence:  silence is golden, listen to silence—it has much to say, speak only if it improves the silence, silence speaks louder than words, silence says it all…

I saw a TED talk on noise. Julian Treasure said that most noise in our lives is accidental and unpleasant. Noise affects us physiologically, psychologically, cognitively, and behaviorally.
Silence or soothing noises can improve productivity and improve mood.

After leaving a party where dozens of conversations are going at once, walking out of a noisy restaurant, or shutting off a too-loud TV, I retreat into my favorite environment of stillness and relaxation. My mind thinks, “What a relief!” I’m in my element when all I can hear are the blessed sounds of silence.

Copyright © June 2017 by L.S. Fisher


Wednesday, June 7, 2017

Go Purple in June

I was at the grocery store a few days ago and the woman at the checkout asked me if I liked purple. Now, how did she know that? Well, let’s see—purple Alzheimer’s shirt, purple bracelet, purple nails, purple shoes, purple purse…

“Yes, I do,” I said. “Purple is the Alzheimer’s color and I plan to wear purple every day in June for Alzheimer’s and Brain Awareness Month.”

Tuesday was a complete Go Purple day for me. Not only did I wear purple, I spent the day with Paige from the Greater Missouri Chapter on Alzheimer’s related activities. First, we taped shows on two different radio stations, we contacted several businesses about teams and corporate sponsors, and we found a venue for an August program and care consultation. The day went really well and I found the enthusiasm and support to be a refreshing change.

The Alzheimer’s Association has a one-day event called the Longest Day. Of course, the longest day of the year is in June and this year, the fundraiser is celebrated on June 21. The Longest Day is about love for those affected by Alzheimer’s disease. People do an activity they love—playing games, exercising, sports, hobbies—and while they enjoy their activity, they raise funds for the Alzheimer’s Association.

The Longest Day is a perfect fit for the Alzheimer’s Association. Caregivers can attest to the intensity and length of each caregiving day. The most well-known family guide about Alzheimer’s and related dementia caregiving is called the 36-Hour Day for a reason. Any Alzheimer’s caregiver can tell you why.

By June, I’m always working on the Alzheimer’s Walk and have never fully participated in a Longest Day team. I believe this would be a great opportunity for someone who isn’t involved in the Walk to End Alzheimer’s , but wants to help support the Alzheimer’s programs.

Of course, I’d encourage everyone to participate in the Walk to End Alzheimer’s. We are always pleasantly surprised to see people we weren’t expecting show up on walk day.

Our walk committee has been small for several years. The same core group has faithfully taken on the task of making the walk a well-attended community event. As it gets closer to walk time, we hope to grow our committee. Many hands make light work. We’ve always been fortunate to have event day volunteers, but fresh ideas and new perspectives are always welcome. We want our walk to be better each year!

I hope you get a chance to participate in the Longest Day or a Walk to End Alzheimer’s no matter where you live. You can go to act.alz.org to find information about the Longest Day and/or find a walk near you. You can help in many ways—you can volunteer for the committee, start a team, join a team, support a team, or show up on walk day, make a donation, and enjoy.

In the meantime, remember to Go Purple! When someone asks you if you like the color purple, it is your opening to create awareness for the five million in the United States who have Alzheimer’s and the fifteen million family caregivers.

Copyright © June 2017 by L.S. Fisher

Saturday, May 27, 2017

Decoration Day


In case I’d forgotten this was Memorial Day weekend, I was reminded by the bumper-to-bumper traffic in town yesterday. Our town sets between Kansas City and the Lake of the Ozarks so every summer weekend we are in the cross-hairs of tourists. Memorial Day and Labor Day turn Limit and Broadway into parking lots.

I don’t suppose most of those people are headed to cemeteries to decorate graves of loved ones. Decoration Day was established to honor Americans who died in wars, but has evolved into a weekend of fun in the sun and store-wide “Memorial Day Sales!” Yep. The way to honor those who made the ultimate sacrifice is to celebrate and buy bargains. Memorial Day is most definitely a red-white-and-blue day right down to sales ads for clothing, hardware, lawn furniture, and every other consumerist purchase possible.

I remember when as a working person, Memorial Day was the first official holiday of the year. I admit that after our annual run to place flowers on the graves of loved ones, we spent the rest of the weekend pursuing some sort of fun activity.

Now, the highlight of Memorial Day is to attend the ceremony at the Veterans Cemetery in Higginsville and place flowers for Jim in front of the columbarium. Many of the graves at the cemetery hold the bodies or ashes of those who died fighting for this country. Others, like Jim, didn’t die in the war, but as one veteran said at a Vietnam program, “I died in Vietnam; I just didn’t know it.”

That’s what happened to Jim. Taking human life stole part of his soul and left it lying in the jungle beside the fallen. His life was never the same after he saw the lifeless bodies taken down by his M16. Jim had PTSD before we knew it even existed. When dementia faded his short-term memories, Vietnam clamored to the forefront of his mind.

Did you know that 3:00 p.m. local time is set aside on Memorial Day as a national moment of remembrance? At the appointed time on Monday, pause, remove your ball cap, and bow your head for the 1.1 million American soldiers who have died for this country.

Maybe a fun-filled weekend is the way to honor those who made the ultimate sacrifice to keep this country free. It’s a time to think about what is right about our country instead of what is wrong. This patriotic weekend is a time of remembrance. The most important thing we should remember is that our freedom wasn’t free.  

Copyright © May 2017 by L.S. Fisher

Friday, May 26, 2017

The Benefit of Laughter

Linda at Roast
The 2017 Greater Missouri Alzheimer’s Association’s roast was a roaring success. I can’t help but think a person must be quite comfortable in his skin to allow a group of people to “roast” him. Or as the emcee, Bob Pugh put it, “sear him” on first one side, then the other, before roasting him to well done.

I was assigned a seat at the “Hawk” table along with my new friend, Kathleen. We were glad to see each other since we were the first two at the table, and both of us wondered if we’d be seated by anyone.

“Are you a Hawk?” she asked me.

“No,” I admitted.

We wondered what a “Hawk” was. “Well, if they don’t show up, we can eat their desserts,” she said. We were joined by a charming gentleman who said he was not a Hawk, but eventually, the Hawks joined us—a husband and wife team. Everyone else at the table personally knew the roastee, Mark Fenner, CEO of MFA Oil, which made the experience even better for me.

Mark and the roasters looked quite dashing in their purple tuxedos. The evening was filled with good-natured ribbing, including Mark teasing a donor for selling a $10 million business, but donating “only” $25,000. The roast was topped off with a guitar and a sing-a-long.

Laughter as a benefit correlates to the benefits of laughter. I can’t think of many people who need laughter more than caregivers. The health benefits of a good chuckle cannot be taken lightly. According to Mayo, laughter is the ideal stress buster.

A good laugh can:

·         Lightens your load mentally. Laughter relaxes you, and reduces your stress hormone levels, and releases neuropeptides to fight stress.
·         Eases physical pain. Laughter triggers the release of endorphins, nature’s feel good chemical.
·         Improves cardiac health. The American Heart Association believes humor can help your heart by reducing artery inflammation and increasing HDL cholesterol. We have good and bad cholesterol. The easy way to remember which is which is “H”DL is the “happy” cholesterol and “L”DL is the “lousy” cholesterol.  

Laughter is good for body and spirit. It gives you short-term and long-term benefits. Having a good laugh every twenty-four hours is just what the doctor ordered!

I easily stored up a week’s worth of laughter at the roast. It was good to spend an evening with long-term friends I’ve met over the years, and with new friends I met for the first time at the roast.

I can’t think of a better fundraiser than one that is fun. Beneath the laughter was the serious business of raising money to provide our chapter’s outreach and to laugh our way to a world without Alzheimer’s.

Copyright © May 2017 by L.S. Fisher

Thursday, May 18, 2017

The Trip You Don’t Want to Take

I was carrying my Mother’s day potted dahlia up the deck steps when I tripped on the steps and fell. I smacked my elbow, knee, and scraped my foot.

It was a little shocking to find myself down, but I dusted myself off, moved my limbs without pain. It seemed the only visible damage was a toenail torn halfway off. I was luckier than my sister-in-law who had fallen over the weekend and fractured her hip.

Unfortunately, I had landed on the plant, crushing the plastic pot and breaking off a few of the flowers. We re-potted the plant, and I believe it, too, will recover.

These two falls made me think of all the times Jim fell. As I worked on his memoir Indelible, it became apparent to me that he had fallen more times than I remembered. None of Jim’s falls resulted in broken bones, but he often had bruises, swelling, and cuts that had to be stitched.

Jim’s main problem seemed to be balance. After several falls, he eventually used a merry-walker, a device that looks much like a baby walker for adults. He even managed to flip the merry-walker from time-to-time and the nursing home weighted it down. At one time, he was falling out of bed, so they placed it on the floor.

Up until the last several months of Jim’s life, I was able to take him for walks. I held onto him, and he seemed to do pretty well. Once he began to tilt his head back most of the time, I had more problems keeping him balanced. Eventually, our “walks” involved pushing a wheelchair around the parking lot.

A myriad of problems associated with dementia can increase the risk of falling. Dementia causes problems with balance and gait, confusion, vision and perception, and, of course, the ever present medication.

According to the CDC (Centers for Disease Control and Prevention), nearly 32,000 people died from unintentional falls in 2014. Injuries from falls are the most common accidental death for older adults.

Six out of every ten falls happen at home. NIH (National Institutes of Health) has some suggestions to make our homes safer while we go about our daily activities. Slick floors and poorly lit stairways are two examples of hazards.

NIH lists these factors that can lead to falls: (1) loose rugs, (2) clutter on the floor or stairs, (3) carrying heavy or bulky things up and down stairs, (4) not having stair railings, and (5) not having grab bars in the bathroom.

If you want a to-do list:

·         Remove safety hazards. It is easy to trip over electrical cords, clutter, dog dishes, or small furniture. One time as I was knocking down cobwebs, I tripped over a footstool.
·         Improve lighting. Make sure bulbs are bright enough that you can see where you are going. Have a lamp at your bedside, night-lights throughout your home, and keep a flashlight handy.
·         Install handrails and grab bars. Stairs and bathtubs are prime spots for accidents. Having something to hang onto reduces the risk.
·         Move items to make them easier to reach. As a short person, I applaud this idea. Almost everything is out of my reach!

Having a recent fall makes me more aware of the danger. I had a really bad fall on ice one time and my first thought was that I was going to die, my second thought was that I had “broken” my head. Ice is another story for different season. For now, let’s work on those indoor hazards that might catch us unaware.

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

Tuesday, May 9, 2017

An Eye on the Goal: A Cure for Alzheimer’s

Setting a goal is the first step to success. If you don’t know where you are headed, you don’t really know when you get there.

In the year 2001, our local Alzheimer’s Chapter Executive Director Penny Braun asked if I’d like to go to Washington, D.C., to the Alzheimer’s Forum. “We’re asking for research funding,” she told me. “The goal is one billion dollars.”

“Well, we need to find a cure, and I don’t mind asking for a billion dollars,” I said with full confidence. It wasn’t long before I discovered that research funding was way short of a billion dollars. Alzheimer’s was pushed firmly to the back burner and funding was so tiny it barely made a blip on the NIH budget.

So year after year, I packed my bags and went to D.C. with that illusive billion-dollar goal in mind. I can remember being challenged with, “And just where would we get that money?” and “We can’t ‘earmark’ NIH funds.” We inched a little higher, except for some of the tight budget years when we lost ground.

Things began to look up when the National Alzheimer’s Project Act was approved in 2010. This act required the Secretary of the Department of Health and Human Services to annually update the National Alzheimer’s Plan. The plan laid out a goal to prevent or find an effective treatment by 2025.

The Alzheimer’s Accountability Act of 2015 required scientists at NIH to submit an annual Alzheimer’s research budget to Congress. This “bypass budget,” and it lets Congress hear what scientist think should be in the budget for Alzheimer’s research to meet our goals. They determined that if NIH invested $2 billion in research, we could meet the goal.

It wasn’t easy to jump research funding from the mid-millions to $2 billion. It wasn’t not an easy sell, and it seems there was always a medical crisis that got the billions to stop them while the five million people with Alzheimer’s waited for a cure.

Alzheimer’s advocates are determined people! Alzheimer’s disease costs our country $259 billion annually, but research dollars have traditionally been tight. In 2015 (FY 16), we received a historic $350 million increase.  Once this increase was appropriated, the annual research budget was closing in on the billion-dollar mark at $991 million.

In 2016 (FY17), the Senate Appropriations Committee requested a $400 million increase which would bring our total to $1.4 billion. We celebrated with the appropriations chair Senator Roy Blunt at the 2016 Alzheimer’s Forum.

Then, this year, we received the bad news that NIH’s overall FY17 budget would be cut, and our historic increase was in jeopardy. We knew we were fighting an uphill battle to reach our goal. We weren’t sure if we had been successful, but our champions vowed to fight for us.

Once the budget was approved, my inbox was filled with “hip-hip hoorays” as Alzheimer’s advocates cheered the success of reaching our research goal.

In his letter to advocates, Alzheimer’s Association CEO Harry Johns said, “This has been a historic week for the Alzheimer’s Association, the Alzheimer’s Impact Movement (AIM) and our cause. As you know, on Monday, congressional leaders from both parties and both houses of Congress announced that the 2017 federal government funding bill includes the largest increase in history for Alzheimer’s research, $400 million. Today, the president signed that increase into law, bringing Alzheimer’s research funding at the National Institutes of Health (NIH) to nearly $1.4 billion.”

First goal reached (around at least since 2001): research funding of $1 billion. Next goal: finding a cure by 2025, or sooner! The sooner, the better. Keep an eye on the goal.

Copyright © May 2017 by L.S. Fisher

Sunday, April 30, 2017

Splish Splash


It was pouring down rain, but my cousin Reta was in town from Texas. The plan was to go to my mom’s house at Versailles, and then Mom, Reta, and I were going to drive to my brother Mitchell’s house for a jam session. My brother Jimmy and my sister-in-law were going too.

Saturday morning I called my mom. “Are we still going?” I asked her. My phone had lit up time-after-time with AccuWeather’s areal flood warnings.

“Yes, Jimmy says we’re still on.”

“Okay, I’m on my way, but if water is across the road, I’m turning around.” I’d always been afraid to drive into water, especially on Sinkhole Road where I’d lived until a few years ago.

Radar showed a swath of rain covering most of the state and the entire area included in my travel plans were a bright red. As I drove in a pouring down rain, I noticed impromptu lakes in fields and ditches that looked like mini-rivers, bank full. My wipers worked overtime to keep the splish-splashing rain off my windshield.

After a grueling drive, I pulled into the parking lot next to my mom’s and turned off the engine. The wipers kept going. How odd. I turned the car on; shut it off. Wipers swished merrily along. How great is that? I couldn’t imagine getting out of my car and leave the wipers running. I called Harold. “Take the key out,” he said. The wipers kept going. I couldn’t get them to turn off. The rain came down harder.

Harold called the car dealership, and they said I’d have to bring it in for them to see what was going on. Great. That would involve driving an hour back home. “Well, I’m going in to visit mom anyway.” I put on my raincoat and opened the door. The wipers shut off.

I crossed the parking lot and splashed through the water pooled on the sidewalk in front of Mom’s door. “Well, I’m not going anywhere else,” I announced as I removed my coat, thankful I’d worn my waterproof boots. My jeans were drenched. Mom called my brothers, and they were fine with the cancellation.

“I think it was a sign when the wipers wouldn’t shut off,” I said. The constant rain and “severe” flash flood warnings were other signs.

Sometimes, we have to pay attention to clues. Sometimes gut feelings tell you not to do something, and it pays to heed the warning.

I can easily think of several times I had gut instincts about people. When Jim and I were first married, a “salesman” came to our door and wanted to know if my husband was home. “Yes, he is. Do you want me to get him?” I asked through the locked storm door. I turned away as if to get Jim, closed and locked the door. The man practically ran to his vehicle and sped away.

Researchers say that our subconscious minds notice something is slightly out of kilter; dopamine neurons alert us to this. Bottom line, there’s a scientific explanation why we sense danger. Our brains are our early-warning systems.

Jim was an intuitive thinker and believer in gut feelings before he developed dementia. Many of the symptoms related to Alzheimer’s disease may be due to a massive disturbance in dopamine regulation in the brain. One of the jobs of dopamine is to regulate the flow of information to different areas of the brain to aid cognition. Some researchers believe dopamine is responsible for many of the non-cognitive symptoms in neurodegenerative brain diseases, including anxiety, depression, apathy, and mood.

A “sign,” intuition, gut feelings, whatever you want to call it—I take heed. After I’d been at Mom’s for about an hour, a bad storm blew through. Thunder, lightning, and a strong wind, made us all glad that we’d stayed put. Out of control windshield wipers helped keep my trip shorter and had me headed toward home earlier.

After our visit, I returned home in a rain that caused floods, which in turn, were responsible for cars being swept away. I breathed a sigh of relief when I pulled into my garage and shut off the engine. What about the windshield wipers? They stopped immediately, as they had every other time until today.

Copyright © April 2017 by L.S. Fisher

Sunday, April 16, 2017

Memories of Lilacs and April

The lilacs are in bloom and every time I walk out onto the deck, I smell them. Lilacs and April are two reminders of Jim. He left this world on April 18, 2005.

The lilacs reminded me of a story Aunt Nita shared at Jim’s services:

“I remember a time a few years ago when Jim and I were sitting in the swing. It was in early spring; we had been talking, but not a lot. Jim got up and said, ‘Aunt Nita, do you smell that?’ He walked over to a big lilac bush and picked a handful. He brought them back to me and said, ‘Smell this, Aunt Nita. Don’t they smell good?’ Remembering Jim, I always do, for I know he is one of God’s chosen few.”

When we were planning Jim’s services, I took a yellow pad up to Virginia’s house and asked everyone to tell me stories about Jim. I wrote the stories down, and I was still typing them when Gary Richardson came to our house to go over the memorial service. 

Gary pushed the paper back to me and said, “Tell me these stories.” I told Gary the stories, and he said, “Those are wonderful stories, but if I read them, they are just stories. You lived those stories, and if you tell them, they will come alive.” 

Jim, Easter, circa 1999
Rob and Eric both agreed and said that I should tell the stories. My first thought was that I couldn’t do it, but after more thought and encouragement, I decided I could do it. That is if everyone put on his or her “happy” face.

Some of my favorite memories of Jim involved travel and music. Here are a few of the stories I shared:

Jim’s favorite place to vacation was Estes Park, Colorado, and the Rocky Mountain National Forest. We went to Colorado fourteen consecutive years. Jim was happiest when waking up on a cold Colorado morning, making a pot of coffee on the camp stove and cooking breakfast. I loved the cold mountain mornings too, but not quite as much as Jim did. I would snuggle beneath the covers in our bed in the van. Jim would bring me a cup of coffee in bed and sing the sleepy head song to me…

Music was important to the entire Fisher family. Jim was talented and could play the guitar, fiddle, banjo, mandolin—anything with strings. He enjoyed playing music with his dad, uncles, brothers (Bob and Billy) and a good friend, John Cook.

Sometimes music could get the Fishers in trouble and could almost cause fights. One time when Jim was playing his guitar, and Uncle Jewel was playing the fiddle, Billy sneaked up behind Uncle Jewel and goosed him. Uncle Jewel jumped, hit Jim in the head with the fiddle bow, knocked Jim to his knees, and gashed his head open. Uncle Jewel got mad, Jim had a dazed look on his face, and for some reason, Billy, who caused the ruckus, was the only one who thought it was hilarious.

Jim liked to hear Mom and me sing “I’ve Got a Mansion Just Over the Hilltops.” The words describe wanting a mansion, a harp, and a crown.” Jim wasn’t the kind of person who would want a mansion, or a crown, but he would want that harp, because it has strings.

I can just hear Jim playing “Buckaroo” on the harp. I bet Heaven never heard anything else quite like it.

Copyright © April 2017 by L.S. Fisher


Monday, April 10, 2017

Learn As You Go

Linda and Ted, Caregivers
At line dancing class recently, we danced to the song, “Life Is a Dance.” As I listened to the words, “learn as you go,” I was reminded of my years as a caregiver. During the decade of Jim’s journey, I truly learned as I went along.

I certainly wasn’t a professional caregiver, nor did I ever believe I would ever be a caregiver for my husband. His Alzheimer’s type of dementia was a progressive disease where the caregiving became incrementally more difficult.

Becoming a competent caregiver involved a lot of baby steps. I learned the basics, sought out more refined information, and eventually I became creative. One thing  I learned early on was that a solution that worked one day, might not work the next day.

The physical part of caregiving—feeding, bathing, providing personal care—can be difficult, but it was the grief and emotional despair that I found the most difficult. The biggest struggle wasn’t how to coax Jim into a bathtub; it was the heartache of remembering a time when it was “you wash my back and I’ll wash yours.”

Often it’s the small losses that are hardest to accept. I expected to grieve big losses, but chided myself mentally for missing the companionable quiet moments. One of the things I missed the most was having coffee and conversation with Jim.

We caregivers learn as we go—learn how to handle behaviors. One of the challenges for caregivers is how to handle the baffling behavior brought on by a dying brain.

A three-step approach can be used to address behavior problems:

1.     Identify and examine the behavior. Is the behavior harmful to your loved one or others? If the answer is no, consider ignoring it. Your two most helpful tools are redirect and distract. To avoid behavior problems, think about what happened before the behavior and what happened immediately after. Could something have been done differently to avoid the problem? For example, if your loved one removed all his clothing, was he too warm? Was he wet? Was his clothing uncomfortable? Become a detective!
2.   Explore potential solutions. Was your loved one’s needs being met? Could surroundings be changed to make your loved one more comfortable? How could you have changed your reaction?
3.     Try different responses. Try to respond in a calm, supportive way. Your tone of voice and body language are more important than your words. Avoid treating your loved one like a child. Be respectful. If what you are trying doesn’t work, try something different.

When dealing with behavior, remain calm, patient, and flexible. You will have better luck if you respond to the emotion and not the behavior. Don’t argue with a person who has dementia. That is an argument you won’t win! Sometimes the cause of behavior is something as simple as a side effect of medication, or an illness. Jim became combative when a new physician gave him an antipsychotic drug. He reverted to his normal demeanor once the medication was stopped.

Caregivers learn as they go. Being a caregiver is one of life’s biggest challenges, but your reward is the knowledge that you have done everything possible to improve your loved one’s quality of life.

Copyright © April 2017 by L.S. Fisher

Saturday, April 1, 2017

Taking AIM at Alzheimer's

Linda Fisher and Congresswoman Hartzler
What is it that brings me back to Washington, D.C., year after year? It’s not the cherry blossoms. It’s not the Smithsonian or the monuments. It’s not the food, although after a meal with my besties—Jane, Kathy, and Sarah—at the historic Old Ebbitt Grill, I created a hashtag: #eatingourwayacrossDC.

The reason I come to D.C. every year is to join with like-minded advocates who are good and tired of the heartbreak of Alzheimer’s. We think it’s darned time to find a cure.

Each year we are joined by an influx of first-timers. The Alzheimer’s Association and those of us with the multiple stars on our badges do everything we can to make sure they are prepared for the Hill. Once they have the information and the “collateral” they put on their comfortable walking shoes and head to the Hill where many voices will share the same message.

I believe 1,300 purple sashes make quite a statement on Capitol Hill. As I went from appointment to appointment on Hill Day, we were the most visible group around.

Advocates from across the U.S. visited the offices of their senators and representative. The 23-member Missouri advocates first appointment of the day was a coffee at Senator Roy
Blunt’s office. We boarded the first bus leaving the hotel and arrived at the Hill in time for the 9:00 appointment. That is, it would have been time enough except for the long line of people trying to get through security. As we stood in a non-moving line, we were directed to a different door so that we arrived in the nick of time. After a photo with the Senator, we visited with his health aide, Desiree Mowry.

Desiree Mowry and Betty Johnson
After our visit with Senator Blunt, we split up. Some had house appointments and had to travel to the house side of the Capitol. Others of us, the “A” group (we referred to ourselves as the A-Team) moved to the Hart building where we would meet with Emma Kenyon, Senator Claire McCaskill’s legislative aide. After that visit, several of our group headed home, but I had an appointment with Congresswoman Vicky Hartzler in the afternoon.

Our “ask” this year was two-fold. First, we asked for a $414 million increase for Alzheimer’s research. This is the amount that scientists at the NIH submitted as a “Bypass Budget” proposal. Based on the Alzheimer’s Accountability Act passed in 2015, this is the amount to keep us on track to prevent or develop an effective treatment by 2025.

The second ask was for co-sponsors for PCHETA (Palliative Care and Hospice Education and Training Act). PCHETA (SB 693, HB 1676) is so important that more than 40 groups are working toward passage. Nursing home residents who receive palliative care at the end of life are 15 times less likely to die in a hospital. Palliative care reduces emergency room visits and hospitalization. This Act would (a) increase the palliative care and hospice workforce by establishing training programs, (b) launch a national campaign to inform patients, families, and health care professionals about availability of services, (3) enhance palliative care research.

Add your voice to our voices. Email, write, call your senator and representative to support research funding and PCHETA.

For $20, you can join the Alzheimer’s Association’s sister organization AIM (Alzheimer’s Impact Movement) $20. AIM (a) advocates for legislation to advance research and enhance care and support for those affected by Alzheimer’s, (2) supports the re-election of our Congressional champions, and (3) speaks on behalf of the Alzheimer’s community when 501(c)(3) organizations like the Alzheimer’s Association must remain silent. Join AIM at the link below using my referral code.

Just a few minutes of your time can make a lifetime of difference for three of your fellow Americans who developed Alzheimer’s in the time it took you to read this article.

Copyright © April 2017 by L.S. Fisher


Saturday, March 25, 2017

Headed to DC

This year marks my 17th trip to D.C. to join my voice with fellow advocates at the Alzheimer's Advocacy Forum.

Essential preparations for this annual journey began on Wednesday with laundry. It seemed that most of the clothing I planned to wear was in need of laundering. Thursday, the packing began and I felt pretty good when I went to bed at midnight. My suitcase was full. Friday morning was going to be easy-peasy. All I had to do was made a few final preparations, grab my bags, and head to the airport to spend the night at a hotel.

The first problem was I shut off my alarm and overslept. I took the dog out and then it was time to sign in to get my boarding pass. My sign in wouldn't work. I decided to ask for a new password and my security questions weren't correct. What? I was giving the only answers. After much agonizing, I realized I was entering an incorrect password and once I corrected  my error, I was in.

The few preparations turned into hours. I took my PC downstairs to hook into my color printer and it wouldn't work. I couldn't figure it out, so Harold came down and after a few manipulations, declared that I didn't have it plugged in correctly.

I hate it when that happens.

Back upstairs, I prepared to leave--about four hours after my target time.

"Just sit down and relax a minute before you leave," Harold said. "Otherwise, you'll forget something important."

"I'll go over my checklist, I said.

The checklist looked good. Then Harold started asking about this and that...he thinks of everything. Of course, he's the planner; I'm the seat-of-the-pants person. Eventually, he managed to think of something I'd forgotten.

"What would you do without me?" he asked.

"Go off half cocked all the time," I admitted.

By the time I headed out the door, it was raining, and the car clock told me that my timing was perfect to hit Kansas City right at rush hour on a Friday night. Oh brother.

By the time I reached I-70, rain was pouring and the traffic was pretty well bumper to bumper.  At one time, I looked in my rearview mirror to see a semi tailgating me. My windshield began to fog, and my wipers were working their butts off to keep the rain from interfering with my vision.

I called Harold for a weather report. "You should be running out of the rain by the time you reach Kansas City," he said.

The radio was on a country music station and I found the music to be soothing. I turned up the radio and karaoked to my heart's content. Once again, meteorologist Harold was correct. When I reached the city, the rain cleared just in time for a weird traffic jam on I-435.

Finally, I reached the hotel and everything was better. I checked into a beautiful room and although Harold had told me of all the fabulous eating places nearby, I ate at the hotel. I was famished and the turkey club with "house" made chips tasted wonderful.

After giving myself a mani-pedi, I decided to make a cup of tea. First problem, no cups. I called housekeeping and that problem was solved.

I was darned ready for a good night's sleep. After all the next day was going to be a long one.

After sleeping soundly for a few hours, I woke up at 4:30 and couldn't go back to sleep. I decided to make a cup of coffee and relax for a while until time to catch my flight. I poured water into the coffeemaker, put Coffee-mate in the cup and turned it on. The pot stopped gurgling, but when I checked, all I had was hot Coffee-mate water. I had neglected to put in the coffee. Second time, I did everything right except I forgot to turn on the pot. Finally, I sat down with a cup of coffee and decided I would get ready and head to the airport.

After such a rocky start, the rest of the trip would have to be smooth skies. By mid-afternoon, I'd be in D.C. and have a few days to see the sites and spend with my friends. So, I grabbed my purple suitcase and set off for another round of fighting to end Alzheimer's.

Copyright © April 2017 by L.S. Fisher

Wednesday, March 22, 2017

A Fleeting Shadow

At a funeral recently, the pastor referenced a book of Psalms that referred to life as a “breath” and our days as a “fleeting shadow.” Sunday morning, I had planned to use these thoughts as inspiration for a blog post.

Before I had a chance to write my thoughts, I received the shocking news that my 46-year-old nephew had died. I pushed all thoughts of writing aside and went to be with my mom who was devastated by the news. My heart ached for his parents who were going through the loss of a child for the second time. They had lost their daughter a scant five years earlier.

We had a discussion, my brother and I, about the long, slow process of dying versus sudden death. With one, you have time to say your goodbyes and with the other, you just hope and pray that you parted on good terms. One slowly breaks your heart, and the other is a shock to your heart.

Between PTSD and clinical depression, Jim was plagued with suicidal thoughts. It was a constant worry for me, and it was many years before I realized it wasn’t my fault. It was hard to admit there wasn’t really anything I could do to change it. I encouraged him to see a psychologist and to take the medicines that helped him function.

My sister made an observation. She said if someone dies from a heart attack, you don’t blame them. If someone has something wrong inside their brain—thoughts they can’t shut off, psychological problems, chemical imbalances—then maybe their death is no more a choice than having a heart attack.

We don’t often choose how we die; it chooses us. When Jim died after ten years of dementia, I learned what the “long goodbye” meant. Although, death was a given, it didn’t mean it was well taken. It didn’t matter that I should have been ready when Jim died—I wasn’t ready to let him go. The emotion that surprised me most was anger. When the breath was gone and his days passed like a fleeting shadow, I was furious that he had to spend the last ten years of his life fading away.  

We all talk about closure, but I have to agree with my brother that closure doesn’t exist. That isn’t quite the word because some deaths just leave a big empty spot that can’t be refilled. We just keep moving and hope the pain of loss will fade to a manageable level.

Lately, when I walk out the door, I kiss my husband goodbye—every time. “All the time you hear about people being in a car wreck without saying goodbye,” I told him. I call it my “insurance.”

More than insurance, it’s a reminder that life can be snatched away in a heartbeat. We need to make those calls, write those notes, visit our loved ones, forgive, go on vacation, have fun, and make the most of each day.

We should be thankful for the time we have to love, dream, and live. Life is so precious. Each sunrise we have another chance, another day, to right a wrong, lend a helping hand, or to make a difference in some small way. A breath. A fleeting shadow. That’s all any of us have.

Copyright © March 2017 by L.S. Fisher