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

Monday, March 13, 2017

Lewy Body Dementia

“My mom has dementia,” the woman said. “How is that different from Alzheimer’s?”

“I think of dementia as an umbrella,” I said. “Beneath the umbrella of dementia are several diseases. Alzheimer’s is the most common kind of dementia.”

In the 2017 Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association lists several diseases that cause dementia and associated characteristics. They are Alzheimer’s, vascular dementia, dementia with Lewy bodies, mixed dementia (more than one cause—the most common is Alzheimer’s and vascular dementia), frontotemporal dementia, Parkinson’s disease, Creutzfeldt-Jakob disease (rare, can be genetic or caused by consuming products from cattle with mad cow disease), and normal pressure hydrocephalus.

The Alzheimer’s Association does not list the rare disease Jim had. His diagnosis was early onset Alzheimer’s disease, but his autopsy revealed the disease he actually had was corticobasal ganglionic degeneration, a disease I had never heard of. The report also mentions “incidental Lewy body,” severe frontotemporal atrophy, tau positive glial inclusions in the white matter, but no evidence of Alzheimer’s disease.

It is easy to understand with overlapping symptoms why diagnosis is so difficult. While searching for an answer to the “why” of Jim’s dementia, we received several conflicting theories, including Parkinson’s and Pick’s disease, before finally settling on Alzheimer’s.

Of course, the mention of Lewy body in Jim’s autopsy, incidental aside, had me researching Lewy Body Dementia (LBD). This disease affects around a million people in the United States.

There is no single test to diagnose LBD, and in the early stages, it may be confused with Alzheimer’s, Parkinson’s, or a mental disorder. Diagnosis is made through examination, laboratory tests, brain imaging, and testing memory and cognition.

Through my volunteer work with the Alzheimer’s Association, I’ve met fellow advocates diagnosed with LBD. I remember one man telling me that his hallucinations were disruptive and disturbing. Unfortunately, people with hallucinations or other behavior problems may be treated with anti-psychotic drugs. Haloperidol (Haldol®), olanzapine (Zyprexa®), and resperidone (Risperdal®) should be avoided because of dangerous side effects, including an increased risk of death.

Lewy bodies attack several different regions of the brain, which causes a variety of problems for the person with the disease. Short-term memory, perception difficulties, processing information, and language issues can be confused with Alzheimer’s. Movement disorders are similar to Parkinson’s with tremor and muscle stiffness. The distinction between LBD and Parkinson’s dementia is based on the timing of dementia. In LBD, dementia will quickly follow parkinsonism within a year, but people can have Parkinson’s and not develop dementia for many years.

People with LBD often have sleep disorders. The vivid dreams associated with REM disorder may cause a variety of symptoms ranging from talking while sleeping to punching a bed partner. A person with LBD may be tired all the time due to insomnia or restless leg syndrome. They may sleep excessively during the daytime.

LBD is managed in much the same way as Alzheimer’s disease. In addition to physical, speech, and occupational therapy, the Alzheimer’s drug Exelon® may be used. Other drugs may be used to help with movement, sleep disorders, and behavioral problems. The surgical procedure used to relieve the movement symptoms of Parkinson’s is not used when a person has LBD because it may adversely affect cognition.   

LBD causes a variety of behavior and mood changes running the gamut from depression and apathy to agitation, delusions, and paranoia. Managing the health care of a loved one with LBD can be quite challenging for a care partner. If you are caring for a person with LBD, it is important to enlist help from family and friends.

Taking care of yourself and taking breaks will make you a better caregiver. Do not neglect your own health! When dealing with a progressive, degenerative disease, it is crucial that you find moments of joy. Continue to enjoy activities with your loved one as much as you can for as long as you can. Convert challenges into opportunities to use your creativity to live life to the fullest.

Copyright © March 2017 by L.S. Fisher

For an informative publication about Lewy Body Dementia:  https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction


Sunday, March 5, 2017

March Madness

With Donna Hirner-Gardner at Legislative Conference
March marched onto my calendar with the purpose of seeing how sane I could remain in an insane world. The month began with a series of meetings. By Friday I was a little bedraggled and had driven to Jefferson City for the Business Women of Missouri legislative conference.

I arrived a little early and hiked from the parking garage to the capitol building to drop off an Alzheimer’s packet. Oops, I should have known everyone would leave early on a Friday, so that didn’t happen. I hiked back to my car and drove to the hotel by a circuitous route since I was coming in from another direction.

After I checked in and carried all my various bags to my room, I decided to relax with a cup of hot tea. I made the tea and opened one of those little packets with a napkin, creamer, sweetener and stir stick to get some sugar for the tea. The cup fell and the hot tea splattered all over me, but most of the tea spilled onto the floor.

I looked at the little napkin. That was not going to work. I dialed “O” and asked if they had anything I could use to clean up the tea. “Just use a towel,” he said, “and we’ll send you us a clean one.”

Relaxation? Who needs that? I spent my relaxing time cleaning up the mess. By the time I finished, it was time for my committee meeting.

Here it is the fifth of March and I’ve finally had a moment to sit down and fill out my wall calendar for the month.

Everything is on my phone, so my husband thinks this is an exercise in futility, but I like to be able to glance at the calendar and see what’s ahead instead of waiting for a “ding” that tells me I need to be somewhere else at the same exact time I hear it.

With the two-day legislative conference behind me, I filled out the remainder of the month. All I have to say is it is madness indeed. I have exactly four days in the entire month that doesn’t have one or more events or appointments. Madness! Or at least, what was I thinking?

I have several Alzheimer’s events lined up. Monday is my Alzheimer’s district meeting with Congresswoman Hartzler’s staff. Tuesday is the Alzheimer’s walk kick-off. I have two Alzheimer’s conference calls this week: Ambassador and combined work group. Later in the month is a day for corporate sponsors, but the biggie is at the end of the month when I’ll be going to the Alzheimer’s Advocacy Forum in D.C.

To see all the activities on the calendar is a reminder that when I do have free time I need to be editing, organizing my electronic files, paying bills, catching up on my to-do list, fulfilling promises…and all the other things that don’t make the calendar or the to-do list.

A lot of the events on my mad, mad, mad calendar are fun, and the ones that are business are spent with people whose company I enjoy. Often, I spend as much time laughing as working.

With March comes the promise of springtime—flowers, birds, bees, plants, greener grass. Oh, yes, grass. Mowing? I’ll think about that when the time comes.

Oh, come on. I know I’ll have time to read a book, pet the dog, and maybe take a nap from time to time. I’m going to guard those four free-and-clear days as if they were made of solid gold, because, actually, they are!

March may be madness, but April will be here before I know it. I just peeked at April’s calendar, and optimism aside, April is a popular conference month...

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

Tuesday, February 28, 2017

Blowin' in the Wind

As usual, I was running late for an appointment this morning. As I turned onto the highway, I noticed my Sedalia Democrat had been delivered to my paper box. Deciding I could be on time if I didn’t waste the couple of minutes to pick up the paper, I left it.

After my appointment, I made my usual stop at Walmart. As I pushed my cart into the parking lot, I had to battle the wind to keep the cart going forward instead of sideways. Talk about a strong wind. The wind buffeted my car on the way home, and I parked at the end of the driveway to get my paper and mail. The paper was gone. I looked around and found it lying in the ditch.

After I retrieved the paper, I grabbed a stack of mail out of the mailbox. The wind ripped a few pieces out of my hands and whimsically scattered them into the aforementioned ditch. Have you ever chased paper that a gust of wind takes out of your reach time after time?

The Bob Dylan song “Blowin’ in the Wind” came to mind. Bits and pieces of the lyrics teased my memory. I remembered unanswered questions about manhood, white doves, cannon balls, mountains washing to the sea, and pretending not to notice freedom lost.

The most haunting line in Dylan’s song is about too many people dying. Every year 700,000 people die from Alzheimer’s, and so far we haven’t been about to do one thing to stop it. Not one single thing!

Alzheimer’s disease is the sixth leading cause of death in the United States. Approximately 5.4 million people are living, and dying, with the disease. Around 200,000 people younger than age 65 have Alzheimer’s. Many are much, much younger.

Each year I join other advocates nationally to advocate for more research funds. In our packets, we have information that compares research funds for Alzheimers compared to the amount allocated to fight other diseases. This dedication to fighting diseases has paid big dividends. At one time, a diagnosis of HIV/AIDS was a death sentence. Research has played a huge role in finding effective treatments for cancer and heart disease.

Lately, two promising drug therapies failed during drug trials. When these treatments failed, we were disappointed, but we haven’t given up!

Some of the brightest minds are working diligently to cure this incurable disease. In the meantime, it is important that caregivers and persons with dementia have the care and support they need to live life to the fullest. Those on the front lines need respite, home and community based support, family support, and a reason to hope. They need to know that we have their backs.

I was at the Missouri State Capitol on Memory Day advocating for respite funds. The Missouri state budget has been slashed, including a big reduction in the $450,000 service grants that our friends, neighbors, and families rely on for respite. This is a case of saving pennies and costing dollars. Respite helps keep persons with Alzheimer’s at home longer. A simple formula shows a possible cost savings of $2 million for the state. Here’s how it works:  800 respite families X $157 average NH Medicaid cost per day X 30 days delay in NH placement X 60% of NH residents on Medicaid = $2 million savings in Medicaid NH costs.

I’m going to D.C. at the end of March to visit Senator McCaskill, Senator Blunt and Congresswoman Hartzler. Although, I take the fight to Capitol Hill, each of us has the power to make a difference without leaving the comfort of home. Call, write, or email your legislators, especially when legislation is pending or advocates are visiting.

Become a voice. Answer the calls to action. By keeping up-to-date on Alzheimer’s legislation, you can learn how to be an effective advocate.

It may seem that the answer to a cure is blowing in the wind, but if we chase it hard enough, we will eventually find it.

Copyright © February 2017 by L.S. Fisher

Friday, February 17, 2017

Alzheimer’s Caregiving: A Voice of Experience

At the end of January, my friend, and mentor, Penny Braun passed away. Penny was my first contact with the Alzheimer’s Association. When Jim first developed dementia symptoms, I called the Mid-Missouri Chapter, located in Columbia. The executive director, Penny, answered the phone.

“I don’t know if I should be calling you because my husband has memory problems but has not been diagnosed with Alzheimer’s,” I said.

“You called the right place,” Penny assured me. “We have information that will help you, and you can call us anytime.” And I did.

Penny brought her beloved German shepherd, Victoria, with her when she came to the 1998 Sedalia Memory Walk. Penny wasn’t in any of the photos because she took them, but Victoria posed with the small group that walked that day.

In 2001, Penny asked asked me to go to the Alzheimer’s forum.

“We’re going to ask for a billion dollars,” she told me. “Maureen Reagan set that goal when she was on the national Alzheimer’s board.”

“I can do that,” I said with much more confidence than I felt. I had no concept of what a billion dollars looked like. Of course, the research funding was only a small fraction of that billion dollar goal.

Pennyand I shared a room on my first trip to Washington, D.C. We arrived late and when we tried to check in, the clerk clicked the keyboard on the computer, frowned and clicked some more.

“I don’t have a reservation for you,” he said, “and we’re booked solid.”

“We do have a reservation,” Penny said firmly, “I have the paperwork here.” Penny dug in her purse for the reservation. When she couldn’t find it, she turned on 
the charm. “We’re exhausted, and surely you can find one room we can have. Please, check with your manager and see if you can find a room for this old lady.”

When he left to check, she turned to me and said, “They always save one room in case the president or some important person needs a room. Oh, here it is!” She jubilantly pulled out the reservation, gave it a glance, and stuffed it back into her purse. “It begins tomorrow night,” she said in a stage whisper. About that time, the clerk returned all smiles, and handed us the keys to a beautiful suite. Mission accomplished.

After Penny retired from the Alzheimer’s Association to care for her husband, I saw her only occasionally. She was at the Alzheimer’s roast last spring. She, of course, gave me a big hug and asked how I was doing. “Have you read my book?” she asked.

When I admitted I hadn’t, she pulled a copy out of her purse and handed it to me. Alzheimer’s Caregiving: A Voice of Experience.
Penny knew the heartbreak of Alzheimer’s because her mother had the disease. Her family connection compelled her to open the office in Columbia, first as a volunteer. She later became the chapter’s first executive director.

Penny’s book has several examples of situations and solutions to problems that “might work.” She was smart enough to know that the same solutions don’t work for every person, nor do the same solutions always work for the same person.

I had to smile when I got to the “Three Right Answers.” She wrote, “As the disease progresses, three answers to problems seem inevitably right. The first two are music and ice cream.” The final right answer is the smile. “Use it warmly and often.”

Rest in peace, my friend. You left a legacy of hugs, smiles, and a caring heart.

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

Monday, February 13, 2017

Seven Types of Love

When February 14 rolls around, hearts and minds everywhere focus on love. Some look forward to the day with unbridled anticipation, while others feel only trepidation. During our lifetimes, most of us will experience both feelings depending on how life is going at that moment.

Love can be enduring, or elusive. It can be the center of our dreams, or the crux of our nightmares. Love can bring us to the mountaintop or plunge us into the deepest, darkest valley.

Valentine’s Day celebrates all kinds of love. According to the ancient Greeks, there are seven different types of love. I’m not sure that all the emotions we humans call “love” can really be narrowed down to seven categories, but I suppose it’s a start.

1.      Eros, or erotic love, represents the physical body. This type of love has all the passion and desire to fuel a romance. It is because of Eros love that Cupid wears a blindfold.
2.      Philia, or affectionate love, is the love we feel for our friends who have our backs through the bad times in our lives. These trusted friends provide the chocolate cake when our romantic love hits rock bottom.
3.      Storge is familial love. Storge is the type of love we feel for our parents and children. It can also be the fondness we have toward childhood friends where the relationship is built on familiarity and acceptance.  
4.      The playful love of ludus is found during the early stages of falling in love. That’s when just seeing the interest of our affections can set our hearts all aflutter. Ludus can also describe the relationship of friends who enjoy hanging out with each other.
5.      Pragma is enduring or practical love. This kind of love is found in married couples who have made the effort to maintain their relationship through compromise, patience, and tolerance. It can also be found in couples who stay together for political, social, or other practical reasons.
6.      Philautia is self-love. In this sense, it is a good thing! In order to truly love someone else, it is necessary to first love yourself. Philautia is unhealthy when a person places himself before others.
7.      Agape is the purest love. It is selfless love free of expectations that accepts and forgives. Agape is unconditional love.

We all understand that in a romantic relationship, we give our hearts, and we expect that love to be reciprocated. Since Cupid is blindfolded, sometimes love is blind. We focus only on the good qualities and overlook the irritating ones. Whether we survive the good, bad, and ugly that makes up every human being on earth depends on how much effort we put into keeping the love alive.

When we look at the different kinds of love, it is easy to see that agape, or unconditional love, is the type of love that caregivers have for their loved ones with dementia. When Jim developed dementia, my love for him became multidimensional and included both pragma and storge.  I often likened my love for Jim to that of a mother for her child. More importantly, I don’t believe that the love of a caregiver fits neatly into some Greek or psychologist’s category.

Each of us is a unique individual with an individual capacity for love. Not even a scientist can accurately measure the love one person has for another.

A lot of hearts given on Valentine’s Day are not worth the paper they are printed on. The real value of a Valentine’s heart is determined by how we treat the ones we love the other 364 days of the year and throughout the years of a lifetime.



Resources:
https://lonerwolf.com/different-types-of-love/
https://www.psychologytoday.com/blog/hide-and-seek/201606/the-7-types-love

Copyright © February 2017 by L.S. Fisher