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