Wednesday, September 21, 2016

September 21 Is World Alzheimer’s Day

Today is World Alzheimer’s Day. Currently, an estimated 47 million people worldwide are living with dementia. Alzheimer’s is a global problem, and researchers around the world are working diligently to find a cure.

We already know that Alzheimer’s is the most expensive disease in America. It also has a devastating economic impact worldwide with a cost of $818 billion. Healthcare for persons with dementia are too specialized which increases the cost.

According to the World Alzheimer’s Report, “Currently, healthcare systems struggle to provide adequate coverage of diagnostic services, and care is too often fragmented, uncoordinated, and unresponsive to the needs of people with dementia and their families.”

A better approach, according to the report, would be to rebalance the services to primary and community with case management. Case management could be more effective if (a) caseloads were manageable, (b) clearly defined with training and adequate preparation and (c) the case manager would be empowered to coordinate care among providers.

This sounds like the purpose of the HOPE for Alzheimer’s Act!

We are looking forward to a world without Alzheimer’s, but until then, the report rightly observes, palliative and hospice care needs to be improved for those with dementia. It is important to consider preferences of people with dementia about end-of-life issues.

Only 40 – 50% of people with dementia have received a diagnosis. The executive summary of the report concludes with, “We need to focus on achieving high coverage of dementia diagnosis and continuing care, both to ensure access to current evidence-based treatments and support, and to create systems and platforms with the capacity to deliver, with equity, much more effective treatments in the future.”

On World Alzheimer’s Day 2016, advocates will continue in their efforts to increase research funding. Caregivers will continue to care for their loved ones. Hospice teams will help families face the inevitable end of this incurable disease. Families will pick up the pieces and go on living without fathers, mothers, spouses, siblings, aunts, uncles, friends, or even children who die from dementia.
   

Resource:
World Alzheimer’s Report: https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf

Copyright © September 2016 by L.S. Fisher

The Crazy "Daze" of September

Every year Jim and I went camping in Colorado. The first year, 1983, we arrived in Estes Park during the annual rodeo, and if Jim hadn’t had a good line of gab, we wouldn’t have had a place to camp. Then, our planned drive up Fall River Road was cancelled because of snow. To Missouri people, snow in July was surely an oddity. Eventually, we discovered August was the perfect month to visit the Rockies. That is, perfect, except for the hordes of tourists.

So, we came up with a plan to go on Labor Day weekend after the bulk of the tourists had gone home. The aspens had turned fall colors and elk roamed the streets of Estes Park. We were in wildlife heaven! We pitched our tent at Moraine Park and prepared to enjoy the peace and quiet of cool mountain mornings.

On our third night of camping, I woke up cold. I rolled over on my back and splat, icy cold water dripped on my nose. Splat, splat, splat, the cold water began to drip faster. I covered my head with my sleeping bag and went back to sleep.

The next morning, Jim woke up early, as usual. He sat up and hit his head on the tent. He started punching the drooping tent trying to remove the six inches of snow that had fallen during the night. Ice water pooled in the floor of the tent and our sleeping bags were soaked. Snow continued to fall during the day; luckily, we found a cabin for the next night. Jim’s comment on the situation: “This will be a good story to tell our grandchildren someday.”

Life was much simpler then than it is now. September is one of my busiest months, and sometimes, I think the days of September have become the “daze” of September. The month whirls and swirls as events and deadlines surround me.

My to-do list has turned into a to-do book. I’ve broken it into four different categories trying to keep up with everything. The month begins for me on Labor Day weekend with the first of two family reunions, followed swiftly with our team fundraiser. Walk to End Alzheimer’s is always in early September, and I haven’t missed one of those since 1998. That definitely leaves out vacationing of any kind.

Just for fun, let’s throw in a club meeting, speaking at a conference, updating websites for numerous events, two dinners (on the same night!), appointments, mowing grass at home and in town, new projects, finishing old projects, and on and on.

A few days ago, I complained that I retired from a forty-hour-a-week job to sometimes work from daylight to midnight. The problem with retirement, as I see it, normal work hours don’t apply. It’s like being on call twenty-four hours a day without defined meal breaks.

Harold looked over my to-do book, and said, “It seems to me that most of your time is volunteer work.” This was after a marathon of working on my photo drive, at his insistence, which had nothing to do with my volunteer work, or did it? After all, other than my sunset photos, most of the photos were of, you guessed it, volunteer events.

“Well, I don’t want to work all the time,” I insisted, “but I don’t want to sit around doing nothing all day either.” There you have it: the dilemma—too busy, or too bored. Where is the happy medium?

One new thing I’ve thrown into the mix of activities is line dancing exercise class three days a week. I get my exercise, laugh, and forget the busyness and “daze” of September.

Yes, sometimes, I’ll look at the calendar and wonder what the heck I was thinking. Or not thinking. But, you know what? I’ve chosen this lifestyle of my own freewill. It is the life I find meaningful, fulfilling, and purposeful.

Besides, before you know it, it will be October. Mmmm. SBW pajama party (guess who’s in charge), Business Women’s Week, proclamation, board meeting, chicken dinner, Halloween, …the to-do book is already running out of pages.

One thing I really look forward to in October is our “girls” vacation with my mom and sisters. Life is good. Busy, but good.  

Copyright © September 2016 by L.S. Fisher

Sunday, September 11, 2016

A Little Help from Friends

Saturday morning, Walk to End Alzheimer’s day, was the big day we’d been planning for since shortly after the last walk. A night of thunder and downpours had calmed to a spattering of rain. Almost zero percent chance of rain, yet there it was big as life.

“It should be out of here by eight o’clock,” Harold told me.

“We start set up at six,” I groaned. I pushed the button on the coffee pot. For once, I’d prepared it the night before. I might have been a little concerned about hearing the 4:30 alarm.

I had been loading my car for days in preparation for the Walk. Banners, table, books, supplies, camera, notebook, clipboards, etc. had been loaded and checked off my long list. The first text of the day came in letting me know we were shooting for 6:30 to give the rain a chance to move out.

“You better put your books in a Rubbermaid,” Harold said. “Even if the rain quits, the ground will be wet.”

“Good idea,” I said. For once, I had not worried about rain and had left the books in the shipping boxes. We transferred books to the tub and Harold carried them to the car and placed them in the back seat like the final piece of a puzzle.

With my extra thirty minutes, I had time to sit down with a cup of coffee, and to look at the latest text messages. WyAnn had run out of space in her vehicle, and Jessica’s was already fully loaded. I admitted, I was out of room in my car too. Then, a text from my daughter-in-law asking if I needed her to bring her truck. She offered to help WyAnn, but when I called, WyAnn had recruited help from family.

The rain let up, so I gathered my purse, water, and my just-in-case rain jacket. On my way out the door, I saw the tub with my team’s T-shirts. I grabbed them up and put them in the passenger seat.

Harold, who planned on going to the walk at a more appropriate hour, opened the garage door for me and began to quiz me: cell phone? camera? purse? Yes, yes, and yes.

I slid into the driver’s seat, slammed the door, and turned the key. Click. I didn’t believe my ears. My super dependable car didn’t respond. Another try…click.

“Raise the hood,” Harold said.

“I don’t know where the lever is,” I replied. I don’t recall raising the hood in the six years I’ve had the Malibu. Still, finding the release was much easier than finding the battery. It was well hidden.

I texted the group, “My car won’t start. I may be late.” Then, I texted Stacey, and she said she was on the way. I didn’t even want to consider how long it would take us to transfer everything from one vehicle to the other.

About the time Stacey arrived, Harold had attached jumper cables and the car started. “Don’t shut it off until you get there,” he warned me.

Stacey followed me to the fairgrounds. I was anxious because I knew we only had a short time to set up. When we arrived, the streets were lined with vehicles. Oh, great, I thought, there’s another event going on.

What? There must have been twenty guys setting up tables and chairs, tents, banners, flags, and holy cow, to help me unload my vehicle. I knew WyAnn said some of the baseball team from SFCC would be there to help, but we’d never had this much help!

For such a disastrous start, everything was smooth sailing after that. The sky cleared and with a little help from my friends, and friends of friends, the stress just evaporated like a drop of water on a sunny day.

My son took my car to W-K while I was at the Walk. That’s when I learned my six-year battery had gone belly up. How long had I owned my car? Just a little over six years.

But, hey, the sun was shining, people were smiling, and with a little help from my friends and family, all was well.

Copyright © September 2016 by L.S. Fisher

Tuesday, August 30, 2016

Jim’s Team

Doctors don’t want to diagnose a forgetful forty-nine year old with early onset dementia. First, they look for tumors, vitamin deficiencies, stroke damage, or something as simple as prescription drug interactions.

After numerous tests eliminated other conditions, a doctor finally diagnosed Jim with dementia of the Alzheimer’s type. Jim was emphatic that he didn’t have “that.” The doctor that gave Jim the bad news was named Worth, and Jim immediately dubbed him “Dr. Worthless.” 

I wasn’t as sure as Jim was that the doctor was wrong. After I contacted the Alzheimer’s Association, I had attended a few support group sessions. When my contact at the Association told me about the Memory Walk, as it was called at that time, I signed up for it and raised $600.

I didn’t mention it to Jim since he was so adamant that all that was wrong with him was a stroke he had “five years ago.” As the years passed, it was always “five years ago.”

One day he was looking at the newspaper and saw an article about an upcoming Memory Walk in Sedalia. “I have trouble with my memory,” he said, “and I’d like to go to this walk.”

Well. The Big Bad Wolf wouldn’t have had to huff and puff very hard at all to knock me over.

We showed up at Liberty Park on a warm September day in 1998. We quickly discovered that we were the only two people from Sedalia. Still, we walked, and Jim’s Team has walked in every Sedalia Walk since that day.

With this year’s Sedalia Walk coming up in less than two weeks, my thoughts turned to our team name this morning. Jim’s Team—what a natural choice.

Jim’s Team turned out to be so much more than a Walk team. Jim’s Team was really all the people it took to help him, and me, through the dark days of dementia. Jim’s Team was made up of family, friends, co-workers, neighbors, and occasionally total strangers who stepped up to offer a helping hand when it was needed.

Included on Jim’s Team were physicians, nurses and nurses aids, housekeeping, social workers, and, eventually, hospice. Every step of the way, we needed the support and guidance provided by the Alzheimer’s Association.

We needed the prayer team who never forgot us, and the love team who never gave up on either of us. You can never underestimate the “doer” team, the ones that didn’t just offer, “if you need anything,” but instead came up with, “I’ll mow your grass,” or “here’s a cobbler I baked.” What would we ever have done without the companion team—“I’ll drive you to Kansas City for your doctor’s visit,” and “here, I’ll help you get Jim loaded into the car.”

Everyone that stood by us and helped us was a part of Jim’s Team. The core team was immediate family: Jim’s mom and my two sons. They were the ones that helped me make the tough decisions: making it through day-to-day, home care, the nursing home decision, and heartbreaking health care decisions. They had my back at all times.

Jim’s Team held us in their embrace and listened to my rants, dried my tears, and made me laugh when I thought that was impossible. Jim’s Team made all the difference in his and my quality of life.

Jim passed away April 18, 2005, but Jim’s Team continues to walk in his honor and in honor of others lost to dementia. Over the years, Jim’s Team has raised around $50,000.

 Jim's TeamIn less than two weeks, we walk again. In my heart, I’ll remember Jim’s joy during that first Walk. I’ll think about the good times, bury the heartache, and hope that someday soon researchers will find a cure making Alzheimer’s a distant memory.

To join, or donate, to Jim’s Team, click here or on the Walk to End Alzheimer's logo.

Copyright © August 2016 by L.S. Fisher

Thursday, August 25, 2016

All Roads Lead to Home

When Jim returned from Vietnam, he was stationed at Fort Riley, and we spent about a year and a half living in Manhattan, Kansas. With barely enough money to get by, we often took drives in the country for entertainment. We explored the back roads, and often toured tiny towns that were barely blips on the maps. Not that it mattered to us, because we never used a map. 

Jim had a good sense of direction, and eventually, we’d wind up at the small apartment where we lived. He always said, “All roads lead to home.”

One summer day, we headed down this long, winding road through the middle of nowhere just to see what we could see. Our car didn’t have an air conditioner, so we drove with all four windows down and breezy hot air gave us the illusion of bearable heat.

After driving for about an hour, we rounded a corner to see a big sign that said, “Dead End.”

“Wouldn’t you think they would have put that sign several miles back?” I grumped. It didn’t help that I was pregnant and couldn’t seem to get comfortable. Jim, on the other hand, handled the situation by merely turning around and going back the same road.

Life’s bumpy road has significant, unexpected detours, and dead ends, that change the course of our lives. My life’s journey, of course, was forever altered when Jim developed dementia.

Sometimes, when life gets about as bad as it can possibly get, it takes a turn for the better. I had to remind myself of better days ahead last Saturday when I went to a memorial service for Linda Newkirk, a woman who became my mentor, champion, and my friend.

On the drive over, I thought about Linda and the positive influence she had been in my life. When I came up with the idea for Alzheimer’s Anthology of Unconditional Love, Linda was the Executive Director of our local Alzheimer’s chapter.

In my memories, I could still see her smile and appreciated her wholehearted support of the project. She, Joetta, and another staff member selected the stories. Linda helped me promote the book and offered her encouragement throughout the entire process.

Because of Linda, I had the audacity to believe I could gather up slice-of-life stories and publish those stories in a book. Publishing the Alzheimer’s Anthology was one of those pivotal moments that launched more than a book—it launched a new and exciting chapter of my life. 

During an invitation to share memories, several individuals spoke about how Linda had been a positive influence on their lives. Her sons talked about how much courage she showed in the face of a terminal illness. Her main concern during her last days was not that she was dying, but her worry that her family would be devastated. Linda was a woman of strong faith, and she rested easy knowing that God was good, and He would hold her in His loving embrace.

I felt compelled to share my memories of her. The enormity of losing a woman who had done so much for me threatened my composure. My voice was a little shaky as I fought back the tears, but in a couple of minutes, I paid homage to the pivotal role Linda played in my life. I don’t remember my exact words, but I ended with “I will never forget how she completely changed my life, and I’ll never forget her.”

Throughout life’s journey, we encounter people who have more confidence in us than we have in ourselves. Because of them, we have the courage to leave the familiar path we’re traveling, and go into the unchartered territory of a new direction. We take a chance on navigating the route without an itinerary or a map.

I left the memorial and headed home with gratitude in my heart that Linda had been part of my life’s story. With her radiant smile, dignity, encouragement, generosity, and kind heart, she provided a living example of how to walk through this world. Through courage and faith, she demonstrated that she knew the way to her Heavenly home. She broke the chains of earthly tribulations and embraced the joy of God’s amazing grace.

Copyright © August 2016 by L.S. Fisher

Wednesday, August 10, 2016

Stave off Alzheimer’s One Dance at a Time

Going to line-dancing exercise class was one of the best decisions I’ve made in the last year. It was by chance that I saw Ruth Dale’s offer of free line-dancing classes. I commented that it sounded like fun, and she encouraged me to try it.

At an SBW meeting later that same week, a few of us decided to check it out. Friday rolled around and I worried about my ability to learn a structured dance. When I was in high school, I was loved to dance, but was mostly a free-form dancer. Or as my dance partner at a school dance observed, it looked like I was stomping on bugs.

First day of class, I caught on to a few basic moves—left vine, right vine. Some dances were easy to learn—the cupid shuffle. Others were more challenging for me—the watermelon crawl. The dance we learned this week—the wrong way—sums it all up.

I’ve been working especially hard on this dance since, “You’re going the wrong way,” was one of the few phrases Jim could say after dementia stole his language skills. This phrase was always directed at me, and it usually meant I hadn’t understood what he was trying to tell me.

Sometimes, I admit, I was actually going the wrong way. I like to do some heavy thinking while I drive. My radio is always on the Blend, and the music relaxes me and sets my mind in fast forward. This morning, I was indulging in some creative thinking, and as a result, I took the scenic route to the dietitian’s office.

The dietitian, Angela, is another good decision I made this year. She helped get me back on track after a two-year hiatus from healthy eating and regular exercise. Now, I have a second chance to get back on track after basically wrecking the train.

I give Angela credit for helping me “Fuel Up Right,” one of the Alzheimer’s Association’s “10 Ways to Love Your Brain.” Eating a balanced diet lower in fat and higher in fruits and veggies is a piece of cake. Ooops, no cake. Bad cake. Oh, well, maybe occasionally a sliver of chocolate cake.

What I’ve undertaken isn’t really a diet and exercise plan. It’s a lifestyle change. Behavioral strategies are an excellent way to reduce risk of Alzheimer’s. A new lifestyle is my ticket to a healthier me—body, mind, and spirit.

1)      Body: Since I joined line dancing and pay attention to what goes into my mouth, I’ve lost eleven pounds. That’s not as much as I want to lose, but it’s a darn good start. I feel better, stronger, and healthier than I have in a long time. According to my physician, dancing builds stronger bones and improved muscle tone.
2)      Mind: Learning new dances exercises my mind. Brain stimulation helps stave off Alzheimer’s. My brain is on overdrive as I try to remember the steps to a complex dance. Ruth likes to challenge us with new dances. The variety of the dances keeps the class fresh, interesting, and, best of all, fun!
3)      Spirit: Line-dancing exercise classes have given me the opportunity to make new friends. We have laughed, cried, and prayed together. We’ve danced together in class and out-and-about. I’m so blessed to know these happy footed gals and guys!

Line dancing applies to several of the Alzheimer’s Association’s “10 Ways to Love Your Brain.” I’ve got “Buddy Up,” or be social, covered with my new friends!

Another way to improve brain health is to “Break a Sweat.” Well, this happens every time we dance. Tuesday evening, I complained about the room being cold when we first got there. By the time we finished dancing, I was fanning myself. Go figure.

“Stump Yourself” involves challenging your mind. I’m challenging my mind one dance at a time. Biggest question when Ruth tells us what dance we will be doing is, “How does that start?” After the first few steps, the brain usually, key word usually, kicks in.

How about “Take Care of Your Mental Health”? Depression is linked to mental decline. It’s impossible to be around my line-dancing friends and be depressed. In fact, that is the perfect place to go when things aren’t going right. Dancing and listening to music are two things that put me in that happy place before I can count to four.

Life isn’t all about dancing, or is it? Yes, I think it might be!

Copyright © August 2016 by L.S. Fisher

Wednesday, August 3, 2016

The Nose Knows

I was sitting in church a few weeks ago and caught a hint of an unusual scent. I tried to decipher what it could possibly be, and thought I detected a hint of vanilla mixed with a light floral fragrance. It seemed odd that I caught only a whiff of the pleasant smell, and then it was gone. After church, I made a trip to Walmart. As I rounded the canned vegetable aisle, there was the same scent—illusive, and a little bit creepy, to tell the truth.

Nice smelling ghosts aside, this phantom smell concerned me. I had heard that smelling something that wasn’t there could be a sign of something going wrong in the brain—tumors and dementia at the top of the list. Phantosmia, olfactory hallucination, can be deadly serious.

I loaded my groceries, jumped in my car, and turned on the ignition. The air conditioner kicked on, and I breathed in the fragrance again! That’s when it dawned on me—the unusual smell was from the new body lotion I’d put on my arms that morning. Well, I was relieved that I’d solved the mystery and dodged that neurological disorder bullet in one fell swoop.

We are surrounded by odors, pleasant and unpleasant. Some of our strongest memories are tied to smells. Harold and I were in the shop working on his latest project when I caught the smell of freshly sawed lumber. Immediately, I thought of Jim and me building his mom’s house and then ours. By building, I don’t mean hire a contractor. We didn’t have money for that! We strapped on our tool belts and went to work. Jim could smack a nail a few times with his hammer and drive it home. I “Lizzy Borden-ed” my nails. About forty whacks later, I’d be there too.

Scents are a time machine. A recent article I read talked about how our noses are important memory tools. Our sense of smell can stimulate the brain to remember. The article in the caring.com newsletter said, “Although someone with severe-stage dementia may seem beyond all interaction, you may be able to reach in and connect through smell.”

Odors can be used to influence mood. Aromatherapy can stimulate different moods or emotions. Some scents, lavender, for example, are soothing and can be helpful for insomniacs. Peppermint and rosemary are believed to be stimulating. Peppermint might also remind a loved one of Christmas. For me, wintergreen makes me think of being sick—Pepto-Bismol.  In fact, the very smell makes me queasy.

What about those candles or plug-ins that smell like sugar cookies? That brings back memories of my mother-in-law Virginia preparing dozens of sugar cookies for care packages to family members. The trouble is, those scents make me hungry! And the smell of cinnamon drives me insane for Virginia’s cinnamon rolls.

The smell of crayons or a freshly sharpened #2 pencil will bring up mental images of the first grade. I didn’t go to kindergarten so first grade was my introduction to a schoolroom. My older brother, Tommy, ever helpful, dropped me off at the room. He tried to prepare me for my new experience by telling me the pencil sharpener was at the back of the room.

All was well, until I panicked when I couldn’t figure out exactly what the pencil sharpener was supposed to look like. I started crying. Of course, they went and got my brother to calm me down. He later said that I cried every day of first grade, but I think that is an exaggeration.

We can smell our way back to our younger years, or even our childhood. Wouldn’t it be great if we only remembered the happy smells and not the icky ones? Sometimes, we don’t get to choose which memories our sniffer triggers, because the nose knows our oldest and most deeply rooted memories. 

Resource: https://www.caring.com/articles/scents-and-dementia

Copyright © August 2016 by L.S. Fisher

Tuesday, July 26, 2016

The Truth Is…

Living near Whiteman AFB, I see stealth bombers and fighter jets on a regular basis. I was walking my dog a few weeks ago and a pair of fighter jets flew overhead. It made me pause and think about how I had no fear of bombs raining down from the sky. The truth is I feel lucky to live in a country where we don’t worry about our enemies dropping bombs on our homes. 

Lately, I’ve seen more hate than I’ve ever seen in my life. It is true that during the Vietnam War protesters were on the news every night taking out their frustration on those drafted into fighting. The death and destruction of war invaded our homes. During that turbulent era, reporters reported the news during a thirty-minute or one-hour broadcast, then they were finished until the next day. Now, we have twenty-four hour politically biased TV pseudo-news, the Internet, and social media. Constant exposure whips some folks into a lather.

The truth is hate doesn’t solve anything; it just increases the problems. If you aren’t part of the solution, you may well be part of the problem. Do you really love your political candidate more than your own family? If you do, I find you to be a scary person with messed up loyalties. Do you really think you can change someone’s mind by throwing a hissy fit every time he disagrees with you? Tantrums might be cute in a toddler, but ridiculous in an adult.

The truth is that it’s easier to believe lies, innuendoes, and gossip than to seek the truth. Lies destroy lives. This is especially true in politics. Baseless rumors dressed up as memes on social media are shared with thousands or millions without regard to the human being targeted. Apparently, sharing this crap is more important than how offensive and reprehensible it is to family and friends.

The truth is life isn’t fair. Never has been, never will be. Bad things happen to good people and bad people prosper. Jim was a good man and, if the world had been fair, his life would have never been cut short by dementia. If life were really fair, lightning bolts would strike down truly evil people who have gone beyond redemption.

The truth is cruelty should not be tolerated. Cruel people are ugly people from the inside out. When we support cruelty, or give it a wink, we are responsible for our own actions or reactions. Selfishness damages the hearts of people who love you. Lately, I’ve witnessed feuding among family members causing pain for their mother, unkind “dramatic” actions spewing anger at a friend, and treating a person with dementia as if he is no longer human and can’t be hurt.

The truth is we are all human regardless of religion, nationality, race, sexual orientation, political party, or economic status. Each classification has good, bad, and indifferent people. There is an ultimate danger in lumping everyone with a common denominator under a single umbrella of hate or dehumanization. On the other hand, you can’t put your trust in someone for the simple reason he falls within one of those categories. Bad people do bad things without regard to your preconceived opinion. Good people come from all walks of life and diverse backgrounds.

The truth is love hurts. We like to think that love equates happiness, but just as high as the highs, the lows are not only low, they can be rock bottom. Love can be a weapon, a bargaining chip, or the most unselfish act in the world. How you use love defines you as a human being. I’ve discovered throughout my life that either you love someone or you don’t. Infatuation is not love. Lust is not love. Admiration is not love. Saying “I love you” is not love.

You don’t have to look far to see what love is: 1 Corinthians 13:4-8. Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.

At least with the people we love, each of us should strive to become less judgmental when they believe differently than we do. The truth is this would be a scary world, indeed, if we all thought alike. Thoughtful and respectful differences are a good thing. We need to become truth seekers.

Copyright © July 2016 by L.S. Fisher