Tuesday, August 8, 2017

Rest in Peace, Rhinestone Cowboy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, July 31, 2017

Beautiful Feet Carrying the Message

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

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

“Yes, I am!” she said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, July 23, 2017

Use It or Lose It

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 18, 2017

Choose Your Battles

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 4, 2017

Company Comin'

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

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

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

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

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

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

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

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

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

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

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

Copyright © July 2017 by L.S. Fisher

Friday, June 23, 2017

We Are Not Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, June 16, 2017

Silence, Please

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

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

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

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

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

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

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

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

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

Copyright © June 2017 by L.S. Fisher


Wednesday, June 7, 2017

Go Purple in June

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

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

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

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

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

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

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

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

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

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

Copyright © June 2017 by L.S. Fisher