Like Sand through the Hourglass

When I was a teenager, I watched the soap opera “Days of Our Lives.” Before each episode, MacDonald Carey would solemnly say, “Like sands through the hourglass, so are the Days of our Lives.”

Today, as I was pondering the passage of time, the hourglass came to mind, as well as, the profound saying that introduced a sappy soap opera. I think the image of the hourglass dwelled within my subconscious mind choosing today to come to the surface.

In my younger years, I imagined that the days of my life were so numerous that time seemed to pass slowly. I’ve noticed that the older, I get, the days, months, and years speed by without ever tapping the brakes.

As we age, we begin to realize that life is fragile and can be finished without warning. With each passing year, our bodies, our priorities, and the texture of our lives change. Friends, acquaintances, and family members move in and out of our lives. Some people may never cross our minds again, while others leave an indelible mark on our hearts.

The most difficult part of life is death of loved ones. Only time and determination can help heal a grief-stricken heart. I believe that as long as someone lives in my memories, they are with me.

The Past: The saddest part of Alzheimer’s disease is that as the memory fades, so does the history that makes each of us a unique person. We embody the history of all our yesterdays, good or bad. Our personality is built around our history. I think that all of us have faced adversity during our lifetime—some more than others. If we overcome adversity and learn from our mistakes, we develop character. Sometimes that character will shine through during the darkest days of dementia. 

 The Present: For a caregiver, quality of life is determined by how we embrace each day. I often found that taking each day a moment at a time, one problem at a time, helped me through the difficult days. A trip to town for ice cream or a walk in the park were good ways to spend some relaxing time with Jim. I also carved out some time for myself—to pursue activities that brought joy into my life whether it was lunch with friends or family, a movie, or a day trip. I lived in the present and tried not to dwell on how the future was going to impact Jim’s health.

The Future: Jim’s dementia relentlessly progressed and the future was bleak. Although, today’s medicine has the potential to slow the progression of the disease, we still await a cure. It is important for a caregiver to continue to live her life to the fullest. We need to plan for self-sufficiency and face the future with courage. Our happiness depends on how much hope and joy we feel as we think about our tomorrows.

As the sands slip through the hourglass, we need to treasure the days we have been given. Sometimes, we have life within life: reinvention, rejuvenation, revival of spirit, and determination to become our best selves moving forward. Is it possible that before the sand runs completely through, we can flip the hourglass over and move forward with more and better days ahead?

 Copyright © April 2024 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

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 Alber 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 77^th 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

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 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

Once In a Lifetime

On Sunday, I was working at the Sedalia Business Women’s Chicken Dinner when I saw an elderly lady sitting all alone at a table. Unlike everyone else, she did not have a plate of chicken and trimmings in front of her.

She had a lost look, and instinctively I knew she had dementia. Concerned that she had wandered in and didn’t have a ticket, I walked over to her and asked, “Are you hungry for chicken?” I had already decided that if she didn’t have a ticket, I’d buy her lunch.

She smiled at me, tilted her hand back and forth, and murmured some indiscernible words. I smiled at her and walked to the ticket table.

“Do you know who that lady is?” I asked.

“No, but I think she has Alzheimer’s. Her husband is fixing her plate.”

I milled around, refilling drinks, cleaning trays and tables. Eventually, a lady walked up to me, read my nametag and asked, “Are you the Linda Fisher I saw in the paper that’s involved with the Alzheimer’s Association.” I told her I was. With tears in her eyes, she told me her husband had Alzheimer’s, and she had always wanted to meet me.

Later, another woman introduced herself to me to let me know a mutual friend had steered her toward my blog. Her husband, only in his sixties, had Alzheimer’s.

Eventually, I worked my way back to the table where the lady sat with her husband eating her chicken dinner. She spotted me and reached out to give me a hug. “I love you,” she said as she kissed me on the cheek. I hugged her back. When the hug ended, she kissed my hand.

Her husband smiled and said, “She thinks everyone is the Pope.”

I introduced myself and told him my husband had passed away at fifty-nine from dementia.

“Then, you understand what we are going through,” he said.

“Yes, I do,” I said. We chatted for a while about caregivers. He had just hired a new one. He was dismayed with the lack of help and support he had found. He told me he didn’t have a computer, I took his name and phone number to pass on to the Alzheimer’s Association.

It doesn’t matter where we are or what we are doing, the chances are good we will run into someone who has a personal connection with Alzheimer’s—people filled with questions and looking for answers. Caregivers muddle through the disease doing the best they can based on trial and error.

Unfortunately, when I look into the face of someone with Alzheimer’s or the faces of caregivers, I don’t have all the answers to their questions. All I can really do is offer hugs or hug back when I’m being hugged. Offer support and caring. Listen. Accept human flaws. Know that the worst response is indifference.

I’m thankful that these people shared their personal stories, and thankful for the opportunity to share a hug with a lovely lady who happens to have Alzheimer’s. I’m grateful for a glimpse into her life—learn she was once a teacher, know she has a life beyond the scope of the disease, and grateful she has a husband who fixes her plate and looks out for her well-being.

Alzheimer’s disease is as unpredictable as life itself. Each day is a new adventure and a new experience. Yesterday, I met a lovely lady named Alice, and just like in Lisa Genova’s book, she is still Alice. Thanks to her, a chicken dinner turned into a once in a lifetime experience of being mistaken for the Pope, and to share a few unforgettable moments with a loving, good-hearted woman named Alice.   

Copyright © October 2015 by L.S. Fisher

http://earlyonset.blogspot

Don’t Let the Rain Dampen Your Spirits

In “The Rainy Day” Henry Wadsworth Longfellow said, “Into each life some rain must fall.”  At times we pray for rain, the refreshing life-essential drops that come from the heavens to end droughts. Other times, when we have an important outdoor activity we don’t want it to rain. We wonder why it can’t hold off for just a while longer. Is that too much to ask?

Labor Day is our day for our big Walk to End Alzheimer’s fundraiser for Jim’s team. This was our 17^th year to do the “traffic stop.” It seems the day is usually unbearably hot, and this year looked to be more of the same. Then, the forecast called for heat and a chance of rain.

“Will you still do the stop if it rains, or will you reschedule,” my niece asked the day before.

“We can’t reschedule it. If it rains, we’ll stand in the rain. If we have a thunderstorm, we’ll wait it out in our cars,” I said. In all the previous years, we only had one rainy day. It was a blessing in disguise because the intermittent, gentle showers made for a cooler day.

As we began setting up our signs, a few gentle drops fell. Not bad, I thought. Suppose to last only a short while and move out. Soon, the rain began falling a little harder, and eventually, those of us who brought umbrellas stood beneath them. Only Shelly and Chris didn’t have umbrellas. Chris was wearing a raincoat, but Shelly just stood alongside the road with her collection can without protection against the rain that stalled over our heads.

I glanced down the street and saw a lady coming out of her house carrying a smiley-face umbrella. She talked to Shelly for a few minutes and handed her the umbrella. This woman had lived in the house for eleven years and noticed us every year and admired our tenacity to continue through the hot days in the past. She gave Shelly a donation and insisted she take the umbrella. The woman told Shelly that her sister was only in her fifties and had been diagnosed with early-onset Alzheimer’s.

The relentless rain fell on our “parade” until the last half hour. Water was running down the ditches, and the umbrellas didn’t keep the rain from soaking us. I didn’t mind the wet shirt and capris nearly as much as sloshing around with wet socks and shoes. Hey, it was still better than one-hundred degree heat. We didn’t let the rain dampen our spirits.  

In his poem, Longfellow isn’t speaking of physical rain. He is speaking of the dark times when we cling to the past and “days are dark and dreary.” It makes me think of a conversation I had with a caregiver recently. She was battling depression and felt overwhelmed taking care of her husband who has Alzheimer’s. Yet, while we talked, I could tell she had the courage and indomitable spirit to keep on keeping on.

We all deal with our own personal rainy days. Sometimes they are gentle showers, and we can just shrug them off. We can even soldier through those steady downpours without much ado. Then there are those times when the wind is gusting, the thunder is booming, and a torrential downpour flash floods all over our last ray of optimism.

Before you let rainy, turbulent times dampen your spirits, remember the sun is still above those pesky clouds. Sunshine after a rain is glorious; rays beam down like the word of God, and the rainbow promises better days to come.

Copyright © September 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Research—Climb the Highest Mountain

When you name your company after the highest mountain in North America, you know you have great expectations. A new company, Denali Therapeutics, has taken on the challenge of finding a cure for neurodegenerative diseases, including Alzheimer’s. Their task is formidable, and that is the reason they chose Denali for their name.

The former Genetech researchers began their venture with an astounding $217 million. Denali’s chairman of the board, Dr. Marc Tessier-Lavigne, believes that the time is right for breakthrough treatments for neurodegenerative diseases.

This group of scientists plan to break away from the study of drugs to block beta-amyloid. Their focus will be on genetics, which has led to effective drugs for cancer. Scientists have discovered new genes linked to brain diseases such as Alzheimer’s, ALS, and Parkinson’s. They believe these “degenogenes” will lead to a better outcome than previous drug studies.

Hallelujah! How often have you heard that if you keep trying the same thing you’ll have the same outcome? Alzheimer’s research is at an impasse. No one has found the illusive cure, or even a good treatment for the disease. It is time to try a complete new approach and these seem like just the guys to do it.

The company is looking at brain inflammation and the substances that develop between brain cells. They are concentrating on the factors that cause brain cells to die when a person develops a brain disease. They are already looking at twelve drug targets!

The brightest brains in the world have banded together to tackle the most baffling disease left to conquer. Now, they hope to engage the Food and Drug Administration in fast tracking brain drugs for Alzheimer’s as they did for HIV and other diseases.

Today I’m wearing a tee-shirt that says, “Your brain contains about 100 billion nerve cells. Each One is Worth Keeping Around.” I want to keep as many of those precious cells as I can. Don’t you?

Copyright © May 2015 by L.S. Fisher

http://earlyonset.blogspot.com

sources: http://www.prnewswire.com/news-releases/denali-therapeutics-launches-with-initial-investment-to-discover-and-develop-treatments-for-neurodegenerative-diseases-300083259.html

http://www.forbes.com/sites/matthewherper/2015/05/14/former-genentech-researchers-raise-217-million-for-company-to-fight-alzheimers-and-parkinsons/

Snapshot

I worked at the Missouri State Fair this year taking pictures in the Cooperative building. I’ve had this job before and always enjoyed handing over this personal souvenir of the fair. The pictures are taken in front of a backdrop with the year, a life-sized Buddy Bear, and the words “Fun at the Fair.” I snapped the pictures as soon as the babies stopped crying and the adults quit scowling. Another cooperative employee pulled them up on a computer screen and sent them to the printer.

Part of the fun is seeing the priceless expression on a newbie’s faces when he realizes the picture is free. “You aren’t going to get my phone number or email account number to pressure me to buy something else?” one man asked.

“No, we aren’t even going to ask your name,” I replied. “We just take a picture and give it to you.”

Having their picture taken is on some people’s “must do at the fair” list. They walk through the door and immediately get in line to have their picture taken. One man said, “We have fifteen of these on our refrigerator—one taken each year.” Another man said, “This is our annual family picture.” A woman said with surprise in her voice when she looked at the picture of her daughter, “She’s taller than Buddy Bear now!”

A lot of us have annual events that mark the passage of time. It may be a family reunion, a holiday, or the State Fair. It’s amazing to compare snapshots year-to-year and see how we have changed. It’s always a little bittersweet when you look at your children, or grandchildren, and visually time travel the distance from one year to the next in a veritable blink of an eye.

Pictures used to be harder to take and people my age didn’t grow up in front of digital cameras and cell phones that send pictures to the Internet in a few clicks. We had to buy rolls of film with 12 or 24 pictures on them. We snapped away and then sent the film off to be developed. So we paid for film, paid for photo development, and then threw away about half of the pictures because they didn’t “take.” The good thing about the old-fashioned way is we ended up with print photos. Now, I take hundreds of pictures and store them on my computer, and seldom have print copies of them.

Snapshots are a pictorial history of our lives. They can help us retrieve memories that are filed within the deepest recesses of our brains. Sometimes a picture can remind us of how the sun felt on our skin, or how the breeze smelled. Snapshots are a way of time travel without using any mythical machine.

When Jim went into the nursing home, we surrounded him with photos of family. He had several small photo albums to remind him of better times. Occasionally, he would look at a photo and say the names of the people in the pictures.

I brought pictures of Jim on my advocacy trips to Washington DC. The first picture in my small album was of Jim dressed in his western shirt, Levis, and cowboy hat before dementia changed him. The second picture was of the early stages, what I called his eccentric stage, when he wore a denim jacket decorated with pins and his battered nametag from Branson. In the middle stages, the picture was taken at the park and he wore a Kansas City Chief’s shirt and sweatpants. His eyes have a blank look. Then in the later stages, the picture showed Jim in the nursing home hallway sitting in his merry walker.

Now, most of the snapshots are put away, and I only look at them occasionally with smiles and, sometimes, tears. The pictures are a one-dimensional view of a full and rich lifetime of memories.

Special events roll around annually and in the meantime, we will snap away to fill our computers and photo albums with people we love and places we visit. Life goes on and we continue to take pictures and record today for tomorrow’s history.

Copyright © L. S. Fisher August 2011
http://earlyonset.blogspot.com/

Change of Scenery

Life can become so routine that a simple change of scenery can help us gain a new perspective. The change doesn’t have to be drastic; it can be subtle.

I usually work on my netbook in the living room. I have a desk that sits near the patio doors and it is an inspiring place to sit in the summertime. Or, I might use my lap desk and work from the comfort of my couch. This weekend, I decided to work in the kitchen, which has a view of the house next door (people watching), the road (car/tractor watching), a field (cow watching), and my sister-in-law’s bird feeders (bird watching). Geeze, it sure seems like I’m doing a lot of watching, doesn’t it?

So why would you care about my change of scenery? It makes a difference only as it applies to you. If you are a caregiver, a change of scenery is probably something you crave—like a tropical isle far away from your responsibilities. Doesn’t that sound good? Although it may sound like paradise, it most likely seems impossible.

Maybe a complete getaway isn’t on your possibility radar, whether it’s because of your responsibilities or an economic issue. What you can do is something a little simpler to provide a change of scenery. As a caregiver, you need respite. You need time to regroup and refresh so that you can continue to be a good caregiver.

Sometimes, just an afternoon getaway with friends and family, or to just have some alone time can give you a new perspective. A fresh view can revitalized your thinking and make you a better caregiver.

I visited with a caregiver who said she wanted to watch her dad so her mother could have some time away. She had offered, even pleaded with her mom, to let her help. Her mother insisted that she hire a caregiver, but couldn’t find one she trusted.

“What can we do?” the woman asked me. “She just won’t let us help, but I think she’s about to collapse.”

“Try a different angle,” I suggested. “Tell her you want to spend some alone time with your dad. Let her know this is something that would make you happy. Does he like to ride in the car?”

"Oh, yes,” she said. “He loves to go for drives.”

“Take him for a drive and stop at a park for a picnic. It will make him happier, and will give your mom some time to do something she likes to do.”

Had I talked to the mother, I would have encouraged her to take help when it is offered. If a caregiver keeps a list handy, it is easy to find something for family and friends to do. Do you need something from the grocery store? Would your neighbor like to mow the grass? People really do want to help, but they don’t know what to do.

If you are the person offering help to a caregiver, who don’t ever accept—look around to see how you can help. Can you help with some chores? Do you know of an activity that fits the interests of the person with dementia? Did he like to fish? Maybe you could take him fishing to give the caregiver a break. Did she like to cook? Bring the ingredients and make cookies together while you shoo the caregiver away.

I was healthy and in my forties when Jim developed dementia. Our children were grown and my employer allowed me some flexibility so that I was able to keep on working. I had a lot of family support from both Jim’s family and mine. When I needed to hire professionals, I used respite funds from my local Alzheimer’s Association chapter to help offset the expense.

At times, caregiver responsibilities were overwhelming for me, and I couldn’t even imagine how someone in his or her eighties could take care of a spouse. Alzheimer’s can last for years and too often the caregiver gives out before the person with dementia. This is especially true of the selfless caregiver who never takes a break. Being on duty 24/7 can break anyone, no matter how strong.

If you are a caregiver who never takes a break or enjoys a change of scenery from time to time, ask yourself this important question, “Who will take care of my loved one if my health fails?” In this situation, caregiving is all or nothing. If you do it all, you could very easily get to the point where you can’t do any of it. You are headed for a personal mental health crisis if you become mired down with responsibility and give up the activities you love. If you are in crisis, what good are you to your loved one who depends on you?

Copyright © Feb 2011 L. S. Fisher
http://earlyonset.blogspot.com

A Letter to the President: Sign the National Alzheimer’s Project Act

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure  your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com

The Brighter the Light, the Deeper the Shadows

This morning Pastor Jim talked about how God’s light chases away the darkness, and as usual, his message gave me food for thought. In a flash of light, the phrase came to my mind—the brighter the light, the deeper the shadows.

Our lives are made up of bright light and dark shadows. Some mornings we awaken with joy in our hearts, confident the day will shine bright upon us. Other days begin with a sense of something out of kilter, and as we orient ourselves to meet the day, a shadow may envelop us in gloom.

People surrounded by the brightest lights often plummet to the deepest shadows. Do we expect more from those who live in the limelight? Stars who flame the brightest fall from the sky and become lost in the shadows. Often we are envious of famous people and believe they lead charmed lives. Often it isn’t until their deaths that we learn about their dark sides, the demons of drugs, insecurity, or physical abuse they hid behind their bright smiles. Could we have seen the pain in their eyes if only we had looked closer? Could we tell that Marilyn stood in the shadow of Norma Jean? Could we have known that satisfying the public’s insatiable curiosity about Princess Diana cast a shadow over her that contributed to her death?

When a loved one has Alzheimer’s, we may spend many days living in the shadow of the life we used to have. I recently talked to a woman whose husband has a type of dementia that drastically changed his personality. For more than sixty years, their days were filled with travel, love, and laughter. Now, he is making her life miserable. He accuses her of cheating on him, calls her obscene names, says he hates her (and always has), that he wants a divorce, and on and on. Her heart is broken. She doesn’t want to put him in a nursing home, and she worries about him constantly even during the time we spent drinking coffee at a local restaurant.

Now, his doctor is trying to control his rage with medication, but so far nothing has worked. “I still love him,” she said with tears in her eyes, “but I don’t like him anymore.” Her life has moved into deepest shadows. The bright light that shone upon them seems like a distant memory, a lifetime ago, extinguished and vanished from her world.

If we can only remember that during the darkest times of our lives, the brightest light shines on us. The light is always there. It just happens to be shining at our backs while all we see is the shadow in front of us. As we move forward, the shadow moves with us, and we think it will never go away. During the most troubled times, we may be afraid that the shadow is a black hole and one more step will cause us to tumble into the abyss. From time to time, we must turn around and look over our shoulder to see the bright light, still there, steadfast.

Without light, there are no shadows. Do you remember making shadow puppets when you were younger? You place your hand in front of a bright light and form your hand into a shape. Your hand displaces the light, making a fun shadow on the wall. If you make a solid fist, the light won’t shine through your hand—you must actively make it happen.

The only way a shadow remains solid is if we do nothing to allow light to shine through. The slivers of brilliant light blazing through the shadows reaffirms our faith that the deeper the shadows, the brighter the light.

Copyright © November 2010 L. S. Fisher
http://earlyonset.blogspot.com

The Dance and Memory Walk

The Sedalia Memory Walk was Saturday and the sea of purple shirts showed our community support for loved ones with Alzheimer’s. Our Memory Walk was fun with a cake walk, Don the Balloon Man, refreshments, door prizes, raffle items, and dance routines by the young ladies from Center Stage Academy. Smiles and hugs made the rounds as we connected with others who had walked a mile in similar shoes, helping lighten each other’s load for the journeys we shared.

“Do you remember me?” a lady asked. “I worked at Four Seasons Living Center when Jim was there.” Jim was at Four Seasons four years and although her face looked familiar, I couldn’t come up with her name. “I’m Pat,” she said. “My husband wound up in the same room Jim had in the Alzheimer’s unit.”

“I remember you were having problems with your husband. I’m sorry to hear he had Alzheimer’s.”

“Yeah,” Pat said, “one day the staff found him standing on top of the sink.”

I had to laugh about that one. “Well, Jim did a lot of things, but he never did that!”

“You know, you just have to remember the funny things that happened,” she said. I agreed. It is much better to remember the times we smiled than to think about the distressing times.

Just before we began the walk, our master of ceremonies, Terry Kelley, sang “The Dance,” and I walked up to take a picture of him. The song was so touching, I gave Terry a hug. The tears started flowing because the words of that song are so true for me and for millions of caregivers.

My cousin Reta had taken a picture too, and she pulled me into a big bear hug. Connie Pope from Fair View hugged me too and said, “Are you all right.”

I think through the boo-hooing I let her know I was. “It’s that song,” I said.

Connie said, “Look around, Linda. See all these people here today? They wouldn’t be here if it hadn’t been for you and Jim. You are the one that started this whole thing.” I may have started it, but Fair View has been at every Memory Walk since the first one I coordinated in 1999.

The teams were introduced, then Memory Walk Coordinator Sheila Ream and I carried the Memory Walk banner and led our walkers down Memory Lane toward the fairgrounds. Sheila handed off the banner to her son Phillip who has helped us throughout the year. As we rounded the corner and saw the long line of walkers behind us, Phillip said, “I’ve looked forward to this all year.”

While the prizes were being announced, we handed out purple and white balloons for the balloon release. We used a marker to write our loved one’s names on the balloons. I put Jim’s name in a heart and wrote “To heaven with love.” I tied the balloon onto a basket handle, and while I signed a book, Jim’s balloon broke away and raced toward the sky.

That afternoon, after a leisurely soak in the bathtub, I put on PJs and settled in for the rest of the day. I got to spend the evening with my two youngest grandkids. My three-year-old grandson played with his race cars, and shouted, “Start your engines!” Before when he played, he called his driver Josh, after a relative he has seen race, but after the Memory Walk, he said the driver was Jim.

As our grandson played with his cars, I couldn’t help but think how much Jim enjoyed his grandkids. Jim never got to meet the three-year-old that often talks about “Grandpa Jim” and even pictures his grandpa as the tiny driver in his racing game.

Jim and I parented two wonderful sons. Our four fantastic grandchildren bring so much joy to my life. When I look at my sons and my grandkids, I know it is best that I never knew the heartbreak early onset dementia would bring to our family. I’ve been blessed with love, and the pain diminishes when compared to the dance that forever lives in my memories.

Copyright © September 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Comparing Apples to Pears

The Alzheimer’s Association sent a newsletter this week that says “pear” shaped women are at higher risk of developing Alzheimer’s than “apple” shaped women. This is the first health bulletin I recall that gives apple-shaped women, who carry excess weight around their waists, an advantage over pear-shaped ladies, who carry their weight on their hips and thighs.

I know most women would prefer to be slim and trim, but that becomes harder as we grow older. In fact, a recent obesity report says that slightly more than one-third of Americans are obese. Obesity in my home state of Missouri is 29.3 % and we weigh in at No. 12 in the state rankings.

If you don’t consider yourself to be obese, but merely overweight, you should check the guidelines. BMI (body mass index) is used to determine whether an adult is merely overweight or obese. If your index is in the 25-29.9 range, you are overweight. Anything over the magic 29.9 indicates obesity. If you don’t know your BMI, you can find free BMI calculators on the Web. One thing is obvious when I look at mine—I just need to be a couple of inches taller. Who would have ever thought my goal in life would be to have a BMI that falls into the “overweight” category.

I’ve been honest enough to rank myself with the apple shapes for many years. The extra weight around my middle makes it hard for me to tie my shoes and dang near impossible for me to polish my toenails. That is a major problem during the sandal-days of summer. The only thing I can say is that once I huff and puff until I get it done, the super-duper nail polish I buy stays in place for several weeks.

Finding my way around polishing my toenails doesn’t make me any healthier. Apple shapes have a greater risk of cardiovascular disease. The recommendation for both pear-shaped and apple-shaped women is, of course, to lose weight. Higher risks for any obesity-linked disease have to do with the type of fat stored in our bodies. Women who carry their weight on their behinds, hips and thighs store the kind of fat that increases their risk of Alzheimer’s. Cognitive tests show a relationship between the amount of fat and forgetfulness.

I have high cholesterol and triglycerides. My apple shape puts me at a higher risk for heart attack, diabetes, high blood pressure, and stroke. Holy cow, that should be enough to get me on a serious diet. It is easier to think of dieting right after my cholesterol and fat rich breakfast of bacon and eggs. I have been a bad, bad apple-shaped woman this morning. I don’t make a habit of eating such a breakfast, but there’s something about a Saturday morning that makes it irresistible. I’m usually in such a rush that I’m lucky to eat an English muffin or bagel. Skimping on breakfast goes against my upbringing.

I was raised to believe that a day should start with a good breakfast. Health and nutrition guides tout the importance of breakfast based on student test scores and adult productivity in the workplace. Any diet aficionado will tell you to eat your calories earlier in the day. I’m pretty sure most diets don’t recommend the kind of breakfast I ate this morning, but the general idea of taking time for breakfast is there.

The bottom line is that to reduce Alzheimer’s risk, pear-shaped women should lose weight. Don’t we all know that exercise and losing weight is part of a healthy lifestyle? I have a gym membership and, at least most of the time, opt for low calorie, no-sugar, omega rich foods, I lose probably fifty pounds a year, but it’s the same five pounds over and over.

Genetics determine our body shape, and we just need to do the best we can with our inheritance from our foremothers. Living a long life isn’t the only goal we have as intelligent human beings. We are stewards of our bodies and want to live happy, healthy, independent lives.

copyright July 2010 L. S. Fisher
http://earlyonset.blogspot.com

Let’s Cream Alzheimer’s

It’s hard to believe that our “Let’s Cream Alzheimer’s” Ice Cream Social and Balderdash Championship is only a week away. We don’t expect to make a lot of money at the social; in fact, we are relying on free will donations. What we hope to do is raise awareness of Alzheimer’s and our Memory Walk, and have fun, of course.

The ice cream social is a new idea and a learning experience for us and has been somewhat of a challenge because our Memory Walk committee is so small. We will be depending a lot on our friends at Fairview, relatives, and the youth group at church. Never having had a social before, we aren’t sure how much ice cream we’ll need. We don’t know if people will show up. Will we have enough Balderdash players?

The problem with a disease like Alzheimer’s is caregivers are often too tied down taking care of their loved ones to participate in fundraisers. A caregiver can be worn slick from having to make a lot of hard decisions. Those that have been through the gamut of caring for and losing a loved one to Alzheimer’s often want to put the past behind them. I can’t blame them for trying to get their lives back on an even keel.

Alzheimer’s is not a glamorous disease, and often one that people try to hide from the world. The person with dementia does not want to be treated like a child, and families may be embarrassed by their loved one’s behavior.

Too often caregivers don’t realize how much they can benefit from Alzheimer’s Association employees and volunteers. A speaker at one of our support group meetings helped me deal with Jim’s quirkiness. The speaker said to gauge behavior by asking yourself, “So what?” If the problem isn’t endangering anyone, “So what?”

His practical advice helped me through some sticky situations. One day Jim’s mom called to tell me he was out in the yard naked and wouldn’t come inside. She couldn’t get him to put his clothes back on. She was so distressed.

“I’ll be right home,” I assured her. “He probably had a reason for taking his clothes off. He’s either too hot, or he’s had an accident.”

“But he’s out in the yard without any clothes on.”

“Don’t worry about it,” I said. We lived in the country on a gravel road without much traffic. “So what if someone comes by? If they don’t want to see a naked man, they can keep their eyes on the road. After all, he’s is our yard.”

Recently, I saw a letter on a health Website written by a woman whose husband had Alzheimer’s. She was so embarrassed by her husband’s behavior that she didn’t want to take him out in public. She felt like people were staring at them. My comment was, “Jim didn’t notice people staring, and I got to the point where I didn’t care.”

We continued to go places that Jim enjoyed and didn’t worry about what others might think. I always considered Penny Braun, former executive director of the Mid-Missouri Chapter, to be my mentor about Alzheimer’s. Penny always said, “Ice cream solves a lot of problems.”
Following the advice of a wise lady, I took Jim to Dairy Queen almost daily.

A few days ago, I was looking for a specific picture of Jim. Digging through the boxes of pictures I don’t have in albums yet, I came across pictures of Jim in all stages of the disease. It tugged at my heart to see him in the early stages when he wore his cowboy hat, boots, and 501 Levis. He and his brother sat on the patio playing guitars together. I remember that day—Jim was having trouble finding the right chords to play. Jim, the master guitarist missing a simple chord change and forgetting the lyrics to songs he had sung for years.

Yes, those days are behind me now, but I believe those of us who have finished our journeys should help those who are still traveling. I hope we “cream” Alzheimer’s in my lifetime. All I know is that we can’t give up on finding a cure.

If some of us don’t step out of our comfort zone and put effort into bringing Alzheimer’s to the forefront, millions of Americans will always struggle with the daily challenges of caregiving and the heartache of a cruel and debilitating disease. We need to put the research spotlight on the challenge to end Alzheimer’s.

“Let’s Cream Alzheimer’s” is a good way to join a mission statement and a fun event. So if you are in Sedalia on June 19, join us 7 PM at the Celebration Center while we “cream” Alzheimer’s. It’s a time to relax and enjoy. The hardest decision you will need to make is “two scoops, or one?”

Copyright (c) June 2010 L. S. Fisher
http://earlyonset.blogspot.com/
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Making More Sense out of Fewer Dollars

At our last human resources meeting, our speaker’s topic was helping families in financial crisis. It made me think about families dealing with the emotional and economical strain when a loved one has dementia.

Our speaker, Cynthia Crawford, with the extension office, has seen an alarming increase in the number of people who find themselves in financial distress. No one wants to change their lifestyle, but hard economic times call for taking action to reduce the adverse consequences.

Employment has turned into shaky ground for a lot of people as financial woes beget more financial woes. Retired people see their nest eggs dwindle, not through spending, but through an unpredictable stock market or low interest rates on investments.

We all know that as our income increases, we proportionally step up our standard of living to match. This is perfectly acceptable, as long as we put money aside for emergencies—or as our parents always called it—for a rainy day.

When our family hits a financial crisis and income plummets, it is human nature to want to hold to our standard of living. In fact, our first reaction is denial that we need to take action. Our standard of living is closely connected to our self-esteem, and we begin to think we are failures if we can’t pay our country club dues.

First thing you need to do, according to Cynthia, is cut expenses. Pay your mortgage, utilities, and insurance first. If you don’t have enough left to pay other bills, call the people you owe and explain the circumstances. They will be more willing to work with you, if you make the first contact.

Giving your attention to what you need rather than just what you want can lower your stress levels. Eating at home is healthier and cuts costs in two ways. You pay less for meals and don’t throw away leftovers or food that spoiled while you pick up fast food at a drive-thru window.

Cynthia has some good advice for those who may lose their jobs. “Don’t sit in the basement and sink into depression.” If you have lost your job, you’ve lost precious time if you do not immediately sign up for unemployment. Unemployment is not retroactive and if you don’t sign up for it, you get nothing. I might add that if you lose your job because of Alzheimer’s, sign up for disability.

When Jim was diagnosed with dementia, I was fortunate to have a good job with health insurance benefits. We made it through the years he lived at home partly because we had always lived within our means and found great pleasure in the simple things in life—camping, fishing, and spending time with family and friends.

No matter how frugal you may be, long-term care may be beyond your means, and we were no exception. When my sons and I toured nursing homes, the first bit of information I learned was that I didn’t earn enough money to pay the monthly bill! Through the Alzheimer’s Association support group, I learned about division of assets. Sure, we had to sacrifice some of our dreams—we sold our lake property and Jim’s truck, cashed some CDs, and disposed of other possessions.

In personal life, as in business, downsizing is preferable to losing it all. I still live in the house Jim and I build with our own hands, and I’m not facing a lifetime of debt from his five-year stay in long-term care.

Other good advice from Cynthia is to ask for help. Check into local agencies that provide support and services that could help you through the transitional period while you bring your financial situation back into balance. To get help, you have to ask. People or agencies that can help you may not have any idea that you are in crisis.

If having a family member with dementia has thrown your financial world into a tailspin, don’t give into despair. Instead, look at it as a challenge to your ingenuity and grit. Check into all available resources, and ask for help. Take stock of your way of life and work out a plan to protect your family and the possessions that are important to you.

copyright (c) May 2010 L. S. Fisher
http://earlyonset.blogspot.com
http://boomerobics.blogspot.com

The Best Days of Our Lives

As we wade through the quagmire of life, nostalgia can slam into us with the force of a tidal wave. During the hardest times, it is easy to suffer a case of the used to be’s or might have been’s.

Unlike physical life, your emotional well-being benefits more from the occasional tidal wave than the predictability of the tide. Occasional teary eyes about losses can be a healthy release, but constant sadness wears you down and takes a toll on your health as grief robs you of any good days.

Dementia can be a sad and lonely disease. During the ten years of Jim’s dementia, I lived only in the present. I learned to accept him as he was at that moment without comparing him to the man he had been, or worrying about the changes ahead. I didn’t want to become emotionally entangled in reminiscences of better times. While I was a caregiver, any other time, even rough ones, might seem like the best days of my life.

Now, nearly five years after Jim’s death, I don’t dread memories as much. They still sneak up on me and catch me off guard. Yesterday, I opened my patio door to let some fresh spring air into my home, and lit a candle to add a subtle berry scent. Lighting the candle made me pause as a rush of memories washed over me.

A few minutes later, I was putting away the nametag from the Alzheimer’s Action Summit and a basket with Jim’s driver’s license and old eyeglasses caught my attention. I picked up the license and looked at his picture, saw his vital statistics, and noted with sadness that the license expired in 1998. When the picture was taken we didn’t know Jim would develop dementia. Jim is gaunt in the photo, and I remember how concerned we were for him at the time. Inexplicably, he had gone through a period of weight loss, and my heart ached when I held him in my arms and could feel his ribs.

It is strange how some of the smallest routine moments can catapult us into another day or time of our lives. In retrospect, your recollections may be dominated with only good, or entirely bad, memories rather than embracing life’s balance. If you remember only the bad, you let past failures or traumas ruin your present. If you remember only the good, you lose the value of lessons learned and will repeat the same mistakes. Memories, like life, need balance.

Looking back at your life is like looking at a picture of a scenic landscape. A gnarled, barren tree may make the picture more appealing than perfection. You don’t feel sorry for the tree—you just see it as a natural development of time and weather.

We all develop our own version of gnarled trees. It may be the result of hard economic times, poor health, addiction, broken relationships, death, or a myriad of calamities.

Sometimes an entire forest is decimated by a wildfire, and we see only smoldering remains of a previously lush, living landscape. The circle of life embraces us and gives us comfort even when we seem to be surrounded by charred ruins. After the healing power of time, shoots push through the soil, and fast growing trees and shrubs cover the blackened earth.

Part of the secret of letting go of the past is to acknowledge you can’t go back and change what has already happened. You don’t need to long for how your life was at one time, or regret how different your life could have been if you had made better choices. You can only move forward with confidence that the best days of your life are ahead of you, and the best one of all is today.

copyright (c) March 2010 L. S. Fisher
http://earlyonset.blogspot.com/

Pants on the Ground

I missed the original American Idol show where General Larry Platt performed his show-stopping “Pants on the Ground.” Our pastor played the video at the beginning of his message the following Sunday and ended with a stirring rendition of his version—“Made from the Ground.”

After a few Google searches, it became obvious to me that the General had become an overnight global sensation. What was Larry Platt doing the other 62 years of his life? He isn’t called General because he was in the military—he was a general in the war against injustice. He was a civil rights activist who was beaten on the Bloody Monday March. He was recognized September 4, 2001, for his heroic efforts during the civil rights movement. In other words, he was an unsung hero for the things he believed in his heart to be important.

We all know these unsung heroes. They are the people who not only support the cause they believe in, they throw heart and soul in the effort. They brush obstacles aside with super-human strength.

I have been fortunate to know many of the unsung heroes in the battle against Alzheimer’s. I’ve know people with the disease who looked beyond their own tragedy and found a mission. Tracy Mobley, diagnosed at 38, worked tirelessly on Camp Building Bridges for children whose parents have Alzheimer’s or a related dementia. Tracy pieced together a Memory Quilt in honor of people with the disease. She’s an advocate and volunteer for the Alzheimer’s Association.

Caregivers are heroes too. Karen Henley’s life is focused around caring for her husband, Mike. She doesn’t seek recognition for her labor of love. Caring for a loved one with Alzheimer’s is one of the most challenging jobs a person can undertake. Caregivers know the meaning of unconditional love.

Alzheimer’s staff and volunteers are the rank and file soldiers. Alzheimer’s staff shares their expertise with the volunteers to increase the size of the army.

Penny Braun began her work with the Alzheimer’s Association as a volunteer. She went on to become the first executive director of the Mid-Missouri Chapter. She turned a one-person office into a fully staffed dynamic entity serving 29 Missouri counties. Penny is a hero in the war against Alzheimer’s.

Volunteers make up the largest force in any organization. When it comes to Alzheimer’s volunteers, I think of Ted Distler’s smiling face. For many years, Ted has motivated, prodded, and led hundreds of people into being involved in Memory Walk. Ted works tirelessly to support other caregivers and to share his experiences and knowledge with his community.

If good works ever went viral like the catchy tune and words of “Pants on the Ground” these special people and millions of other motivated volunteers would become household names.

The General himself said that he hoped “Pants on the Ground” didn’t overshadow his civil rights work. That makes the General a pretty smart man as far as I’m concerned. Instant fame didn’t make him forget that life isn’t just one shining moment, it involves years of plugging away at the causes you believe in.

I hope General Larry Platt’s inspiration to the world isn’t just the tune, but the man singing it. Otherwise, the pants on the ground merely drag out our tracks and erase the footprints of our legacy.

Where is the Sun on This Foggy Day?

For the past three days fog has thrown a gloomy blanket over my world. I can’t see the sun, but, by golly, I know it’s there.

The haze is depressing and has awakened a philosophical streak in me. It reminds me of the fog that cast a net over us when Jim was diagnosed with “an Alzheimer’s type of dementia.”

During that dark time, determination and faith became the saving grace that kept the fog at bay. The knowledge that no one had defeated Alzheimer’s left us crushed beneath the miasma that took our breath away.

Fog makes me uncomfortable, and I feel threatened when driving with limited visibility. The only way to see the road is to dim the lights and cast them downward. If you leave the lights on bright, swirling grey clouds make you dizzy and you can’t see a safe distance ahead.

I’ve battled with fog a few times, and one night I thought the fog was going to win. I left the nursing home after spending time with Jim, headed for my son’s house. I took a shortcut to the highway on a narrow blacktop road and hit a spot where dense fog obstructed my view. When I could no longer see the pavement, I stopped and hoped I wasn’t parked in the middle of the highway.

I called Eric and told him I wasn’t sure where I was and couldn’t see anything. “I’m afraid a car will come along and hit me,” I said. I was beyond worried—I was scared and headed toward panic.

“Just stay put for a while and it will lift,” he said. “If the fog is so thick you can’t see anything, no one else will be moving either.”

Unfortunately, I never had much confidence in every driver having common sense. Time seemed to stand still while I waited for the fog to lift. I looked at a solid wall of grey, my stomach tied in knots.

Eventually, the fog cleared, and I resumed the journey to my son’s house. After my visit, I was apprehensive about driving home. Eric got in his truck and led the way. Following his taillights was reassuring, and the fog didn’t seem to be so scary.

Life can leave us feeling like we are all alone and lost in a fog. Alzheimer’s can seem like a solid wall blocking our path.

When circumstances bring us to a complete halt, we need to pause, take a few deep breaths to stave off the panic attack, and have faith the fog will lift. The darkness will end and the sun will burn through the haze.

Fog’s life is limited, but the sun always shines. Fog may obscure the reassuring sunlight, but at the perfect moment golden rays will burst forth in all its glory.

Turtles, Tunnels, and Denial

Turtles, our slow-natured friends, are the beneficiaries of a government sponsored windfall. Plans are afoot to provide a $3 million tunnel for Florida turtles to allow safe passage beneath the busy highway.

We wouldn’t want turtles to be hit by cars and become unwilling missiles. Does the so-called expert that says this happens think turtles are a top-secret weapon of mass destruction?

I will admit that living in rural Missouri, I’ve run over my share of turtles. I’ve seen others that met with a sad fate while simply trying to cross a country road or state highway.

I hate to hit a turtle. I’ve never seen one become a missile, but I’ve certainly heard the sickening “plop” as the shell crunches. It makes me feel bad to know I’ve unwittingly killed a living creature. Sometimes, I’m lucky and straddle the little slowpokes and spare their lives. Other times, we are both unlucky.

Jim created his own turtle/terrapin crossings. When he spotted one of the little fellows in the road, he stopped the car, got out, and carried the docile creature across the road. Hopefully, he saved as many lives as I took with my carelessness.

One day my son had hitched a ride home from school with one of his buddies. They saw a turtle in the road, and Eric told his friend that his dad helped them across the road so they wouldn’t get hit by a car. Eric’s friend was so inspired by the story, he pulled over and jumped out of his vehicle. As he reached for the turtle, instead of hiding in his shell, the turtle viciously snapped at the hand that was trying to save him. All turtles are not created equal in the humble department and the Good Samaritan has the scars to prove it.

Just think how long the crossing takes when the turtle stops and pulls in all appendages and sits there all snug inside his shell thinking he is safe. Instead of the shell providing a safe haven, it just means he is in harm’s way longer.

It’s easy for us to see that the turtle is in denial of the danger lurking around the next corner. We understand denial because it is an all too human emotion.

I heard a story of denial at lunch yesterday. A group of us attended a luncheon prior to an educational program about the genetic studies being done on Alzheimer’s disease. I sat next to a nurse who provides counseling for families dealing with Alzheimer’s. She mentioned her own denial when her mother first displayed symptoms of dementia. Logically, she knew her mother’s behavior couldn’t be explained away, but emotionally, she grasped at hope born from denial.

When you are in denial, you are inside the shell with the turtle. It makes the world feel safer, but it can put you and your loved one in harm’s way. While you are in denial, a family member with dementia may continue to drive when they shouldn’t. You may leave for a few hours and return to an empty house because your loved one has wandered. Your denial makes you a turtle in the middle of the road with a speeding car fast approaching.

Wouldn’t we like to keep our loved ones safe? I’m sure that if $3 million would keep our families safe, we would be willing to pay it if we had it. The key word is “if”. A certain faction of our society thinks no amount of money is too much to keep the world safe for small critters, but don’t worry about how the money is being taken away from our fellow humans. How much safer could the highway be made with $3 million? How many human lives could be saved with the money used to “protect” turtles?

The problem is turtles cannot be kept safe by a tunnel. Perhaps the turtles will be safe while they are in the tunnel, but the big dangerous world exists on both sides. No amount of taxpayer’s money will keep the turtles safe. No living creature lives in a vacuum and no tunnel could be big enough or long enough to protect life except for a fleeting moment.

Not so Friendly Competition

This year at the fair, I controlled the energy bicycle. Dawn, one of my co-workers, gave me a quick demonstration when I took over for her.

“Flip on the fan first,” she said. “Anyone can get that going.” The idea was to peddle the bicycle to generate enough energy to light up a series of items. “I do the florescent light next, because it’s easy too.”

I gave it a try. I got the fan going and the florescent light flickered feebly. Then, the bike felt like it hit a brick wall—and I was done.

I felt like a Carney beckoning people to step up and show their skill. Most people could start the fan, a lamp, a teensy TV, and the florescent bulb, but when I switched on the 25 watt bulb, the game was over. Another loser! Five bulbs remained unlit.

My boss dropped by the Co-op Building and hopped on the bike to show what he could do. He pumped away without showing any exertion—ah, to have the energy of the young again. I flipped switches working my way from bottom to top. He began to breathe harder and with only two switches left he couldn’t budge the pedals.

About an hour later a teenager wanted to ride the bike. Her mom signed the permission slip, and she hopped on. She peddled, and I flipped switches. Her face turned red, but she kept on pumping. She stopped at the same level as my boss.

“You’re tied for first,” I told her. Her mom immediately signed a slip for herself and tied the daughter. Not to be outdone, Dad straddled the bike. He peddled until his face was beet red, but he slightly edged out his daughter and wife by making the last light burn brighter. I really hoped he wasn’t going to have a heart attack on my watch.

“You must be a competitive family,” I remarked to the mother at their not-so-friendly competition.

“Oh, yes, we definitely are!” she said.

“I understand,” I said. “I come from a competitive family too.”

Could that be an understatement? I thought Jim and I were going to come to blows a few times over cards. He and Aunt Nita were the most infuriating pitch players I ever saw in my life. Uncle Johnny and I couldn’t seem to beat them very often. They bid like lunatics. “I’ll bid eight, on my partner’s hand,” Jim would say. Then he would toss a small card out, but if I put a point on it, Aunt Nita would throw a bigger card on. The next thing you knew, she would dominate the round with all the big trumps.

When Jim developed dementia, he became confused about which cards to play. His mom helped him. He was competitive enough to bid. From the look on his mom’s face, I knew he was still bidding his partner’s hand. From experience, I knew it would work most of the time.

Jim was always competitive with his Uncle Vic and Uncle Orvie. They played checkers at a furious level. The bet was the checkerboard itself. The loser had to sign away his championship and give the board to the winner. Uncle Vic had possession of the checkerboard when he died unexpectedly. He left the checkerboard and the championship to Jim.

Jim and Uncle Orvie were Mario Karts aficionados. Uncle Orvie’s rheumatoid arthritis twisted his fingers into odd shapes. You would think Jim would have cut his uncle some slack due to his handicap. No way. Those two played game after game. “Let’s go for the best two out of three,” the loser would say. “Now let’s play for the championship—the best nine out of ten!” On and on they played. Each wanting to win the fierce, not-always-friendly competition.

In “You’re Going the Wrong Way” published in A Cup of Comfort for Families Touched by Alzheimer’s I describe my dismal Mario Kart experience. I not only couldn’t beat Jim, I couldn’t keep my kart on the track going in the correct direction.

“I don’t know how to play,” I would tell Jim after I lost another game. “Which buttons do I push?”

His aphasia had limited his communication skills and he couldn’t explain the game to me. “I have no idea,” he would say, using one of his stock phrases.

Right before he zipped Toad across the finish line, he would remind me, “You’re going the wrong way!”

He would tell me how to play if he could, I always reassured myself. Surely that was not the gleam of not-so-friendly competition in his eyes. Or was it?

Music Therapy Stimulates Memories

Music stimulates our memories and unveils feelings we thought we had forgotten. Have you ever noticed how a song can bring back a flood of emotions? A familiar melody can take us back in time, and although our physical appearance might shriek middle-age, our emotional age is the era of the song.

If you don’t think music can transform you internally, pay attention to the songs that give you happy feet. Even if your body isn’t up to the dance moves of your youth, your heart hears the music and your feet want to dance.

Throughout the years of our marriage, Jim played his guitar nearly every morning. He called it his therapy. At work I often listen to KDRO radio, a local station that plays country music and almost every song makes me think of Jim. One of the saddest things about dementia was when Jim began to have trouble playing his guitar. One day he asked me to tune his guitar. Jim, the man with perfect pitch, wanted tone-deaf me to attempt something I had never done in my life. I knew his request was beyond my abilities, but I called his brother and he took care of it.

Music has been a family tradition in my mom’s family. I grew up thinking that all normal families played guitars and sang. On Saturday nights my mom and her brothers, neighbors, and friends sat on wooden kitchen chairs and played music for hours. On those Saturdays at Grandma and Grandpa Whittle’s house, my Aunt Venetia always sang my grandma’s favorite gospel songs.

My mom, Aunt Labetta, Jimmy (my brother), cousin Reta, and Gene Branch play music at the nursing home one Saturday a month. Recently, I dropped by Good Shepherd Nursing Home in Versailles to listen to the music. I wound my way through the halls to the dining room where they were set up on the stage. Several residents tapped their toes and sang along with the songs they knew. At the front of the room, my Aunt Venetia sat dozing in her wheelchair while my cousin Jan attended to her.

My mom and Aunt Labetta, as always, dedicated a special song to their sister-in-law. Aunt Venetia is in the late stages of Alzheimer’s, yet she perks up when she hears the music she’s loved her entire life.

When Jim was in the nursing home, his favorite channel was GAC. His eyes were glued to the set when his favorite entertainers performed. His foot would tap in time to the music that he once effortlessly played.

With the special bond music has to our memories, it is no wonder that eyes sparkle at certain songs. Sometimes the sparkle is caused by unshed tears, but often it’s just memories dancing in our brains that bring life to our eyes.