Life Is...

I just went on a nine-day vacation with my mom and sisters—our Girls Trip 2019. We had a relaxing time in both the mountains and on the beach. Nine days without thinking about obligations brings to mind that…

Life Is Good: In Savannah, GA, we took a trolley tour of old Savannah. Our one stop was at the Riverwalk. We ate lunch at the Shrimp Factory and visited a couple of shops. One of them, Fannie’s Your Aunt, offered Life Is Good t-shirts. I found two that caught my eye and both had to do with music. Since I’ve joined the Capps Family Band, I practice my songs while I walk the dog. Did you know that singing lowers stress and helps with mental health? Singing also boosts memory.

Life Is Exasperating: Back home, life settled into the normal routine. Get up, take the dog out, fix breakfast, clean up, etc., etc. Most of all, I spent hours and hours trying to catch up on all the work I skipped out on while enjoying my vacation. Isn’t that the downside of vacation? I’ve never had those little elves come in and do my work while I’m out of town.

Life Is Predictable: I can’t help but notice that life is predictable. I can always count on the predictability of a normal day. The sun comes up every morning in the east and sets in the west. It rains from time-to-time, usually when we need to do outside work, and the grass grows faster than we can cut it. This was going to be the year we kept ahead of it—until it rained and rained and rained. We can’t mow our lawn when the yard has the squishiness of a rice paddy.

Life Is Scary: It’s hard to go through a very long period without a heart-stopping close call on the highway. There’s nothing quite as fun as topping a hill and seeing cars headed your way in both lanes. Even in the safety of my home, I’ve had a few scares—one as recently as this morning. I was cooking breakfast and sipping my coffee while I watched the sausage brown. Normal early morning…until…I realized the kitchen was filling up with smoke. I turned around and smoke billowed from beneath the cabinets and along the countertop. I opened cabinet doors although I couldn’t figure out how a fire could start in the cabinets.

“Harold, Harold!” I yelled. “There’s smoke everywhere and I can’t figure out where it’s coming from!” He came into the kitchen, looked around, calmly, which by-the-way was totally irritating when I was in a panic. He reached over and unplugged the toaster where our normally pale toast that has to be pushed down twice was completely charred.

Life Is Mysterious: I could regale you with stories of mysterious events in my life, but that would be a book of its own. Just this week, I was washing dishes and began to sing “Que Sera Sera,” which to be honest, I hadn’t even thought of in years. The next day, Doris Day passed away. Just a little odd, I thought. Last night, Harold was watching an old Law and Order rerun on the TV in the bedroom, and I decided to catch up on the pile of newspapers I hadn’t read. I sat down on the couch in our kitchen and picked up a random newspaper. An article about the measles caught my eye. As I began to read, I could hear the medical examiner on the TV program “testifying” about how a child had died from the measles. As I read the next two lines, I was reading the words she was using to testify. That was mysterious and a little bit creepy.

Life Is Not Fair: I always try to be fair, but there isn’t too much fair about life. Good people have terrible things happen to them and bad people have prosperity and lead charmed lives. That’s just the way it goes. Jim was a good person and certainly did not deserve to have a horrible disease that robbed him of his most precious memories.

Life Is Attitude: How you look at life determines how life looks at you. If you see the negative, the negative consumes you. If you see the positive and spiritual uplifting side of life, it returns the favor. Life is good if you allow it to be.

Copyright © May 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Road Less Traveled

A group of my former classmates and I are planning our fifty year class reunion. Several have brought in photos taken on our senior trip to the Smoky Mountains. As they look at the tiny, blurry photos and reminisce, I realize how little I remember about the trip. I remembered the Grand Ole Opry. I remembered the towns of Gatlinburg and Chattanooga, Tennessee. I remembered traveling to the top of the mountain in a cable car. But as far as the shenanigans—the fake gun fight, the bathroom window on the bus falling out, a group going out looking for a place to bowl and getting stopped by the local police—I have zero recollection.

“I know I wasn’t drunk, so I don’t know why I can’t remember all the things you remember,” I said to the group.

“I can’t remember much about it either,” Cindy admitted.

Maybe the reason the memory of the senior trip faded so quickly for me was because Jim and I traveled so much. We always went west, but once in a while I would suggest the Smoky Mountains, but it just didn’t work into our plans.

Now, oddly enough, on close to the fiftieth anniversary of the senior trip, we will be taking our girls’ trip to South Carolina. On the way, we will be going through the Smoky Mountains. For me, this is an area I haven’t been to in half a century. It seems just a little odd that I went to a meeting with the planning committee and drove a few blocks to my mom’s house to plan a trip to the same area.

One thing I’m sure of—a lot will have changed in fifty years. If nothing else, I have changed. I can’t help but wonder if I’ll visit certain sites that will bring about a feeling of déjà vu. Will the places call forth events stored in locked parts of my brain? Will I feel sadness for those in the class of ’69 who now reside in eternity and not with us?

I have heard that some of my former classmates have memory problems. I don’t know that anyone has been diagnosed with dementia, but then not everyone receives a diagnosis. According to the statistics, one in ten of us will develop Alzheimer’s in our lifetimes. We have already reached the age of vulnerability, and are too old for younger onset dementia.

It’s a little bit concerning that I can’t remember much at all about the senior trip, but it would be devastating to not know the people I love. Recently, I’ve visited with two men who held an important role in my life. One looked at me and said, “I don’t know who you are.” So, I told him who I was. The other gave me a hug, but never talked or showed any recognition in his eyes. You have to hate a disease that does that to people you love.

Although it made me sad, I didn’t regret seeing either of them. One, I was told, was just having a bad day. The other, I was told, can’t remember anything anymore. His family is just spending time with him and helping him enjoy life as much as they can.

Unfortunately, the road less traveled is often the one that leads to special care units in nursing homes. Excuses abound, but sometimes people just don’t have the fortitude to give unconditional love to those who no longer seem to even know who they are.

In the end, when they can’t remember you, you still remember them. If the person you are hesitating to visit played a major role in your life, you are cheating yourself. If you don’t share hugs, words of love, and bring a smile to someone’s face, you are the big loser.

Travel that road. Take the time to hold fast to the memories that linger in your heart. Life has robbed a person with dementia of their memories, and he lives only in the moment. The more moments you share with your loved one, the more happiness you bring into his life, and yours. As we travel through life, we need to enjoy the journey before we reach the final destination.  

Copyright © April 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Cruel April

Some dates are seared into our memories and leave scars on our hearts. For me, that date is April 18, 2005.

When I flipped my calendar to April, I didn’t think of flowers, thunderstorms, morel mushrooms, or even mowing the grass. I mentally, went back in time and remembered that April was the cruel month…when the beginning melded into the end. The good guy lost, and the relentless disease won.

I’d been so busy this month that it didn’t seem possible that today was already the eighteenth day of the month. The month began in Washington DC at the Alzheimer’s Forum. Then, there was the catching up to do with all the projects I’d put on hold to take time away, including the annual scourge known as taxes.

Today, the eighteenth of April, was a busy day. At nine o’clock this morning, I drove to Versailles for a 50-year class reunion committee meeting. Reconnecting with my former classmates has been a positive experience. As usual, when our work was done, we went to lunch.

After lunch, I picked up my mom and my aunt to go to the nursing home for our monthly music gig. We began setup at 2:00, and began our hour-long program at 2:30. One of my former classmates had brought some scanned photos for the reunion book and stayed to watch the program. “This is a lot of talent in one family,” she said.

My mom and I had a short visit over a cup of coffee, and then I headed home. The sun was setting in the west by the time I pulled into the garage. The day was almost done. The black aura lifted some as the day dwindled down.

Tonight, I put the leash on the dog, slipped on my coat, and stepped out into the darkness. The clouds parted and the moon slid into view. 

As often happens in the still of the night I was left with my thoughts and memories. The sorrow seeped into the fiber of my being, and hid beneath the surface. I thought about how Jim had always been a part of my life, and always would be. I remembered how Jim, a man of faith, told me that death was merely closing one door and opening another.

A cold breeze sent shivers through my body. It was as if he had whispered to my heart: the end has melded into the beginning, and the good guy won after all.

Copyright © April 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Cherry Blossoms and Soaring Kites

My trip to the Alzheimer’s Forum this year coincided with the Cherry Blossom Festival and the Blossom Kite Festival. It so happened that when my traveling buddy Jennifer and I ventured out, we ran into human traffic jams every step of the way. It was a little claustrophobic at times, especially when we were stuck at the metro exit behind a crowd of slow moving people.

Capitol Hill didn’t seem quite as congested as usual this year and for the most part the security lines moved and a decent pace. It helped that we weren’t rushed between our appointments.

After our forum training and updates on all things Alzheimer’s, we were prepared to speak of Alzheimer’s as the public health crisis it has become. We had four asks for our legislators:

1)      Increase Alzheimer’s research funding at the National Institutes of Health (NIH) by $350 million for fiscal year 2020. Currently, 5.8 million Americans are living with Alzheimer’s disease. Without a medical breakthrough, that number will triple in a generation!

2)      Support $20 million in fiscal year 2020 to implement the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention (CDC). BOLD will establish Alzheimer’s and Related Dementias Public Health Centers of Excellence, fund public health departments, and increase data analysis and timely reporting.

3)      Co-sponsor the Improving HOPE for Alzheimer’s Act (S. 880/H.R. 1873). In 2017, only 1% of seniors living with Alzheimer’s received the Medicare care planning benefit. We must educate providers and individuals with dementia about available care planning services.

4)      Co-sponsor the Younger-Onset Alzheimer’s Disease Act (S. 901/HR 1903). This would allow individuals with younger-onset dementia to receive services provided under the Older Americans Act, currently available only to Americans over the age of 60.

Our first visit of the day was with Senator Blunt who has become a champion for Alzheimer’s. He greeted us, began to speak of the tremendous cost of Alzheimer’s, and compared it to the defense budget.

Next, the Missouri delegation attended the Senate Hearing on Alzheimer’s disease. In his remarks, Senator Hawley recognized our fellow advocate Lonni Schicker and briefly told about her younger-onset diagnosis. After the hearing, we visited his office.

My last meeting of the day was with Congresswoman Vicky Hartzler’s office. I only met with her briefly since she had to go to the floor for a vote. We finished our visit with her senior legislative assistant, Bryan McVae.

After speaking to our legislators, we came away with the feeling that we are in this battle together. This is different from when we used to have to spend all our time convincing them that Alzheimer’s affects all of us in one way or another. Our hopes are flying as high as a Blossom Festival kite that by working together, we can, and will, find a cure.

For the past few years, I’ve stayed an extra night to avoid the nail biting rush to the airport. I’d much rather be way early than just a few minutes too late to catch a flight home. At the airport, we came across some fellow advocates for a “selfie.” Then, we disbursed to our separate homes to continue the fight to end Alzheimer’s.

Copyright © April 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

See Al? Be Like Al

Al

I'm in Washington DC for my 19th Alzheimer's Forum. You would think after 19 times, it would be the same-old, same-old, but you would be wrong.

Here it is almost April, and we had April Fool's a few days early. After a short warm snap, Jennifer and I had no more gotten to the airport that snow began to fall. We were flying Southwest so we had no assigned seats, but Jennifer's mascot elephant, Al, held my seat for me until I boarded the plane. A disembodied voice from the cockpit ask us to be patient while they de-iced the plane.

I was curious since I had never been on a plane that had to be de-iced. Pretty soon, a cart pulled up, with a bold sign letting us know that "The Ice Man" was on the job. A ten-second squirt and we were off and running.

After grabbing our two purple suitcases off the carousel, Jennifer and I embarked on the second new experience of the day. I've always caught a cab to the hotel, but Jennifer had an account, and we were to be picked up by a white Toyota by a Lyft driver named Olga.

We were both excited to be in DC on a pleasant, sun shiny day and didn't mind waiting a few minutes for Olga to arrive. Jennifer was in contact with her and she assured us she was nearby. As we stood there viewing the screen, a young man standing nearby said, "Are you Jennifer?"

We found out it was his first attempt with Lyft, but he was sharing a ride with us. Jared was going to a different hotel. They both received notification that Olga had arrived and she was in a blue Camry. We spotted her and loaded up. Lucky for us, all Jared had was a backpack because the truck was full of purple.

Al was in the trunk in the carry on. We should have kept him as a navigator. Olga told us it was her first day with Lyft after working with Uber for six years. So, here we were, a car full of newbies heading into DC proper looking for not one, but two hotel. Jared was closer so the navigation system was set up to let him off first. Olga took off headed in the direction of the nav, and I could almost hear Al screaming in the trunk, "I don't think she knows where she's going!"

After we had made several exits, it looked to me like we were closer our hotel located near the zoo that a hotel close to the White House. After all, I'd been on several harrowing taxi drives to the same hotel.

Jared pulled up navigation on his phone. "We're pretty close to our hotel," I said from the back seat. I pulled up my own map. It said we were within six minutes of our hotel.

Olga made a U-turn and headed back across the bridge we had just crossed. Jared tried to be helpful, but she still missed an exit or two, narrowly missed crashing into a car that cut in front of us. Thankfully, her car had great brakes!

"We are getting a nice tour of the city," I remarked.

Finally, after about forty minutes, we found Jared's hotel. By then, my phone had "re-routed" several times and Olga was headed in the right direction. Her phone kept telling her to drop Jared off instead of telling her how to get to our hotel. Eventually, her navigation and mine agreed. I saw the landmarks I was used to seeing including Marilyn Monroe's face on a building. "We are close," I told Olga. I saw the Omni Shoreham where we'll be staying the last night. I saw CVS, familiar restaurants. "This is our neighborhood," I told Jennifer.

Olga zigged when she should have zagged. "Here it is," she said. It was the back entrance. "All you need to do is go around the block and you can let us off in the front," I said. She took off, flew past the front entrance. Oops. I finally saw a side entrance we often used. "Here," I said. "Let us off here."

"Are you sure?" she asked. "I don't think this is the right hotel." Well, the name was right above the door.

When we got to our room and unpacked Al, he had a smug look on his face.

We immediately took off to look at the monuments, cherry blossoms, and the kite flying. As we rushed off to get caught up in the humongous crowds, Al stayed behind in the room patiently waiting for us to attend to the business we came to DC to accomplish.

He wears his purple beads, his AIM (Alzheimer's Impact Movement) pin, and his Walk to End Alzheimer's Team Captain button. Al is ready and waiting.

Be patient, Al. In a few hours, we will be all business and determination. We will be like Al and fight to #ENDALZ.

Ring of Fire

A few days ago, I was listening to some songs on my Kindle in an attempt to find something to sing with the Capps Family Band at our nursing home gigs. I listened to Patsy Cline, Emmylou Harris, Ray Price, Jim Reeves…and the list goes on. Eventually, I went out of YouTube and decided to go to bed.

After I was ready for bed, I woke up my Kindle and clicked on the Book tab. I heard the intro to the Johnny Cash version of “Ring of Fire” with its unmistakable mariachi horns. The music stopped when I opened the book I’d been reading. The book? Ring of Fire by Brad Taylor.

Some might call that a coincidence, but my goose bumps classified the experience as more “weird” than “coincidental.” It seemed it was a message of some kind, but I didn’t have a clue as to what it could possibly mean.

So if we think of love circled with a fiery ring, I believe you could say that nothing could penetrate that ring to destroy the all-consuming love within its circle. However you look at it, fire in the song is symbolic. Fire has many symbolic meanings, and I found the one that could mean something to me: Issues you are consumed by—a strong passion or prolonged obsession. Regardless of that stalker-esque phrase, I choose to relate it to my passion for being an Alzheimer’s advocate.

I contacted the Alzheimer’s Association soon after Jim was diagnosed with an Alzheimer’s type of dementia. They connected me to a support group. Both the local chapter and the national Alzheimer’s Association sent newsletters. Through the newsletters, I learned about a walk in our hometown known then as the “Memory Walk.” Jim and I registered for the walk and on walk day discovered we were the only ones from our town. The next year, I became an Alzheimer’s volunteer and coordinated the walk.

When my daughter-in-law and I tried to get corporate sponsors, we realized that people didn’t know much about Alzheimer’s. They often referred to it as “old timers” disease. They thought age caused it and it just happened to elderly people. No big deal—just a part of growing old. The first priority was to educate them that Alzheimer’s was a degenerative brain disease.

I went to Washington, DC, for the Alzheimer’s Forum for the first time in 2001. By then, Jim had been in long-term care for a year. We went to ask for $1 billion for Alzheimer’s research and for legislation to help the families dealing with Alzheimer’s. It didn’t take long for me to find out that most senators and representatives didn’t know much more about Alzheimer’s disease than the folks back home. After much persuasive talk, we got a tiny fraction of our lofty goal. This pattern was repeated year after year. Sometimes we gained a small amount, other times we held steady, but a few times our funding was decreased.

A lot of things have changed since my first trip to DC. As I look forward to my 19^th trip next week, I know we will meet with legislators who know exactly what Alzheimer’s is and how devastating it is to the families and to our government. Our senators and representatives are important partners in the fight to end Alzheimer’s.

Yes, we’ve won many battles, but now we need to win the war. Current research funding for Alzheimer’s is beyond our wildest dreams of nineteen years ago. The National Alzheimer’s Plan was passed in 2012 to find an effective treatment or cure by 2025. It seemed like we had plenty of time to meet our goals, but time has gone by with promising treatments falling short of the target.

We must fund successful research and break through the ring of fire that separates Alzheimer’s disease from a cure. In the meantime, we need to surround persons with dementia and their care partners with a circle of love and caring.

Before Johnny Cash recorded “Ring of Fire,” he had a dream of the mariachi horns. He made his dream come true by taking action. Well, I have dreams too, and I plan to take action at the Alzheimer’s Advocacy Forum on April 2.

Copyright © March 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

As Time Goes By

Well, yesterday we made the big switch to Daylight Saving Time. At my age, any change isn’t easy, and I sure miss that hour.

It seems as if time goes by quicker each day. I only have my Christmas decorations as far as the landing, waiting to go into their storage boxes. My snowmen are still sitting on the ledge although, gee, it hasn’t snowed in a week. Our first almost-spring rain melted the last of the snow in the yard as long ago as yesterday. Where has the time gone? St. Patty’s day is less than a week away and Easter is on the horizon.

I believe that it is the busyness of life that hides more hours than the one we lost between Saturday and Sunday. Juggling several projects at one time means I’m constantly putting out fires. Sometimes, I make progress and feel like I’m attacking the fires with a high-pressure fire department hose. More often than not, I look at the growing to-do list and might as well be beating back the flames with a gunnysack, and one that isn’t even wet.

Where has the time gone? I look at the year 2019 and realize how vividly I can remember events of fifty years ago. This is the year of a golden anniversary that will never happen. Jim’s life was cut short by an Alzheimer’s type of dementia—a disease I had never heard of—corticobasal ganglionic degeneration.

CBGD is a rare disease that attacks the cerebral cortex and the basal ganglia in the brain. The onset usually occurs between the ages of 45 and 70 with an average duration of six or seven years. After he looked at Jim’s autopsy report, his neurologist explained that CBGD is a movement disorder. Initial symptoms are usually difficulty walking because of stiffness, shakiness, or balance problems. This is usually followed with problems with speech and comprehension.

For some reason, Jim’s earliest noticeable symptoms were with memory and speech. Early in the disease, he developed aphasia from the damage to his brain. He had trouble speaking and understanding words. Jim also had alien limb syndrome, especially in his right hand. He had to have his little finger amputated due to infection caused from clinching the hand he forgot how to use. He also had ideomotor apraxia (IMA) that resulted in his feet appearing to stick to the floor causing him to lose his balance.

I was relieved to learn that CBGD is almost always sporadic and not inherited. A variant in the tau gene is associated with a predisposition to CBGD, meaning it can occur more often in some families. However, not all people with CBGD have the tau gene variant, and not all people with the variant develop CBGD.

Jim passed away in 2005 after ten years of living with CBGD. Next month marks the fourteenth year anniversary of his death. Where did the years go? Sometimes, it seems a different lifetime, a different me. Other times, it takes my breath away as the realization that he is forever gone batters my heart anew. The pain is physical in those moments and I can almost feel life slipping away.

How did seconds turn into minutes, and minutes into hours? How did twenty-four of those hours turn into days? How did the days turn into years? How many years will you and I have in a lifetime? The questions remain the same, but the answers are the biggest mystery of all.

Copyright © March 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Memory Day 2019

The typical Missouri weather forecast called for a possibility of ice on Memory Day. The night before, Jessica and I held a text discussion trying to decide how early we had to leave to make it to the Capitol on time. To complicate things, the Capitol Building was undergoing renovations and only one entrance was open.

My husband watched me busily texting, as I told him the various times under consideration. “Well, we decided to leave at 8:00,” I said.

After I put the phone down, he asked, “Where are you meeting?”

“Well, since we didn’t decide anything different, I assume we will meet at the same place we meet every year.”

About that time, Jessica sent another message. “We didn’t decide where we were meeting.”

After all our weather worries, the ice stayed away, and we had an uneventful trip to the Capitol. Soon we met with other purple clad advocates. We made new friends and reunited with advocates we had met previously. Several hugs later, we split up into teams to visit our senators and representatives. Jessica, Mark, Samantha, and I donned our purple sashes, put on our figurative advocacy hats, and set off to keep our appointments.

We had two asks this year: Fund Alzheimer’s Grants for Respite and Pass the Structured Family Caregiver Act. It was easy for me to support both bills wholeheartedly.

Every caregiver needs time away to refresh and rejuvenate. The state of Missouri has awarded $450,000 in Alzheimer’s Grants for respite for several years in the past, and we asked for the same amount again. Of the Missourians receiving respite funds, 99% report they can keep their loved one at home longer. By delaying nursing home placement by a mere two months, the state could save $2 million in Medicaid costs. What a deal!

We also asked our legislators to pass the Structured Family Caregiver Act. This pilot program offers a new option under Medicaid for full-time caregivers. The caregiver would have the support of an in-home agency that would provide professional support. The family would receive care planning, training, remote monitoring, and monthly visits. The caregiver would receive a daily stipend to help relieve financial hardship. The goal of this program is to keep persons with Alzheimer’s and related dementia at home rather than in nursing homes. The cost to the state would be about half the cost of a long-term care facility.

Alzheimer’s is the most expensive disease in America for both the government and the families who care for loved ones with the disease. The cost of incontinent supplies alone would strain the budget of a Medicaid eligible household. Imagine the plight of a low-income family dealing with a high cost disease.

At the end of our visits, we attended the Memory Day Ceremony in the Rotunda. Governor Parson talked about his personal experience with Alzheimer’s and pledged his support. Advocate Terri Walker spoke about receiving her diagnosis on her grandson’s birthday. Her well-spoken words had the power to touch our hearts. Her youth, sparkling eyes, fabulous haircut, and lovely purple dress served well to strip away any preconceived stereotypes of the face of Alzheimer’s.  

Families dealing with Alzheimer’s need our support, our hugs, and our advocacy. Until we find a cure for Alzheimer’s, I will continue to join other committed advocates at the Missouri Capitol and on Capitol Hill in Washington, D.C.

Copyright © March 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Broken Survivors

As I brought in groceries from my car, I looked like a bag lady. I carried as many bags as I could to cut down on the number of trips from the garage to the kitchen. Yesterday, I juggled four bags into the house and prepared to set them on the counter. I manhandled the gallon of milk and a sack of cans onto the counter. I lifted the lighter bag with a carton of eggs in it and prepared to set it beside the other bags. The plastic bag slipped out of my hands and the eggs fell to the floor.

I heard a distinct splat and knew that some of the eggs had prematurely met a sad end. I picked up the carton and at first glance, they all looked fine. One by one, I plucked the eggs out of the carton and examined them. Of the eighteen eggs, fourteen were broken on the bottom, but four had survived unscathed.

The eggs all suffered the same disaster and all the eggs were fragile. It seems to me that the fate of the eggs is a life lesson. Not one single person makes it through life without catastrophe.

Your struggles are different from mine. Your heartaches, failures, insecurities, relationships, health problems, and worries are different. Everything that happened in your life—good and bad—made you the unique person you are. Your ability to overcome adversity determines whether you are a survivor and not a victim.

I’ve noticed that ninety-nine things can go right, but the one thing that goes wrong will haunt me. I can remember how hyped I was when the Alzheimer’s Association chapter office decided to give Alzheimer’s Anthology of Unconditional Love to our state legislators. I had collected stories from caregivers and persons with dementia, and the chapter staff chose the best stories to include in the book. I spent about a year on the project and invested my energy into editing these heart-felt stories.

I was recognized on the floor of the Missouri house and received a House Resolution from my representative. What should have been one of the happiest days in my life was ruined when a fellow advocate met me in the hallway. “If my chapter hadn’t told me to give away this book, I wouldn’t have because…” She went on to say something that wasn’t true. I tried to show her where she was mistaken, but she wasn’t interested in what I had to say. She had already made up her mind and didn’t even hear me. That one negative comment stung, and I came close to deciding in that moment that I wasn’t going to publish any more books.    

It’s obvious that this one negative Nelly did not change the trajectory of my life. I overcame my self-doubt and began blogging shortly after this experience. The day I started my blog, I thought long and hard before pushing that “publish” button.

One of the biggest hurdles to overcome if you want to leave the past behind is self-doubt. We all fail and fall short of our aspirations. If you notice someone who apparently leads a charmed life, just know that appearances can be deceptive. Survivors are often broken people who pick up the pieces and glue them back together. Human survivors may look fine on the outside, but inside, they hurt from unhealed wounds.

I cracked one of those “survivor” eggs into the skillet this morning. The egg looked perfect on the outside, but the yolk was broken and it was scrambled on the inside.

Copyright © February 2019 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Silver Alert

I had so many events on my calendar this week that I was on the verge of overload meltdown. I had appointments, two meetings that I needed to prepare for, a luncheon I couldn’t attend because of a conflict with the other two meetings, a conference call, and music practice.

The weather was fine on Monday, one appointment finished, check. On Tuesday, due to a predicted ice storm, one of the Thursday meetings was cancelled, check.

Wednesday, the ice came. Every tree, shrub, and blade of grass turned to silver. I couldn’t step out of the door because of solid ice. I had taken a hard fall on the ice several years ago, so safety first! My dog had to stay within the bounds of her 25-foot leash. She slid on the concrete drive and gingerly stepped on the grass. Each blade was an ice-covered prong that affected her balance and distracted her from her daily routine.

Wednesday night, the weather alert radio went off. In addition to our ice alert, severe thunderstorm warnings were issued. Before long, we had high winds, pouring down rain, thunder and lightning. This is Missouri after all. Another meeting cancelled for Thursday, check. Conference call and luncheon cancelled, check, check. Practice cancelled for Friday, check.

Thursday morning, the power went out for a few hours. After daylight, I noticed the tree in the front yard was mostly laying on the ground. The sun came out for a few minutes and the ice, though treacherous, turned our yard into a silver wonderland. Since my responsibilities had been cancelled for the day, I read, played my computer game, and took a nap. Time for myself, check.

Although in the past, I often ignored weather alerts, it seems that our meteorologists are more accurate now. In this case, the prediction of ice, our silver alert, was spot on.

Weather isn’t the only thing that can be predicted with accuracy. Silver alerts for missing, vulnerable adults will be needed throughout the United States. Six out of ten people with dementia wander, and Jim was one of those who seemed to be seeking something that was in a different place than where he was at the time.

Indicators that predict wandering: a person who paces, exhibits repetitious behavior, forgets how to find familiar places, is gone longer than necessary when going for a walk or driving, gets anxious when in crowded stores or malls, or keeps looking for an undefined object.

I know that when Jim wandered off, there was a fine line between checking where he usually went and panicking because I couldn’t easily find him. Everyone in our neighborhood knew to call me if they saw Jim walking alone. We installed alarms on the door, enrolled him in Safe Return, and tried to be vigilant at all times, but he still managed to wander off. He wandered off in an airport, Silver Dollar City, a mall, from a cabin on vacation, and other places too numerous to mention.

You should look no more than fifteen minutes before you enlist professional help. I notified security at the mall and at Silver Dollar City. If no official security is available, call 911 and file a vulnerable adult missing persons report. The authorities will help you find your loved one and can issue a silver alert. If your loved one is enrolled in the Medic Alert + Alzheimer’s Association Safe Return®, you should notify them at 800-625-3780.

When you are aware of a Silver Alert, share the information on social media. The more people who are looking, the more likely the missing person will be found safely. Silver Alerts have a high success rate!

If you are a caregiver, it is easy to be overwhelmed with the responsibility of looking after the safety of your loved one. Squeeze in some precious time for yourself. It is amazing how one day, one hour, or even thirty minutes can re-energize your body and spirit.

Copyright © February 2019 by L.S. Fisher

http://earlyonset.blogspot.com

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