Saturday, March 23, 2019

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 19th 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 caregivers and persons with dementia within 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

Monday, March 11, 2019

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 cased 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

Sunday, March 3, 2019

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

Tuesday, February 19, 2019

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

Saturday, February 9, 2019

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

Wednesday, January 30, 2019

Bright Shiny Objects

After nine days of bitter, cold weather and gloomy skies, I walked the dog outside and wondered…what is that bright shiny object casting shadows upon the earth? I welcomed the rays of sunshine and the tiny amount of warmth it psychologically added to the day.

I immediately thought of how lately I’d heard the idiom “bright shiny object” to describe people who have risen quickly in the world of politics. In other words, they are saying these young, energetic politicians are charismatic but not long lasting or particularly useful.

Sometimes older workers can have this same attitude toward new employees. When I found a job at the electric cooperative, I was the youngest person in the office. My job was to learn how to operate that new fangled computer. A minority of the employees were suspicious of me because they thought I was hired so they could be replaced with a machine. I was a bright and shiny object in their world, and they would have liked nothing better than to sandblast the shine. Fortunately, most employees thought I was useful and non-threatening, and they polished the shine.

I came to know and love my co-workers as family, and they inspired me to be a polisher rather than a sandblaster. I am happy for my friends and family when they succeed. Life is tough enough without sandblasters purposely trying to take someone down.

To refer to someone as a bright shiny object should never have been a derogatory term. The definition of bright means “full of light.” I believe that Alzheimer’s caregivers are full of light. They’ve had their lives sandblasted by a devastating disease, but accepted the responsibility and challenge of caring for loved ones. Research shows that Alzheimer’s caregivers provide more hours of care and a higher level of assistance with activities of daily living than caregivers for persons without dementia. One in three Alzheimer’s caregivers reported that their own health deteriorated. Yet, each year, more than 16 million family and friend caregivers provide more than 18 billion hours of care for their loved ones with dementia.

Shiny has two definitions that I thought noteworthy—(1) worn or rubbed smooth, (2) reflecting light. Alzheimer’s advocates are often caregivers or former caregivers. Advocates can be worn slick from years of caregiving, but they get the importance of advocacy. Some are a voice for their loved ones with dementia, but others are the voice of a person with dementia. Becoming an advocate is a positive reaction to a negative situation. The Alzheimer’s Impact Movement (AIM), the advocacy arm of the Alzheimer’s Association, has driven policymakers to address the crisis of Alzheimer’s disease. AIM advocates have diligently worked for years to bring national awareness of Alzheimer’s disease and increased research funding.

An object is a goal. The ultimate goal is to find a cure for Alzheimer’s, so that future generations will eventually forget the wreckage Alzheimer’s leaves in its wake. The Alzheimer’s Association is the largest worldwide non-profit funder of Alzheimer’s research. The NIH (National Institutes of Health) has steadily increased their Alzheimer’s funding. A worldwide effort to end Alzheimer’s disease adds to the hope that a cure will be discovered sooner, rather than later.

These bright shiny objects have staying power and are extremely necessary in the fight against Alzheimer’s. Caregivers overcome adversity to be full of unconditional love and light, advocates reflect the light and take AIM at engaging policymakers to make Alzheimer’s a priority, and researchers seek a clear and obtainable goal to end Alzheimer’s.

The clouds roll in again, and I wonder where is that bright shiny object that brings light and life to the world? The clouds may hide it from view, but it steadfastly shines, patiently waiting to burn through the gloom to brighten the world with hope.

Copyright © January 2019 by L.S. Fisher

Sunday, January 20, 2019

Life Was Simpler

I took my dog out yesterday in forty mile an hour winds. Well, sometimes I took her out and other times, I huddled behind the glass storm door. I opened the door a crack to tug on her leash, and the wailing wind reminded me of nights at my grandma’s house when I was a little girl. As I huddled in a feather bed beneath quilts that weighed more than I did, I could hear the whistle of the north wind as it whipped around the house and through the ill-fitted windows.

This morning during breakfast, my husband and I talked about poverty. I said, “I never worry about being poor, because I’ve been there and it doesn’t scare me.”

“You know, we don’t really need most of the stuff in this house. We could live without cell phones, Dish Network, fancy TV’s, iPads, Kindles…,” he said.

After our discussion, I began to think about how life was so much simpler when I was growing up. Playtime didn’t involve deciding which toy to choose, because I didn’t have many. Instead, I would decide which tree to climb. It wasn’t hard to choose what to wear. I had two choices—one of my three or four school dresses, or the old clothes I wore at home. When I was little, I had two pair of shoes (school and play), and in the summertime, I went barefoot most of the time.

No one had heard of Alzheimer’s. When my elderly great-aunt developed dementia, folks just said she was “slipping.” We kids enjoyed her childlike behavior and loved her unconditionally.

After Jim and I married, we had a black-and-white 19-inch TV. We struggled to pay the bills, lived in rental houses, and bought clothes at garage sales, or I made them. For several years, we didn’t even have a phone because it was an extra expense. We had one old car after we sold the other to pay my hospital bill when my son was born.

We never obsessed about being poor. Just like my folks, we never resorted to food stamps, government assistance, or borrowing money to help us through the lean times. Instead, we saved all we could, so we could make it on our own.

Life was simpler and people were kinder. We didn’t have politics shoved down our throats twenty-four hours a day. We voted and then let it go until the next election. We didn’t have our friends and family insulting our intelligence on Facebook every day because we made different political choices. If someone mentioned a tweet, we’d have been looking for a bird.

Our social activity was visiting with family and listening to their foot-stomping country music. We went to a laid-back country church on Sunday. Family relationships were cherished, and we would never deliberately be unkind or critical of them.

Jim’s mom always said, “If I have food on the table and a roof over my head, I’m content.” Simple goals, important goals, considering she had temporarily lived under a tree, more than once, and under a bridge at another point in time. She never felt homeless and as long as she was surrounded by family, their love shored her up and made her fearless about poverty.

No, poverty doesn’t scare me. Sitting around the old oak table drinking home-squeezed lemonade seems much more appealing that working my butt off trying to keep up with all my obligations.

This morning, when I took the dog out for her morning walk, I told her, “Yesterday’s wind is gone, just like the simple times.” She stopped, tilted her head, and had that look on her face that indicated she thought I was maybe, just maybe, talking about the treat in my pocket.     

Copyright © January 2019 by L.S. Fisher

Friday, January 11, 2019

Treasure Hunt

Although I’m a declutter class dropout, I’ve been tackling the piles of storage tubs in my basement. A person my age has a long time to accumulate a wide variety of items. I’ve filled a half dumpster of old paperwork, things I just don’t want anymore, worn outdated clothing, and worthless souvenirs.

The process is slow, but I don’t want to resort to the strategy a friend of mine used when she sorted through her deceased husband’s storage boxes. She spent weeks going through his things, but finally decided to dump the rest without looking inside the boxes. I don’t fault her for this at all. The hardest part of decluttering is knowing what to throw away, knowing what to keep, and how to dispose of the rest.

In the midst of wondering why I hadn’t thrown mountains of stuff away years ago, I’ve found unexpected treasures. I found a lost photo of Jim holding his M-16 in Vietnam. I found a box of ribbons for our Alzheimer’s Walk Committee’s participation in parades. I found a box of magazine and newspaper articles I’d saved but hadn’t put in the scrapbooks from the five years that I coordinated the “Memory Walk.”

Recently, we found a scrapbook my husband’s mom had made with photos of family members with neatly handwritten captions. I considered it a real treasure. His cousins dropped by for a visit, and I showed the scrapbook to them. My husband, an only child without children of his own said, “Nobody is going to want this when I’m gone.”

Therein lies the dilemma. Our generation’s treasure is trash for the generation following us. Although my kid’s value some mementos, they have no room in their homes for all my stuff, especially things that mean nothing to them. Along with the items in the basement, I have several collections. Some have at least garage-sale value and others, well, not so much.

I floated the idea that my kids should hold my memorial services at Christmastime and give everyone attending a nutcracker. “Give the big ones to people that I don’t like,” I said.

My daughter-in-law quipped, “Gives an entirely new meaning to ‘parting gift.’ ”

The best thing to come out of my treasure hunt was finding one of Jim’s guitars that had been in a “hidey-hole” for the past eighteen years. I gave it to my brother to use for as long as he wants. We practiced the songs for our monthly nursing home gig and for my mom’s birthday party. It really warmed my heart to see someone playing Jim’s guitar. When my brother sang “Sing Me Back Home,” I told him that the guitar could probably play that tune by itself. “Maybe that’s why it sounded so good this time,” he said.
Going through the clutter, has been a time of remembrance of good times and hard times. Of course, now I must press on to get past that stage of mass chaos. One of my motivations is the thought that someday someone may just dump the storage tubs into a dumpster without looking at the contents.

Copyright © January 2019 by L.S. Fisher

Sunday, December 30, 2018

Something Different

In college, I took an accelerated class on Office programs, and it was no surprise that our tests were computerized. As many of us know, there may be more than one way to come up with the correct answer, but we had three tries to come up with the “preferred” computer chosen method. “The test is only going to have one correct answer, so if the way you do it the first time doesn’t work, try something different!”

This could well be a life’s lesson. During the time I was a caregiver for Jim, I lived and breathed the lesson of trying something different. It became my mode of survival. It seemed that each day brought about some of the same challenges and piled on new ones. You would think it would be easier as you learned what worked with the old ones, but the solution bar kept changing for the old ones along with the new ones.

I documented these challenges and began to put them into a memoir Indelible. I had a rough draft finished  a decade ago, but put it aside.

I resumed the project in September 2016 with hopes to have it finished by the end of 2017. Instead, here it is a year later, and I still have work to do. In the book, I share some brief glimpses into everyday challenges of having a husband with dementia. These flashes of reality could be thought of as verses. These stories, some short, some longer, make up chapters. Eventually, when the words come together in a coherent manner, it will become a non-fiction book.
The book has taken a back burner to all the other distractions life has thrown at me. Many mornings I wake up with intentions to work on the book, but first, I have to tend to all those other obligations, all the immediate things that must be tended to, and the dread of what’s coming down the pike.

As we close in on the new year, most of us take a moment to reflect on the year just about to trot into the sunset of the past. As we close the chapter of 2018, I’m more than ready to open a new one in 2019.

Too often, I’ve made the mistake of trying to be a people pleaser, and that means some of them have stolen my pleasure. Worse yet, they’ve stolen my time.

I plan to move into the new year without resolutions, but with the resolution that the same old problems aren’t going to be approached in the same old way. Sure, I’ll still make mistakes and take the wrong approach, but maybe by the third try, I’ll get it right. Who knows, maybe 2019 will be an Indelible year.

Copyright © Dec 2018 by L.S. Fisher

Saturday, December 22, 2018

What Day Is It?

Jim and Linda, Hawaii, 1969
We had our family Christmas get-together the second week in December. The following Friday, we had our final practice session for the December nursing home gigs. On the way home, I stopped at Walmart to pick up a few essential items.

I walked into the store and stopped in my tracks. Why did they still have all that Christmas stuff out? After my initial shock, I realized that Christmas was still more than two weeks away.

It is no wonder I wouldn’t remember what day it was. My husband and I have been working on migrating our websites to a new server since the first of the month. The project is so fraught with problems, we’ve been working practically non-stop. “My brain is mush,” I told him.

I had been trying to write a note about the umpteenth way to approach a failure and noticed I was making letters backwards and out of place. My brain would not process how it was supposed to look. It made me think about Jim in the early stages of dementia. I wrote about it in Indelible, a memoir in progress.

Jim began to have difficulty writing. He would write letters but they wouldn’t make words. Most of the time, the combination was close enough that I knew what he meant.

I wanted him to feel useful and to “exercise his brain.” One morning, I was washing the breakfast dishes and Jim was sitting at the table. “Honey, would you make a grocery list for me?” I nodded toward the pad and pen I’d placed on the table. “We need paper towels,” I said.

He picked up the pen and wrote on the notepad. “We need milk,” I said.

He set the pen down. “I don’t want to.” He walked out of the room and I sat down to finish the list. On the paper, he had printed, “taper powels.”

Later he picked up the list and studied it carefully. “I wonder why I spelled ‘paper towels’ that way,” he said.

If not for the date displaying on my phone and PC, I would be completely lost as to day and time. Still, even those reminders aren’t enough when my mind is on overload. A few days ago, I looked at the date and noticed it was the day Jim and I married in 1969. I had a complete meltdown, then had to pull myself together to try to make it through the day. My mom called and our music was cancelled. I was torn between having more time to help with the migration project and disappointment that I wouldn’t be able to lose myself in the calmness of playing the ukulele.

I had planned to go to the funeral of our third family member to die within the last thirty days. I would have been there, except for some strange reason, I thought the funeral was Saturday. We played music Friday, and I never sat down to read the paper until late. I saw the funeral notice and my heart sank when I realized I had missed it.

Soon it will be a new year and a time of promise. I look forward to getting back on track and living the retirement dream. I look forward to a time when the outside stress and pressure subside, and the drama ends. I’ll be glad when life gets back to normal.

I think I need one of those shirts or mugs that say, “This too shall pass. It might pass like a kidney stone, but it will pass.”

Copyright © Dec 2018 by L.S. Fisher