If You Go Down

 

The last Saturday in August, I participated in the International Play Music on the Porch Day. This was the first year that I was able to sing on our sun porch. I was hoping it would be complete by the time the big day rolled around, but the tile hadn’t been laid and the shiplap wasn’t stained and finished.

This is the third time I’ve participated in the big day, but for once, I knew exactly what I wanted to sing. Recently, I discovered Kelsea Ballerini’s “If You Go Down (I’m Going Down Too)” song and knew it was the one song I was going to sing on the sun porch. 

I dragged all my music equipment out to the porch. I carried my ukulele and the dog trotted along with me. It was a beautiful, cool morning and just as I got set up, the guy that mows our lawn showed up. As I started recording, the mower buzzed past the window. Take 1,2, and 3 erased. After several attempts, I made it through the song without mower interruption.

The song is a humorous take about friendship that knows no bounds. A person is lucky indeed, if you have a friend who will, without question, have your back! I don’t know if I’d go to the extremes that the song implies, but I do have a few special friends and family members that I’d bail out of jail.

I remember one time my sister called me and said she was in jail and wanted to know if I’d go her bail. I was quickly calculating in my head how much money I had in the bank.

“What did you do?” I asked.

She said, “Embezzlement” and then laughed. She was “in jail” for charity and had to raise a certain dollar amount to do her part. With great relief, I donated.

Although we may (or may not) have friends that we would stick to through all pitfalls and disasters, we more often will have to know when a person has gone too far. At times all we can offer is tough love. We may have to say, “I can’t do that” when we get that call in the middle of the night, and someone wants you to bail them out of jail. Several years ago when I was living alone, I received one of those calls and although I was half asleep, I knew it wasn’t something I could do.

 I’ve seen heartbroken parents who refuse to enable their kids when they get lost in the illegal drug world. I had a conversation with a woman whose son relapsed and was circling the drain. She refused to help him saying, “He has to hit rock bottom before he will stop using.”

There are reasons to refuse to let someone drag you down with them. Imagine that someone is drowning and in their panic, they pull you under, and you both drown. In that case, if you have a long pole you can let her hang on and drag her to safety. Or you might throw him a floatation device and let the person save himself. It does no one any good if you both drown.

I know that as a caregiver, I had to work at not sinking into despair. I had to hold on tight to my own identity to continue life outside of caregiving. Friends and family who walked beside me and pulled me forward were the saving grace that kept me afloat.

Lately, playing music with the family band has been my lifeline. Relaxing with my ukulele helps me make it through some exasperating days.

I wasn’t 100% satisfied with how I sang the song, but knowing me, I could have gone through it twenty times and still would have found something wrong with it. I took the SD card out of my camera and inserted it into my PC. I used Movie Maker to finish the video and format it for Facebook.

In past years, my video was lost among the thousands of videos posted throughout the world. This year, was a little different. I started getting comments about the song. One lady said that it would be a good song for her trio. One of the Play Music on the Porch administrators said this was her new favorite song, and asked if I’d post it to the Facebook account so that she could share it. Songs posted to the community can only be viewed by other members and cannot be shared. Later in the day, the administrator said she had been singing the song all day!

I know the enthusiasm wasn’t for my singing, but for the song. It will probably take another year for me to find a song for 2024 Play Music on the Porch Day. In the meantime, the message for my best friends—if you go down, I’m going down too.

  

Copyright © Aug 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The Lazy, Hazy, Days of Summer

  

When I took the dog out last week, we found thick fog and scorching hot weather. Later in the day the haze was gone, but the heat and humidity made outside time almost unbearable for me, and I’m not covered in thick fur like my dog. The heat made me feel lethargic—or one might say—lazy.

I could feel myself wilting when I had to take the dog out. At least when we finished outside, we came inside to a cool house with a dehumidifier. It still took time for me to recuperate after a stroll around the yard with a recalcitrant dog. The dog led and I followed.

On those foggy mornings, the heat made my glasses fog over. I sat on a chair in the shade, and the dog promptly jumped into the chair next to me. As we sat there panting in the heat, I suddenly felt a cold wind hit me for a few seconds. I thought maybe I’d left the door open, but it was closed. About the time I decided I’d imagined the cold wind, I felt it again.

It didn’t matter whether it was 6 a.m. or midnight, the air was heavy and oppressive. I thought about the hot nights when I was a kid and we had only a box fan to stir the air. Summers may not have been  hotter, but when you had no respite from the heat, it seemed that way.

When Jim and I first married, we rented a one-room apartment in Kansas without air-conditioning. We had one window, a screen door, and a fan for circulation. It got so hot at night that we wet a beach towel and put it over us.

Several years later, we lived in a two-story farmhouse, and the downstairs was comfortable even in the hottest part of summer. When we bought our land and moved a mobile home on it, we made it until June without an air-conditioner. It took us that long to decide that our mobile home was a heat trap in the summer.

Our favorite way to beat the heat was to go to the Rocky Mountains in Colorado. August was our favorite time to go because that’s when the weather was miserable in “Misery” as we often called Missouri. It was always great to put on a jacket and sit by the campfire.

I recall how vigilant I had to be with Jim during the summer. When he was inside the house, he sometimes wore his denim jacket to stay warm. In his confusion, he would try to warm the house up, but instead he would push the thermostat lower. I finally had to put duct tape over the control to keep him from pushing it as low as it would go.

One day I told Jim we would go to town to eat. After I was ready to go, I grabbed my purse, but couldn’t find Jim. I finally decided he’d already gone to the car. That’s where I found him, with all the windows shut tight, wearing his denim jacket, and sweating profusely. I couldn’t imagine what would have happened if I’d taken longer to get ready.

When the thermometer hits triple digits, it’s hard to stay comfortable without a fully functioning cooling system. I feel for those who suffer through the hazy, lazy days of summer without a way to cool down.

I hope we have an autumn this year and don’t go from the summer heat to the bone-chilling cold when all the winds are cold. As I bundle up to take the dog out, the summer heat will be only a fond memory. As for the dog—she prefers the snowy, windy, icy days of winter.

 

Copyright © Aug 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Sunrise, Rainbow, and Rain

Today would have been a great day to sleep late, except my body had other ideas. After a restless night, I woke up hurting from the top of my head to the tips of my toes. It had been raining outside, so it wasn’t a big surprise that my arthritis had overruled my meds.

I tried re-medicating my knees, but still couldn’t go back to sleep. Finally, I crawled out of bed and grabbed my walker for a trip to the medicine cabinet for my arthritis-strength Tylenol.

Since it was almost six o’clock, I decided to go ahead and brew my coffee. I pushed the button on the pot. It spewed and sputtered for about twenty seconds and shut off. After lifting the almost empty carafe, I realized I hadn’t prepared my pot the night before.

After the coffee was brewing, I turned off the security alarm because I’d decided it would be a good morning to sit on the almost finished sun porch to drink my coffee. Turning off the alarm signaled the dog to stretch in preparation to going outside. “Okay, I’ll take you out while the coffee is making,” I told her.

Being awake so early made me think of Jim. He was a morning person and liked nothing better than starting the day drinking coffee and playing his guitar. As the dementia progressed, he often sang a cowboy song about having a bad day. It was stuck in his head and he sang it repeatedly. I suppose that somewhere in the recesses of his mind, he knew his good days were mostly behind him.

As soon as I stepped outside, I noticed that it was sprinkling rain. I glanced over to the East and saw the sun peeking through the clouds. In the West, I noticed a very faint rainbow and following the arc, the rainbow was brighter in the South.

I hustled the dog back inside and grabbed my camera. I captured what my eyes had seen and thought about the wonders of early morning, life giving rain, and the promise of the rainbow. It made me wish that I took time each day to appreciate the beauty that surrounds me.

As I sipped my coffee, I could feel the pain leaving my body. I looked out at the trees, the crops in the field, and at the backyard where the grass is sporting spots of green among the sun-scorched patches of brown. I heard a lone bird chirping.

This is how I had always envisioned retirement would be, and yet this kind of morning is rare. I suppose it’s my own fault, but it seems that too much of my day is out of my control. I’m pulled in different directions between chores I have to do, projects I need to complete, volunteer work, or the things I really want to do—play my ukulele, read a good book, watch a movie, or spend time with family.

I’m such a late night person that it’s hard to drag myself out of bed in the mornings. It seems that late night is “my time” to relax and reflect. When I go to bed, I like to read and, hopefully, sleep through the night.

I see more sunsets than sunrises, and that is a disturbing thought. Sunsets represent endings, and sunrises represent beginnings. The rain today is quenching the thirst of the earth. The rainbow is a sign of hope and a promise of better times ahead.

 

Copyright © July 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Try to Remember

 

I was listening to 70’s on 7 in my car while I was on the way to play music at Cole Camp. A song came on the radio that I didn’t recognize at first. Gladys Knight sang a song that came up on my display as “Try to Remember.”

      During the intro, she talked about the “Good old days” and my ears perked up. I think we’re all guilty of remembering the past with feelings of nostalgia and longing for the good old days. It seems that time was simpler then than now.

We lived in the country so our summers were spent playing outside. We didn’t have the distraction of video games, computers, or TV with endless channels. Sometimes, outside was cooler than the house. We had no air-conditioning so I read books while lying on the floor in front of the box fan. Summertime was sweating time. The good old days.

When Gladys starts singing, she talks about September memories. September to me was back to school after the long, hot summer. I liked school and enjoyed spending time with my friends. Well, that is except for the year that for some reason the girls I usually spent time with suddenly weren’t talking to me. I never did find out the reason and when I asked someone about it later, she didn’t remember it. The upside was that once I wasn’t a part of the “cool kids” I became better acquainted with the girls that weren’t part of the “in crowd” and didn’t even care.

September also brings back the bittersweet time of when Jim joined the Army. After Vietnam, PTSD, and Agent Orange, we lived in Manhattan Kansas while he finished out his three years of service. I didn’t care much for Army life, but still have sweet memories of us becoming the parents of a baby boy, days spent at Lake Tuttle, going to the nearby park, and how our house was filled with love, laughter, and music.

We couldn’t foresee the future where the time spent in Vietnam would become a darkness that would close in on us. Jim’s mental anguish lasted for years until the brain disease erased some of the painful memories. Unfortunately, it also erased many of the talents and traits that made Jim, Jim.

I’ve lived seven decades and that makes for a lot of old days, good and bad. I believe the best part of the old days was before I was plagued with health problems. I was extraordinarily healthy in my youth with sick days being few and far between.

I think the key to remembering the good old days is to remember the good. One line in the song mentions that as bad as times are now, these will be the good old days for our children.

Life is not all roses, but it’s not all thorns either. Turning thoughts to roses is part of my basic optimism. I prefer to dwell on the pleasant days, time spent with friends, and forget the angst that I felt when things didn’t go according to plan.

The thorns that prick my memories, have long since dulled and turned into lessons learned. The “could have, should have” mind game usually ends badly. I feel that the choices I made, whether right, wrong, or ambivalent, have landed me exactly where I am supposed to be. When it comes to the past, it is what it was, and although the past cannot be rewritten, it can be edited. We can strike through the negative and highlight the positive.

Copyright © July 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

I Love a Parade

 

The hallmarks of Independence Day are fireworks and parades. Because of the dry weather, backyard fireworks were in short supply. It was unusual to pass by fireworks stands and notice they had no customers. Most people opted to the big displays provided by communities throughout the nation.

 Our Walk to End Alzheimer’s Committee has participated in the parade for several years. We toss candy, bracelets, and T-shirts to the crowds who mostly line the shady side of the street. One of our corporate sponsors has provided golf carts that we decorate in red, white, blue, and purple. This year, our walk manager and her family joined us with a decorated truck.

After the puny polka-dot rains we had before the 4^th, I wouldn’t have been surprised if it hadn’t rained on our parade. The day of the parade, I carried my purple polka-dot umbrella so that I had shade from the sun while waiting for the parade to begin.

The parade is a lot of fun. Along the route, we see people of all ages decked out in their patriotic colors, smiling, waving flags, and enjoying life in these United States of America.

As we ride down Ohio Street, we pass by majestic historic buildings, some of which have witnessed more than a century of parades. We see the courthouse with its statues honoring those who fought for our freedom. Although I can’t see them, I know that we pass close to the bricks alongside the sidewalk in front of the courthouse honoring veterans—including Jim and my dad.

 I smile and wave at the crowd occasionally spotting someone that I know. When I’m in a parade, it seems to go by quickly.

There’s something about a parade that just makes my heart smile. I love a parade!

 

 

Copyright © July 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Taking Control

When Jim was diagnosed with an Alzheimer’s type of dementia, I felt as if we had been robbed of our future. As his health failed, I knew we would never grow old together.

At times, life seemed to spiral out of control. We were facing a health crisis unlike any that I had ever personally dealt with in my life. Before long, I learned that the different physicians and specialists we visited did not have the time to teach us about life with dementia.

One day, I opened the phone book and saw a listing for the Alzheimer’s Association. I called the number and talked to Penny Braun, the executive director of the Columbia Chapter. The Chapter became my lifeline.

Some of the strategies that worked for me:

 

1.  I found power in knowledge about the disease and about the best caregiving strategies. The local Alzheimer’s Chapter offered educational classes and I signed up for everything they offered. Jim and I joined an early-onset support group where we met other young people with dementia. I joined a local caregiver support group where I learned how to navigate the financial and emotional aspects of dementia.

2.   We received the best medical attention we could for Jim and eliminated one-by-one treatable causes of dementia. I kept a log of all the tests and procedures so that we didn’t duplicate expensive tests.

3.  I took back power by becoming an Alzheimer’s Association advocate and volunteer. It did my heart good to know that I was making a difference as an advocate for Alzheimer’s research. By joining the Walk to End Alzheimer’s I helped “pay forward” the support and services I had received from the Alzheimer’s Association.

 

It didn’t take me long to discover that I could not control the disease, but I could take control of the situation. Hopefully, in our lifetime, Alzheimer’s will become a manageable disease and survivors will take a victory lap. 

 

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Let Us Forget Not...

 

 

At the close of our Business Women’s Meetings, we recite the Club Collect. One line of the Collect says, “Let us forget not to be kind…” The Collect is a prayer to remind us to be better human beings.

Today, I was inspired to write about the things caregivers should not forget to do, think, or feel. The prayer is jam-packed with words of wisdom, but my focus today is of “forget not” and we will begin with the original concept. 

 

Forget not to be kind: First, kindness is not the same as weakness; in fact, we gain strength through kindness. The dictionary definition of kindness is “the quality of being friendly, generous, and considerate.” Those are all qualities of kindness, but we should strive for more. It’s easier to be kind to some people than it is others. To be kind to a difficult person requires a conscious effort! One person you should always be kind to is YOU.

Forget not to be flexible: When things do not go according to plan, go with what works. Each day brings new challenges for a caregiver. Unfortunately, if your loved one has dementia, the same solution that worked the day before may not work again. Being flexible means looking at other possibilities.  

Forget not to love: A person with dementia may not demonstrate love in the same manner they did before the disease. Jim was always a loving person, but as his dementia progressed, he changed. I missed the way he had been throughout our first twenty-five years of our marriage, and learned to love him unconditionally through the last ten years of his life. In many ways, he was a different, more vulnerable, person, and my love for him became more protective. I didn’t look back, and I didn’t think about the future.

Forget not to be generous: Jim taught me to be generous. He was the most unselfish person I ever knew. He would give his last ten dollars to a family member that needed it worse than he did. That’s just the way he was. I was horrified when I learned he took $1000 out of our account to give it to a friend. His trust was not misplaced, because eventually, the friend repaid him. I never made it to Jim’s standard of generosity, but I took baby steps in the right direction.

Forget not to give time: The most important gift we can give to our loved ones is the gift of our time. As I visited Jim on a nearly daily basis, I noticed most residents seldom, or never, had any visitors. Jim had family that looked out for him on a daily basis. We worked with nursing home staff to make his life as comfortable as possible.

Forget not those who have forgotten you: In support group, one of the questions we often had was why visit your loved one if they don’t know who you are. Jim’s aphasia meant that he was a man of few words. Sometimes, he got teary-eyed when he saw a friend or relative he hadn’t seen in a long time. I explained that his reaction meant that he remember them.

Being an un-paid family caregiver for a person with dementia is the ultimate act of love. Knowing when to say “when” can be an act of kindness. The nursing home decision is a difficult choice, but sometimes it is the best choice for the caregiver and their loved one. 

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Artificial Intelligence

 

I’ve watched newscasts that tout the danger of artificial intelligence (AI). With available technology, fictitious events might appear to be real. Without laws protecting the general public, AI could create chaos, leading up to war.

Recently, a woman heard her terrified fifteen-year-old daughter’s “voice” crying and saying she was kidnapped. The kidnapper demanded $1 million, but reduced it to $50,000. The woman was able to reach her daughter before paying the ransom. She testified to Congress about how real the AI generated voice sounded and how the kidnapping scam could have succeeded.   

A large segment of our society doesn’t trust anything that defies their preconceived beliefs, and now they have a “fall guy” for any opposing viewpoints. It gives new meaning to artificial intelligence when people share, believe, and are swayed by social media posts that have no basis in reality.

Often those that think they are politically savvy base their opinions on sound bites, hyperbolic headlines, from their newsfeeds and slanted political radio, TV, or online stations. We’ve become a country divided and without respect or tolerance for anyone having a difference of opinion.

We used to gain our intelligence through reading textbooks and taking a wide variety of required educational subjects. We watched the nightly local and world news, which wasn’t sugar coated or politically sensationalized.

Now, we’ve replaced real intelligence with artificial intelligence. If we don’t know or can’t remember something we just look it up on a search engine and immediately have the information on our screen.

I’ve been steadily receiving offers that all I need to do is select some key words and AI can prepare a grammar free, perfectly written blog post for me. My first response to that offer was, “What’s the fun in that?” We have spell check, speech to text, and apparently the ability to write essays or blog posts without using an ounce of our own intelligence.

Although artificial intelligence may have negative effects, AI is an essential disease research tool. For example, AI uses an algorithm to compare PET scans to detect subtle changes in the brain that human radiologists could miss. This allows AI to identify whether an individual has the characteristics essential to diagnose Alzheimer’s disease for an earlier diagnosis.

Studies are also being conducted on how AI can help primary caregivers of persons with dementia. Smart home systems and sensors used to track and detect issues as they develop. Technology can be used to offer alerts to assist with cognitive problems and help the caregiver use best practices to cope with the challenges of caring for a person with Alzheimer’s and related dementia.

When used to enhance the human experience, AI is a robust tool. On the flip side, AI is being released for public use faster than safeguards are put into place. Criminals can use AI to impersonate a family member or friend’s voice as a clever way to trick an unsuspecting person into sending money.

As long as we use our God-given intelligence, we can embrace AI for its positive medical research benefits, and learn to verify suspicious activity or events. There’s nothing wrong with verifying information with an internet search, just be aware that social media memes are not a reliable source.

 

Copyright © June 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Mistakes, Truths, and Careless Words

 

My former boss, Ed, used to say that if you never made a mistake, you weren’t doing anything. I could see the truth in that statement. The people that took on responsibility and tackled complicated jobs, occasionally made mistakes.

I wore several hats at work, including office manager, and whenever I made a mistake it had the potential to be a doozy. I was always more tolerant of other employee’s mistakes than I was my own. Once I learned to forgive myself for making mistakes, I was calmer and more optimistic. I always figured my mistakes paled in comparison to someone making a mistake in a life or death situation.   

In today’s world of instant communication, it’s easy to send an angry text, email, Facebook post or to make a snarky phone call. The tongue is one of our most dangerous, out-of-control weapons. Words can destroy life-long friendships, marriages, and employment. Rumors and lies can ruin lives. Silence really can be golden! Thinking before you speak or send regrettable words is always a good choice.  

It’s not a good idea to let your mouth get ahead of your brain. Sometimes, saying you’re sorry doesn’t erase the damage. Forgiving or forgetting isn’t easy, especially to a grudge holder. Somewhere along the way, I stopped holding grudges and usually gave others the benefit of the doubt if they weren’t blatantly being hurtful.

Lives can be irreparably damaged by a moment of stupidity. Everyday people are subject to the scrutiny that was once reserved for the rich and famous. We live under the constant watch of cell-phone cameras, internet postings of arrests and accusations, and face the judgment of friends, enemies, or total strangers. People are no longer innocent until proven guilty; they are guilty until proven otherwise. I hope that I don’t breathe life into salacious gossip, but allow it to die a slow, painful death  

Throughout life, I’ve discovered some hard truths. I learned that it wasn’t my responsibility to make a clinically depressed person happy. When Jim went through his periods of PTSD and depression, I was supportive and encouraged him to get medical help. The hardest part for me was to overcome the feeling that I had failed him. As much as I loved Jim, I couldn’t make him happy when he was going through a dark time.

 The truth is that being a family caregiver is often a thankless and lonely job. A caregiver can become emotionally and physically drained without adequate respite and support. Caregivers are well-known for ignoring their own medical conditions because, well, they just don’t have the time or energy to tend to their own health.

If you don’t take care of yourself, you won’t be able to take care of your loved one. It is important that you do not give up your hobbies and activities, especially when caring for another long term. Hold your friends and family close because they will help you retain your zest for life.

 

Copyright © May 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Life Happens

 

The most unpredictable moment in time is tomorrow. Although we may have an idea of what tomorrow will bring, it may not resemble the actual events.

Real life can turn routine into chaos. We all know the horror of answering the phone and hearing of an accident, a terminal diagnosis, or a death in the family. The same device can bring us unexpected joy when we hear of a birth, an engagement, or someone who lands her dream job.

Life happens while we make plans. When you think about it, so much of life can sometimes seem to be random events strung together in a haphazard order.

I feel like my life is a billion piece jigsaw puzzle that was whirled up into the stratosphere and came to earth a piece at a time to form a picture that became my life. As with all good puzzles, you can’t force the pieces together—they fit or they don’t.

I became the person I am based on all the misfortunes, adventures, failures, triumphs, and experiences that happened throughout the more than 26,000 days I have lived on this planet.

The older I get, the more I forget. I only remember a fraction of the billion pieces of my puzzle. Although some of the pieces fell together as they should have, it seemed that from time to time, they were swept off the table and thrown into the floor to be picked up and, hopefully, fit back together.

I met Jim through a chain of events that could have easily never happened. We pursued a relationship against the odds that it would work out. Early in our marriage, our richer and poorer was definitely poorer. Late in our marriage, the sickness and health turned out to be sickness. The part we nailed was “to love and to cherish.” Until death do we part, turned out to be how our story ended, or did it?

The picture of my life fell apart and rearranged into a new picture. I gathered up the knowledge I gained through Jim’s dementia and shared it through my writing. Our story lived through my recollections. My fallible memory was bolstered by the pile of tapes I recorded while we journeyed through the land of dementia.

It’s a lot easier to recall the main events of life than to recall a conversation that took place on an uneventful day. How many days are really that memorable during a lifetime? Maybe an algorithm exists that could calculate an average number of red-letter days for an average life. Let’s be realistic, no one lives an average life. Until we exit this world, life happens as it is intended for each of us.

Copyright © May 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ