Sunday, August 27, 2017

Remembering Jim

Today would have been Jim’s 72nd birthday. In honor of his birthday, I wanted to share some of my memories of Jim before dementia.

Jim’s uncle introduced me to Jim on a hot summer day in 1968. I don’t know if it would qualify as love at first sight, but it was darned close to it. He was drafted in September and after training, he left for Vietnam in May of 1969.

Jim liked to say he won me in a craps game. He came up with the idea that he could take R&R in Hawaii, and I could fly there and we could get married. The only problem was, neither of us had any money. Jim decided to take what money he had and shoot craps to finance a honeymoon. Sure enough, based on the roll of the dice, he had enough money to fund the trip.

We were married at Fort DeRussy on December 20, 1969. It was a small wedding with the chaplain, Jim, and me. The witnesses signed our marriage certificate before the nuptials so they could go home. Jim, being Jim, refused to wear his uniform for the wedding. He bought some “civvies” for the ceremony.

During the early morning hours of Christmas Day, Jim went back to Vietnam and I flew back to the states. We began our lives together when he returned home April 5, 1970. He still had a year’s obligation to Uncle Sam so we moved to Manhattan, Kansas.

The couple who had the smallest wedding also had the smallest apartment: one small room with a bathroom. We had no air conditioning, and I mostly remember the sweltering heat and the two of us sleeping on a twin bed. In early fall, we moved to a bigger apartment in the same house.

Jim was a family man. He loved spending time with his family and my family. We traveled home about every other weekend. We always drove an old clunker because Jim was a genuine shade-tree mechanic and could keep any vehicle on four wheels running well past its prime.

The army didn’t pay much so we learned early on to budget our money. We always had a savings account for emergencies. Our entertainment was inexpensive. Jim would play his guitar and sing, we went for long drives, and we spent a lot of time at Tuttle Creek because Jim loved to fish. If we really wanted to splurge, we went to the movies or ate at Dog and Suds.

Glen Campbell’s song said “Manhattan, Kansas, Ain’t No Place to Have a Baby,” but we were excited to become parents. Eric was born at Fort Riley Hospital and cost us a whopping $7. When Rob was born two years later at Bothwell, we sold my car to pay the $700 bill.

Jim loved to travel, and we often made trips to Oregon to visit relatives and his childhood places. Later, we went to Colorado every summer to camp in the Rocky Mountain National forest. Jim was happiest when he “had something to look forward to” code for a road trip. He would pack the van for days in anticipation of our annual vacations.

Jim was generous to a fault. He would literally give someone the shirt off his back. He gave away valuable musical instruments to other family members. He was stubborn and wouldn’t do anything that was against his principals. He could be exasperating at times.

Vietnam haunted him. He was mentally and physically broken by his time in the jungle. He had a fractured neck that wasn’t treated until years later. He had PTSD before anyone knew what it was. He suffered deep depression and had to be hospitalized twice.

Jim was intelligent, loved to read, play video games, had a wacky sense of humor, was musically talented, and a deep thinker. He believed in ghosts, the unexplainable, angels, God, and that death was simply closing one door and opening another.

He loved with all his being and was fiercely loyal to those he loved. He loved his boys, his grandchildren, his parents, siblings, aunts, uncles, nieces, nephews, cousins, friends, and I never, ever, doubted his love for me. He called me his bride, princess, honey, sweetheart, but never called me Linda.

Of all the things I miss about Jim, I think I miss our quiet times the most: drinking a cup of coffee and talking about the mysteries of life. I miss the adventures, the comfort, and all the things that made Jim the unique man who stole my heart and held it gently.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 24, 2017

Memory Trick and Tricks of Memory

As an Alzheimer’s blogger, I think a lot about memory and how it often tricks me. My husband finds that memory tricks, or association, helps him to remember some important fact.

One day last week, Harold asked me to remember a number. Generally, when he tells me to remember something, I write it down. That is the only memory trick I know. It so happened that when he asked me to remember the number, I was outside on the deck drinking coffee and didn’t have anything to write with, or on, for that matter.

“Okay,” I assured him, “I can remember that.”

About thirty minutes later, he said, “What was that number I asked you to remember?”

“Two-eight-four?” I guessed.

“You are close, but wrong,” he said. “It was two-eight-six.”

“Well, if you remembered it, why did you ask me?”

“It’s really easy to remember, if you remember the first number is two, and if you subtract two from eight, you get six.”

“Uh, okay,” I said. I really didn’t think that would help much.

My most memorable experience with association as a memory trick was a speaker who spoke at an assembly at the College of the Ozarks. The man, whose name I do not remember, walked around campus and learned the names of a few dozen students.

At the assembly, he had them stand up and he pointed at them one at a time and gave their names. He explained that he had accomplished this feat of memory by associating the name with a mental reminder.

Later, a student inspired by the speaker’s phenomenal memory decided he could learn the trick . “Everyone calls me Capps,” I said. After that day, he called me “Tops” because he pictured something on top of my head.

Memory problems can create amusement for those of us who are so distracted that we can’t remember simple things anymore. Normal aging accounts for a certain amount of forgetfulness. My husband thinks my memory problems are because my mind is clogged up with too much trivia. “It doesn’t work like that,” I confidently assure him every time he says that.

Short-term memory loss is an early sign of Alzheimer’s disease. Along with short-term memory loss, a person with dementia can’t remember all the steps to complete a task. A strange environment can make this even worse.

One time, we were on vacation and Jim started to make a pot of coffee. The following excerpt from Jim’s memoir Indelible explains how dementia can turn an everyday task into an ordeal:
  
One morning Jim prepared to make coffee in the in-room coffeemaker. He picked up the pot, set it down, picked it up, and set it down. He looked around in confusion trying to decide what to do next. From the bed, I said, “Put coffee in the basket.” 

“Oh! That’s right.” He added the coffee and then acted as if he expected the coffee to make itself.

“Put water in the pot.” He put water in the pot.

“Pour it in the top.” He poured it in.

“Turn the pot on.” He turned it on. As soon as the coffee was done, he was back in full form. He poured the coffee into the thermos, cleaned the pot, and brought me a cup of coffee in bed.

Memory is a tricky thing. As far as that pesky number, Harold and I were on our way to an appointment and he asked, “Do you remember the number I asked you to remember yesterday.”

“Two-eight-six,” I replied without hesitation. “What I don’t remember is why the number was important.”

Harold thought about it for a few minutes. Finally, he broke the silence with, “I don’t remember either.”

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, August 17, 2017

Total Eclipse of the Heart


I can remember a solar eclipse when I was a kid. We were warned not to look directly at the sun, but to use a pinhole in a box to see the shadow of the eclipse. Now, in less than a week, we are going to see a total solar eclipse—a once in a lifetime event.

So how this weird happening is going to shake out remains to be seen. I live in the area of totality. That means I can observe the eclipse in my own backyard. It also means that some of my relatives who live outside the area of totality are going to share in the experience by coming to my house. That is, if the roads aren’t gridlocked with the thousands of folks from the four corners of the United States who plan to flock to the area of totality.

Watching the eclipse isn’t something you do on the spur of the moment. If you plan to look at the eclipse, you must have proper eyewear. Before we ordered ours, Harold researched the ISO ratings, reputation of the seller, and recommendations from the brightest minds in the world. His vigilance paid off since our glasses were not among those “recalled” due to being questionable.

All this talk about eclipses reminds me of Bonnie Tyler’s “Total Eclipse of the Heart.” I visualize a total eclipse of the heart as a heart that is beyond broken--a heart with a shadow hanging over it.

Some events in our lives can hurt our hearts seemingly beyond repair. When we lose a loved one to an accident, to incurable disease, or from suicide, life ceases to be the same. During the total eclipse of the heart, it seems that life will always hurt.

I can’t think of anything sadder than losing a child or a grandchild. As hard as it was for me to lose Jim to dementia, I can’t even imagine how heartbreaking it was for my mother-in-law. Our sons were grown when Jim developed dementia, but younger onset dementia or familial Alzheimer’s disease can often leave school aged children without a parent.

In the United States, 15.9 million unpaid caregivers provide care for a loved one with Alzheimer’s. Caregiving for a loved one with dementia is more labor intensive than for seniors without dementia. About a quarter of the caregivers responding to a survey reported they provided 41 or more hours of care a week. Caring for a loved one with dementia is often a long-term commitment. According to the NIH and aging trends study, 47.4% provided care for more than six years.

Investing the time and energy to provide quality care for a loved one with dementia is the ultimate act of love. Caregiving becomes a way of life and when that ends, emptiness fills the space.

The concept that love can be a total eclipse of the heart takes on additional meaning when you learn more about a total eclipse. The world, as we know it, is transformed into a strange place when darkness falls in the middle of the day and the temperature drops dramatically.

Time becomes your friend as you rebuild your life. Much like the total eclipse, the shadow gradually moves away and the world is bright and normal again. A new normal, but normal.

Copyright © August 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Tuesday, August 8, 2017

Rest in Peace, Rhinestone Cowboy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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