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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