No Present like the Time

 

Saturday night, Sedalia was blessed with the talent of Jay Allen, brought to us by the vision and determination of my friend, WyAnn Lipps. When Jay was on The Voice, he spoke of his mother’s early-onset Alzheimer’s and how his song “Blank Stares” had raised millions for Alzheimer’s.

Jay’s dedication to the cause was evident when he was on the show, but during the concert, he let us know that the only reason he went on the show was to gain more visibility to raise money to end Alzheimer’s.

During the “meet and greet” before the performance, Jay took time to ask names and stories. He had the compassion born of the grief of someone who had lost a loved one to the devastation of Alzheimer’s. He noticed my purple toenail polish and said, “Your toenails are painted purple—you are all in, aren’t you.”

“All in” exactly describes our core of volunteers. WyAnn was definitely “all in” when she saw Jay on The Voice and wanted him to be a voice in our community. She and Jay clicked and a date was chosen for the event.

The MU Naturelles opened the show with their talented a cappella performance loaded with spirit and sass. This group included WyAnn’s granddaughter Chloe. As I pointed out to some friends, I knew Chloe when she was shorter than I am. She’s always been a joy to be around and a talented vocalist.

I had watched and rooted for Jay when he was on The Voice so it came as no surprise to me that he was an excellent entertainer who put his heart and soul into a vibrant performance. The audience was small since we had competition from proms, conferences, programs, competitions, and all the other usual entertainment and events at the end of April.

Jay asked everyone to move to the front, encouraged everyone to stand at the edge of the stage. He spent the evening interacting with the audience while he gave a stellar performance. He is a complex man who is unafraid to speak of his faith that his mother is in heaven. His music reflects his faith and embraces his joy in life. Jay has an excellent sense of humor and created a party atmosphere, but in a family-friendly way.

Of course, “Blank Stares” is a song that resonates with me. Jim’s sister told me one time that Jim had a “faraway look” in his eyes. At times, it seemed as if he was looking through me instead of at me.

Jay sang another song that touched my heart and that song is “No Present like the Time.” I lost Jim, first to the disease, and then to death. I was thankful that we had taken vacations to Oregon, Estes Park, and Branson. We filled our lives with music, campfires, love, and quiet conversations over our morning coffee. The gift of time was cut short, but we made the most of the time we had.

After Jim was diagnosed with dementia, I learned the wisdom of living and appreciating the present. I didn’t want to compare the man he was to the man he had been before the disease, and I didn’t want to dread how he was going to change as the years went by. “No Time like the Present” sums it up succinctly.

Jim died at 59 and I am forever grateful that “out of all the millions of girls in the world” (as he used to say) he chose me to spend his life with. Having known true love, I was in a better position to move on with my life and find love again. The older I get, the more I think like my mom, who often says, “Well, I woke up this morning so it’s a good day.”

 

Copyright © April 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

The April Blues

 

For the past week or so, I’ve had the blues. I’ve had a hollow feeling as if I were homesick although I was at home. My moods have swung from sad to cranky. The late night thunderstorms haven’t helped me physically or mentally. I feel as dark as the night and as mercurial as the lightning. 

Some April days have been sunshiny and warm. The lilacs bloomed and their fragrance filled the air with memories. When I walked from the shadows into the sun, I soaked up the warmth and felt better. Contentment and happiness flirted with my feelings of impending doom.

When I opened my eyes this morning after a painful, restless night filled with haunting dreams…I was crushed by the weight that today marked the anniversary of Jim’s death.

After eighteen years, surely the day would pass without pain and tears. As I looked through Jim’s pictures on my PC, I saw a video of Jim and his brother Bill singing “Bridge Over Troubled Waters.”

Music was always a big part of Jim’s life. He loved to play his guitar and sing. Now that I play my “little guitar” or ukulele, I understand the therapeutic value of music.

Music can be a reflection of our souls and magically fill our hearts and minds with memories. When I sing one of the songs that Jim used to sing, it makes me feel a part of him resting peacefully inside my soul. I can hear his voice in my ear, encouraging me to find the heart of the song.

For the past week, I’ve been too busy to take time to play my ukulele and sing, which may be part of the explanation as to why I’ve been so sad. Jim always said that music was his therapy, and I think he was onto something.

Today will pass in a few hours, and tomorrow will be merely another day. I’m going to pick up my ukulele, play some happy songs, and know that somehow, someway, life has brought me to this moment. Life is too precious and short to let sorrow steal it from me.

I’ve had my cry; it’s time to move on and sing a happy song. I’ll sing it for me—and I’ll sing it for Jim.

 

Copyright © April 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

Out of Power

 

Lately, the wind blows at two speeds—hard and harder. The bad thing about wind is that flying limbs, trees, and debris cause power outages.

During recent local outages, I was sitting in my home feeling smug because we have a generator with an automatic switch that keeps the power flowing. Normally, the switch is so rapid that I don’t know if our power has gone out unless I check the electric cooperative’s website.

Last week, I was on the phone with my mom when the lights went out. “I don’t know what’s happened because the power went off and the generator didn’t kick on.”

“Maybe it will just take it awhile,” she suggested.

“No. It comes on instantly.” I looked at the clock on my PC, which had switched to battery without so much as a flicker. “Mom, I’ve got to go. I need to leave in fifteen minutes, and I can’t possibly get our garage doors open manually.”

I called Harold’s cousin which I refer to as 911-Ivan. I asked Ivan if he could come and start the generator so I could get out of the garage. I looked out and saw him coming through our gates in about five minutes. I went out the front door and met him at the generator shed. The generator would crank, but wouldn’t start.

Plan B was to have Ivan come in and open the garage door for me. We got to the lift to take us to the basement level, and he said, “Does this run on electricity?”

“Yes, it does, but it has a battery backup.”

Ivan opened the overhead door and as I backed the pickup out of the garage, I rolled down my window. “Looks like the power is back on,” I said, pointing at the light that comes on when the garage doors open.

We take power for granted, but when it fails, we feel powerless. When Jim was diagnosed with dementia of the Alzheimer’s type, I asked the physician, “Isn’t there medication for that now?” I was certainly disappointed when he told us that the FDA had only approved one drug, and it was to help with symptoms only. The drug, Cognex, would not stop or slow down the progression of the disease.

Once I knew that Jim had an incurable, progressive brain disorder, I battled with a feeling of powerlessness. For early-onset dementia, or younger onset, the life expectancy is shorter than it is for dementia in the elderly.

Typically, I am an optimistic person, and I decided that we would do everything we could to make life better for both of us.

Although Jim’s dementia was the most traumatic experience of my life, it is also the reason I am the person I am today. Through volunteering, I have met people who became dear friends, learned how to be a voice for the voiceless, and gained hope that someday we would find a cure or effective treatment for Alzheimer’s. Research has come a long way since Cognex, and new drugs are the tip of a spear that will destroy Alzheimer’s.

We just can’t fathom how important power is until we lose it. I learned to take one day at a time, one hour at a time, or minute by minute.

As a caregiver, I coped by not looking back or worrying about the future. I learned to accept and love Jim as he was. I cherished the moments of clarity, or the times he broke through the bounds of aphasia to speak, and the warmth of his hugs.

When the power goes out, light a lamp and move bravely through the darkness.

Copyright © April 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ

 

Sound the Alarm

“We got a package yesterday,” my husband told me while I was cooking breakfast.

“I was outside several times, and I never saw a package,” I replied.

After staring at his phone a few more minutes, he said, “It’s on the front porch.”

I walked to the front door and glanced through the door. Sure enough, there was a package sitting on the welcome mat. My dog was hot on my heels, because when I open the front door, it usually means “company” is there.

I unlocked the door and immediately, our security alarm emitted an ear-piercing racket. I slapped my hand over my ears and raced, as fast as possible on my arthritic knees, to the keypad to turn off the alarm. The dog sped past me for the safety of the bedroom, skidding to a stop under the bed. Harold was shouting, “What’s the code?” because immediately the phone began to ring, and we didn’t want emergency vehicles dispatched because I opened the front door.

After I shut off the alarm and dispatch had been assured there was no emergency, I decided I’d better take the dog outside. I went to the bathroom and sat on the jacuzzi steps to put on my sweatpants. The dog was so traumatized that she kept trying to climb on my lap.

Sounding the alarm can sometimes be a false alarm, but when it comes to our health, we often brush our fears aside and assume that everything is going to be all right. This is especially true when it comes to our cognitive health.

I’ve read numerous books about Alzheimer’s disease over the past twenty-five years. One that stands out in my memory is a book where the author said she did not realize her mother had dementia until she killed the cats.

Fortunately, for most of us the realization that something is terribly wrong isn’t so dramatic. It can be an accumulation of small moments in time, or it can be like a bolt of lightning out of a clear blue sky.

On an ordinary day, Jim and I went to the car dealership where my son was buying a car. In the process of co-signing, the salesman asked Jim for his social security number. Jim had a blank look on his face, and finally said, “I don’t know what it is.” Ding, ding, ding, alarm bells clanged in my head. Jim always had a talent for remembering numbers, and his social security number had been his Army service number. When I realized Jim wasn’t joking, I supplied the number since I also knew it. Still, sometimes, I could forget my social security number so I brushed it off, figuring it was a false alarm.

“What’s your birth date?” was the next question.

After another deer-in-the-headlights look, Jim shrugged and casually said, “I guess I can’t remember what that is either.” I supplied the birth date, and could not ignore the heart-splitting alarm. Jim was forty-nine years old and up until this moment, I hadn’t noticed anything out of the ordinary.

Shortly after the numbers crisis, we began a long and arduous investigation into why Jim was not thinking clearly. After various inconclusive physical tests, a psychological test determined that Jim had dementia of the Alzheimer’s type.

Although the first conclusive test for Jim was a psychological test, Alzheimer’s or related dementia is not a mental illness—it is a neurological, degenerative brain disorder. Later, his MRI showed brain shrinkage.

After a false alarm, we breathe a sigh of relief. When we know the alarm is real, it’s time to use all available resources to fight the best fight, and to live the best life.    

 

Copyright © March 2023 by L.S. Fisher

http://earlyonset.blogspot.com

#ENDALZ