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Wednesday, October 11, 2017

A Lucky Mistake

I left early for grandparent’s day at my grandson’s school so I could go by and visit my mom. Delays can happen when driving more than an hour, and I didn’t want to be late for the 2:10 event.

I  had called Mom as I pulled out of the driveway. “Would you like to go with me?” I asked.
She was having lunch with my younger sister. “We’ll be home by the time you get to town,” she said.

When I arrived, my mom and sister were at Mom’s house. We had a nice visit and a photo op before Mom and I headed to the school. We arrived at the school at 2:00 p.m. and I sent my daughter-in-law a quick text to double-check the grade he was in. “I think he’s in the fourth grade,” I told Mom, “but one year I showed up for grandparent’s day and went to the wrong room.”

My daughter-in-law confirmed that he was in the fourth. “We’re here!” I texted.

Mom and I walked up to the door and pushed the buzzer. “We’re grandparents,” I said. The door unlocked and we went inside. A woman behind a desk motioned for us to come inside the office.

“Grandparents day is tomorrow,” she said, holding up a flyer as proof.

Just then my phone buzzed, “Oh, no,” my daughter-in-law texted, “it’s tomorrow.”

I immediately thought of Alzheimer’s sign #4 “Confusion with time or place.”  Just as quickly I remembered that, occasionally, messing up an appointment is a normal age-related change. Whew! Dodged that bullet.

“This is what happens when you retire,” I said. “You lose track of the day of week or the date.” Today was the tenth and grandparent’s day at school was the eleventh. Close, but no horseshoe, as the old saying goes.

“You are exactly on time,” the woman said as if I needed some reassurance that I wasn’t completely in la-la land. “You’re just a day early. You can come back tomorrow.”

“I have an appointment tomorrow,” I said. Yep, for 2:15 p.m. no less.

“We have practice tomorrow,” my mom said. She and other family members play music at area nursing homes and they do a final run through before the week begins.

“Could we at least see him?” I asked.

She buzzed his room and in a few minutes, he came down the hall. We had hugs and a photo op.

“Enjoy visiting with your other grandma tomorrow,” I said.

I couldn’t help but think going a day early was a lucky mistake. I was able to spend time with my mom and saw my grandson. Grandparent’s day came a little bit early this year.

Copyright © October 2017 by L.S. Fisher
#ENDALZ 

Wednesday, October 4, 2017

The Ten-Year Leap

I can remember a co-worker who always said getting old was better than the alternative. She did have a solid point.

Unfortunately getting older does have its pitfalls. A good day can be defined as one when something isn’t aching. It seems that the older we get the harder it is to jump out of bed in the morning. I tend to drag myself out of bed and head toward the coffee pot. After the first cup and a few stretches, I feel almost human again.

It scares me to think that I’m the age now when Alzheimer’s isn’t even considered early (or younger) onset. Nope. I’m solidly into the age where if it happens, it falls into the statistical data as the ages of greater vulnerablity.

Although Alzheimer’s is a disease and not a normal part of aging, age is still the biggest risk factor. If that news wasn’t bad enough, two-thirds of the Americans living with Alzheimer’s are women.

A gene called APOE (apolipoprotein E) regulates lipid metabolism. Less than five percent of the population has APOE2. This gene lowers the risk of Alzheimer’s. The most common variant is APOE3 which does not affect risk of the disease.

The culprit is the e4 version that increases the risk of Alzheimer’s disease. Most of us don’t know whether we carry the e4 version of APOE. Jim’s neurologist asked to do genetic testing on Jim and I gave permission. He had one copy of APOE4 and one APOE3.

Gender further increases risk, especially for women. A study at Stanford University Medical Center in California used brain-imaging studies to determine that a woman with one copy of APOE4 has a much greater risk of developing Alzheimer’s than a male with one copy.

A study at the University of California found that women with a genetic predisposition to develop Alzheimer’s disease do so at an escalated rate between the ages of 65 and 75. It is believed that the reason the risk increases for women in this age bracket is because menopause and decreased estrogen begin at about 51.

If you inherit two copies of the APOE4 gene, your risk is even greater. This too, is not a complete determinant since some who have two copies do not have Alzheimer’s and some who don’t have the e4 version have Alzheimer’s.

People whose parents have dementia often fear developing dementia in their older years. My dad died when he was my age, but my ninety-year-old mother is as sharp as ever. I believe part of mom’s success is that she is active and takes almost no medications. In fact, we’re pretty sure she’s in better health than my siblings and I are.

The good news is that APOE4 isn’t a doomsday diagnosis. The bad news is that I have entered the ten-year period when women experience a leap in developing Alzheimer’s disease. More good news is that I at least plan to stay active like my mom. My goal in life is to find that fountain of youth she found and drink my fill.

Copyright © October 2017 by L.S. Fisher
#ENDALZ

Thursday, September 28, 2017

Catching Up

Here it is autumn already. The season is catching up with the dead looking leaves on the trees attacked by the Japanese beetles. Hopefully, we’ll get some nice fall colors out of the remaining leaves.

The yard is starting to look like autumn. We are surrounded by cornfields that have turned golden brown as they quickly approach harvest time.

Yesterday was the first day it was cool enough to think of dragging out the autumn wardrobe. At least it was a day I didn’t feel like I had to wear a sleeveless blouse to keep from melting. We even had a gently autumn rain.

I wore a hoodie this morning when I walked the dog. With her long hair, she seems to be enjoying the autumn crispness too.

I keep telling myself that I need to get in gear and drag out my fall decorations. Last year, it was nearly Halloween before that happened. Unfortunately, decorating often falls into the “I can do that tomorrow” category. It seems each day I have a list of things that have to be done that day and can’t wait until the next. Or worse yet, the things that should have been done last week…or the week before that.

Catching up happens every year after Walk to End Alzheimer’s. I have a lot of catching up to do. I tend to let everything else slide in the last few weeks before Walk, and often in the two weeks following. That means the last week in September and the first week or so in October are times to put on a different hat and catch up on everything I put on hold during the walk.

Every year I look at my September calendar and think…it won’t get busier than this. Then, I flip the page to October and have to take deep breaths before I admit that I’m not going to be caught up until at least November.

I have several days on my October calendar double-booked and two days triple-booked. I have some serious choices to make. Throw into that the unknown, unexpected things that happen and October just got really, really scary.

I can’t help but wonder what I would do if I ever did actually catch up. I kind of think that’s never going to happen. Makes me think of what my sister-in-law used to say, “The hurriered I go, the behinder I get.” That just about sums it up.

Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Thursday, September 21, 2017

For Those Who Wait

We didn’t get any decent tomatoes all summer long. Harold left for town this morning and gave me a call. “We have three or four semi-ripe tomatoes.”

“Okay, I’ll go out and pick them,” I said. I walked out to the potted tomato plants expecting to pick a few and bring them inside. Ripe tomatoes were everywhere. The saying, “Good things come to those who wait” popped into my head.

You wouldn’t think that I’d even think of this expression since patience is not one of my virtues. Sure, I have a lot of good qualities: empathy, a good work ethic, general optimism, and so forth. Patience does not make that list. Nope, not even as an afterthought.

My lack of patience gets me into trouble sometimes. I get really frustrated when I’m trying to open a file on the internet. I absolutely hate waiting for that little circle to stop spinning. Or for an ad to pop up and obstruct my view. Life is too short to wait, and wait, and wait. Often, I’ll just close it and figure that I didn’t really need to know the latest “shock and awe” news story.

Patience. I know men don’t usually have any patience, but everyone expects a woman to have it. I used to have a certain amount of patience, but I guess years of budgeting my time has zapped what was left of it.

My saving grace is stubbornness, or bull-headedness if you ask certain people. When I don’t have the patience to complete a task, I’m stubborn enough to see it through.

I’m starting to lose patience with a cure for Alzheimer’s. People die every day from Alzheimer’s and related dementias. We can’t find a cure soon enough to suit me. I can’t wait for the first survivor.

We thought about that first survivor at the Walk to End Alzheimer’s this year. During opening ceremony, we hold high pinwheel flowers in various colors to represent the walker’s connection to the disease.

I always choose a purple flower because I’ve lost someone to the disease. Yellow is the color for caregivers, blue for those who have the disease, and orange for those who are supporters. This year, a new flower was introduced. Two young children held up the white flower that represented our hope for the future. The white flower is for the first survivor. That person does not exist at this time.

After the ceremony, they gave me one of the white flowers. I hope before much more time passes, I can take the white pinwheel back to the walk and personally hand it to the first survivor in our town. I hope to see our walk filled with white pinwheel flowers.

No, I will not patiently wait for the first survivor. I’m going to be walking, advocating for more research funds, and doing all I possibly can to push, cajole, and become the squeaky wheel.

Patience is not one of my virtues. I might as well make the most of my shortcoming.   

Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

Monday, September 11, 2017

Together We Can…

Saturday was my twentieth Alzheimer’s Walk.

In 1998 the year of my first walk, four troublesome years had passed from the time I had noticed Jim was having trouble remembering basic information. Jim had always had an amazing recall for numbers and dates, but had forgotten his social security number. I thought that strange, but I didn’t push the panic button until he admitted he didn’t know his birth date either.

After testing, it was determined that Jim had dementia of the Alzheimer’s type. Jim, of course, insisted he didn’t have “that,” as he referred to it, but when we saw an article about an upcoming “Memory Walk” in Sedalia, he wanted to go. “I have memory problems,” he said. I had already signed up for the walk and had raised some money, but since Jim didn’t have “that” I thought he wouldn’t want to go.

We arrived at the first walk to discover we were the only people from Sedalia. The other walkers were Helen and Chuck from Slater, Joetta and Penny from the Alzheimer’s chapter office in Columbia, and Penny’s dog, Victoria. Six people and a dog, and I knew all their names—including the dog.

Saturday, was a different story. More than three-hundred walkers and thirty-six teams crowded into the highway gardens. We had professional DJ’s, a super sound system, corporate sponsor booths, volunteer shirts, a professional photographer, and pinwheel flowers. We even had an official playlist of songs. At the first walk, the closest thing we had to music was Helen’s hunting horn. The highlight of the walk was going into the VFW where a veteran asked Helen to blow her horn. After she blew her horn, they took up a collection to add to the walk total. The grand total was $600, almost all of which I had collected from co-workers and friends.  
 
To make my twentieth walk special, I wore my 1998 shirt and my team wore the 1999 - 2017 shirts. We knew they weren’t exactly vintage shirts, but my niece and I laughed about struggling not to call them vintage. Old, I guess was the correct terminology.

Yesterday, Facebook posted a “memory” from twelve years ago, September 10, 2005. My son, daughter-in-law and their two kids were at the Memory Walk wearing 2005 shirts. I smiled at how small the grandkids were, and then I realized that was how small they were when Jim died earlier that same year. It made me incredibly sad to realize that they lost their grandpa at such a young age, and Jim missed out on seeing his grandkids grow up. Family was everything to Jim. He loved being a dad and was over the moon about being a grandpa.

It’s hard to believe that I’ve been doing what I’ve been doing for twenty years. I logged my shirts before I took them to the walk to make sure that all the years were covered. Some of the shirts did not have a year and I had to look at photos to determine which years went with which shirts. Then, I identified the shirt by what it said: Move; We’re on the Move; WALK (in Alzheimer’s Logo).

After the walk changed from the Memory Walk to the Walk to End Alzheimer’s, the message on the shirt conveyed increasingly positive meanings. The 2017 shirt, Together We Can End Alzheimer’s, told its own story. When we work together, we can change impossible to possible.

It is shocking to realize that my kids are older than I was when Jim developed those first troubling symptoms. Time passes so quickly. Lifetimes come and go. There have been times in my life when I felt I was walking alone, but more often, I’ve relied on and been supported by others. Together, we can accomplish anything. Together, we can accomplish everything. Together, we can end Alzheimer’s.

 Copyright © September 2017 by L.S. Fisher

#ENDALZ #GoJimsTeam

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