Resets and Do-Overs

Each January, we greet the New Year with optimism that we will experience a whole lot of “happy.” Somewhere in the recesses of our brain, we seem to think putting up a new calendar magically starts everything anew.

How we felt about 2016 may depend on how we look at life in general. If we accept the ebb and flow as a natural part of the tides of life, we probably didn’t see a lot of difference from any other year. Some of us, in any given year, have major life events that will forever distinguish certain years no matter how much time passes.

Other than those special years—graduation, marriage, births, deaths, etc.—the years of my life just blurred together. In retrospect, I couldn’t even tell you which years were good years and which were bad unless some exceptional event set it apart from others.

Jim was the most amazing person I ever knew when it came to dates and years. I believe his ability to remember his past so distinctly was because of his phenomenal memory coupled with living in so many different places throughout his lifetime.

I had hoped that 2016 would be the year when a breakthrough in Alzheimer’s would make this a red-letter year. Although, we’ve had successes, we are still short of the prize. This year saw a historic increase in Alzheimer’s research funding, and that increase holds a prayer and a promise that we may be on the cusp of the ultimate discovery.

Personally, this year held failures and successes. I lost an election, won a prize, finished some projects, and plodded along with others with no end in sight. I’ve been blessed with generally good health, with only a few minor setbacks. I’ve made several new friends and lost a few.

On the positive side, I learned how to line dance this year. I helped with my brother’s memoir, and I’m so proud of him and my sister-in-law for bringing his story to life. I’ve made many, many happy memories and found several dashes of humor in the world around me. I believe, I’ll give 2016 two thumbs up.  

Oh, is this when I should be thinking about resolutions for 2017? Will we ever learn that the all or nothing nature of resolutions sets us up for failure? I recently read that a paltry 8% of people are successful when it comes to resolutions. I’ve long been a fan of goals rather than resolutions.

Healthy Living recommends “resets” instead of resolutions. The point is that instead of attacking resolutions like gangbusters (my term, not theirs) on January 1, just to give up when you break it, reset each day. So you didn’t cut out all sugar on January 2 per your ambitious New Year’s resolution, simply reset on January 3, and try again!

Jim and I used to call that “overs.” When something didn’t work out the first time, we allowed do-overs.

In 2017, I would like to wish you a multitude of resets and do-overs to help you achieve your goals and to follow your dreams!    

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

The First Day of Christmas

1975

I recently watched a Christmas movie where gifts from the song “The Twelve Days of Christmas” arrived at a home prior to Christmas, with the final gift and message arriving on Christmas Day. While searching for the name of the movie, which turned out to be My Christmas Love, I came across two other Hallmark movies based on twelve gifts of Christmas.

The interesting thing I discovered during Christmas services this morning was that Christmas Day is the first day of Christmas, which means that I’ve always had the entire gift-giving thing backwards. I guess I’m not alone since Hallmark has it wrong too. I think we all assumed it was a countdown to Christmas in the same manner as advent.

So, on this first Day of Christmas, I can’t help but remember the Christmases past. In so many ways, the passage of time lies in our memories of white Christmases, balmy Christmases, blue Christmases, indifferent Christmases, bittersweet Christmases, beleaguered Christmases …well, you catch my drift.

My memories of Christmas fit all of those. I remember being worried as a kid that Santa couldn’t come unless there was snow on the ground.

The Christmas when I was 18, I spent fifteen minutes of Christmas day with my new husband. That was one of those blue Christmases as I headed home, and he headed back to Vietnam.

I remember many Christmases as a new mom, worrying whether “Santa” was going to be able to afford a decent Christmas for my kids. It seemed we always managed, and we let the kids open their presents on Christmas Eve to leave Christmas day open for the big dinner.

Since we spent Thanksgiving with my family, we always spent Christmas day with Jim’s family. Virginia would cook a huge meal and everyone was invited. We’d cram into her small house and on those “balmy” Christmas days, the overflow would go outside and eat Christmas dinner on the picnic table. The day would be full of joy, hugs, laughter, and love.

After the kids were grown, we had our family get-together on Christmas Eve. When my youngest son was on-call for his work, we just started having it on a Saturday before Christmas. We’ve just been flexible about it. Christmas Eve is my granddaughter’s birthday, so by moving our family gathering, she can celebrate her special day at home.

For the decade of Jim’s dementia, Christmas was bittersweet. I saw each Christmas become more and more disconnected from the traditional Christmases of our past. One year as I was clearing a shelf to decorate, I boxed up some of the framed photos that sat on the shelf the rest of the year. Jim silently pulled the photos out of the box and set them back on the shelf.

After Jim went into the nursing home, I brought him home for Christmas the first and second years. It went pretty well, but it was certainly different. After that, I spent Christmas day with Jim at the nursing home. After I came home later in the day, I usually missed most of the people who had come to Virginia’s house for Christmas dinner.   

Since Jim’s death, my Christmases have been a hodgepodge, but most would not be considered “traditional.” Still, in a way, they are somewhat traditional for me. All the hectic celebrations are out of the way by Christmas day. It has truly become a holiday from obligations for me. And that isn’t all bad. I love to light up the trees and enjoy the peace and quiet. It’s a great time to reflect on the good times and to count my blessings.

Since the twelve days of Christmas do not end until January 5, I suppose I should leave up my Christmas decorations until then. Whew, that takes off some pressure. I usually plan to take them down the first day of January, but now I have a reprieve. After all, we should celebrate all twelve days of Christmas, don’t you think?

I will also count myself as one who does not judge the people who leave their outdoor lights glowing until January 5. After that, seriously, shouldn’t you shut them off?

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Predictable and Unpredictable

I’ve watched several Hallmark Christmas movies lately and if there’s one thing that can be said for them—they are predictable. Even Harold who isn’t a fan had watched a few minutes of a show a few nights ago.

“Well,” he predicted, “she isn’t going to end up with the guy she’s dating at the beginning of the show—it’s going to be that guy she just met.”

“I can usually tell within the first few minutes who will be a couple at the end. These shows almost always end with a kiss, and a happily-ever-after.”

Predictable.

When I went to bed that night, I opened a Nicholas Sparks’ book. I told Harold, “You know, this book is predictable too. One of the main characters always dies in his books.” And, by the time I finished the book, sure enough. Death happened.

Predictable.

I haven’t figured out why I’m watching Hallmark movies or reading Nicholas Sparks when I’m a big, big fan of unpredictable stories with an unexpected twist at the end. Maybe these little happy movies and tearjerker books just let my mind go on autopilot rather than think about the unpredictability of life itself.

Sometimes we reach a point in our lives that we think yesterday was predictable, today was predictable, and tomorrow will be predictable. It’s about that stage in our lives when the unpredictable can throw us into a tailspin. Complacency never lasts forever, and a split-second can change your life forever.

The only predictable thing about life is that it is unpredictable. Nobody, but nobody, makes it through this world unscathed. What really matters is how we handle adversity.

In the first place, Hallmark movies aside, no one outside of a fairy tale, lives happily ever after. A kiss, or getting married, isn’t the end of a story; it is the beginning. When you utter the words, “for better or worse” and “in sickness or in health” you are uttering them for a reason.

The greatest test of traditional wedding vows is whether your love is strong enough to withstand the unpredictable—hard financial times, disease, heartbreak, accidents, death of a dear friend or family member, or even affluence at the expense of family time.

On December 20, 1969, I exchanged these promises with Jim. We didn’t have any idea what the future held for us. We were young and in love, so we took a chance. Life is unpredictable, but whatever it threw at us, we were in it together.

I believe the most unpredictable thing was that my level-headed, intelligent husband would develop dementia at forty-nine. Not only unpredictable, it was unimaginable, which is saying a lot for a person with my imagination.

Still, I wouldn’t have wanted to know on that day in 1969 that it would end the way it did. I’ve always been the kind of person who would never give up on life or happiness no matter what. I hope that never changes as long as I breathe.

Recently, I visited the cemetery to put a poinsettia in front of the columbarium wall beneath Jim’s marker. As I touched his name, a sharp wind blew causing my eyes to water. Well, at least I blamed the wind. When I climbed back into my car, I wiped the tears, and drove away to continue driving the unpredictable road of life.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Indelible: Memoir in Progress

Lately, I’ve been posting some short passages to Early Onset Alzheimer’s blog from Indelible, a memoir in progress. Several people have asked me when I will finish the memoir, and the short answer is “I don’t know.” I believe I can have it finished by this time next year, but there are no guarantees.

I began putting the memoir together in 2008, but the source documents date back many years. I began documenting Jim’s health from the time I first noticed something was terribly wrong. This document was extremely useful when we began the physician circuit looking for answers. Did you notice that you have to fill out forms for every doctor you see? It was much easier to answer the questions when I knew the answers.

“Wow!” One nurse said when I handed her Jim’s health questionnaire. “I don’t know that much about my own medical history.”

“I don’t know that much about mine either,” I admitted.

In addition to capturing emails where I kept friends and family updated on what was going on with Jim, I transcribed a collection of audio tapes. I kept the recorder in my car and as I left the nursing home, I talked about how things were going at the home, with Jim, and often the humorous antics of the residents.

I started each tape with the date: “It’s October 15, 2004, and I’m on my way home…” By the time I heard my voice saying the date, I would know whether it had been a good day or a bad day. Often I’d say, “I’m just so tired.” It seemed like I never had enough hours in the day and that I sacrificed sleep to get everything done.

When I pulled all this information together, I had an unwieldy documentary of our dementia journey. Every time I sat down to work with the raw material, I became overwhelmed. The enormous task of weeding through the minutia to uncover the story was part of the problem, but the biggest problem was dealing with the emotional blow of re-living the most heartbreaking years of my life.

In January 2008, I decided to begin a blog dedicated to early onset Alzheimer’s. My first blog post, “The Indelible Mark” was an epiphany brought on by a dream.

What does an indelible marker have to do with dementia? When someone we love has Alzheimer’s or a related dementia, we often think they are fading away as their memories and skills are erased. We grieve for the past and dread the future. Yet, we are blessed with living in the present and find moments of joy radiating in the midst of an ordinary day.

When Jim developed dementia at forty-nine, we knew life would never be the same. Our memories eventually became my memories. The disease stole Jim from me, but it could not steal the indelible mark he left behind.

Alzheimer’s Anthology of Unconditional Love are indelible images of Jim. In one picture, he smiles from beneath his favorite Stetson. In the other, he walks away from the camera on a beach in Oregon. I can’t imagine his indelible memory living in a happier place.

This short blog post was the beginning of telling Jim’s story in a manageable way.

Helping edit my brother’s memoir Sanctity inspired me to go back to work on our story. So I pulled up the rough draft and began working my way through it.

I am in a better place to work on the manuscript now. Enough time has passed that I can handle the emotional baggage—most of the time.    

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from "Indelible": Happy Anniversary

Excerpt from “Indelible” (memoir in progress): 

“I brought balloons for our anniversary,” I said, and he smiled. One had a yellow smiley face with kisses on it, and the other said “Happy Anniversary.”

“Today is our thirty-fifth anniversary,” I said. “We sure were young then.”

He looked at me like he didn’t have a clue what I was talking about, but he liked the balloons. I put the balloons close to the fiber optic tree I bought him earlier in December.

Jim leaned back in his recliner and turned his head to watch the tree. He looked at the tree, the balloons, and then at me as if he wanted to say something. He moved his mouth like he was going to talk, but no sound came out.

             

I sang some Christmas songs to him and he seemed to understand what I was singing.

“I’m trying to get him to say Rudolph,” I told the aides when they came in his room.

“If you get him to say ‘Rudolph’ we will bow down to you,” one of them said.

The aides left and two of the residents came in with the name cards from their dinner trays. They handed the cards to me and one of them said, “Will you take our tickets so that we can get a room tonight?”

“You already have a room,” I said.

 “No, we don’t have rooms, but we have tickets,” she said, “We just need to figure out who to give the ticket to.” I handed them back their “tickets” and they wandered away in search of someone who would give them a room for the night.

An elderly gentleman walked down the hallway, stopped in the doorway, and said, “Hello ma’am. How are you? Merry Christmas!”

“Merry Christmas!” I said.

“All I want for Christmas is a Cadillac,” he said.

“I guess we could all wish for that for Christmas,” I said.

“Good night, Ma’am!” He turned around and headed back the way he came from. I didn’t recognize him and had been trying to decide if he was a visitor or a new resident. He was dressed a little oddly, but seemed with it intellectually. I thought that maybe he was a resident by the way he stopped, turned around, and went back.

I began to feed Jim, and he ate pretty well, but he choked when I was about finished. I stayed for a while longer to make sure he was okay. I put his recliner in a more upright position and moved the balloons and card to his tray.

Jim was looking at the balloons. I was surprised they had held his attention that long. At least he was looking at his surroundings. Sometimes he wouldn’t look at anything.

I kissed him goodbye. The lump in my throat made the words come out in a whisper, “I love you sweetheart. Happy anniversary.”

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from “Indelible”: Christmas 2003—Snowdrift Memories

Excerpt from "Indelible" (Memoir in Progress): 

I gave Jim a bath before I fed him. When I took him back to his recliner, he fell asleep, tilted, and fell. He finally started taking steps even though he didn’t seem to wake up. He finally woke up when I put him into his recliner.

 I had planned to take down his Christmas tree, but the box was still in the car where I had forgotten it. The rain pelted against Jim’s windows, and I dreaded going back outside.

As I spooned his food, I talked to him. “Well, I’m not going back out in that crap to get the box for the Christmas tree.” Jim’s eyes moved toward the tree. “I guess you’ll get to enjoy it one more day.”

Since Jim had been in the home, the only thing that kept me off the roads was snow drifted so deep I couldn’t drive on the gravel roads. The roads drifted depending on which way the wind blew. If the roads running east and west weren’t drifted, then the roads running north and south would be.

I could remember a time when I wouldn’t dream of driving on wintry roads, but then, I didn’t have to drive when the weather was bad. Jim used to drive me to work when the roads were slick. It seemed that the worse the roads, the more he wanted to drive on them. He called it “busting the drifts.” Driving a four-wheel drive wouldn’t have been half the fun of traversing treacherous roads in our old two-wheel drive cars, pickups, or vans. We had been stuck in many snowdrifts.

One morning, several years ago, Jim and I headed off to work in our baby-blue Ford van. Jim  navigated the drifted snow like nothing was wrong. We drove past his brother’s house, and we could barely see the tracks Billy had made on his way to work. Snow was still falling and high drifts had formed on the section of Sinkhole Road that headed north.

We slid and plowed through the snow until we came to a standstill in a drift.

“Guess, we’ll just have to go back,” Jim said.

“When we get home, I’ll call and tell them I’m drifted in,” I said.

Jim threw the van in reverse, but it wouldn’t budge. There we sat in the middle of the road, giant flakes of snow falling in the predawn hour.

“We might as well walk back to Billy’s,” Jim said.

“Okay,” I said, grabbing up my purse and lunch. I tried to force open the van door, but it was pushing snow.

I slammed the door. “I’m not going out in that! The snow is up to my knees, the wind is blowing, and it’s like a blizzard out there.”

“Well,” Jim said, picking up the thermos and pouring two steaming cups of coffee, “We’ll just wait here. No one can get past us without helping us out.”

Smiling at the memories of being stuck in snowdrifts with Jim, I pulled a blanket over him and reclined him in his chair. Jim turned his big blue eyes toward me, and for an instant, I was looking into the eyes of the man Jim used to be when he was my lover and my best friend.

“Goodnight, sweetie,” I said, kissing him on his nose. His eyes glazed over, and he seemed to be looking through me. Robotically, he turned toward the TV, and its dancing lights and music grabbed his attention.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from “Indelible”: Christmas Eve 2001- Mario Karts

Excerpt from “Indelible” (memoir in progress):

Another Christmas. I put up a tree while I was alone in the house and didn’t cry.

The nursing home halls were ornately decorated for the holidays. “Jim stopped his merry walker in front of Santa,” the charge nurse said pointing at a wall hanging of the jolly old elf. “Then, he stopped and said, ‘Hello, Santa.’” She held up her hand as if to swear it was the truth.

“Wish I’d seen that!” I said. Jim spoke so rarely.

Among the Christmas decorations, was a flag made with cutouts of children’s hands. It had been hanging on the wall since a few weeks after the September 11 tragedy.

A few days after the Santa incident, I noticed Jim stopping in front of the flag and tipping his cap. I thought maybe he was just adjusting it, but a few days later, he stopped in front of the flag and saluted it. 

There was some discussion among the family as to whether I should bring Jim home for the traditional Christmas Eve gathering. My thoughts were that Christmas was for our family, and Jim was still part of that family.

I brought Jim home and helped him out of the van and down the walkway. He took his usual seat on the reclining section of the couch.

Rob and Colby were playing video games on the TV. Before long, he yelled, “Hey!” and jumped up and started going toward them.

“I wonder if he wants to play,” I said. At one time, Jim loved video games, and he played Mario Karts long after he was in the nursing home.

Rob ejected the game they were playing, and inserted Mario Karts into the Play Station.

“Here, Dad,” he said as he handed Jim a control. Jim didn’t seem to remember how to use it, so Rob passed the other control to Colby and helped his dad maneuver the one he held.

After a few races, Jim remembered how to run the car around the track, but the master of the game was not competitive.

Colby, in true Fisher fashion, bragged about winning. “I beat grandpa!” As young as he was, Colby knew his grandpa’s reputation for being a formidable opponent.

We ate dinner and Jim did pretty well. He didn’t try to leave the house; he just paced up and down the halls. We opened presents and, of course, Jim was not interested in that.

After the gift exchange, I took him back to the home. Jim didn’t notice the cheerful Christmas lights on the houses we passed. He did pretty well until we got about halfway back. He yelled and tried to get out of his seatbelt. I may have bundled him up too much trying to keep him from getting cold, and instead he was entirely too hot.

We never knew that due to circumstances, and Jim’s declining health, this would be his last Christmas at home.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from “Indelible”: Colorado 1999

Excerpt from “Indelible” (memoir in progress):

In 1999, my mom and my nephew Jason went with us. Jim was a Michael Martin Murphey fan and owned every audio tape Murphy had released. As we drove down I-70 through the wheat fields and sunflowers of Kansas, Jim insisted on listening to these tapes.

As Jim napped in the back seat, my mom looked at me and said, “You know I always liked Michael Martin Murphey.”

“Me too,” I said.

“But…after listening to him for hours and hours, I don’t care if I never hear him again.”

“Me either,” I said.

Jim was becoming more eccentric. He wore sunglasses day and night and walked with a cane. He tore paper towels in half, then folded them tightly. He stuffed them in his shirt and jacket pockets making the pockets bulge and giving his chest a misshapen look. His denim jacket was covered with decorative pins. He wore a tattered Branson Veteran’s nametag that was removed only when I washed the jacket.

Jim insisted on eating cottage cheese and pineapple with every meal, including breakfast. We fixed most meals in the cabin, so he could have the food he wanted.

The cabin was a new environment, and Jim couldn’t figure out how to work the water in the shower, so I helped him. Then, I helped him dress. One morning while I took a shower, Jim walked out the door and down the road.

“Jim’s gone out the door,” mom told me.

I shut off the water, “See if Jason can catch him.”

By the time I got out of the shower and dressed, Jason and Jim came through the door.

“I didn’t know what to do, so I told him you needed to talk to him,” Jason said. “When I told him that, he turned around and came back.”

We spent our evenings on the river walk drinking large cups of flavored coffee from the MacGregor Bookstore. Jim’s favorite entertainment in Estes Park was the Lazy-B Ranch Boys’ dinner show. Jim was enthusiastic and happy.

In his hesitant speech he talked to one of the performers before the show. The man invited Jim to come behind the counter and play his guitar. Jim eagerly picked up the guitar and played a few cowboy songs. He sang the song I’m Tellin’ You Friend, I Ain’t Had a Good Day.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

If We Make it through December

While decorating this morning, I put a country music Christmas CD in the player. Merle Haggard’s song “If We Make it through December” brought about a heart-weary nostalgic feeling.

In many ways, that song was the story of our lives in the early, struggling years when our kids were little. Instead of being the joyful time of “Jingle Bells,” December was the most stressful time of the year.

The cold, winter weather became an endurance test. We lived in drafty old houses that were hard to heat and slept under cold-weather rated sleeping bags to stay warm. That is, when we could sleep. I remember Jim getting up all hours of the night to start the car so that it would start the next morning. Of course, it was futile if the roads were drifted shut.

Just to add to the anxiety, there was always the problem of coughing up enough money to fill the propane tank. One year, right before Christmas, we filled our tank just to have it all leak out during a snowstorm. The truck came back and only because the driver was determined, he managed to get close enough to the tank to re-fill it.

Too often jolly, ho-ho-ho people don’t realize how hard the holidays are for those who have lost a loved one. Christmas doesn’t seem the same when someone you’ve always celebrated with is no longer there. When a white Christmas turns into a blue Christmas, it isn’t easy to exorcise that pesky inner Grinch and infuse oneself with the joy of the season.

A decade of Christmases were changed because of Jim’s dementia. The first few years were a blessing in that being a grandpa gave him a new joy in Christmas. Later, I ate Christmas dinner with him at the nursing home. The meal would be a mixture of nursing home prepared and care packages from his mom.

We are all individuals with countless memories of Christmas. Memories could be of a time of separation, grief, heartache, loneliness, and the bitter cold of winter. Other memories could be the elation of happy reunions, the perfect gift—given or received, the look on a grandchild’s face, hugs, a heart overflowing with love, and a landscape of glittery, fluffy snow.

My memories of Christmas are as packed and varied as Santa’s bag. Opening memories are much like unwrapping gifts at random. Which gift shall I open next? Will it be the booby prize? Will it be a heart-leaping memory of joy? Happy? Sad?

Although the song this morning brought back some bittersweet times of December, I choose to focus more on the precious memories I have of Christmas past. As I put up my village this morning, I was reminded of the time when my grandson Colby was just a little kid and helped me with the village.

I put the cotton batting “snow” on a small table. “You take the houses out of the boxes and I’ll set them on the table,” I said.

Colby went to work. He opened the boxes, peeled off the protective tissue, tossed the boxes and tissue in the floor, and handed me the houses. When we finished, we admired the village. Then Colby looked around and said, “We sure did make a big mess, Grandma Linda.”

I had to laugh and agree. “We sure did!”

Christmas wouldn’t have been Christmas without a huge dinner prepared by my mother-in-law. The house would be overflowing with family and the air fragrant with turkey, ham, homemade light rolls, and pies. The table would groan beneath the weight of the food. The house and yard would be overflowing with family. Remembering those special times, makes it easy to feel the jolliness of Christmas.

Now, Christmas is a quiet time at our house. We will have our get-together with the kids and grandkids this Sunday. I plan on going to candlelight services on Christmas Eve. I believe some quiet reflection on the real reason for Christmas may be an excellent way to put it all in perspective. It seems like a good way to blend all memories into a greater meaning of life, love, and the reason for the season.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from “Indelible”: Colorado 1998

Excerpt from “Indelible” (memoir in progress):

The next year we rented a cabin. Camping required loading so much equipment, and Jim had always done that.

“While I load the supplies, you need to pack your duffle bag,” I told Jim.

A short time later, he came out of the bedroom with his bulging bag. “I’m done,” he said. “Let’s hit the road.”

I went in the bedroom to grab my purse and noticed his underwear drawer open. It was empty.

I opened the duffle bag and found it stuffed with boxer shorts and socks, every pair he owned. The remainder of the bag was full of the paper towel squares that he was always folding.

Repacked and ready to go, we were soon on our way to Colorado. By this time, I drove most of the time. 

When we got to Estes Park, we decided to drive my Nissan up Fall River Road. Jim loved to videotape everything and he thoroughly enjoyed the ride. He videotaped every animal, rock, and flower we saw.

We drove the narrow one-way dirt road to the top of the mountain and spent some time at the visitor’s center. Rather than drive to Never Summer Ranch, I decided to take Trail Ridge Road back to Estes Park. As we traversed the winding road along the barren tundra, vertigo set in and I began to get nervous about driving. I pulled into a scenic overlook parking lot.

“Honey, I can’t stand driving this road with those drop offs.”

“I’ll drive,” Jim said. We traded places, and he expertly drove down the mountain with one hand on the steering wheel, totally relaxed. As soon as we got to lower ground, I took the wheel to get us through the more complex traffic in Estes Park.

Copyright © December 2016 by L.S. Fisher

Excerpt from "Indelible": Colorado 1997

Excerpt from “Indelible” (memoir in progress):

On our Colorado trip in 1997, we rented a room at Trapper’s Inn. The rustic inn was situated at the edge of Estes Park. Elk wandered across the yard and through the parking lot. We spent our days driving into the National Forest animal watching and picnicking.

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 put the coffee in and then acted like 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.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from “Indelible”: Colorado 1995

For the next few days, I'm going to post some stories from our Colorado trips. We went to Colorado every year on vacation and camped at Moraine Park in the Rocky Mountain National Park.

Excerpt from “Indelible” (memoir in progress):

In retrospect, I could measure the progression of Jim’s dementia by our annual camping trips to Colorado. In 1995, putting up the tent was a fiasco.

“This is the way it goes together,” Jim said, picking up a pole from the pile of different length rods. We tried slipping the rods into the canvas only to find our final creation was not a tent.

“Okay, now are you ready for me to dig out the instructions?” I asked with as much patience as I could muster.

“I guess so,” he said grudgingly. Between the two of us, we managed to slide out the rods.

Even with directions, it was hard to figure out what went where.

“That’s not right,” Jim insisted.

“Humor me.” I huffed and puffed in the thin mountain air as I struggled with the poles.

After a lot of stress, strain, and cuss words, our home away from home looked like it was supposed to.

“Let’s get the equipment out of the van,” I said.

Finally, camp was set up to our liking, and we could relax in our lawn chairs. Jim was the official camp cook, and I really didn’t know how the stove worked. I watched him and offered help when he couldn’t quite get things right. That year, I helped a lot with meal preparation. Overall, the problems weren’t too bad and it didn’t discourage us.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from "Indelible": Let There Be Light

Excerpt from “Indelible” (memoir in progress):

It was hard to watch a man who had once fixed our old van with a screwdriver and a piece of wire struggle to complete a simple task.

“Honey, put this light bulb in for me,” I said. Both of us were short, but he still had a height advantage. The light bulb over the wash machine was just out of my reach, and my step stool was upstairs.

Jim reached up and removed the burnt out bulb, but then struggled in his efforts to replace it. He turned the bulb to the right a few times, then to the left as if he were working a combination lock.

“Turn it to the right,” I said. As soon as the words left my lips, I knew it was a worthless piece of information for someone who no longer knew left from right.

“Turn it like this,” I said, pantomiming the correct motion.

Jim stood there holding the bulb like the Statue of Liberty held her torch. His eyes turned toward me, but they didn’t seem to focus. I could imagine myself as he saw me, a blurred image making noises that make no more sense than the incessant chirping of magpies.

I reached out my hand, “Okay, honey, give me the bulb and I’ll put it in.”

Jim passed the bulb to me and paused to touch the top of the washer. He wandered off aimlessly, shuffling to the stairs.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from "Indelible": Gone in the Night

Excerpt from “Indelible” (memoir in progress):

The silence was overpowering, the room too quiet. I reached out to feel the reassuring lump of my sleeping husband, but his side of the bed was empty. I bounded out of bed, running through the house, flipping on lights, yelling Jim’s name. Fear sliced through my body with a burning wave of fire when I realized he was missing.

Knowing I couldn’t waste any time, I jumped in the car and drove east, the direction he usually traveled, peering at the area penetrated by the high beams of my headlights. Although I had a sense of urgency, I drove cautiously because I didn’t want to hit Jim with the car. I had no idea how long he’d been gone, and the farther I traveled without seeing him, the more I panicked.

I reached the crossroads and without hesitation, turned left, choosing Jim’s normal route. My mouth was getting dry. I pressed onward, fear and worry jockeying for position in my mind. I rounded the next corner, headlights slicing through the darkness. There he was! The tension drained from my body, replaced with elation and relief.

Jim was fully dressed wearing jacket, jeans, and his “Vietnam Veteran and Proud of It” cap. He seemed to be unaware of the car and continued his measured tortoise pace, cane grasped in his left hand. I pulled over and stopped behind him, climbed out of the car, speed walking to catch up with him.

I reached out and wrapped my fingers around his bicep, and he stopped as if he had applied his brakes.

“Honey, you scared me,” I said. “Come on, let’s go home, and have some coffee.” 

He turned his face toward me. His eyes were hidden behind sunglasses, but his mouth and facial features were expressionless giving him a surreal appearance. I hooked my hand at his elbow and guided him toward the car. I opened the passenger door; he climbed in, resting his cane on the floor. He settled into the seat and fastened his seat belt. I drove to the highway, turned around, and took him home.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Excerpt from "Indelible": Guitar Magic

Excerpt from “Indelible” (memoir in progress):

Jim plucked his guitar off its stand and settled in a chair facing my mom. He strummed a cowboy song about having a bad day and sang a few lines. It seemed to be about the only song he remembered.

“Hey, Jim, can you play Buckaroo?” Mom coaxed.

He strummed the cowboy tune again.

“I’d sure like to hear Buckaroo,” Mom said.

Jim gave her a blank look.

Mom nodded and smiled encouragement. “Buckaroo?”

Jim’s eyes lit up, and he lowered his head as his fingers found the melody. The strains of “Buckaroo,” played flawlessly filled the kitchen. As soon as he finished, Mom and I applauded. It was so good to hear his “signature” tune. 

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #10—Changes in Mood and Personality

Excerpt from “Indelible” (memoir in progress):

Jim pounded on the van, jerking the door handle, and yelling unintelligible words. The screen door slammed behind me as I rushed outside, fumbling with my keyless entry button to unlock the door. Jim yanked the door and sagged as the door flew open.

“Honey, what are you doing?” I was concerned we would be kicked out of our rental cabin for disturbing the quiet neighborhood.

“Won’t open,” he said.

“I know. I locked the doors while I carried in luggage.”

 

Tears streamed down Jim’s cheeks, and he glared at me.

Our family doctor had written a new prescription to help level out Jim’s moodiness. I had hoped the erratic behavior would end, and I wouldn’t have to give him the new medicine. Reluctantly, I handed Jim a bottle of water and one of the new pills.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #9—Withdrawal from Work or Social Activities

Excerpt from “Indelible” (memoir in progress):

We went on a tour bus to Kemper Arena to see the Stars on Ice show. Jim and I both enjoyed ice skating and this was our fourth trip to see the best ice skaters in the world perform. Our bus let us off at a convenient spot and our tour guide showed us to our seats.

Jim wore his black hooded Kansas City Chiefs coat, with the hood up and buttoned tight under his chin. He had on his super-dark sunglasses and his gloves.

“Honey, don’t you think you should take off your coat?” I hinted.

“No! It’s cold in here!”

Soon, Jim reached into his pocket and pulled out his hand-held poker game. He played the game, although he had no idea when to draw cards or hold them. I thought that at least, it would keep him occupied until the show started.

The lights dimmed and colorful spotlights blazed on the skaters in flashy costumes, music blasted, and the show began with much fanfare. As the skaters swooshed onto the ice, we were close enough to see the goose bumps on their flesh.

Jim calmly continued playing his game, completely ignoring Scott Hamilton’s enormous jumps, antics, and back flips. He even ignored his favorite skater of all time, Katerina Witt. Jim never once took his eyes off his poker game during the first part of the show, only letting me know when he had to go to the bathroom.

Copyright © December 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #8—Decreased or Poor Judgment

Excerpt from “Indelible” (memoir in progress):

During the early stages of the disease, Jim was the telemarketer’s best friend. It seemed that he always agreed to anything they suggested. It wasn’t unusual to come home after work and have Jim say. “Someone called about that thing.”

“What thing?”

“You know, that we want.”

“Who called?”

“I have no idea.”

After a few of those conversations, I installed caller ID. I often had to call to cancel TV programs, donations to various charities, tickets to events we couldn’t attend, and occasionally say no to people we knew who really should have known not to make agreements with Jim.

Copyright © November 2016 by L.S. Fisher
http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #7—Misplacing Things and Losing the Ability to Retrace Steps

Excerpt from “Indelible” (memoir in progress):

I went with Jim to see our family doctor about his memory problems.

“Tell me what kind of problems you’re having,” the doctor said.

“I go to the garage and can’t remember why I’ve gone there,” Jim said.

The doctor smiled at him and said, “At least you remember that you’re forgetting. That’s a good sign.”

Jim was having trouble remembering where he put a lot of things. Sometimes he was looking for items that weren’t even kept in the garage.

It wasn’t long before Jim’s language skills began to slip away. “Right here, but I can’t find it!” he would say to me in a frustrated tone.

“What are you looking for?” I would ask.

“Right here!” If I was lucky, he’d point at his bare feet, and I’d know he was looking for his shoes, or his head and I’d know it was his cap. Too often, he’d just wave his arms, and I would help him look although I had no idea what object he was trying to find.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #6—New Problems with Words in Speaking or Writing

Excerpt from “Indelible” (memoir in progress):

Jim began to have difficulty writing. He would write letters but they wouldn’t make up words. Most of the time, the combination was close enough that I knew what he meant.

I wanted him to feel useful and to “exercise his brain.” One morning, I was washing the breakfast dishes and Jim was sitting at the table.

“Honey, would you make a grocery list for me?” I nodded toward the pad and pen I’d placed on the table. “We need paper towels,” I said.

He picked up the pen and wrote on the notepad. “We need milk,” I said. He set the pen down and said, “I don’t want to.”

He walked out of the room, and I sat down to finish the list. On the paper, he had printed, “taper powels.”

Later he picked up the list and studied it carefully. “I wonder why I spelled ‘paper towels’ that way,” he said.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Not All Beasts Are Fantastic

Early Onset Alzheimer's Blog

I went to see J.K. Rowling’s Fantastic Beasts and Where to Find Them movie with my grandkids and daughter-in-law. I’ll admit that my granddaughter had to keep whispering information to me since I’m not a big reader of fantasy and (gasp!) have not read a single Harry Potter novel, much less the prequel story of Newt Scamander. She might as well have been speaking a foreign language although I often nodded and tried to absorb the information. I am definitely a No-Maj.

No, I don’t need to give a spoiler alert here. During the course of the movie, buildings were destroyed and then magically repaired. That’s why it’s called fantasy, folks, because we all know that when something is destroyed it takes a lot of work and tenacity to rebuild it.

Sometimes, I have thought of Alzheimer’s as a beast. Just like in the movie, the beast burrows beneath the surface, but in this case, wreaks havoc in the brain. The Alzheimer’s beast is made up of two halves—beta-amyloid  plaques and tau tangles.

The Alzheimer’s beast builds a roadblock between brain cells making it hard for them to communicate with each other. The beast murders brain nerve cells, which causes tissue loss. The thinking-planning-remembering part of the brain, the cortex, begins to wither. The hippocampus where we develop new memories is especially hard hit by Alzheimer’s and shrinks dramatically. The fluid filled spaces in the brain, the ventricles, become larger as the rest of the brain shrinks.

Unlike the movie, the damage caused by the Alzheimer’s beast cannot be repaired by waving a magic wand. I believe that someday—sooner, than later, I sincerely hope—researchers will find a means to stop Alzheimer’s in its insidious tracks.

Research involves a lot of trial and failure. I received disappointing news from the Alzheimer’s Association last week. Eli Lilly’s experimental drug, solanezumab, had earlier shown promise in slowing the deterioration of thinking and memory, but failed in a large clinical trial.

Better news comes out of the University of Kansas Alzheimer’s Disease Center. The National Institute on Aging, part of the National Institutes of Health, renewed the center’s national designation for five years. This center in the heart of America will receive $9.0 million through 2021 to continue their search to understand Alzheimer’s and treat the disease.

Douglas Girod, executive vice chancellor of  KU Medical Center said, “When the NIA first announced in August 2011 that the KU Alzheimer’s Disease Center (KU ADC) had achieved national designation, we were thrilled, but not surprised. We knew that our Alzheimer’s program had long been at the forefront of discovery and had already achieved significant success in understanding and treating this devastating disease.”

The center will be studying lifestyle changes as well as drug intervention in changing the course of the disease. Jeffery Burns, MD, co-director of the center announced that several clinical trials are examining the heart/brain connection: what’s good for the heart is good for the brain. KU ADC plans to expand the Lifetime Enrichment for Lifestyle Prevention (LEAP) program as a way to promote brain health in residents of senior living facilities.

Okay, how can you help? One of the roadblocks to these programs is a lack of volunteers. The biggest need right now is for healthy volunteers who are Hispanic or African American, but they need clinical volunteers of all types.

Alzheimer’s may seem like a beast that can’t be beaten, but when we promote Alzheimer’s research and make finding a cure a national priority, we can drive the beast from our midst.

I’ve already admitted I’m not a fan of fantasy, but this No-Maj is a fan of fact. It is a fact that lifestyle can reduce our risk of Alzheimer’s, and that researchers are working hard to find a prevention, treatment, or cure. When researchers unlock the mystery of Alzheimer’s disease, it will be magical in its own way.

Resource: http://www.kumc.edu/news-listing-page/the-ku-alzheimer%E2%80%99s-disease-center-renews-national-designation-expands-research-and-partnerships.html

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #5—Trouble Understanding Visual Images and Spatial Relationships

Early Onset Alzheimer's Blog

Alzheimer’s: Know the Signs  #5—Trouble understanding visual images and spatial relationships. They may have difficulty reading, judging distance, and determining color or contrast, which may cause problems with driving. (www.alz.org)

Excerpt from “Indelible” (memoir in progress):
 

Jim had been a lifelong reader, and we made nearly weekly visits to the bookstore to buy more Star Trek books, mysteries, or Louis L’amore books.

“Why do you have two copies of this Star Trek book?” I asked.

“I have no idea,” he replied.

I began to look through his pile of books and found other duplicates and even triplicates. He still opened his book at night to read, but he seldom turned the pages. I finally realized he didn’t comprehend what he was reading and couldn’t follow the story line.

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Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com