Jim’s Team

Doctors don’t want to diagnose a forgetful forty-nine year old with early onset dementia. First, they look for tumors, vitamin deficiencies, stroke damage, or something as simple as prescription drug interactions.

After numerous tests eliminated other conditions, a doctor finally diagnosed Jim with dementia of the Alzheimer’s type. Jim was emphatic that he didn’t have “that.” The doctor that gave Jim the bad news was named Worth, and Jim immediately dubbed him “Dr. Worthless.” 

I wasn’t as sure as Jim was that the doctor was wrong. After I contacted the Alzheimer’s Association, I had attended a few support group sessions. When my contact at the Association told me about the Memory Walk, as it was called at that time, I signed up for it and raised $600.

I didn’t mention it to Jim since he was so adamant that all that was wrong with him was a stroke he had “five years ago.” As the years passed, it was always “five years ago.”

One day he was looking at the newspaper and saw an article about an upcoming Memory Walk in Sedalia. “I have trouble with my memory,” he said, “and I’d like to go to this walk.”

Well. The Big Bad Wolf wouldn’t have had to huff and puff very hard at all to knock me over.

We showed up at Liberty Park on a warm September day in 1998. We quickly discovered that we were the only two people from Sedalia. Still, we walked, and Jim’s Team has walked in every Sedalia Walk since that day.

With this year’s Sedalia Walk coming up in less than two weeks, my thoughts turned to our team name this morning. Jim’s Team—what a natural choice.

Jim’s Team turned out to be so much more than a Walk team. Jim’s Team was really all the people it took to help him, and me, through the dark days of dementia. Jim’s Team was made up of family, friends, co-workers, neighbors, and occasionally total strangers who stepped up to offer a helping hand when it was needed.

Included on Jim’s Team were physicians, nurses and nurses aids, housekeeping, social workers, and, eventually, hospice. Every step of the way, we needed the support and guidance provided by the Alzheimer’s Association.

We needed the prayer team who never forgot us, and the love team who never gave up on either of us. You can never underestimate the “doer” team, the ones that didn’t just offer, “if you need anything,” but instead came up with, “I’ll mow your grass,” or “here’s a cobbler I baked.” What would we ever have done without the companion team—“I’ll drive you to Kansas City for your doctor’s visit,” and “here, I’ll help you get Jim loaded into the car.”

Everyone that stood by us and helped us was a part of Jim’s Team. The core team was immediate family: Jim’s mom and my two sons. They were the ones that helped me make the tough decisions: making it through day-to-day, home care, the nursing home decision, and heartbreaking health care decisions. They had my back at all times.

Jim’s Team held us in their embrace and listened to my rants, dried my tears, and made me laugh when I thought that was impossible. Jim’s Team made all the difference in his and my quality of life.

Jim passed away April 18, 2005, but Jim’s Team continues to walk in his honor and in honor of others lost to dementia. Over the years, Jim’s Team has raised around $50,000.

In less than two weeks, we walk again. In my heart, I’ll remember Jim’s joy during that first Walk. I’ll think about the good times, bury the heartache, and hope that someday soon researchers will find a cure making Alzheimer’s a distant memory.

To join, or donate, to Jim’s Team, click here or on the Walk to End Alzheimer's logo.

Copyright © August 2016 by L.S. Fisher

http://earlyonset.blogspot.com

All Roads Lead to Home

When Jim returned from Vietnam, he was stationed at Fort Riley, and we spent about a year and a half living in Manhattan, Kansas. With barely enough money to get by, we often took drives in the country for entertainment. We explored the back roads, and often toured tiny towns that were barely blips on the maps. Not that it mattered to us, because we never used a map. 

Jim had a good sense of direction, and eventually, we’d wind up at the small apartment where we lived. He always said, “All roads lead to home.”

One summer day, we headed down this long, winding road through the middle of nowhere just to see what we could see. Our car didn’t have an air conditioner, so we drove with all four windows down and breezy hot air gave us the illusion of bearable heat.

After driving for about an hour, we rounded a corner to see a big sign that said, “Dead End.”

“Wouldn’t you think they would have put that sign several miles back?” I grumped. It didn’t help that I was pregnant and couldn’t seem to get comfortable. Jim, on the other hand, handled the situation by merely turning around and going back the same road.

Life’s bumpy road has significant, unexpected detours, and dead ends, that change the course of our lives. My life’s journey, of course, was forever altered when Jim developed dementia.

Sometimes, when life gets about as bad as it can possibly get, it takes a turn for the better. I had to remind myself of better days ahead last Saturday when I went to a memorial service for Linda Newkirk, a woman who became my mentor, champion, and my friend.

On the drive over, I thought about Linda and the positive influence she had been in my life. When I came up with the idea for Alzheimer’s Anthology of Unconditional Love, Linda was the Executive Director of our local Alzheimer’s chapter.

In my memories, I could still see her smile and appreciated her wholehearted support of the project. She, Joetta, and another staff member selected the stories. Linda helped me promote the book and offered her encouragement throughout the entire process.

Because of Linda, I had the audacity to believe I could gather up slice-of-life stories and publish those stories in a book. Publishing the Alzheimer’s Anthology was one of those pivotal moments that launched more than a book—it launched a new and exciting chapter of my life. 

During an invitation to share memories, several individuals spoke about how Linda had been a positive influence on their lives. Her sons talked about how much courage she showed in the face of a terminal illness. Her main concern during her last days was not that she was dying, but her worry that her family would be devastated. Linda was a woman of strong faith, and she rested easy knowing that God was good, and He would hold her in His loving embrace.

I felt compelled to share my memories of her. The enormity of losing a woman who had done so much for me threatened my composure. My voice was a little shaky as I fought back the tears, but in a couple of minutes, I paid homage to the pivotal role Linda played in my life. I don’t remember my exact words, but I ended with “I will never forget how she completely changed my life, and I’ll never forget her.”

Throughout life’s journey, we encounter people who have more confidence in us than we have in ourselves. Because of them, we have the courage to leave the familiar path we’re traveling, and go into the unchartered territory of a new direction. We take a chance on navigating the route without an itinerary or a map.

I left the memorial and headed home with gratitude in my heart that Linda had been part of my life’s story. With her radiant smile, dignity, encouragement, generosity, and kind heart, she provided a living example of how to walk through this world. Through courage and faith, she demonstrated that she knew the way to her Heavenly home. She broke the chains of earthly tribulations and embraced the joy of God’s amazing grace.

Copyright © August 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Stave off Alzheimer’s One Dance at a Time

Going to line-dancing exercise class was one of the best decisions I’ve made in the last year. It was by chance that I saw Ruth Dale’s offer of free line-dancing classes. I commented that it sounded like fun, and she encouraged me to try it.

At an SBW meeting later that same week, a few of us decided to check it out. Friday rolled around and I worried about my ability to learn a structured dance. In high school, I loved to dance, but I was mostly a free-form dancer. Or as my dance partner at a school dance observed, it looked like I was stomping on bugs.

First day of class, I caught on to a few basic moves—left vine, right vine. Some dances were easy to learn—the cupid shuffle. Others were more challenging for me—the watermelon crawl. The dance we learned this week—the wrong way—sums it all up.

I’ve been working especially hard on this dance since, “You’re going the wrong way,” was one of the few phrases Jim could say after dementia stole his language skills. This phrase was always directed at me, and it usually meant I hadn’t understood what he was trying to tell me.

Sometimes, I admit, I was actually going the wrong way. I like to do some heavy thinking while I drive. My radio is always on the Blend, and the music relaxes me and sets my mind in fast forward. This morning, I was indulging in some creative thinking, and as a result, I took the scenic route to the dietitian’s office.

The dietitian, Angela, is another good decision I made this year. She helped get me back on track after a two-year hiatus from healthy eating and regular exercise. Now, I have a second chance to get back on track after basically wrecking the train.

I give Angela credit for helping me “Fuel Up Right,” one of the Alzheimer’s Association’s “10 Ways to Love Your Brain.” Eating a balanced diet lower in fat and higher in fruits and veggies is a piece of cake. Ooops, no cake. Bad cake. Oh, well, maybe occasionally a sliver of chocolate cake.

What I’ve undertaken isn’t really a diet and exercise plan. It’s a lifestyle change. Behavioral strategies are an excellent way to reduce risk of Alzheimer’s. A new lifestyle is my ticket to a healthier me—body, mind, and spirit.

1)      Body: Since I joined line dancing and pay attention to what goes into my mouth, I’ve lost eleven pounds. That’s not as much as I want to lose, but it’s a darn good start. I feel better, stronger, and healthier than I have in a long time. According to my physician, dancing builds stronger bones and improves muscle tone.

2)      Mind: Learning new dances exercises my mind. Brain stimulation helps stave off Alzheimer’s. My brain is on overdrive as I try to remember the steps to a complex dance. Ruth likes to challenge us with new dances. The variety of the dances keeps the class fresh, interesting, and, best of all, fun!

3)      Spirit: Line-dancing exercise classes have given me the opportunity to make new friends. We have laughed, cried, and prayed together. We’ve danced together in class and out-and-about. I’m so blessed to know these happy footed gals and guys!

Line dancing applies to several of the Alzheimer’s Association’s “10 Ways to Love Your Brain.” I’ve got “Buddy Up,” or be social, covered with my new friends!

Another way to improve brain health is to “Break a Sweat.” Well, this happens every time we dance. Tuesday evening, I complained about the room being cold when we first got there. By the time we finished dancing, I was fanning myself. Go figure.

“Stump Yourself” involves challenging your mind. I’m challenging my mind one dance at a time. Biggest question when Ruth tells us what dance we will be doing is, “How does that start?” After the first few steps, the brain usually, key word usually, kicks in.

How about “Take Care of Your Mental Health”? Depression is linked to mental decline. It’s impossible to be around my line-dancing friends and be depressed. In fact, that is the perfect place to go when things aren’t going right. Dancing and listening to music are two things that put me in that happy place before I can count to four.

Life isn’t all about dancing, or is it? Yes, I think it might be!

Copyright © August 2016 by L.S. Fisher

http://earlyonset.blogspot.com

The Nose Knows

I was sitting in church a few weeks ago and caught a hint of an unusual scent. I tried to decipher what it could possibly be, and thought I detected a hint of vanilla mixed with a light floral fragrance. It seemed odd that I caught only a whiff of the pleasant smell, and then it was gone. After church, I made a trip to Walmart. As I rounded the canned vegetable aisle, there was the same scent—illusive, and a little bit creepy, to tell the truth.

Nice smelling ghosts aside, this phantom smell concerned me. I had heard that smelling something that wasn’t there could be a sign of something going wrong in the brain—tumors and dementia at the top of the list. Phantosmia, olfactory hallucination, can be deadly serious.

I loaded my groceries, jumped in my car, and turned on the ignition. The air conditioner kicked on, and I breathed in the fragrance again! That’s when it dawned on me—the unusual smell was from the new body lotion I’d put on my arms that morning. Well, I was relieved that I’d solved the mystery and dodged that neurological disorder bullet in one fell swoop.

We are surrounded by odors, pleasant and unpleasant. Some of our strongest memories are tied to smells. Harold and I were in the shop working on his latest project when I caught the smell of freshly sawed lumber. Immediately, I thought of Jim and me building his mom’s house and then ours. By building, I don’t mean hire a contractor. We didn’t have money for that! We strapped on our tool belts and went to work. Jim could smack a nail a few times with his hammer and drive it home. I “Lizzy Borden-ed” my nails. About forty whacks later, I’d be there too.

Scents are a time machine. A recent article I read talked about how our noses are important memory tools. Our sense of smell can stimulate the brain to remember. The article in the caring.com newsletter said, “Although someone with severe-stage dementia may seem beyond all interaction, you may be able to reach in and connect through smell.”

Odors can be used to influence mood. Aromatherapy can stimulate different moods or emotions. Some scents, lavender, for example, are soothing and can be helpful for insomniacs. Peppermint and rosemary are believed to be stimulating. Peppermint might also remind a loved one of Christmas. For me, wintergreen makes me think of being sick—Pepto-Bismol.  In fact, the very smell makes me queasy.

What about those candles or plug-ins that smell like sugar cookies? That brings back memories of my mother-in-law Virginia preparing dozens of sugar cookies for care packages to family members. The trouble is, those scents make me hungry! And the smell of cinnamon drives me insane for Virginia’s cinnamon rolls.

The smell of crayons or a freshly sharpened #2 pencil will bring up mental images of the first grade. I didn’t go to kindergarten so first grade was my introduction to a schoolroom. My older brother, Tommy, ever helpful, dropped me off at the room. He tried to prepare me for my new experience by telling me the pencil sharpener was at the back of the room.

All was well, until I panicked when I couldn’t figure out exactly what the pencil sharpener was supposed to look like. I started crying. Of course, they went and got my brother to calm me down. He later said that I cried every day of first grade, but I think that is an exaggeration.

We can smell our way back to our younger years, or even our childhood. Wouldn’t it be great if we only remembered the happy smells and not the icky ones? Sometimes, we don’t get to choose which memories our sniffer triggers, because the nose knows our oldest and most deeply rooted memories. 

Resource: https://www.caring.com/articles/scents-and-dementia

Copyright © August 2016 by L.S. Fisher

http://earlyonset.blogspot.com