Thursday, July 26, 2018

Between the Lines; Outside the Box

A few weeks ago, I was driving home after a visit with my mother and as I topped a hill, I saw an oncoming car in my lane. The state highway I was on had a shoulder that was every bit of one foot wide. I braked and used all one foot of the shoulder, the kamikaze driver slammed on his brakes and slid back into his own lane with inches to spare.

I was scared, but I think I was mostly angry. Those double yellow lines are on the highway for a reason: it is not safe to pass. Part of the problem, especially on a road leading to the lake, is that people are in an all fired hurry to get to the lake so they can relax. They don’t seem to care how many lives they endanger.

If those aggressive way-over-the-speed-limit drivers would use some commonsense, a lot of car crashes would be avoided. Why is it so hard for some people to stay between the lines?

Anyway, my point is that sometimes you have to stay between the lines. We learned this in kindergarten when they gave us pictures to color. Of course, coloring outside the lines didn’t have life and death repercussions. Most likely, you would have still gotten a golden star even if your paper had only colorful scribbles on it.

Throughout school, we had to think inside the box. In order to pass our tests, we had to give the exact answer outlined in the textbook. I can remember being so frustrated when multiple choice questions were worded in such a way that the correct answer wasn’t the one you were expected to give. One time in college, the professor handed me back my test. “The answer you gave was correct, but it wasn’t the one on the study sheet. I was just being a butt by counting it wrong.”

When we get a paying job, we are expected to think outside the box. Maybe we don’t do a task a certain prescribed way just because “that’s how we’ve always done it.” On the other hand, you don’t want to rush into a bunch of changes to find out that your new way skips some vital steps.

For a caregiver to be successful, we need to know when to stay between the lines and when to think outside the box. For example, I learned some of the best techniques of caregiving through the Alzheimer’s Association. I took advantage of all the seminars and training programs I could find. I didn’t have to use trial and error for everyday problems. Others had paved the way, and I had endless resources at my fingertips.

There were times, though, when I had to think outside the box. Actually, many, many times, especially, when trying to communicate with Jim. He seldom spoke and had trouble understanding what I said. I learned that body language and tone of voice were the best ways to help Jim understand. My mantra for communications was “patience and flexibility.”

The biggest challenge when dealing with dementia is that each person is different. A complete gamut of behaviors—aggression, anger, outbursts, sun downing, sleep issues, confusion, depression, wandering—are possible with dementia. Not every person experiences all of these, but they are common. Dealing with behavior involves thinking outside the box. My best advice is to stay calm, focus on your loved ones feelings, and redirect when behavior is disturbing. If one solution doesn’t help, be flexible and try something different.

We used to have a saying in support group: If you know one person with dementia, you know one person with dementia. No two people on this earth have lived the exact same lives or have the exact same experiences. How dementia affects our loved ones will be the same in some respects, but different in others.

Sometimes it is wisest to stay between the lines, but thinking outside the box may be the best way to solve the unexpected twists and turns of dementia behavior. 

Copyright © July 2018 by L.S. Fisher

Saturday, July 21, 2018

Simple Days, Simple Joys

I flipped my Irish perpetual calendar to a new day and saw this quote attributed to Emily Lawless, “Simple days bring simple joys.” I couldn’t agree more!

When I think back whether it was decades ago, or last week, I realize the simple times in my life were the happiest times. I can close my eyes and remember those simple days.

In my childhood, I think of summer days on the creek bank with my bare feet dangling in the water while I read a book. I  remember family reunions when I got to spend time with the Capps cousins and Saturdays at Grandma and Grandpa Whittle’s house when my aunts, uncles, and Mom played their instruments and sang country and gospel songs. We kids would listen for a while, dance, and then run out into the yard to play.

My life became more complicated during the teenage years, but was simple compared to today. I wrote letters, listened to the Beatles with my friend Sharon, and fell in and out of love a few times. Then, I met and married Jim.

Over the next two decades, we raised our sons. Our weeks were quiet and weekends were spent with family—ours, mine, and his--often filled with jam sessions, fishing, campfires, and quality family time. We celebrated special occasions by eating out or going to movies. We traveled to Oregon, and discovered Colorado. Later we made our trips to Branson to watch country music shows, visit Silver Dollar City, cruise on the Branson Belle, and Ride the Ducks.

Life took another turn when Jim developed dementia. Our sons had families of their own, our fathers died, and we entered an unpredictable time. Life started to get chaotic and I longed for the simple days. Instead, my world revolved around Jim, work, and volunteering. Anxiety became my constant companion.

Today, the simple days have vanished and been replaced with constant intrusions. We are bombarded with demands on our time and invasions of our privacy. We’ve become dependent on Google instead of memory. Opinionated news has replaced facts. Politics used to be relegated to election time, but now, we have it crammed down our throats on a daily basis. People have become more contentious, politically polarized, more religious and less Christian.

Cell phones have replaced conversations with click, click, click. We have to keep up with Facebook, Twitter, texting, breaking news, weather alerts, and dozens of other apps. All the talk radio and politics of TV has many of us getting our news on our phones.

Even though I’m retired, it seems that simple days are uncommon. For the past two weeks, I’ve had one, two, and sometimes three events a day. Interspersed in the busyness, I find simple joy while walking my dog, drinking coffee with my husband on the deck, joining my friends for line dancing exercise class, spending time with my kids and grandkids, or walking out into the yard to photograph the sunset at the end of the day.

Recently, I’ve found new joyful moments by playing my ukulele with our family band at nursing homes. Our practice sessions are flashbacks of the simple days, often humorous, relaxing, and most of all precious time together. When my mom sings now, she’s hearing her kids, daughter-in-law, and niece instead of her brothers.

It isn’t always easy to discover simple joys in our complicated world. My hope is that if I fill my time with enough simple joys, they will become simple days.  

Copyright © July 2018 by L.S. Fisher

Monday, July 9, 2018

Is the End Near?

I’ve always been fascinated with the universe. When I look at the moon and stars at night, it makes me realize what a small speck I am on the landscape of this world.

Throughout my life, I’ve heard different people proclaim that our world was coming to an end. The most recent deadline was April 2018. Well, unless something happened that I wasn’t aware of, we are still here.

When I was a kid, sometimes I attended a church that believed the end was imminent. The preacher would actually pray for the world to be destroyed and for the rapture to begin. I could not throw myself into that prayer wholeheartedly, and I was always happy to walk outside and see that nothing drastic had happened.

But there is one end that I could support unequivocally—the end of Alzheimer’s. Exciting news from the world of research indicates that scientists have finally made an important breakthrough.

Biogen and Eisai announced that the drug BAN2401 just finished phase 2 and that the drug demonstrated slowing the progression of Alzheimer’s. The positive results were after an 18- month period. This is another drug that targets amyloid beta proteins. Some researchers had begun to question the amyloid beta approach because of the massive failures. In fact, Biogen was disappointed in the 12-month data and considered abandoning the research. Now, they are looking at a phase 3 study. The predictions are 50% that BAN2401 will be approved.

This is extremely good news following Pfizer’s announcement that they would abandon development of an Alzheimer’s drug. Research costs are astronomical and failure is the norm Thus far, the quest for an effective drug for Alzheimer’s has resulted in a 99.6% failure rate. The FDA has not approved an Alzheimer’s drug in over a decade.

The Alzheimer’s drugs on the market today treat the symptoms of Alzheimer’s and can improve quality of life for some people with dementia. What they don’t do is slow the progression of the disease.

A treatment that slowed the progression or delayed the onset of the disease would result in big savings for families and the government. According to the Alzheimer’s Association, if a treatment is found by 2025 that would delay the onset of Alzheimer’s by five years, it would save $220 billion in the first five years. By 2050, families would save $87 billion and America $367 billion. By changing the trajectory of Alzheimer’s disease, we would save lives and dollars.

The question remains—is the end near? Will BAN2401 be the success story we’ve been waiting for? Only time will tell. In the meantime, we can all pray fervently that the end of Alzheimer’s is near.

Copyright © July 2018 by L.S. Fisher