Sunday, August 12, 2018

Stay Strong through Adversity

I walked to the mailbox a few days ago and noticed that our apple tree had some apples on it. Isn’t that what apple trees are supposed to do? Well, yes, but our apple tree had served as chow for the Japanese beetles again this year. Last year, the tree didn’t have any apples when the beetles finished eating the blossoms and made lace out of its leaves.

The apples seemed to me to be a symbol of strength. They had faced potential destruction, but they survived.

I’ve heard people say you never know how strong you can be until being strong is the only option. Sometimes, people surprise me. I knew a shy, timid woman who when faced with a life-threatening disease showed amazing strength through a series of disappointing doctor reports. I’ve also known people who give up at the first sign of a problem, and dissolve into a lengthy pity party.

Alzheimer’s caregivers are, for the most part, notoriously strong people. Caregiving can be overwhelming, frustrating, and extremely saddening. Losing a loved one to a relentless, incurable disease is life changing for the family. The person hardest hit is the one responsible for the well-being of the person with dementia.

A caregiver has to work her way through the grief and pick of the pieces of a life that has fallen apart. He has to make a conscious choice to be strong and choose quality of life over quantity. She has to make the tough decisions about finances, healthcare, and personal safety. It takes strength to survive, and super powers to thrive.

Life after dementia becomes difficult, but not impossible. It is important to take advantage of the early stages to continue living life as normally as possible. Keep up activities that you and your loved one enjoy.

Jim and I used to enjoy playing pitch. Uncle Johnny and I played Jim and Aunt Nita. They were wild and crazy bidders and beat us on a regular basis. At first, Jim could still play cards, but when it became too difficult for him, his mom helped him decide which cards to keep and when to play them. With her help, he was able to enjoy the game long after he would have had to quit.

I even tried to play Super Mario Karts with him, but he laughed at me when I got my kart turned around backwards and told me, “You’re going the wrong way!” As if I hadn’t figured that out on my own. I just couldn’t seem to get my hands coordinated with my eyes.

Any day you can put your cares aside and recapture joyfulness is a good day. It may be harder to have fun than it would be to sink into despair, but it is well worth the effort.

When adversity attacks our lives, we have to decide if we are going to be a leaf or an apple.

Click here to support me in the Walk to End Alzheimer's

Copyright © Aug 2018 by L.S. Fisher

Wednesday, August 1, 2018

Weeds of Negativity

Being a farmer, Harold knows a lot about plants. One day we were out driving and I asked, “What are those pretty blue flowers alongside the road?”

He gave me a quizzical look at my ignorance, and declared, “They are weeds!”

I have a better appreciation of his assessment now than I did then. After I started to help him mow our huge lawn, I noticed that before the grass needed mowing again, weeds popped up and ruined the smooth grassy surface. Drought will turn our lawn brown, but the weeds grow in all their natural glory.

Like our lawn, life would be smooth and beautiful if the weeds of negativity, doubt, and frustration wouldn’t crop up to complicate everything. It is an individual decision whether we let the weeds take over or whether we keep chopping away at them until we can see the beauty again.

Caregivers battle weeds on a daily basis. Most outsiders would think that the hardest part of caregiving would be physical caregiving tasks—feeding, bathing, changing adult diapers, and being responsible for another’s wellbeing—but they would be wrong. The hardest part of caregiving is working past the grief of losing a person you love by degrees.

While a caregiver loses his loved one to the world of dementia, he must cling to himself too. It is not helpful to the caregiver or the person with dementia if the caregiver sacrifices his health to become immersed in his caregiving role.

I know it’s hard to keep the doubts, negativity, and frustration at bay. I often questioned if I could even find enjoyment as Jim’s health declined. Throughout ten years, I struggled to find some balance in my life. It helped that I was still working because that allowed me to have a part of my life that hadn’t changed as much. Oh, I had to leave work from time-to-time to deal with one crisis or another, but still it provided respite from caregiving.

Being involved with the Alzheimer’s walk and becoming an Alzheimer’s advocate gave me a sense of accomplishment. Out of a negative situation, I found purpose and positivity through my volunteer efforts. The most painful time of my life changed me, took me places I would have never been, and introduced me to some of the most amazing people—other caregivers.

Life is no more or less than we make it. Maybe it is my nature to view some weeds as pretty wildflowers. Life offers endless beauty if we allow ourselves to believe in flowers and scoff at weeds.

Copyright © Aug 2018 by L.S. Fisher

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

Thursday, June 28, 2018

Routine Helps Us Cope

Missouri weather is well known for its extremes. Our dog likes to hang out on the deck while we go to town, but sometimes, like today with a 100+ index, it just isn’t a good idea. Recently, Harold built a “room” for her in the basement where she can stay while we make short trips to town. We furnished it with a chair, a dog bed, and toys.

This morning, I took the dog outside. She immediately trotted toward the garage, went down the steps to the basement, and stopped in front of the basement door. I was surprised that she had noticed we were getting ready to go somewhere and led the way to her room. Although we’d only used the room a few times, she already knew the routine.

Routines can become boring and sometimes we feel compelled to shake things up a bit to keep life interesting. But there’s something to be said for the stability and comfort of knowing our day is going to click along as expected.

Daily routines keep our lives running smoothly, especially if we have a loved one with dementia. Having set times for meals, bathing, dressing, activities, and bedtime helps both the caregiver and their loved one with dementia make it through the day.

Keeping a routine is helpful for a person who becomes confused. With subtle help and reminders, your loved one can maintain independence for as long as possible. It is important to be flexible enough to deal with the unexpected.

We all fall into patterns of routine. For me, it’s to put on a pot of coffee first thing in the morning. I don’t feel quite human until after my first cup of coffee.

A few days ago, I squeezed out the last few grounds of coffee from the canister and knew I had to refill it. While we were in the middle of fixing biscuits and sausage gravy, I decided it would be better to get that chore out of the way after I’d already downed a cup of coffee. I brought in a new can of coffee and grabbed the tab on the foil seal.

Coffee shot out of that can with all the force of a bottle rocket. Coffee grounds pummeled my apron, my chest, down my blouse, all over the counter, and of course, all over the floor I’d mopped the evening before. Talk about a mess! Talk about ruining my sleepy-eyed early morning routine.

After that, Murphy’s Law kicked in. While Harold was stirring gravy, I placed the biscuit baking sheet on the unused burners. “It’s hot,” I said. He accidently touched his arm to the sheet, jerked his hand, and gravy went flying. Awe, how much better it would have been if our routine had not been thrown out of kilter.

Routine and flexibility are two sides of the same coin. For those of us who prefer calm to drama, routine is our friend and flexibility keeps us from freaking out when things go wrong.

Sometimes we just have to clean up the coffee grounds, change our clothes, and jump in the shower. Before you know it, you are back on track to have a normal day.  

Copyright © June 2018 by L.S. Fisher

Saturday, June 16, 2018

A Birthday Wish

I sat in the Kansas City airport contemplating the 2018 Alzheimer's forum, and couldn't help but think about birthday wishes. For the first time ever, I'll be visiting with my legislators on my birthday.

I can remember when I was a child, I thought about my birthday wish ahead of time. I don't recall any earth shattering wishes. I remember homemade birthday cakes with candy pieces spelling out "Happy Birthday" and candle holders made out of the same sugary confection.

With eight kids, birthdays weren't unusual or cause for a huge celebration. I've had a few memorable ones over the years of my life. I think the one that stands out in my mind the most was a camping trip gone haywire. A huge group of the Fisher family was camping at Rhody Lake in Oregon. To make a long story shorter, I slept in the tent with a bunch of kids and one of them peed on me. The next day, my birthday, was miserable. My kids were misbehaving, and I was cranky and out of sorts. No one, not even Jim, acknowledged it was my birthday and, oh, yes, I was feeling sorry for myself and too stubborn to bring it up.

Well, later in the afternoon, as everyone was relaxing around the campfire, suddenly here came my sister-in-law carrying a birthday cake and everyone started singing. I started crying when I realized no one had forgotten, they just wanted to surprise me.

Years later, right after we moved into our house, the family decided to have a surprise birthday party for me. Jim clued me in and I just met everyone at the door welcoming them to my "surprise" party.

So, whatever my birthday wishes were in the past, I know for sure what they will be this year. First, and foremost, I wish for a cure for Alzheimer's. In the meantime I wish that our legislative asks are met with favor. We have three federal priorities: An increase in Alzheimer's research funding, the BOLD Act, and PCHETA.

Alzheimer's is the most expensive disease in America. One in every five medicare dollars is spent on caring for a person with dementia.  The disease is expense both for the family and the government. The average monthly cost for a person with dementia at the end of life is $4,866. Palliative care reduces that cost to $1,534.

The only solution to negate the expense is to find a cure or effective treatment. This can't be accomplished without research. We are asking for an increase of $425 million for Alzheimer's research. The stakes are high in terms of human life and economic savings for families and our country. A treatment that would delay the onset of Alzheimer's by five years would save $220 billion during that period of time.

The Building Our Largest Dementia Infrastructure for Alzheimer's Act (BOLD) will create a road map to treating Alzheimer's like the public health threat that it is. This act creates a public health infrastructure countrywide. Increasing data collection, analysis, and timely reporting will save billions through early diagnosis. Centers of excellence will improve diagnostic procedures and quality of life for our loved ones.

One of the best decisions our family made was to use hospice care for Jim, and my only regret is that we did not use hospice sooner. Hospice provided comfort for Jim and for us as we faced the The Palliative Care and Hospice Education and Training Act (PCHETA) will ensure that end of life care is provided by well-trained workforce. Nearly half of all people with Alzheimer's depend on hospice care during their final days.

After a few days seeing the sites and catching up with my friends and fellow advocates, we are ready to roll up our sleeves and get to work. On Tuesday when we go to Capitol Hill, will will be armed with facts and figures, but more importantly we bring our personal experiences and passion to find a cure. Our hearts, wishes, and mission will be for a world without Alzheimer's, and we are willing to ask, ask, and ask again until there is no longer a need to ask. That is my birthday wish!

copyright (c) L. S. Fisher June 2018

Thursday, June 7, 2018

As Country as Can Be

One of the line dances we do in our line dancing exercise class is called “As Country as Can Be.” I think that would be a fitting description for me.

I was raised in the Ozarks, miles from the nearest town, down a dirt road full of potholes. The first time Jim drove to my house, he declared, “This is so far back in the sticks, I bet you have to pipe in sunshine.”

It’s also well known that you can take the girl out of the country, but you’ll never take the country out of the girl. I’ve lived in four different towns in three different states, and the shortfall all of them had was—they were not in the country.

I was much happier in the most modest home in the country than I was when we lived in a condo in town. Still, as a barefoot country kid, I never dreamt that I would come as far as I have in my life or live in the kind of home I have now. I realize this is backwards for kids today who often take a big step down when they go out on their own.

When I walk the dog, I enjoy the quiet, starlit nights and lazy country mornings. This morning during our walk, I saw a squirrel clinging to a dead branch, swinging back and forth. It reminded me of our entertainment when we were kids: swinging on grapevines, sliding on mossy rocks in the creek, swimming in the lake, or walking in the woods. Our home had no phone or air conditioning. I can remember settling down in a cool spot in front of the fan to read library books.

One of the benefits of coming from poverty is that you are grateful for what circumstances and hard work have brought your way. I can remember during the recession some people were terrified of losing their wealth and being (gasp!) poor. The way I looked at it, I had already been there and it didn’t scare me.

Some people think that poor people are miserable. It couldn’t be further from the truth. Other people think money equates happiness, and that isn’t true either. If I’ve learned one lesson in life, it is that money makes life’s journey smoother, if you don’t allow money to be in the driver’s seat.

Working on Indelible, brings back memories of the financially stressed years that Jim and I had. We always managed to pay our bills, feed our kids, and have a roof over our heads. Jim was able to keep any old $200 car running, so we had transportation. So what if my clothes came from garage sales? We made it through the hard times on our own.

The hard financial times were a veritable walk in the park compared to the years of dementia. Those times were trying, but I was glad that we lived in the country. When Jim wandered off, he was in familiar territory and wasn’t in danger of walking into traffic.

My life has spanned over six decades. I still enjoy starry nights as much now as I did when I was a kid lying on a quilt in my Grandma’s front yard. I still look upon the heavens with wonder and awe.

No matter where the remainder of my life might take me, or where I may live, nothing will ever take the country out of me. I will always be as country as can be.

Copyright © June 2018 by L.S. Fisher