Saturday, November 10, 2018

November: Alzheimer's awareness and Caregiver Month


November is designated as the month to raise Alzheimer’s awareness and to honor caregivers. I am going to focus on Alzheimer’s caregivers.

Taking care of a person with Alzheimer’s or other dementias is an all-consuming undertaking. In the US, more than 16 million family members and friends provide unpaid care for their loved ones with dementia. They provide 18.4 billion hours of unpaid care at a value of $232 billion. About half of the unpaid caregivers provide care for four or more years. Alzheimer’s disease is called the “long goodbye” for a reason.

The average life expectancy after diagnosis is between eight and ten years, but some people live twenty years or more with the disease. Diagnosis takes an average of 2.8 years. Jim’s diagnosis of an Alzheimer’s type of dementia was the result of the process of elimination. Especially at his age (49) an entire battery of test results were examined for a different cause for his confusion. It was critical that we ruled out treatable conditions: drug interactions, vitamin deficiencies, thyroid problems, depression, and low blood sugar.

The emotional stress of caregiving is pretty much off the charts for 60 percent of the caregivers. This emotion is followed closely by depression. The entire process of caregiving was a ten-year rollercoaster for me. We had good times, keeping our lives as close to normal as possible, followed by crisis after crisis, completing the downward spiral from end stages to the inevitable conclusion.

The object of this article is not to sugarcoat caregiving, but to bring awareness to how difficult it is to care for another person. I had an exceptional amount of family and friends supporting Jim and me. I was in my mid-forties, and that made me wonder—how could an elderly person provide care for a spouse without that support and without the resilience of a younger caregiver?

The long-term commitment of an Alzheimer’s caregiver causes medical problems for the caregiver. I was one of the caregivers guilty of not taking as good of care of myself as I should have. My company required annual health fairs and my test results fell within the heart-attack-waiting-to-happen category. I don’t know if I would have made it through if I hadn’t changed my ways about my own health.

If you are a caregiver, I urge you to take care of yourself from the beginning to the end. Contact the  Alzheimer’s Association and join a support group to learn from the experiences of others, to have an opportunity to vent, and increase your circle of friends. Visit www.alz.org for vital information about strategies to help yourself and your loved one.

If you know a caregiver, don’t abandon them. Provide emotional support, include them in fun activities, and let them know that you love them. Help them to the best of your ability to do so.

Caregiving is a marathon, not a sprint. I urge family caregivers to never give up on life and happiness. Find hobbies and social engagements that make you happy, and rid yourself of obligations that add to your stress. Draw on your inner strength and spirituality to help you live life to the fullest.

Copyright © November 2018 by L.S. Fisher
#ENDALZ

Wednesday, October 31, 2018

Alzheimer's Day at Walmart


Sunday, my sister-in-law Ginger and I spent a good part of the day at Walmart collecting for the Sedalia Walk to End Alzheimer’s. Our walk was in September, but since we fell short of our goal, we were trying to get a few more donations and “meet and greet” the shoppers.

We’ve set up outside Walmart several different times, but it’s usually during the heat of summer. In fact, we have a real talent for choosing the hottest day of the year. This was a first for me—I wore a sweater.

The weather was sixty-ish, but the wind was gusty at times and just a steady strong breeze at others. I lugged the table to the ideal spot and Ginger and I began our battle with the wind. We struggled with taping down the tablecloth. As soon as I set the collection jar on the table, the wind caught it and blew it down the sidewalk. Finally, we had everything taped or weighted down. We set out T-shirts, books, Dum-Dums for the kids, and informational brochures.

People couldn’t decide how to dress for the weather. We saw shorts, flip-flops, children with bare feet, sweaters, coats, dresses and high heels, boots, and a few who might have made the famous Walmart photo ops.

The time flew by as people stopped to donate and share their stories. Many of them have traveled the same journey as I have. 

A young woman told us, “My nana has it.” Others: “My dad” or “My mom.”  Another lady made a donation and said, “Thank God, no one in my family has Alzheimer’s, but we do have friends that have it.”

One man wheeling a full shopping cart almost passed us by, but he stopped. “Thank you for doing this,” he said. “I walked in Tennessee this year.”

I smiled. “Thank you!

One man came up to us. He reminded me of Jim because his hat was covered with colorful hatpins. He chatted for a while, and then he said. “I’ve been diagnosed with Alzheimer’s.”

The T-shirts were popular items and I went back to my car several times to replenish the stock. Just as we were thinking about closing down, a man wearing a suit walked up to us. He made a donation, and we handed him a T-shirt. “My mother died from Alzheimer’s,” he said. He looked up at the sky and I saw the tears welling up in his eyes. He began to talk about her and her faith in a better world. The tears slipped down his face and he dried them with the T-shirt. He talked about his family dynamics and the guilt his brother felt for not being there for his mom. As he wiped tears, he said, “I’m sorry, I didn’t mean to bring you down.”

“Hey, we’ve all been there,” I said. “Let me give you a hug.”

We hugged in the way that those of us who have lost loved ones to Alzheimer’s hug to comfort each other. Then, he hugged Ginger.

As it usually happens when we fundraise for Alzheimer’s—we find others who know the pain of watching a loved one fade away with this formidable disease. As always, we share the hope that the end of Alzheimer’s is nigh.

Copyright © October 2018 by L.S. Fisher
#ENDALZ

Friday, October 26, 2018

Memory Dog


When we get ready to take our dog out in the mornings, she stops in the hallway if she hasn’t heard us turn off the burglar alarm. I always praise her for reminding me and avoiding  a call from the alarm service.

“I think she is a memory dog,” I told my husband.

“What has she reminded you of this time?” Harold asked.

“Well, I came in and forgot to shut the garage door. She just stood at the top of the steps and looked at me until I closed it.” I figure at our age, we need a good memory dog.

People have guide dogs, hearing dogs, autism service dogs, seizure response dogs, diabetic alert dogs, PTSD dogs, allergy detection dogs, and mobility assistance dogs.

I couldn’t help but consider how dogs could be used for persons with dementia. Some Alzheimer’s units have dogs and the residents can become quite attached to them. In fact, the scuffle that caused Jim to be kicked out of a nursing home was over the dog.

According to Psychology Today, in 2014 two groups—one in Scotland and one in Israel— trained dogs to assist a person with dementia. Dogs are on a six-foot leash so they can lead their owner in an appropriate direction. The dogs understand the command “home” to keep a person from being lost.

To assist caregivers, the dog’s collar has a GPS navigational device that can be activated remotely. The dog is trained to recognize the tone as a command to return home. If a person leaves home without the dog, the dog can track by scent to find the lost person.

The dementia assist dogs are trained to recognize different tones to help a person “remember” daily tasks. Different tones will instruct the dog to bring medicine in a bite proof bag with a note, lead the person to a cabinet to remind them to eat, drink water, or other personal care. The dog also knows how to trip an alarm in case the person falls, chokes, or needs intervention.

In the United States, 4 Paws in Zenia, Ohio, trains Alzheimer’s Assistance dogs. Training an Alzheimer’s Assistance dog costs between $40,000 - $60,000. The family receives assistance with the cost of training. Their website plainly states that if a person cannot be left alone, they should not be left alone with the dog. The purpose of these dogs is to help the quality of life for the caregivers and their loved ones with dementia. In addition to the assistance dementia a trained dog can provide, he is also a companion and walking the dog provides exercise.

Jim had several favorite dogs over the years, but I think Bubba had to be his all time favorite. Although Bubba wasn’t a trained dementia dog, he was a faithful companion. Before he went into the nursing home, Jim walked Bubba and my dog Sherry almost every day.

Many of us have fur babies that become an integral part of our family. Our pets help combat loneliness, but specially trained dogs have the potential to be lifesavers.  

Sources:


Copyright © October 2018 by L.S. Fisher
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Thursday, October 11, 2018

Memory Failed


It is hard for me to leave home with all my paraphernalia in tow when I have more than one event on my daily calendar. Last week, I had practice with the family band in a different county, immediately followed by watching my granddaughter perform with the high school band at a football game in yet another county.

I was gathering up my practice items (ukulele, Kindle, music stand, book with every possible chord, tuner, capo) and preparing for the football game (camera, jacket, bag to carry items). As I put everything together, I looked at the stack and thought, Oh, yeah, something’s missing. I’ll go to the closet and get it. Except, when I got to the closet, I couldn’t remember what I needed to get. “Sometimes my memory fails me,” I told my husband. “I can’t remember what I forgot.”

I looked at my watch and made a mad dash for the car. If I left immediately, I wouldn’t be pressed for time.

A couple of miles down the road, I called my mom to tell her I was on the way. “Now, I remember what I intended to bring!” I said. “I thought I would need a cap to keep the sun out of my eyes at the game.”

“I have one I’ll send with you,” she said.

“I’ll be there in plenty of time,” I said. Well, those were optimistic words. First delay was a wreck. The second and longer delay was road construction. I made it in the nick of time and my mom had figured out a strategy for me to make it to the game on time following practice. I left my car in a convenient place so that I wouldn’t have as far to drive to the game.

I met up with my daughter-in-law Stacey and rode to the game with her. At the game, Stacey was helping push equipment onto the field, and I thought I’d do a camera check before the band began their performance. I focused in on Stacey and the button wouldn’t push down. I tried several times, but nothing happened.

I looked at the screen and it said, “Memory card failed.” Well, that was a new one. The card I like to use was sometimes locked. Of course, I only had my camera—the extra battery and cards were in the car.

I took the card out, put it back in. Same message. Again, and again. Finally, success, and I snapped several good photos of my granddaughter dancing, twirling and tossing her flag.

Life certainly gets more complicated when memory fails—whether on my camera or in my brain.

Each of us counts on our memory to help us make it through the day. Dementia impairs memory enough that a person cannot complete daily tasks. Forgetting what I went to the closet to find caused an inconvenience, but it didn’t keep me from doing the things I wanted to do. I consider it a good sign that I eventually remembered my cap and found a substitute.

Without a resolution, my camera would have let me down at a time when I needed it. I’m glad that I resolved the camera issue and that the memory problem was a temporary thing. All it took was resetting the memory card. Now, if only, I can find a way to reset my brain when it lets me down.

Copyright © October 2018 by L.S. Fisher
#ENDALZ

Friday, September 28, 2018

Broken Minds and Broken Brains

Whenever I buy eggs, I always open the carton and look at the eggs inside to make sure the shells are all intact. Egg shells are fragile. A cursory look will not always spot broken shells in the carton, and the last carton of eggs I bought had two broken eggs in it.

Since I don’t want to get sick from eating a cracked egg, I threw the eggs away. Those eggs will never reach their full potential. They could have been scrambled, boiled, fried, poached, or used in a recipe. Eggs are versatile; at least they are, if they are not broken before their time.

Sometimes, people are broken before their time too. They can be broken mentally or physically. Humans are remarkably resilient, while being fragile at the same time. The mystery of why adversity makes one person stronger and breaks another is beyond my comprehension.

John D. Loudermilk wrote the country song “Break My Mind,” a song about one of the ways people are broken—through failed relationships. Minds can be broken by abuse, failure, humiliation, physical pain, loss, feeling trapped, feelings of not living up to expectations or potential, or PTSD from a past event. Some people become depressed, which can lead to suicidal thoughts.

Jim suffered from PTSD caused by his tour of duty in Vietnam. He dealt with depression and suicidal thoughts for several years. I believe this brokenness was brought on by his experiences in the military and exposure to Agent Orange. I also believe there is a connection between the effects long-term depression had on his brain and the dementia that would eventually be the cause of his death.

War doesn’t just kill and maim people during combat; it has residual effects that change lives forever. It makes some people stronger and breaks others. The VA reports that the suicide rate is twenty-two percent higher for veterans than nonveterans. Twenty veterans take their lives each day.

It took me a long time to realize that I couldn’t make Jim’s depression better. I am thankful that he didn’t commit suicide. Considering the vulnerability Jim had while surrounded by a loving family, I can’t imagine how dire the situation is for homeless veterans, or those set adrift because of alcohol and drug abuse.

In life, circumstances beyond our control can determine whether we live up to our potential or whether we lay broken and bruised. Depression broke Jim’s mind and dementia broke his brain.

Source: 2017 “VA Releases Veteran Suicide Statistics by State.” https://www.va.gov/opa/pressrel/pressrelease.cfm?id=2951

Copyright © September 2018 by L.S. Fisher
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Tuesday, September 18, 2018

Biscuits and a Bunny


Some people find it hard to write, but for some of us, not writing is harder. Throughout my entire life, I’ve found writing to be a way to set my mind at rest, put things in perspective, and to, more importantly, move on.

Some of my friends and family, who had missed the hyperbole and drama, were floored when the social media queen left Facebook. I assure you, physically, I’m healthy.

Emotionally, I’m a mess. My heart is black with hurt and anger, my mind is spinning out of control for the things left unsaid. It is not my story to tell, and I respect that.

Getting off social media has its downside, I’m not seeing the photos my brother is posting during his trip, I’m not interacting with my Facebook friends, and I have nowhere to post the beautiful sunset photo I took a few nights ago. The upside is I’m avoiding the aggravation of the political uproar. I have more time to read. 

I’m catching up on all the chores set aside prior to our local Walk to End Alzheimer’s. We tackled the grass yesterday. The rain had made the yard too soggy to use the tractor and we’d mowed what we could with the regular mower. It finally dried up enough to mow with the tractor so Harold fired it up, drove out of the machine shed, and went to work.

I had trouble engaging my brain to figure out the sequence necessary to start the Bad Boy. The most I could get was a click. I thought that maybe the battery was dead. I went outside to see if I could get Harold’s attention, but he was already far away, and headed in the other direction. I tried several different moves, and finally realized the blade was down. Well, duh.

Mowing is a time to think, and my spinning thoughts made my eyes water, the words I wanted to shout made my throat hurt.

I had finished my part of the mowing and made a final swath down a bank through some too-tall grass. As I turned to climb up the bank, I noticed the grass moving. Curious, I stopped the mower and looked at the ground expecting to see a mouse or mole. Instead, it was a baby rabbit bleeding out on the grass. I cried for destroying the small, living animal who just happened to be in the wrong place at the wrong time.

This morning, I reminded myself of a person in the early stages of Alzheimer’s. I mixed up some biscuits to go with our leftover sausage gravy. Harold set the timer, but instead of putting the biscuits in the oven, I set the pan on the countertop. I bustled around taking care of other things, and about the time I poured an extra glass of milk, I realized the biscuits weren’t exactly baking. After resetting the timer, I put the biscuits in the oven and poured the extra glass of milk back in the jug.

The timer went off, I checked the biscuits, and closed the oven door. I proceeded to set out the dishes, get the silverware, and totally forgot the biscuits. When it crossed my mind again, I grabbed a mitt, opened the oven, and breathed a sigh of relief that they weren’t charred.

After a few bites, Harold said, “These are the best biscuits you’ve ever made. I love the little crunch on the bottom.”

“I like them too,” I said. “They remind me of Virginia’s biscuits. They always had that crunch.”  

Well, the biscuit story had a happier ending than the mowing story. That’s how life goes. Life isn’t fair and the good guys don’t always win. Sometimes, you feel like a perfectly baked golden brown biscuit, but other times you feel like you’ve been run over by a lawnmower.

Copyright © September 2018 by L.S. Fisher

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Thursday, September 13, 2018

Women and Alzheimer’s: The Double Whammy


Two-thirds of the 5.5 million Americans with Alzheimer’s are women. Why? The most obvious factor is age. Women have longer lifespans and are more likely to reach the age of highest risk. Women worry more than men do about developing Alzheimer’s, and with good reason. A sixty-five-year-old woman has a 20 percent risk of developing dementia during her lifetime. I don’t know about you, but I’m not happy with those odds.

Being a caregiver for my husband was never a part of my vision of our life together. Jim was decisive, a man of strong convictions, protective, creative, and loving. Never in my wildest imagination could I have envisioned the turn our lives would take when he developed dementia. And certainly, if an Alzheimer’s type of dementia had entered my mind, I would have thought of him as an elderly man, not one who wouldn’t live to see his sixtieth birthday.

The job of caregiver falls more often on women. They are two and a half times more likely than men to provide around the clock care for a loved one who is in the late stages of the disease. Female caregivers are daughters, wives, siblings, friends, and in younger onset—mothers. In a study of caregivers, indications are that females are substantially more likely than males to provide intimate personal care for their loved one with Alzheimer’s. Female caregivers assume responsibility for bathing, dressing, toileting, and changing adult diapers.

Caregiving adversely affects women’s employment. Twice as many women as men give up their careers entirely to be caregivers. Seven times as many women as men go from working full-time to part-time in order to be a caregiver.

I was in my forties when Jim developed dementia and worked full-time. Quitting work wasn’t an option for me. There were times when the challenges of juggling a job and caregiving seemed overwhelming. Jim required only about four hours of sleep at night, and I often went to work sleep deprived and emotionally drained. To further complicate things, from time-to-time I would receive a phone call and have to go home to tend to the latest challenge—wandering, refusing to let someone else do something for him, or just to comfort him when he was scared or depressed.

Think about it—as a woman you are more likely to be a caregiver for a loved one with Alzheimer’s, and then, after years of caregiving, you are more likely to develop the disease. We women have a large stake in ending Alzheimer’s. Our brains matter to us, and we want to keep them healthy throughout our lifetimes. We need to join together as women, as caring people, and as advocates to end Alzheimer’s now.


Copyright © September 2018 by L.S. Fisher
#ENDALZ

Monday, September 10, 2018

Walking in the Rain


When Mindy asked me if I wanted a tent for the Mozark Press sponsor booth at the Sedalia Walk to End Alzheimer’s, I said, “Yes, it will provide shade.” Last year, it was miserably hot.

Two days prior to the walk, the rain moved in. Sometimes, it sprinkled; sometimes it poured. The walk is rain or shine. I was definitely hoping for shine, even hot shine.

The morning of the walk, I was encouraged, but still wore my waterproof snow boots and my “Memory Walk” purple rain jacket from fifteen or so years ago.

Volunteers and the committee showed up at the Highway Gardens before dawn to set up tents, and arrange tables and chairs. I unloaded copies of Treasure Trove of Memories and put them on the table safely encased in their waterproof tubs.

Things were shaping up nicely—then, the rain came. Registration began and an additional tent was set up near the registration table. My team members started showing up, including my friend and fellow advocate, Jennifer, who had driven in from Jefferson City to walk in the rain with us.

A few team members watched my table when I went to greet Congresswoman Hartzler and her field representative, Rachel Gilroy. Rain dripped from the Congresswoman’s umbrella as I introduced her to family, volunteers, and Faith Bemiss, a reporter from the local newspaper. During an interview, Vicky Hartzler talked about Alzheimer’s research funding. After talking about the increases approved by Congress, she told the reporter, “Alzheimer’s is the most expensive disease in America.”

I escorted Congresswoman Hartzler to the stage area. As we were waiting for the presentation of the flag and the national anthem, I saw that WyAnn had her trophy, but mine was still in my car. Our teams won the trophies from last year, hers for the biggest team, and Jim’s Team for the best fundraising team. I sent a text to my son who retrieved the trophy from the car.

Congresswoman Hartzler shared encouraging words with the walkers. She spoke of her hope that a cure would be found in her lifetime. During the ceremony, she held a purple flower in memory of her mother and mother-in-law.

The walk began and I looked for my team. I found them, and realized the team banner was still in the car. The walk was a short-cut of the short-cut that we had used in the past. Most people headed to their cars while some of us started putting the tables, chairs, and tents back where they belonged.

This was my twenty-first walk and only the second time we had to walk in the rain. I’ve never been so wet in my life outside of a bathtub. The snow boots were great and never leaked. I peeled off my jacket and climbed into my car. My hair was plastered to my skull. I couldn’t remember where I’d put my comb so I fluffed it with my fingertips.

The difference between waterproof and water repellant became apparent. My Grand Champion shirt, which was hidden the entire day, was soaked. My jeans were soaked, but I wasn’t too uncomfortable because my feet were dry. The snow boots did the job!

Sometimes rain falls in our lives at the most inconvenient times, but rain is essential to life itself. I certainly didn’t blame the people who stayed home, but it was inspiring to see the ones who were compelled to come and walk. It did my heart good to see those who smiled, hugged, and encouraged each other.

I walked for Jim. I walked for all who have died from the disease. I walked for the five million Americans living with Alzheimer’s and their caregivers. I walked for my kids, grandkids, and babies not yet born. I walked for a world without Alzheimer’s.

Copyright © September 2018 by L.S. Fisher
#ENDALZ

Monday, August 27, 2018

Remembering Jim on the Day He Was Born

I was up late last night, and the first thing I thought of when the clock moved past midnight was…It’s Jim’s birthday.

A lot has changed since Jim left this world thirteen years ago. I wonder what he would think about how things are now. I can only imagine how he would feel about some things, but I am sure of others.

I remember one time when I was feeling a little melancholy and worried about the mistakes I’d made as a parent. I should have done this, instead of that. I was too hard on the kids at times. Jim just looked at me and said, “Well, we must have done something right.” He was confident of their futures. Our sons grew up to be good men, family men, married to the two best daughters-in-law that we could have ever wanted.

Jim would have been proud of his four grandchildren. They are intelligent, of good character, and inherited the Fisher good looks. Jim loved being a granddad, and I’m thankful that he enjoyed the three older grandkids, and it makes me sad that he never met our youngest grandson.

I’m sure Jim would like that I continue to live a happy, love-filled, and mostly healthy life. Sure, sad things happen from time to time, but the moments we waste on regrets and sorrow takes away the time we have to enjoy our blessings.

I still miss Jim, and he sometimes comes to me in dreams and random thoughts. I cling to the good times, the happy times. I like to remember our trips to Colorado and Oregon and the happiness that those journeys brought Jim. One time my mom said she was glad we took those vacations and trips when we did instead of thinking that would be something we could do in retirement. I’m glad we did too, although at times, I was a reluctant traveler.

It fills my heart with gratitude that I was fortunate enough to receive Jim’s endless love. He would have wanted us to remember him with joy and laughter rather than with sadness. As far as his birthday—true to his unselfish nature, he would have wanted us to be happy.
  
Copyright © Aug 2018 by L.S. Fisher
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Friday, August 24, 2018

Coincidences Happen, Believe It or Not


Yesterday, I was proofreading/editing on Jim’s memoir, Indelible, and came across a story about picking up a Memory Walk T-shirt that my sister-in-law had made into a tank top for me. When I read that, I realized I hadn’t seen the shirt in years and doubted if I still had it.

Later in the afternoon, after doing some housework, I realized I’d worked up a sweat. I went into the walk-in closet, lifted up some shirts stacked on a wire rack, and picked a white one to pull out from the middle of the stack. It was the long missing tank top.

I don’t know how many books I’ve read, or TV shows I’ve watched where someone says, “I don’t believe in coincidences.” What exactly is a coincidence anyway? A coincidence is the occurrence of events that happen by accident. It seems that lately in my life—coincidences rule.

At the Missouri State Fair, during one of the live acts I watched, the performers sang “Suds in the Bucket,” a song we hear in line dancing exercise class. This song was a hit for Sara Evans fifteen years ago! Okay, so I’ll admit that wasn’t too odd.

The next day, Harold and I went to brunch at Golden Corral, and were the first two in the building. While we were taking our plates to the buffet line, someone cued up the music. “Suds in the Bucket” was the first song they played.   

The last day of the Missouri State Fair, I needed to pick up some Alzheimer’s brochures, my photos, and my granddaughter’s drawing. I decided to go to the fairgrounds early to pick up the brochures because I had to pick them up before six p.m. The artwork and photos couldn’t be picked up until 6:30.

Widespread rain was moving into the area and I wanted to limit the amount of soaking I would endure. I’m sure it’s just a coincident that even in the midst of a drought; it always rains during the fair.

For some reason, I decided to walk down a different street than usual. I stopped to watch some horse-drawn carriages and moved on. I decided to take a shortcut between two tents, and came face-to-face with my son. Rob was hanging around to see if the races were going to be rained out.

Rob decided to go with me to pick up the Alzheimer’s brochures. Before  we had even moved from the spot, a man stopped and shook my hand. “It’s good to see you, Linda,” he said. It was a man I had served with on the Alzheimer’s Greater Missouri Chapter board of directors.

You don’t have to believe in coincidences for them to happen. How many times have you been thinking about a song, and turned on the radio at the exact same time it was playing? Or maybe you were thinking about an old friend, and she called you. Have you ever had a sick feeling in your stomach that something bad was going to happen, and you find out later that something bad happened at the time you had the feeling?

Was it a coincident that Jim was a Vietnam veteran—was exposed to Agent Orange, suffered from PTSD, had clinical depression—and developed a rare dementia? It could have been a coincident…

Coincidences can be great surprises, life’s little mysteries, or downright weird. I know some people don’t believe serendipity assumes a significant role in our lives, but I believe it does. Sometimes, I think most of the pivotal events in my life have been the product of chance and coincidence.

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

Copyright © Aug 2018 by L.S. Fisher
#ENDALZ



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
#ENDALZ

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
#ENDALZ

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
#ENDALZ

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
#ENDALZ

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
#ENDALZ

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
#ENDALZ

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