Friday, June 26, 2020

The Bee's Knees

When I took the dog out this morning, I noticed the wild roses were in full bloom. My husband considers them to be a pest growing along the fence row, but the dog, the bees, and I enjoyed their simple beauty.

I  noticed the bees buzzing around the roses and it made me think that those roses were the bee’s knees. Although that expression came unbidden to my mind, it made me curious as to why the heck it was there and whatever (besides seeing the bees) made it pop into my head.

Google tells me that the expression has been around since the late 18th century. At that time, it meant something small or insignificant. Well, wild roses aren’t quite as small as the actual bee’s knees, but they are somewhat insignificant in the entire scheme of nature.

The expression “the bee’s knees” gained popularity during the 1920s and meant something excellent or high quality. Now we’re talking!

Not everyone agrees on the reason for the expression, but some interesting ideas have been thrown out for considerations. It could be because bees carry pollen in sacks on their knees, making them a spot of concentrated goodness. Some people insist bees-knees is just a slang term for “business.” The expression could be because of a world champion Charleston dancer named Bee Jackson, who was popular in the ’20s. I think I’ll go with the dancer!

To my way of thinking, wild roses are the bee’s knees because their beauty is simple. Roses have delicate blossoms, but tiny, sharp thorns protect their stems.

When you have a loved one with dementia, it’s hard to find things that are the bee’s knees. Sometimes life stings and hurts. Yet, amidst the bad times and the sad times, you will find quiet, simple moments that may seem to be small and insignificant, but remain in your memory for a lifetime. It may be that rare smile of recognition, an “I love you, too” said with meaning, sitting on a park bench drinking milkshakes from Dairy Queen, or walking hand in hand while your heart beats with unconditional love. 

Beauty surrounds us, but we have to pay attention and look for it. Wild roses aren’t fancy like award-winning rose bushes, but they are plenty fine for a country girl. In fact, they are the bee’s knees.

Copyright © June 2020 by L.S. Fisher

Friday, June 19, 2020

Just When I Needed It Most

I feel like I’ve taken a backseat to life lately. After a few months of cancellations, businesses closed, and being socially separated from most people that I know, I’ve found that the less I have to do, the longer it takes me to do it. I’m not as motivated as I normally am, and don’t spend as much time on a particular task.

I’ve always liked to power through projects. Start, persevere, and finish before the deadline, or at least by the deadline. Now, I find that two hours is about my limit for a couple of reasons. Typing or using a mouse triggers my trigger finger, carpal tunnel, and arthritis in my right hand. The second problem is that I have developed the attention span of a gnat. I’m easily distracted, or led astray, by the various activities that I need to accomplish during the day: volunteer work, conference calls, personal financial work, writing, housework, yard work…

Most days lately, I’ve felt my age. Up until recently, I thought age was only as old as you felt, and most of the time, I felt good. Oh, yeah, I had the occasional ache or pain, but mostly it was short lived.

Last week, I was a mess. During the endless yard work, I managed to get poison ivy from my wrists to my elbows. My left knee went from its usually achy self to screaming pain when I spent too long on my feet. I was miserable and out of sorts, impatient with others, and feeling just a little sorry for myself.

I made a rare trip to town for an appointment so I checked my post office box. I pulled out a few pieces of mail and noticed I had received a card. I opened it, and inside was what appeared to be a hand-decorated card. On the inside was a message “Remembering you in Prayer. Thinking of you!” It was from my church’s prayer ministry. So there it was—just what I needed when I needed it most.

Now that the state has opened up for business, many are breathing a sigh of relief and going about their activities as usual. Still, our most vulnerable people are still living life isolated and praying they don’t get Covid-19.

Long-term care facilities are still closed to outsiders. It’s sad to drive by the nursing homes where we played music and see empty parking lots. Isolation is hard on people who live in nursing homes. They miss their families, the entertainment, going on outings, and getting hugs from loved ones. It has to be heartbreaking for caregivers and families who can’t have in-person visits with the residents.

Well, life moves forward, and I need to move forward with it. Poison ivy clears up—eventually. It’s amazing what a difference the weather can make with the body aches and pains. I have an upcoming doctor’s appointment to have my knee checked out, and in the meantime, capsaicin patches and ibuprofen help. These setbacks are only temporary. 

The calendar says I’ve gained a year, but my heart says I’ve gained a new lease on life. Better days are coming, just when I needed them most.
Copyright © June 2020 by L.S. Fisher

Sunday, May 24, 2020

May or May Not

Here it is Memorial weekend, and this month doesn’t have the feel of May. Every time I decide to put away my coat, the weather turns nasty and without its warmth, I shiver in my boots. In my opinion, most days have had the feeling of fall, rather than spring.

So I’m thinking that May may or may not show its sunshiny flower growing weather this year. In typical Missouri fashion, we went from cold and miserable to 90-degree humid weather in one day.  Turn off the heat and fire up the air conditioning. It’s almost as if mid-summer followed our fall like weather. If nothing else, up until now, the year 2020 has been downright weird.

I’ve concluded that people may or may not take precautions as the nation opens up after an extended period of hunkering down. As usual, our country has found something else to divide us rather than unite us.

The pandemic has been a life changing experience for most of us. Our world turned upside down, but the world is round, and it will righten itself—eventually. Whether this will happen too soon or too late depends on the view from inside your head.

Some people don’t handle adversity well, while others see hard times as a doorway to becoming a stronger, more determined person.

Well, now we all know that if everything shuts down, life gets hard. Our consumerism took a hit. We discovered that we didn’t need everything that we wanted. Scoring toilet paper, paper towels, and antiseptic wipes became the highlight of a shopping spree. Instead of random shopping trips, folks found creative ways to avoid entering stores. Grocery pickup gained in popularity. And a year ago could you in your wildest dreams think that you would wear a mask in a store or to the bank?

If we have learned nothing else from this experience, I hope that we have a new awareness that life-altering changes can happen in the blink of an eye. The loss of a job, a health crisis, a mental health condition, addiction, divorce, a death in the family, abuse, and an endless list of setbacks can make or break a person’s spirit.

We each have our own war to fight. Jim and I survived poverty and the gut-gnawing decision of what material things we could do without so we had money to pay the bills and feed our family. We never once took a handout from the government, family, or friends. Luckily, we were satisfied with the simple things in life. That doesn’t mean that we didn’t have ambition and dreams, but life was to be enjoyed one day at a time. We traveled on a shoestring and camped in the mountains, hiked some adventurous trails, cooked delicious meals on a camp stove, and drove through the Rocky Mountain National Park to watch animals. These are some of my most treasured memories.

We built our own home with sweat equity and buying a few boards at a time. For several years, living was easier until it wasn’t. Dementia sabotaged life as we once knew it, and would never know it again. Words don’t exist to tell the complete story of how a degenerative brain disease affects family dynamics.

Jim’s ten-year illness and death motivated me to move outside my comfort zone into the world of volunteerism. Where I was inspired to embrace the memories and share my experiences, I can completely understand those who choose to move on and let their memories fade away.

Each individual has to deal with adversity in his or her own way. They may or may not live life in a way that is palatable to others. Unless another’s actions have a direct impact on me, I don’t waste my time worrying about what someone else does, thinks, or says. My responsibility is to travel my own journey and exit this world with as few regrets as possible.

Copyright © May 2020 by L.S. Fisher

Wednesday, May 20, 2020

When Routine Isn’t Routine

During the COVID-19  pandemic,  routine isn’t routine anymore. I’ve moved from a daily double-booked, jam-packed calendar to day after day of being left to my own devices.

Just because my calendar is clear does not mean that I have no obligations. I still have work to do on my books, website updates to make, conference calls, emails, Facebook and Twitter advocacy posts, not to mention house and yard work that has to be done routinely. And laundry never goes away on its own. The problem lies in not in routine, but the lack thereof.

My routine does not exist. If I don’t feel like doing something today, I’m fine with putting it off until. Instead of jumping in and working on projects, I’ll get sidetracked with playing my ukulele, reading a good book, watching TV, or sitting on the deck drinking coffee, and occasionally taking a nap—in other words, the kind of activities I always wanted to have time for when I retired.

I  accomplish much more when I have a routine. I try to get back on track with my to-do list. But sometimes I don’t do the routine things required to know what I should be doing. I may go days without looking at my mail, or email. I ignore the items on the dry erase board. I forget to even look at the calendar and if I do, I may not be looking at the right day, week, or month.

Routine is important for all of us, but especially for persons with dementia and their caregivers. A few things for caregivers to consider when setting a routine:

1)      Keep grooming for your loved one on a regular schedule. When he starts the day with hair combed, teeth brushed, toileted, and fresh clothing, you’ve helped establish a good beginning for a new day.
2)      Have meals at regular times. Your loved one may not experience hunger in a normal manner. This can range from not realizing it is time to eat to forgetting that he has just had a meal and thinking it is time to eat again. The type of snacks you want to have available depends on whether your loved one needs extra nutrition to maintain weight, or a low calorie snack to avoid unnecessary weight gain.
3)      Give medications at the same time every day. Two reasons for this—the medications will provide continuing benefits, and you won’t forget it!
4)       Schedule activities for the time of day that works best for your loved one and suitable to her abilities. Sundowning can be a problem for people with dementia, and they won’t be at their best during evening hours. Activities can be as simple as taking a walk, going for a car ride, watching a favorite show together, or simply sitting on the porch drinking coffee or tea. Oh, and ice cream and milkshakes can go a long way to brightening up a day.
5)      Establish a nighttime routine. Some people with dementia do not sleep well. Taking a relaxing bath and putting on pajamas can help remind them that it is bedtime.

The only thing you can depend on is that every day will be a new experience when you are the caregiver for a loved one with dementia. Keeping life as routine as possible is the best way to stay on track.

Sometimes you may find that no matter how much you try, it’s really a coin flip—heads, things go according to the planned routine; tails, the day dissolves into chaos. On chaotic days, the flip side of routine—flexibility—rules the day.

Copyright © May 2020 by L.S. Fisher

Wednesday, April 15, 2020

Escape Plan

People are getting restless with the COVID-19 pandemic Stay Home orders. About half the people want to open up the economy and go back to work (or to play), the other half believes we need to bide out time until it’s safe.

I’ll admit that I’m firmly in the be patient camp, but I’m in a better position than a lot of people. I’m retired, don’t have rent or house payments, no car payment, and can do just about anything I need to do on my PC.

On the other hand, I’m pretty tired of not seeing my family. I’ve found that I’m getting downright lazy and have zero ambition. I also tire easily. I refuse to look at my 401k.

From time to time I get a hint of depression and my heart feels sad for the people who are hurting financially, those who are working and don’t feel safe, and for the sick and dying. I ache for those who have lost friends and families to the pandemic.

This morning, I had a couple of random thoughts. One was the TV series The Last Ship. That show was a worst-case scenario of a worldwide pandemic. My nephew said it was on Hulu. I don’t recommend watching it.

So many people feel like they are in jail and that reminded me of a story of when Jim first went into the nursing home. I went to visit him one day and noticed a group of residents creeping toward the Exit door in the Alzheimer’s unit.

From Indelible:    
Escape Plan

There was a bit of an insurrection one evening at the nursing home with some of the residents hell bent on escaping.

“Can we get out that door?” The old lady clung to her walker as she posed the question to one of her companions.

“No, let’s try that one,” replied the old man, hitching up a wayward overalls’ strap.

His four followers, two with walkers, one with a cane, and one who shuffled her feet as she clung to the rail, proceeded down the hallway toward the door.

“Dinner is ready!” announced the nurse as the group passed in front of the dining room door. The group forgot about escaping and shuffled to the dining room.

The nurse smiled at me. “They’ve been taking turns setting off the door alarms today. It happens from time to time. It should be an exciting evening with a full moon tonight.” Some people scoffed at a full moon affecting people, but one thing I’d noticed was the scoffers did not work in a nursing home.

I’m looking forward to the day the pandemic is gone, or at least well under control. I look forward to life as normal—or at least the new normal. I know it will be a long time before I take going where I want, when I want, for granted.

In the meantime, my escape plan will be sitting on the deck, playing my ukulele, or reading a good book.

Copyright © April 2020 by L.S. Fisher

Saturday, April 11, 2020

An Unexpected Pause and Reset

In my life, I’ve noticed how the worst possible circumstances can bring about both good and bad changes. When Jim developed dementia, I could only see doom and gloom once I learned how the story was going to end. My heart was broken, and I believed my soul was broken too. I’d always taken for granted that we’d grow old together, and that was swept aside with the tidal wave of disease.

We still had some good times. Although the disease was progressive, we made the most of the time we had when Jim was in the early stages. We traveled, we spent time with family, and life went on as usual for a few years with only the occasional glitch.

Jim’s disease motivated me to become a different person. I became an active volunteer for the Alzheimer’s Association and discovered my mission in life. I found an inner strength that I never suspected existed. It was as if I pushed reset and rebooted my life.

Our world has become an unusual place as a deadly virus forced us to take a pause. Once again, things that we took for granted—going to conferences, concerts, buying everything we needed at the grocery store, going on vacation, hugging friends and family—disappeared like the smog that clouded our cities.

Life is not normal now. I’ve not spent this much time at home since I was a kid and lived twenty miles from nowhere. As they say, life is what happens while we are making plans. I’ve lost track of how many events have been cancelled. The Alzheimer’s Forum in DC was the biggy, but countless other meetings, shopping excursions, girl’s days with my mom and sisters, music practice/programs, and eating out cancelled. Life as I have grown to know it, paused.

The pandemic has taught us several lessons:

1)    Our health care system needs to be overhauled. Doctors and nurses should not die for a lack of PPE.
2)     We have to depend on each other to not spread the virus. We must do whatever it takes—social distancing, washing our hands, or simply staying home.
3)     People learned the value of home cooking, and without the busy schedules, families gather around the dinner table.
4)     Parents discovered the real value of teachers.
5)     People have learned creative ways to celebrate and to mourn.
6)     The pandemic brought out the best in people—sewing masks, designing and producing face shields, picking up groceries for their neighbors, and showing kindness.
7)     The pandemic has brought out the worst in people—hoarding toilet paper (of all things!), throwing their gloves on the ground, blaming others for the virus, ignoring safety measures, and being selfish.

With a drastic change in lifestyle, the earth is healing. The air is cleaner and the earth is rumbling less. (I didn’t know rumbling was a thing!) We’ve found out that our lives were cluttered with things we never needed. Most of us have seen the world around us, and family life in a way that we’ve never seen them before.

Of course, the economic impact is devastating, and people long for life to get back to normal. Lives have been lost to the pandemic, and lives have been saved due to cleaner air, less traffic, and slowing down seasonal flu.

We’ve taken a step back, and after our “pause” our “normal” will be a new normal. It is as if God pushed the reset button.

Copyright © April 2020 by L.S. Fisher

Friday, April 3, 2020

Social Distancing

Now that we are all social distancing due to COVID-19, I think about Jim and how he loved to get together with family. I don’t know if he would have been able to handle social distancing.

Well, he did social distance from the other residents in the Memory Care unit. Some of them tried to befriend him, but he didn’t seem to notice them unless they got in his way. He did pay more attention to the nurses and the aides. In fact, he seemed to become attached to some of them.

Before dementia, Jim loved to get together with family and friends for big dinners. Typically, everyone would pull out their musical instruments and have an impromptu jam session.

I never played an instrument and seldom sang, but when I did, I sang with Jim. He could throw in harmony and always made me sound better than I actually was.

A couple of years ago I bought a ukulele just to see if I could learn to play a few tunes. My thoughts were, I’d be serious when I cut off the long nails I’d had my entire life. Well, it wasn’t long before I realized that I wasn’t ever going to learn how to play until I trimmed the nails on my left hand.

After I learned a few chords, my brother Jimmy encouraged me to join the Capps Family Band for practice. Then, he said I might as well go with them when they played music at the nursing homes. Eventually, he tricked me into singing a song, and the next thing I knew, I was on the schedule.

Now, I realize that with the social distancing, one of the things I miss the most is playing music with the band. I miss our two practice sessions where we figure out what songs will be on the playlist.

I miss seeing the residents’ faces as we perform our program. They really love my 93-year-old mom, who, in turn, loves to sing for the “old folks.” My niece, Amy, is so talented she could sing the phone book and it would be stunning. Of course, last practice she worked on “Goodbye Earl” which is an entirely different kind of song. My sister, Roberta, had “Rocky Top” ready for the next program. Mitchell was going to sing, “My Rifle, My Pony, and Me.” Kathy has a great selection of songs and one she planned on singing was “I Heard it in a Love Song.” Jimmy was going to sing a song he stole from me—“Dream Lover.”

Well, we had to cancel February, and, of course, the March program was cancelled due to COVID-19. It was a good program, and I know that someday we’ll get to see our favorite folks at the nursing homes again.

My brother Jimmy has been picking up his guitar and he or Kathy video a song each day. I decided I wanted to video one of the songs I planned on singing in February—“Cowboy’s Sweetheart.” Jimmy makes it look a lot easier than it is.

Jimmy and the band play the music when I sing at nursing homes. If I mess up, it isn’t too noticeable. I like to sing “fun” songs, so it makes my day if I can make the residents smile.

Jimmy likes to say that what I lack in talent, I make up for with courage. Without the audience, without the band, I recorded “Cowboy’s Sweetheart.” Most of my home recordings are never, ever going to see the light of day, but I thought this one might make someone smile. If I accomplish that—it will make my day!

Copyright © April 2020 by L.S. Fisher

Saturday, March 28, 2020

Unfortunate Accident

Many years ago, Jim’s parents, Bill and Virginia, noticed a squirrel that hopped up on their patio, day after day. They started to feed the little fellow and looked forward to his daily visits.

One day the power went out. A couple of linemen from the electric cooperative where I worked drove out to fix the problem. The line superintendent called me on the intercom and said, “We found the problem. Their pet squirrel got into the transformer.”

Later, my grandson Colby told me that the squirrel had “an unfortunate accident.”

People have unfortunate accidents too. I recently read about a couple who heard the president talking about an anti-malarial drug, chloroquine showing promise as a treatment for COVID-19. They knew that they have chloroquine phosphate to treat their koi. They mixed up a small amount and took it. They both immediately became ill. The woman vomited and lived, her husband, unfortunately, died.

Why would they do such a thing? They had probably heard about off-label use of drugs for years. Once they heard about the studies, they probably felt fortunate enough to have some on hand. Other people are enrolling in studies and trying other drugs to stave off or shorten the effects of COVID-19.

France and Italy are using hydroxychloroquine to treat COVID-19 although its effectiveness is unknown. The unfortunate thing about experiential off-label use of a drug in a pandemic is that people who take the drug for chronic conditions such as lupus, rheumatoid arthritis, or sarcoidosis find it “out of stock.”

India, where many of our drugs are manufactured, is not exporting the raw ingredients for hydroxychloroquine. They are recommending their medical professionals take the drug to prevent developing COVID-19. In the USA, pharmacists are reporting shortages as off-label use of the drug for the pandemic soars. People who have used the drugs for years to maintain their health are now finding it unavailable. It is unreasonable for healthy people to take a drug for off-label use when it might endanger the health of people whose lives depend on an uninterrupted supply of medication. These drugs have side-effects and it may be a case where the cure can be worse than the disease.

Off-label use can be a slippery slope. I took issue with the anti-psychotic drugs physicians prescribed for Jim. First, Jim was on a new Alzheimer’s drug that caused him to start bleeding and to feel bad. He had only been off the drug for a few days when he got into a scuffle with another resident and was kicked out of the nursing home. Fast forward to “regenerations.” They prescribed an anti-psychotic drug that made foam flow out of his mouth. Jim couldn’t eat or drink and he paced constantly, and acted like an angry insane man. He dropped weight and looked like he was on the verge of dying.

My son and I told them to either take him off the drug, or we would take him to a different hospital. The doctor said that the drug couldn’t have those side-effects and that they “would not be responsible” for how he acted without the drug.

We insisted. Signed papers, etc. Within a few days of being off the drug, he returned to his normal self. Throughout Jim’s disease, we fought the anti-psychotic drugs since most of them did not work on him and made him worse. Drugs that “calmed” or more accurately “zoned out” other residents would agitate Jim.

My feelings are that when using a drug off-label, use with extreme caution and only under a physician’s close supervision. If you start having strange side effects, stop taking the drug! In addition, don’t try a long shot off-label use when others need them for chronic conditions.

Maybe the best route to take with COVID-19 is wait until the studies are complete. I wouldn’t want any of my friends or family to have an unfortunate accident.

Copyright © March 2020 by L.S. Fisher

Saturday, March 21, 2020

Decluttering the Calendar

My life is usually so busy that my calendar can have as many as three events on the same day. I toss so many balls into the air that occasionally one smacks me on top of my head.

Lately, meetings and events have been scheduled, and cancelled. My calendar was covered with so many changes, delays, and rescheduled events, that I finally gave up and bought a dry erase board. It’s been handy for changes, because I can just erase a date, or time, and write in the new info.

Sometimes, I don’t feel like I’m in Missouri anymore, but have entered a strange world where everything is just a half bubble out of plumb. Each day brings changes: social distancing, sheltering in place, self-quarantine, businesses closing, and the stock market changing at warp speed.

After the Alzheimer’s forum was cancelled, I thought I’d be able to go with the family band to play at the nursing homes. The first home cancelled because of the flu. Shortly after our first practice, all nursing homes were on lockdown—no visitors or volunteers.

I can’t help but think how stressful it would have been for me if I hadn’t been able to see Jim when he was in long-term care. When anyone asked me why I did things for him that the nursing home should have been doing, I had to admit that it was for my own peace of mind. It helped me to know that he was fed, dry, and clean.

Jim was like a part of me. He became dependent on me to see about his well-being. When he could no longer remember our life together, his memories lived with mine in my heart.

Looking back I see how crazy it was for us to get married when we did. Jim had to finish his tour in Vietnam. Then, he was stationed at Ft. Riley for a year. We lived in Manhattan, Kansas, in a one-room apartment. Yes, one room, not one bedroom. We had no air-conditioning and it must have been one of the hottest summers in history. Before Eric was born, we moved to a bigger apartment in the same house.

The point I’m getting at is that we barely had enough money to live on. We paid our rent and utilities and carefully shopped for a month’s worth of groceries. After Jim got out of the service, we lived below the poverty level until I went to work at the Rural Electric Cooperative ten years later.

We went through some hard times, but we always managed to have money in a savings account for even harder times. Jim could keep any old car running and he could fix anything. If the washing machine broke down, no problem. We had family, we had love, and that’s what makes a person’s heart wealthy.

So yeah, a lot of people are going to face some tough times. My 401k is taking a major hit right now, but just like the last recession—if worse comes to worse, I’m not afraid. I’ve been poor before and living through that time is what makes me, me.

The economy doesn’t scare me for myself. I do worry about those who have never known how to budget, how to wear the same clothes and shoes for several years, or how to plan a healthy meal with limited funds. I hurt for the kids who depended on school for their only meals.

I hope that we work together as decent human beings to change the trajectory of this virus. When we come out on the other side, more people are going to learn that hard times make us stronger. When life, as well as our calendars, is decluttered, we will rediscover the worth of simpler times.

Copyright © March 2020 by L.S. Fisher

Monday, March 16, 2020

Something Important to Say

“I have something important to say,” I said to my husband. He got a worried look on his face with this preface to an announcement. We had been talking about COVID-19 so he may have thought I had a fever.

“What’s that?” he asked, cautiously.

“I love you,” I said, thinking that we just didn’t say it enough.

“I have something important to say too,” he said. I smiled in anticipation of words of love. “You snore.” He then proceeded to tell me he had spent several hours in the living room watching TV and eventually catching some ZZZs.

Life has certainly changed over the past few weeks. We Americans are used to going where we want and socializing often. Now to stem COVID-19, we are spending more alone time than ever.

The first indication that things were getting serious in my world was the cancellation of the Alzheimer’s Impact Movement (AIM) in DC. My mom and my husband had both tried to talk  me out of going to DC and were thankful the decision had been taken out of my hands. I spent a day cancelling hotel rooms and plane tickets.

To stop the spread of  COVID-19, we as a nation and as individuals are taking extreme action. People have been placed in quarantine, and what is considered a large group has shrunk from over 1,000 to 50. It’s not easy or inexpensive to shut down venues, concerts, schools, after school activities, professional sporting events, and to hang out the CLOSED sign on restaurants, small businesses, and physical therapy clinics.

Today, our pastor announced our church would be closed for deep cleaning and they have postponed other activities. The next Sedalia Business Women’s meeting has beens cancelled, and other upcoming meetings will probably be cancelled too.

Personally, I’ve been in a funk and can’t seem to get motivated to do much of anything. Lack of sleep and not going and doing as usual, has zapped my enthusiasm.

I have something important to say:  Although the AIM Forum has been cancelled, advocacy work must go on.

·         Approximately 5.8 million Americans have Alzheimer’s disease. Presently, there is no cure or effective treatment for Alzheimer’s. This is why research funding is so important!
·         In 2019, unpaid caregivers provided 18.6 billion hours of care for people with Alzheimer’s, at a value of $244 billion.
·         Two-thirds of Americans with Alzheimer’s are women
·         Two-thirds of dementia caregivers are women. Thirty percent are older than 65. Only 10% are caregivers for their spouse while over half provide care for a parent or in-law.

I have some upcoming telephone conferences, and possibly video conferences. I dread video because that means I should fix my hair and put on makeup. That’s been optional for a while. The only place I’ve been lately was to practice music at my brother’s house. We’ve decided to have more jam sessions while we wait for the nursing homes to open their doors to volunteers.

I just need to keep reminding myself that there’s still work to be done and, eventually, life will get back to normal.

When my husband left home the day of our conversation, I asked him, “Don’t you have anything important to say?”

“I love you,” he promptly replied.

“I love you,” I said, “but you snore too!”

Copyright © March 2020 by L.S. Fisher

Thursday, March 5, 2020

Memory Day Thoughts

On Memory Day, March 4, at the Missouri State Capitol, advocates from across the state spoke with their legislators about establishing the Missouri Alzheimer’s State Plan Taskforce, fund Alzheimer’s grants for respite, and to Build a Dementia-Capable Workforce.

After our visits, we gather in rotunda for a Memory Day Ceremony. This year, I was asked to share some of my thoughts as an advocate. Here are my thoughts:

My Fellow advocates,

Some of you have been Alzheimer’s advocates for years, and for some of you this is your first time. For you who are first-timers, I have to warn you—advocacy gets into your blood.

Each of us has a story that brings us to Capitol Hill. The pinwheel flower shows your connection to the disease. I always select a purple flower because I have lost a loved one.

My husband Jim developed dementia at 49 years old. For the next ten years, the disease stole him away from me, his sons, and his grandchildren. He never met his youngest grandson.

Caregiving for a loved one with Alzheimer’s is on-the-job training for a job that you never wanted to do. From the time you wake up in the morning, until you wake up again the next morning, you are on-the-job. When Jim lived at home, I averaged about four hours sleep each night—and not always consecutive hours.

I was in my forties and worked fulltime. I was lucky to have an abundance of family support. Jim’s mom, his sisters, my mom and my sisters, our sons and daughters-in-law all pitched in to keep him at home for as long as we could. No matter how hard we tried to keep him safe, Jim kept wandering off. 

When I made the heartbreaking decision to put Jim in long-term care, I never relinquished my role as his primary caregiver. My daily routine was to feed him, toilet him, and bathe him. It is safe to say that Jim had more family members dropping by the home than any other resident.

Becoming an advocate gave me power over a disease that made me feel powerless. I’ve been an advocate on the state and national levels for two decades. When more than 1,000 Alzheimer’s advocates wearing purple sashes storm our nation’s capitol, everyone notices! We hear “thank yous” and stories from passersby. We hear “go-get-’em” and “God bless you.”

An important part of being an advocate is building relationships with your senators and representative. That does not happen with one visit a year—it happens through district visits, mobile offices, emails, thank you notes, phone calls, using social media, and letters to the editor.
One of the best things I did was to join AIM, the Alzheimer’s Impact Movement. AIM provides the tools to make me the best advocate I can be.

Don’t let your advocacy for 2020 end here today; let it be a beginning. Take the power you have as an individual and become passionate about legislation that improves quality of life for persons with the disease and their caregivers. Let’s work together to end Alzheimer’s before our target date of 2025. Know that your voice is powerful, and you, individually, and all of you collectively can make a difference.

As an advocate, I do not vote red or blue, I vote purple. Being an advocate is not just what I do; it is what I am.
Copyright © March 2020 by L.S. Fisher

Saturday, February 29, 2020

Unforgettable Characters

Have you ever thought about how life is a story and although you are the main character, you have a full cast of supporting characters? As your supporting characters move in and out of your life, they shift your trajectory, sometimes slightly, but other times turning it into a new direction. Our heroes (unless they fall from grace) affect us positively and put us on an upward course. The villains, sometimes disguised as friends, can sink us to abject misery.

Of course, there are walk-on characters who are so unimportant that they don’t make any impressions. Occasionally, these casual passersby will play a pivotal role in your story.

In all good stories, you need a romantic lead. Of course, that would be Jim. He had so many characteristics that made him perfect for the role. Our backgrounds were similar in some ways and polar opposites in others. We were both from big musical families, but I had lived in one house throughout my entire childhood, Jim had lived in several states and numerous houses—or even under bridges and under trees. Jim was intelligent, musically talented, generous to a fault, highly principled, honest, and had a big heart. Our story took a Nicholas Sparks turn, ending with a flood of tears and sadness. Jim was the character in my story that taught me that love could endure through good times and bad.

Jim’s life, dementia, and his death catapulted my story into a different genre. I had been living a dull, routine life: waking up, going to work, spending my evenings at home doing a few chores, watching some TV, reading my book, sleeping, repeat, repeat, repeat.

I literally walked into a new chapter of my life when Jim and I went to our first Memory Walk on a hot September day in 1998. And there, I met a feisty seventy-some-year-old ball of fire named Helen Hanneford. As we proceeded to walk from Liberty Park to the downtown area, Helen would occasionally blow her hunting horn. We walked into the VFW and a man told her if she would blow her horn, they would take up a collection. She was happy to oblige. I only saw her one other time, but I never forgot her. I opened our local newspaper earlier this month and read a death notice for Helen Hanneford, Slater. She passed away at age 93 on January 30, 2020, at her home. Yes, I would just imagine she still lived at home and occasionally blew that hunting horn. Helen was the character who taught me that volunteering could be joyful.

Being a part of the Alzheimer’s Walk community of volunteers brought another inspiring character into my world, Ted Distler. Ours began as a friendly rivalry—Sedalia Walk VS Jefferson City Walk, but rivalry aside we wholeheartedly supported each other’s fundraisers and walks. Ted was one of those guys who always had a joke, a hearty laugh, and hugs for his friends. Ted was in survival mode as he cared for the love of his life who had Alzheimer’s.

We talked on the phone frequently as we kept abreast of how things were going in our separate lives. Ted and I would occasionally “meet in the middle” for breakfast and conversation. “Have you seen that movie The Notebook?” he asked me one time. I told him I had—another one of those sad Nicholas Sparks’ stories. “I hope it’s that way for Norma and me,” he said. He wanted them to die at the same time, so he wouldn’t have to know life without her. As his story ended, he passed away a short time before his beloved wife. He came close to the Notebook ending he wanted. Ted was the character that taught me to treasure my friends because they leave a gaping hole in our lives once they are gone.

In 2001, I became an advocate on the national level. At my first Alzheimer’s Forum in DC, I met Jane, Kathy, and Sarah. I immediately felt a connection to these three women unlike any friendship I had ever had in my life. Our individual journeys connected into a shared journey. We are truly sisters of the heart. Each year, our secret radar allows us to find each other quickly in the crowd of more than 1,000 advocates—all dressed in purple. It seems that we can pick up our conversations from the previous year almost in mid-sentence. These three characters have taught me that the closest friends can live the farthest away.

Life just wouldn’t be a story without all of the amazing characters who walk in and out of our lives.

Copyright © February 2020 by L.S. Fisher

Tuesday, February 25, 2020

Hearing Voices

To meditate you are supposed to empty your mind and concentrate on breathing. My internal conversation goes something like this: Breathe in…what should I fix for supper? I need to pick up a loaf of bread…breathe out…did I lock my car? I really need to print those forms. I’ve never had any luck emptying my mind. It just doesn’t work for me because my brain never shuts down its internal conversation.

Our internal voices are where we find the motivation to become a voice, or an advocate. The motivation to be an advocate for a cause you believe in comes from the inside out. Seeing the devastation dementia had on Jim was motivation enough for me.

My first introduction to advocacy was at the Alzheimer’s forum in 2001. Those first few years, we had to educate our legislators about the devastation of Alzheimer’s and related dementia. Eventually, everyone knew about Alzheimer’s, either from us or from personal experience. Over the years, we advocates have become better trained and well organized under the guidance of the Alzheimer’s Impact Movement (AIM).

This year I’ll be making my twentieth trip to DC to visit with my senators and my representative, Congresswoman Vicky Hartzler. In preparation for the DC trip, Jessica Snell, Jerry Dowell, and I met with her field representative Rachel Gilroy and District Director Austin Kramer.

We discussed AIM’s federal priorities:

1)      An Additional $354 Million for Alzheimer’s Research. We are still playing catch up with Alzheimer’s research funding at NIH after being woefully underfunded for more than a decade. Our only hope of staving off a devastating blow to Medicare and Medicaid is to find effective treatment or a cure. On a personal level, I don’t want anyone to go through the heartbreak of dementia.
2)      An Additional $20 Million for the BOLD Infrastructure Act. The BOLD Act uses the traditional tools and techniques of public health to fight Alzheimer’s on a local level. Alzheimer’s Centers of Excellence will be established across the country. Local health departments can implement interventions to help with early diagnosis, promoting healthy lifestyles to reduce risk, and data collection. The Act also strengthens the role of the CDC as they lead public health efforts and provide funding on the state level.
3)      Younger-Onset Alzheimer’s Disease Act (S.901/H.R.1903). Persons with younger-onset dementia do not have access to the same support and services as Americans aged 60 and older. Jim was only 49, so we were turned down when we asked for help through the Division of Aging. The Older Americans Act (OAA) reauthorization includes giving access to these services to persons with dementia regardless of age, extends the RAISE Family Caregivers Act from three to four years, and includes elements of the Supporting America’s Families and Caregivers Act. These successes are largely because of the thousands of dedicated Alzheimer’s Advocates who don purple sashes and visit Capitol Hill annually. As Congresswoman Hartzler’s ambassador, I was pleased that she was one of the co-sponsors.
4)      Improving HOPE for Alzheimer’s Act (S.880/H.R.1873). In 2017, the Centers for Medicare and Medicaid Services allowed clinicians to be reimbursed for providing care planning for cognitively impaired individuals. As most of us who have had a loved one with dementia know, care planning is a vital part of improving quality of life. However, few people knew about care planning for dementia and the service was not widely used. The Improving HOPE Act would require Health and Human Services to educate clinicians on the service and report the barriers keeping individuals from using care planning. Our role as advocates will be to seek co-sponsors.

Do you want to be a voice for Alzheimer’s? You don’t have to go to Capitol Hill to have your voice heard. One of the ways you can lend support is to join the Alzheimer’s Impact Movement at ($20). You will receive updates and the online tools will make advocacy easy.

During the AIM Forum, we use an app to keep you updated on the message we are taking to our legislators. You can pick up your phone, text, use Facebook or Twitter to add your voice to ours. If enough people whisper the same message, it is much more effective than when one person shouts.

Copyright © February 2020 by L.S. Fisher


Wednesday, February 12, 2020

From the Ashes

Recently, I’ve been thinking about how our lowest moments give us the opportunity to rise from the ashes. We can emerge as something new from something that has been destroyed.

I helped celebrate the first service at our new church building. The historic church was destroyed by fire in 2016. Unable to rebuild in the same location, a new site was chosen for a new “traditional” church. Through faith and hope, a beautiful structure metaphorically rose from the ashes.

I can’t think of anyone who hasn’t felt his or her world is in a shambles from time to time. When someone receives a terminal diagnosis, they feel the burden of ashes. It takes determination and optimism to rise above the ashes and continue living. I have seen amazing people who have received a diagnosis of Alzheimer’s and immediately kicked into action to advocate for research dollars. Often, these advocates are aware that should a treatment be discovered, it would be too late for them.

Chronic disease creates a heap of ashes. Dealing with pain every day, wears a person down. Arthritis can make every joint in your body ache, and make movement a challenge. Especially, when a disease has no cure, and you know your health is only going to worsen and never get better. It is hard to see a loved one suffer, and it can foster a feeling of hopelessness and helplessness, if you let it.

Life can change in a heartbeat. Couples marry. Babies are born. We can feel so blessed at times, and at other times wonder where it all went wrong. Life is full of surprises, and a rollercoaster of separations and reunions.

When death separates us from those we love desperately, it takes fortitude to overcome the sorrow. There is no time limit on grief.

The trick is to build on the ashes instead of being buried beneath them. It’s a lot of hard work to wallow in self-pity and sorrow. Life is certainly more enjoyable when we concentrate on the good times and not the sad times.

When I think about ashes, I think about campfires. That makes me think about Colorado and the Rocky Mountains. I think about early morning coffee, breakfast cooked on the camp stove, hiking, and animal watching. The memories are like a thousand wings lifting my spirits on the dreariest and saddest days.

As long as I walk this earth, I hope to rise from the ashes of loss by appreciating what I still have. Life will be what I make of it, not what it makes of me.

Copyright © February 2020 by L.S. Fisher