Presentations

Wednesday, March 22, 2017

A Fleeting Shadow

At a funeral recently, the pastor referenced a book of Psalms that referred to life as a “breath” and our days as a “fleeting shadow.” Sunday morning, I had planned to use these thoughts as inspiration for a blog post.

Before I had a chance to write my thoughts, I received the shocking news that my 46-year-old nephew had died. I pushed all thoughts of writing aside and went to be with my mom who was devastated by the news. My heart ached for his parents who were going through the loss of a child for the second time. They had lost their daughter a scant five years earlier.

We had a discussion, my brother and I, about the long, slow process of dying versus sudden death. With one, you have time to say your goodbyes and with the other, you just hope and pray that you parted on good terms. One slowly breaks your heart, and the other is a shock to your heart.

Between PTSD and clinical depression, Jim was plagued with suicidal thoughts. It was a constant worry for me, and it was many years before I realized it wasn’t my fault. It was hard to admit there wasn’t really anything I could do to change it. I encouraged him to see a psychologist and to take the medicines that helped him function.

My sister made an observation. She said if someone dies from a heart attack, you don’t blame them. If someone has something wrong inside their brain—thoughts they can’t shut off, psychological problems, chemical imbalances—then maybe their death is no more a choice than having a heart attack.

We don’t often choose how we die; it chooses us. When Jim died after ten years of dementia, I learned what the “long goodbye” meant. Although, death was a given, it didn’t mean it was well taken. It didn’t matter that I should have been ready when Jim died—I wasn’t ready to let him go. The emotion that surprised me most was anger. When the breath was gone and his days passed like a fleeting shadow, I was furious that he had to spend the last ten years of his life fading away.  

We all talk about closure, but I have to agree with my brother that closure doesn’t exist. That isn’t quite the word because some deaths just leave a big empty spot that can’t be refilled. We just keep moving and hope the pain of loss will fade to a manageable level.

Lately, when I walk out the door, I kiss my husband goodbye—every time. “All the time you hear about people being in a car wreck without saying goodbye,” I told him. I call it my “insurance.”

More than insurance, it’s a reminder that life can be snatched away in a heartbeat. We need to make those calls, write those notes, visit our loved ones, forgive, go on vacation, have fun, and make the most of each day.

We should be thankful for the time we have to love, dream, and live. Life is so precious. Each sunrise we have another chance, another day, to right a wrong, lend a helping hand, or to make a difference in some small way. A breath. A fleeting shadow. That’s all any of us have.

Copyright © March 2017 by L.S. Fisher

Monday, March 13, 2017

Lewy Body Dementia

“My mom has dementia,” the woman said. “How is that different from Alzheimer’s?”

“I think of dementia as an umbrella,” I said. “Beneath the umbrella of dementia are several diseases. Alzheimer’s is the most common kind of dementia.”

In the 2017 Alzheimer’s Disease Facts and Figures, the Alzheimer’s Association lists several diseases that cause dementia and associated characteristics. They are Alzheimer’s, vascular dementia, dementia with Lewy bodies, mixed dementia (more than one cause—the most common is Alzheimer’s and vascular dementia), frontotemporal dementia, Parkinson’s disease, Creutzfeldt-Jakob disease (rare, can be genetic or caused by consuming products from cattle with mad cow disease), and normal pressure hydrocephalus.

The Alzheimer’s Association does not list the rare disease Jim had. His diagnosis was early onset Alzheimer’s disease, but his autopsy revealed the disease he actually had was corticobasal ganglionic degeneration, a disease I had never heard of. The report also mentions “incidental Lewy body,” severe frontotemporal atrophy, tau positive glial inclusions in the white matter, but no evidence of Alzheimer’s disease.

It is easy to understand with overlapping symptoms why diagnosis is so difficult. While searching for an answer to the “why” of Jim’s dementia, we received several conflicting theories, including Parkinson’s and Pick’s disease, before finally settling on Alzheimer’s.

Of course, the mention of Lewy body in Jim’s autopsy, incidental aside, had me researching Lewy Body Dementia (LBD). This disease affects around a million people in the United States.

There is no single test to diagnose LBD, and in the early stages, it may be confused with Alzheimer’s, Parkinson’s, or a mental disorder. Diagnosis is made through examination, laboratory tests, brain imaging, and testing memory and cognition.

Through my volunteer work with the Alzheimer’s Association, I’ve met fellow advocates diagnosed with LBD. I remember one man telling me that his hallucinations were disruptive and disturbing. Unfortunately, people with hallucinations or other behavior problems may be treated with anti-psychotic drugs. Haloperidol (Haldol®), olanzapine (Zyprexa®), and resperidone (Risperdal®) should be avoided because of dangerous side effects, including an increased risk of death.

Lewy bodies attack several different regions of the brain, which causes a variety of problems for the person with the disease. Short-term memory, perception difficulties, processing information, and language issues can be confused with Alzheimer’s. Movement disorders are similar to Parkinson’s with tremor and muscle stiffness. The distinction between LBD and Parkinson’s dementia is based on the timing of dementia. In LBD, dementia will quickly follow parkinsonism within a year, but people can have Parkinson’s and not develop dementia for many years.

People with LBD often have sleep disorders. The vivid dreams associated with REM disorder may cause a variety of symptoms ranging from talking while sleeping to punching a bed partner. A person with LBD may be tired all the time due to insomnia or restless leg syndrome. They may sleep excessively during the daytime.

LBD is managed in much the same way as Alzheimer’s disease. In addition to physical, speech, and occupational therapy, the Alzheimer’s drug Exelon® may be used. Other drugs may be used to help with movement, sleep disorders, and behavioral problems. The surgical procedure used to relieve the movement symptoms of Parkinson’s is not used when a person has LBD because it may adversely affect cognition.   

LBD causes a variety of behavior and mood changes running the gamut from depression and apathy to agitation, delusions, and paranoia. Managing the health care of a loved one with LBD can be quite challenging for a care partner. If you are caring for a person with LBD, it is important to enlist help from family and friends.

Taking care of yourself and taking breaks will make you a better caregiver. Do not neglect your own health! When dealing with a progressive, degenerative disease, it is crucial that you find moments of joy. Continue to enjoy activities with your loved one as much as you can for as long as you can. Convert challenges into opportunities to use your creativity to live life to the fullest.

Copyright © March 2017 by L.S. Fisher

For an informative publication about Lewy Body Dementia:  https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/introduction


Sunday, March 5, 2017

March Madness

With Donna Hirner-Gardner at Legislative Conference
March marched onto my calendar with the purpose of seeing how sane I could remain in an insane world. The month began with a series of meetings. By Friday I was a little bedraggled and had driven to Jefferson City for the Business Women of Missouri legislative conference.

I arrived a little early and hiked from the parking garage to the capitol building to drop off an Alzheimer’s packet. Oops, I should have known everyone would leave early on a Friday, so that didn’t happen. I hiked back to my car and drove to the hotel by a circuitous route since I was coming in from another direction.

After I checked in and carried all my various bags to my room, I decided to relax with a cup of hot tea. I made the tea and opened one of those little packets with a napkin, creamer, sweetener and stir stick to get some sugar for the tea. The cup fell and the hot tea splattered all over me, but most of the tea spilled onto the floor.

I looked at the little napkin. That was not going to work. I dialed “O” and asked if they had anything I could use to clean up the tea. “Just use a towel,” he said, “and we’ll send you us a clean one.”

Relaxation? Who needs that? I spent my relaxing time cleaning up the mess. By the time I finished, it was time for my committee meeting.

Here it is the fifth of March and I’ve finally had a moment to sit down and fill out my wall calendar for the month.

Everything is on my phone, so my husband thinks this is an exercise in futility, but I like to be able to glance at the calendar and see what’s ahead instead of waiting for a “ding” that tells me I need to be somewhere else at the same exact time I hear it.

With the two-day legislative conference behind me, I filled out the remainder of the month. All I have to say is it is madness indeed. I have exactly four days in the entire month that doesn’t have one or more events or appointments. Madness! Or at least, what was I thinking?

I have several Alzheimer’s events lined up. Monday is my Alzheimer’s district meeting with Congresswoman Hartzler’s staff. Tuesday is the Alzheimer’s walk kick-off. I have two Alzheimer’s conference calls this week: Ambassador and combined work group. Later in the month is a day for corporate sponsors, but the biggie is at the end of the month when I’ll be going to the Alzheimer’s Advocacy Forum in D.C.

To see all the activities on the calendar is a reminder that when I do have free time I need to be editing, organizing my electronic files, paying bills, catching up on my to-do list, fulfilling promises…and all the other things that don’t make the calendar or the to-do list.

A lot of the events on my mad, mad, mad calendar are fun, and the ones that are business are spent with people whose company I enjoy. Often, I spend as much time laughing as working.

With March comes the promise of springtime—flowers, birds, bees, plants, greener grass. Oh, yes, grass. Mowing? I’ll think about that when the time comes.

Oh, come on. I know I’ll have time to read a book, pet the dog, and maybe take a nap from time to time. I’m going to guard those four free-and-clear days as if they were made of solid gold, because, actually, they are!

March may be madness, but April will be here before I know it. I just peeked at April’s calendar, and optimism aside, April is a popular conference month...

Copyright © March 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Tuesday, February 28, 2017

Blowin' in the Wind

As usual, I was running late for an appointment this morning. As I turned onto the highway, I noticed my Sedalia Democrat had been delivered to my paper box. Deciding I could be on time if I didn’t waste the couple of minutes to pick up the paper, I left it.

After my appointment, I made my usual stop at Walmart. As I pushed my cart into the parking lot, I had to battle the wind to keep the cart going forward instead of sideways. Talk about a strong wind. The wind buffeted my car on the way home, and I parked at the end of the driveway to get my paper and mail. The paper was gone. I looked around and found it lying in the ditch.

After I retrieved the paper, I grabbed a stack of mail out of the mailbox. The wind ripped a few pieces out of my hands and whimsically scattered them into the aforementioned ditch. Have you ever chased paper that a gust of wind takes out of your reach time after time?

The Bob Dylan song “Blowin’ in the Wind” came to mind. Bits and pieces of the lyrics teased my memory. I remembered unanswered questions about manhood, white doves, cannon balls, mountains washing to the sea, and pretending not to notice freedom lost.

The most haunting line in Dylan’s song is about too many people dying. Every year 700,000 people die from Alzheimer’s, and so far we haven’t been about to do one thing to stop it. Not one single thing!

Alzheimer’s disease is the sixth leading cause of death in the United States. Approximately 5.4 million people are living, and dying, with the disease. Around 200,000 people younger than age 65 have Alzheimer’s. Many are much, much younger.

Each year I join other advocates nationally to advocate for more research funds. In our packets, we have information that compares research funds for Alzheimers compared to the amount allocated to fight other diseases. This dedication to fighting diseases has paid big dividends. At one time, a diagnosis of HIV/AIDS was a death sentence. Research has played a huge role in finding effective treatments for cancer and heart disease.

Lately, two promising drug therapies failed during drug trials. When these treatments failed, we were disappointed, but we haven’t given up!

Some of the brightest minds are working diligently to cure this incurable disease. In the meantime, it is important that caregivers and persons with dementia have the care and support they need to live life to the fullest. Those on the front lines need respite, home and community based support, family support, and a reason to hope. They need to know that we have their backs.

I was at the Missouri State Capitol on Memory Day advocating for respite funds. The Missouri state budget has been slashed, including a big reduction in the $450,000 service grants that our friends, neighbors, and families rely on for respite. This is a case of saving pennies and costing dollars. Respite helps keep persons with Alzheimer’s at home longer. A simple formula shows a possible cost savings of $2 million for the state. Here’s how it works:  800 respite families X $157 average NH Medicaid cost per day X 30 days delay in NH placement X 60% of NH residents on Medicaid = $2 million savings in Medicaid NH costs.

I’m going to D.C. at the end of March to visit Senator McCaskill, Senator Blunt and Congresswoman Hartzler. Although, I take the fight to Capitol Hill, each of us has the power to make a difference without leaving the comfort of home. Call, write, or email your legislators, especially when legislation is pending or advocates are visiting.

Become a voice. Answer the calls to action. By keeping up-to-date on Alzheimer’s legislation, you can learn how to be an effective advocate.

It may seem that the answer to a cure is blowing in the wind, but if we chase it hard enough, we will eventually find it.

Copyright © February 2017 by L.S. Fisher

Friday, February 17, 2017

Alzheimer’s Caregiving: A Voice of Experience

At the end of January, my friend, and mentor, Penny Braun passed away. Penny was my first contact with the Alzheimer’s Association. When Jim first developed dementia symptoms, I called the Mid-Missouri Chapter, located in Columbia. The executive director, Penny, answered the phone.

“I don’t know if I should be calling you because my husband has memory problems but has not been diagnosed with Alzheimer’s,” I said.

“You called the right place,” Penny assured me. “We have information that will help you, and you can call us anytime.” And I did.

Penny brought her beloved German shepherd, Victoria, with her when she came to the 1998 Sedalia Memory Walk. Penny wasn’t in any of the photos because she took them, but Victoria posed with the small group that walked that day.

In 2001, Penny asked asked me to go to the Alzheimer’s forum.

“We’re going to ask for a billion dollars,” she told me. “Maureen Reagan set that goal when she was on the national Alzheimer’s board.”

“I can do that,” I said with much more confidence than I felt. I had no concept of what a billion dollars looked like. Of course, the research funding was only a small fraction of that billion dollar goal.

Pennyand I shared a room on my first trip to Washington, D.C. We arrived late and when we tried to check in, the clerk clicked the keyboard on the computer, frowned and clicked some more.

“I don’t have a reservation for you,” he said, “and we’re booked solid.”

“We do have a reservation,” Penny said firmly, “I have the paperwork here.” Penny dug in her purse for the reservation. When she couldn’t find it, she turned on 
the charm. “We’re exhausted, and surely you can find one room we can have. Please, check with your manager and see if you can find a room for this old lady.”

When he left to check, she turned to me and said, “They always save one room in case the president or some important person needs a room. Oh, here it is!” She jubilantly pulled out the reservation, gave it a glance, and stuffed it back into her purse. “It begins tomorrow night,” she said in a stage whisper. About that time, the clerk returned all smiles, and handed us the keys to a beautiful suite. Mission accomplished.

After Penny retired from the Alzheimer’s Association to care for her husband, I saw her only occasionally. She was at the Alzheimer’s roast last spring. She, of course, gave me a big hug and asked how I was doing. “Have you read my book?” she asked.

When I admitted I hadn’t, she pulled a copy out of her purse and handed it to me. Alzheimer’s Caregiving: A Voice of Experience.
Penny knew the heartbreak of Alzheimer’s because her mother had the disease. Her family connection compelled her to open the office in Columbia, first as a volunteer. She later became the chapter’s first executive director.

Penny’s book has several examples of situations and solutions to problems that “might work.” She was smart enough to know that the same solutions don’t work for every person, nor do the same solutions always work for the same person.

I had to smile when I got to the “Three Right Answers.” She wrote, “As the disease progresses, three answers to problems seem inevitably right. The first two are music and ice cream.” The final right answer is the smile. “Use it warmly and often.”

Rest in peace, my friend. You left a legacy of hugs, smiles, and a caring heart.

Copyright © February 2017 by L.S. Fisher
http://earlyonset.blogspot.com

Monday, February 13, 2017

Seven Types of Love

When February 14 rolls around, hearts and minds everywhere focus on love. Some look forward to the day with unbridled anticipation, while others feel only trepidation. During our lifetimes, most of us will experience both feelings depending on how life is going at that moment.

Love can be enduring, or elusive. It can be the center of our dreams, or the crux of our nightmares. Love can bring us to the mountaintop or plunge us into the deepest, darkest valley.

Valentine’s Day celebrates all kinds of love. According to the ancient Greeks, there are seven different types of love. I’m not sure that all the emotions we humans call “love” can really be narrowed down to seven categories, but I suppose it’s a start.

1.      Eros, or erotic love, represents the physical body. This type of love has all the passion and desire to fuel a romance. It is because of Eros love that Cupid wears a blindfold.
2.      Philia, or affectionate love, is the love we feel for our friends who have our backs through the bad times in our lives. These trusted friends provide the chocolate cake when our romantic love hits rock bottom.
3.      Storge is familial love. Storge is the type of love we feel for our parents and children. It can also be the fondness we have toward childhood friends where the relationship is built on familiarity and acceptance.  
4.      The playful love of ludus is found during the early stages of falling in love. That’s when just seeing the interest of our affections can set our hearts all aflutter. Ludus can also describe the relationship of friends who enjoy hanging out with each other.
5.      Pragma is enduring or practical love. This kind of love is found in married couples who have made the effort to maintain their relationship through compromise, patience, and tolerance. It can also be found in couples who stay together for political, social, or other practical reasons.
6.      Philautia is self-love. In this sense, it is a good thing! In order to truly love someone else, it is necessary to first love yourself. Philautia is unhealthy when a person places himself before others.
7.      Agape is the purest love. It is selfless love free of expectations that accepts and forgives. Agape is unconditional love.

We all understand that in a romantic relationship, we give our hearts, and we expect that love to be reciprocated. Since Cupid is blindfolded, sometimes love is blind. We focus only on the good qualities and overlook the irritating ones. Whether we survive the good, bad, and ugly that makes up every human being on earth depends on how much effort we put into keeping the love alive.

When we look at the different kinds of love, it is easy to see that agape, or unconditional love, is the type of love that caregivers have for their loved ones with dementia. When Jim developed dementia, my love for him became multidimensional and included both pragma and storge.  I often likened my love for Jim to that of a mother for her child. More importantly, I don’t believe that the love of a caregiver fits neatly into some Greek or psychologist’s category.

Each of us is a unique individual with an individual capacity for love. Not even a scientist can accurately measure the love one person has for another.

A lot of hearts given on Valentine’s Day are not worth the paper they are printed on. The real value of a Valentine’s heart is determined by how we treat the ones we love the other 364 days of the year and throughout the years of a lifetime.



Resources:
https://lonerwolf.com/different-types-of-love/
https://www.psychologytoday.com/blog/hide-and-seek/201606/the-7-types-love

Copyright © February 2017 by L.S. Fisher

Saturday, February 4, 2017

You Know What I Hate?

It seems that people are getting bolder and nastier in their communications. I’m not much of a hater, but when I thought about it, there were a few things at the top of my list.

I hate consecutive months with dates that fall on the same day of the week. This has caused me grief in the past and came close to causing me grief this week. Let me explain. My hairdresser called me at work one day wondering why I hadn’t shown up for my appointment. “I don’t have it on my calendar,” I said. Flipped the calendar and sure enough there it was—same day of the week, same date, different month. This week, I’ve been planning to go to a conference Friday and Saturday. It was on the wall calendar for February 3-4, but while setting up a conference call for next month, I saw the conference on my electronic calendar for March 3-4. Holy moly, sure glad I didn’t drive to Jefferson City an entire month early.

I hate the paint MO-Dot uses on the roads. It doesn’t take long for the lines to fade away and I don’t have confidence that I’m inside my lane. This is especially dicey driving through town in the rain with streetlights and car lights glaring off the pavement. The older I get, the harder it is to see the lines. I want glow in the dark paint on our highways like the Netherlands has. Is that too much to ask?

I hate tax time. It isn’t even so much paying the taxes as it is gathering all the papers together, bringing everything up to date in Quicken, and then putting the info on TurboTax. Everything is complicated, and it makes my head hurt. I’d so much rather be doing something else. Much, much rather, be doing just about anything else.

I hate junk mail and junk email. Try as I might, I can’t get rid of those two. I unsubscribe, report as spam, block, grit my teeth, and swear. Nothing helps. Right up there with junk email is email that requires me to complete a task when I’d rather be relaxing. It’s easy to be sucked into a project that’s taking much more of my time than is warranted.

I hate debilitating disease especially Alzheimer’s. And Cancer. And heart disease. And diabetes. And anything that makes a person suffer. I hate to watch someone dying. I wish we could live long, healthy lives, and when it was our time, we’d leap on that chariot of fire and ascend into heaven in a blaze of glory.

I hate homelessness. Every time I go to D.C. for the Alzheimer’s forum, I see dozens of the 11,623 homeless people that live in that city. No one should have to curl up on a park bench or huddle in a doorway on a cold winter’s night. One year, I was sitting in the lobby of a five-star D.C. hotel when this lady walked inside. She was dressed in a long flowing dress, but I noticed she wasn’t wearing a bra.

A hotel worker rushed out from behind the desk and confronted her. “You have to leave or I’ll call the police,”  he told her.

“Please don’t call the police. I don’t have any place to stay and it’s cold outside,” she replied in a soft voice.

“There’s a homeless shelter a couple of blocks from here,” he said. Then, he showed her the door on a cold winter’s night, and she went on her way.

I hate that we are never going to have world peace. It is impossible in a world where power means more than people, and religion means more than faith, and we focus on our differences rather than our commonalities.

I hate Cajun toast. The identical twin look of Cajun and cinnamon seasonings caused me to serve my granddaughter Cajun toast when she was little. To be sure, it had some sugar in it, but it was still nasty. Earlier this week I went to sprinkle cinnamon sugar on my toast and I reached for the Rubbermaid mini container where I keep it. Well, I also keep cinnamon creamer in an identical container, but caught myself. I reached into the cabinet and pulled out another container thinking this was surely the right one. The smell was a clue that my husband used one of the minis for something that smelled suspiciously like Cajun seasoning. Finally, third time was a charm.

Yes, there are a few things I hate in this world, but many, many more that I love.       
   
Copyright © February 2017 by L.S. Fisher

Tuesday, January 31, 2017

Treasure Trove of Memories

Yesterday I dove into the treasure trove of memories stored in the basement of the house that Jim built. One large box had been water damaged from a drippy faucet, and I’d never had the heart to go through the hodgepodge inside that pitiful box until yesterday.

I tossed old Memory Walk memos, agendas, brochures, and various papers from the years I coordinated the Sedalia Walk. I found two warped notebooks and sifted through the memories. One had photos front and back in the notebook’s protective cover sleeve. The photo on the front was ruined, but when I flipped the book over, I saw a perfectly preserved photo from a “Night to Remember Dance.”

My eyes blurred as I looked at a photo of Ted Distler and me dancing. Ted and I were friendly rivals. He coordinated the Jefferson City walk, and we always tried to out-do each other. The rivalry only spurred each of us to do our best. I attended his chicken dinner and auction, and he supported our dance and auction. It seemed there was always a gooseberry pie at both events and the winner was either him or me. Those pies were never cheap!

Another role Ted and I shared was that of caregiver. His lovely wife Norma was the center of his world and, is often the case, the disease took a terrible toll on both of them.

To say that Ted was my friend is an understatement. He was more like family. We would lose touch for a few months, but he’d call me or I would call him. Then, one day I received a call from the Alzheimer’s Association letting me know that Ted had passed away. Norma soon joined him.

Next, I pulled out a box of thank you notes. I opened the box and discovered a stack of photos. The one on top was a smiling Jim wearing a “Colby’s Grandpa” hat and holding our oldest grandson. I leafed through the photos—Jim in Estes Park and at an early Memory Walk.

I carried items upstairs, and when I went back down, I saw a red crate filled with photos that never made it to the photo albums. I opened an envelope and the first photo I saw was Jim playing his guitar. Easter photos taken two decades ago brought an avalanche of memories.

I found memories scattered in places they shouldn’t be. Why had I thrown this batch of pictures in a crate instead of putting them away in photo boxes or albums? My guess is that since most of these were taken around the time that life made a left turn, more pressing matters took priority.

This morning, I began the long organizational process by throwing away the extra envelopes and negatives. Next, I will try to put the envelopes in chronological order. I plan to throw away the out-of-focus photos and pictures of people I don’t know, or care to know, including people on stage in Branson.

Finding the old photos felt like finding a hidden treasure. I saw the innocent faces of children who are now adults with kids of their own. I saw the smiles of beloved family members who are long gone and felt the warm breath of their spirits. The real treasure trove, I realized, was the reminder that I’ve always been a link in a huge circle of love.
   
Copyright © January 2017 by L.S. Fisher