Presentations

Sunday, April 16, 2017

Memories of Lilacs and April

The lilacs are in bloom and every time I walk out onto the deck, I smell them. Lilacs and April are two reminders of Jim. He left this world on April 18, 2005.

The lilacs reminded me of a story Aunt Nita shared at Jim’s services:

“I remember a time a few years ago when Jim and I were sitting in the swing. It was in early spring; we had been talking, but not a lot. Jim got up and said, ‘Aunt Nita, do you smell that?’ He walked over to a big lilac bush and picked a handful. He brought them back to me and said, ‘Smell this, Aunt Nita. Don’t they smell good?’ Remembering Jim, I always do, for I know he is one of God’s chosen few.”

When we were planning Jim’s services, I took a yellow pad up to Virginia’s house and asked everyone to tell me stories about Jim. I wrote the stories down, and I was still typing them when Gary Richardson came to our house to go over the memorial service. 

Gary pushed the paper back to me and said, “Tell me these stories.” I told Gary the stories, and he said, “Those are wonderful stories, but if I read them, they are just stories. You lived those stories, and if you tell them, they will come alive.” 

Jim, Easter, circa 1999
Rob and Eric both agreed and said that I should tell the stories. My first thought was that I couldn’t do it, but after more thought and encouragement, I decided I could do it. That is if everyone put on his or her “happy” face.

Some of my favorite memories of Jim involved travel and music. Here are a few of the stories I shared:

Jim’s favorite place to vacation was Estes Park, Colorado, and the Rocky Mountain National Forest. We went to Colorado fourteen consecutive years. Jim was happiest when waking up on a cold Colorado morning, making a pot of coffee on the camp stove and cooking breakfast. I loved the cold mountain mornings too, but not quite as much as Jim did. I would snuggle beneath the covers in our bed in the van. Jim would bring me a cup of coffee in bed and sing the sleepy head song to me…

Music was important to the entire Fisher family. Jim was talented and could play the guitar, fiddle, banjo, mandolin—anything with strings. He enjoyed playing music with his dad, uncles, brothers (Bob and Billy) and a good friend, John Cook.

Sometimes music could get the Fishers in trouble and could almost cause fights. One time when Jim was playing his guitar, and Uncle Jewel was playing the fiddle, Billy sneaked up behind Uncle Jewel and goosed him. Uncle Jewel jumped, hit Jim in the head with the fiddle bow, knocked Jim to his knees, and gashed his head open. Uncle Jewel got mad, Jim had a dazed look on his face, and for some reason, Billy, who caused the ruckus, was the only one who thought it was hilarious.

Jim liked to hear Mom and me sing “I’ve Got a Mansion Just Over the Hilltops.” The words describe wanting a mansion, a harp, and a crown.” Jim wasn’t the kind of person who would want a mansion, or a crown, but he would want that harp, because it has strings.

I can just hear Jim playing “Buckaroo” on the harp. I bet Heaven never heard anything else quite like it.

Copyright © April 2017 by L.S. Fisher


Monday, April 10, 2017

Learn As You Go

Linda and Ted, Caregivers
At line dancing class recently, we danced to the song, “Life Is a Dance.” As I listened to the words, “learn as you go,” I was reminded of my years as a caregiver. During the decade of Jim’s journey, I truly learned as I went along.

I certainly wasn’t a professional caregiver, nor did I ever believe I would ever be a caregiver for my husband. His Alzheimer’s type of dementia was a progressive disease where the caregiving became incrementally more difficult.

Becoming a competent caregiver involved a lot of baby steps. I learned the basics, sought out more refined information, and eventually I became creative. One thing  I learned early on was that a solution that worked one day, might not work the next day.

The physical part of caregiving—feeding, bathing, providing personal care—can be difficult, but it was the grief and emotional despair that I found the most difficult. The biggest struggle wasn’t how to coax Jim into a bathtub; it was the heartache of remembering a time when it was “you wash my back and I’ll wash yours.”

Often it’s the small losses that are hardest to accept. I expected to grieve big losses, but chided myself mentally for missing the companionable quiet moments. One of the things I missed the most was having coffee and conversation with Jim.

We caregivers learn as we go—learn how to handle behaviors. One of the challenges for caregivers is how to handle the baffling behavior brought on by a dying brain.

A three-step approach can be used to address behavior problems:

1.      Identify and examine the behavior. Is the behavior harmful to your loved one or others? If the answer is no, consider ignoring it. Your two most helpful tools are redirect and distract. To avoid behavior problems, think about what happened before the behavior and what happened immediately after. Could something have been done differently to avoid the problem? For example, if your loved one removed all his clothing, was he too warm? Was he wet? Was his clothing uncomfortable? Become a detective!
2.      Explore potential solutions. Was your loved one’s needs being met? Could surroundings be changed to make your loved one more comfortable? How could you have changed your reaction?
3.      Try different responses. Try to respond in a calm, supportive way. Your tone of voice and body language are more important than your words. Avoid treating your loved one like a child. Be respectful. If what you are trying doesn’t work, try something different.

When dealing with behavior, remain calm, patient, and flexible. You will have better luck if you respond to the emotion and not the behavior. Don’t argue with a person who has dementia. That is an argument you won’t win! Sometimes the cause of behavior is something as simple as a side effect of medication, or an illness. Jim became combative when a new physician gave him an antipsychotic drug. He reverted to his normal demeanor once the medication was stopped.

Caregivers learn as they go. Being a caregiver is one of life’s biggest challenges, but your reward is the knowledge that you have done everything possible to improve your loved one’s quality of life.

Copyright © April 2017 by L.S. Fisher

Saturday, April 1, 2017

Taking AIM at Alzheimer's

Linda Fisher and Congresswoman Hartzler
What is it that brings me back to Washington, D.C., year after year? It’s not the cherry blossoms. It’s not the Smithsonian or the monuments. It’s not the food, although after a meal with my besties—Jane, Kathy, and Sarah—at the historic Old Ebbitt Grill, I created a hashtag: #eatingourwayacrossDC.

The reason I come to D.C. every year is to join with like-minded advocates who are good and tired of the heartbreak of Alzheimer’s. We think it’s darned time to find a cure.

Each year we are joined by an influx of first-timers. The Alzheimer’s Association and those of us with the multiple stars on our badges do everything we can to make sure they are prepared for the Hill. Once they have the information and the “collateral” they put on their comfortable walking shoes and head to the Hill where many voices will share the same message.

I believe 1,300 purple sashes make quite a statement on Capitol Hill. As I went from appointment to appointment on Hill Day, we were the most visible group around.

Advocates from across the U.S. visited the offices of their senators and representative. The 23-member Missouri advocates first appointment of the day was a coffee at Senator Roy
Blunt’s office. We boarded the first bus leaving the hotel and arrived at the Hill in time for the 9:00 appointment. That is, it would have been time enough except for the long line of people trying to get through security. As we stood in a non-moving line, we were directed to a different door so that we arrived in the nick of time. After a photo with the Senator, we visited with his health aide, Desiree Mowry.

Desiree Mowry and Betty Johnson
After our visit with Senator Blunt, we split up. Some had house appointments and had to travel to the house side of the Capitol. Others of us, the “A” group (we referred to ourselves as the A-Team) moved to the Hart building where we would meet with Emma Kenyon, Senator Claire McCaskill’s legislative aide. After that visit, several of our group headed home, but I had an appointment with Congresswoman Vicky Hartzler in the afternoon.

Our “ask” this year was two-fold. First, we asked for a $414 million increase for Alzheimer’s research. This is the amount that scientists at the NIH submitted as a “Bypass Budget” proposal. Based on the Alzheimer’s Accountability Act passed in 2015, this is the amount to keep us on track to prevent or develop an effective treatment by 2025.

The second ask was for co-sponsors for PCHETA (Palliative Care and Hospice Education and Training Act). PCHETA (SB 693, HB 1676) is so important that more than 40 groups are working toward passage. Nursing home residents who receive palliative care at the end of life are 15 times less likely to die in a hospital. Palliative care reduces emergency room visits and hospitalization. This Act would (a) increase the palliative care and hospice workforce by establishing training programs, (b) launch a national campaign to inform patients, families, and health care professionals about availability of services, (3) enhance palliative care research.

Add your voice to our voices. Email, write, call your senator and representative to support research funding and PCHETA.

For $20, you can join the Alzheimer’s Association’s sister organization AIM (Alzheimer’s Impact Movement) $20. AIM (a) advocates for legislation to advance research and enhance care and support for those affected by Alzheimer’s, (2) supports the re-election of our Congressional champions, and (3) speaks on behalf of the Alzheimer’s community when 501(c)(3) organizations like the Alzheimer’s Association must remain silent. Join AIM at the link below using my referral code.

Just a few minutes of your time can make a lifetime of difference for three of your fellow Americans who developed Alzheimer’s in the time it took you to read this article.

Copyright © April 2017 by L.S. Fisher


Saturday, March 25, 2017

Headed to DC

This year marks my 17th trip to D.C. to join my voice with fellow advocates at the Alzheimer's Advocacy Forum.

Essential preparations for this annual journey began on Wednesday with laundry. It seemed that most of the clothing I planned to wear was in need of laundering. Thursday, the packing began and I felt pretty good when I went to bed at midnight. My suitcase was full. Friday morning was going to be easy-peasy. All I had to do was made a few final preparations, grab my bags, and head to the airport to spend the night at a hotel.

The first problem was I shut off my alarm and overslept. I took the dog out and then it was time to sign in to get my boarding pass. My sign in wouldn't work. I decided to ask for a new password and my security questions weren't correct. What? I was giving the only answers. After much agonizing, I realized I was entering an incorrect password and once I corrected  my error, I was in.

The few preparations turned into hours. I took my PC downstairs to hook into my color printer and it wouldn't work. I couldn't figure it out, so Harold came down and after a few manipulations, declared that I didn't have it plugged in correctly.

I hate it when that happens.

Back upstairs, I prepared to leave--about four hours after my target time.

"Just sit down and relax a minute before you leave," Harold said. "Otherwise, you'll forget something important."

"I'll go over my checklist, I said.

The checklist looked good. Then Harold started asking about this and that...he thinks of everything. Of course, he's the planner; I'm the seat-of-the-pants person. Eventually, he managed to think of something I'd forgotten.

"What would you do without me?" he asked.

"Go off half cocked all the time," I admitted.

By the time I headed out the door, it was raining, and the car clock told me that my timing was perfect to hit Kansas City right at rush hour on a Friday night. Oh brother.

By the time I reached I-70, rain was pouring and the traffic was pretty well bumper to bumper.  At one time, I looked in my rearview mirror to see a semi tailgating me. My windshield began to fog, and my wipers were working their butts off to keep the rain from interfering with my vision.

I called Harold for a weather report. "You should be running out of the rain by the time you reach Kansas City," he said.

The radio was on a country music station and I found the music to be soothing. I turned up the radio and karaoked to my heart's content. Once again, meteorologist Harold was correct. When I reached the city, the rain cleared just in time for a weird traffic jam on I-435.

Finally, I reached the hotel and everything was better. I checked into a beautiful room and although Harold had told me of all the fabulous eating places nearby, I ate at the hotel. I was famished and the turkey club with "house" made chips tasted wonderful.

After giving myself a mani-pedi, I decided to make a cup of tea. First problem, no cups. I called housekeeping and that problem was solved.

I was darned ready for a good night's sleep. After all the next day was going to be a long one.

After sleeping soundly for a few hours, I woke up at 4:30 and couldn't go back to sleep. I decided to make a cup of coffee and relax for a while until time to catch my flight. I poured water into the coffeemaker, put Coffee-mate in the cup and turned it on. The pot stopped gurgling, but when I checked, all I had was hot Coffee-mate water. I had neglected to put in the coffee. Second time, I did everything right except I forgot to turn on the pot. Finally, I sat down with a cup of coffee and decided I would get ready and head to the airport.

After such a rocky start, the rest of the trip would have to be smooth skies. By mid-afternoon, I'd be in D.C. and have a few days to see the sites and spend with my friends. So, I grabbed my purple suitcase and set off for another round of fighting to end Alzheimer's.

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