Splish Splash

It was pouring down rain, but my cousin Reta was in town from Texas. The plan was to go to my mom’s house at Versailles, and then Mom, Reta, and I were going to drive to my brother Mitchell’s house for a jam session. My brother Jimmy and my sister-in-law were going too.

Saturday morning I called my mom. “Are we still going?” I asked her. My phone had lit up time-after-time with AccuWeather’s areal flood warnings.

“Yes, Jimmy says we’re still on.”

“Okay, I’m on my way, but if water is across the road, I’m turning around.” I’d always been afraid to drive into water, especially on Sinkhole Road where I’d lived until a few years ago.

Radar showed a swath of rain covering most of the state and the entire area included in my travel plans were a bright red. As I drove in a pouring down rain, I noticed impromptu lakes in fields and ditches that looked like mini-rivers, bank full. My wipers worked overtime to keep the splish-splashing rain off my windshield.

After a grueling drive, I pulled into the parking lot next to my mom’s and turned off the engine. The wipers kept going. How odd. I turned the car on; shut it off. Wipers swished merrily along. How great is that? I couldn’t imagine getting out of my car and leave the wipers running. I called Harold. “Take the key out,” he said. The wipers kept going. I couldn’t get them to turn off. The rain came down harder.

Harold called the car dealership, and they said I’d have to bring it in for them to see what was going on. Great. That would involve driving an hour back home. “Well, I’m going in to visit Mom anyway.” I put on my raincoat and opened the door. The wipers shut off.

I crossed the parking lot and splashed through the water pooled on the sidewalk in front of Mom’s door. “Well, I’m not going anywhere else,” I announced as I removed my coat, thankful I’d worn my waterproof boots. My jeans were drenched. Mom called my brothers, and they were fine with the cancellation.

“I think it was a sign when the wipers wouldn’t shut off,” I said. The constant rain and “severe” flash flood warnings were other signs.

Sometimes, we have to pay attention to clues. Sometimes gut feelings tell you not to do something, and it pays to heed the warning.

I can easily think of several times I had gut instincts about people. When Jim and I were first married, a “salesman” came to our door and wanted to know if my husband was home. “Yes, he is. Do you want me to get him?” I asked through the locked storm door. I turned away as if to get Jim, closed and locked the door. The man practically ran to his vehicle and sped away.

Researchers say that our subconscious minds notice something is slightly out of kilter; dopamine neurons alert us to this. Bottom line, there’s a scientific explanation why we sense danger. Our brains are our early-warning systems.

Jim was an intuitive thinker and believer in gut feelings before he developed dementia. Many of the symptoms related to Alzheimer’s disease may be due to a massive disturbance in dopamine regulation in the brain. One of the jobs of dopamine is to regulate the flow of information to different areas of the brain to aid cognition. Some researchers believe dopamine is responsible for many of the non-cognitive symptoms in neurodegenerative brain diseases, including anxiety, depression, apathy, and mood.

A “sign,” intuition, gut feelings, whatever you want to call it—I take heed. After I’d been at Mom’s for about an hour, a bad storm blew through. Thunder, lightning, and a strong wind, made us all glad that we’d stayed put. Out of control windshield wipers helped keep my trip shorter and had me headed toward home earlier.

After our visit, I returned home in a rain that caused floods, which in turn, were responsible for cars being swept away. I breathed a sigh of relief when I pulled into my garage and shut off the engine. What about the windshield wipers? They stopped immediately, as they had every other time until today.

Copyright © April 2017 by L.S. Fisher

http://earlyonset.blogspot.com

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 Park. 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 “Mansion 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

http://earlyonset.blogspot.com

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 the small losses are the 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

http://earlyonset.blogspot.com

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, (c) 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). AIM (1) 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

http://earlyonset.blogspot.com

*To join AIM: https://www.alzimpact.org/join/join_aim/code/1328a9afa5/method/link