Alzheimer’s: Know the Signs #8—Decreased or Poor Judgment

Excerpt from “Indelible” (memoir in progress):

During the early stages of the disease, Jim was the telemarketer’s best friend. It seemed that he always agreed to anything they suggested. It wasn’t unusual to come home after work and have Jim say. “Someone called about that thing.”

“What thing?”

“You know, that we want.”

“Who called?”

“I have no idea.”

After a few of those conversations, I installed caller ID. I often had to call to cancel TV programs, donations to various charities, tickets to events we couldn’t attend, and occasionally say no to people we knew who really should have known not to make agreements with Jim.

Copyright © November 2016 by L.S. Fisher
http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #7—Misplacing Things and Losing the Ability to Retrace Steps

Excerpt from “Indelible” (memoir in progress):

I went with Jim to see our family doctor about his memory problems.

“Tell me what kind of problems you’re having,” the doctor said.

“I go to the garage and can’t remember why I’ve gone there,” Jim said.

The doctor smiled at him and said, “At least you remember that you’re forgetting. That’s a good sign.”

Jim was having trouble remembering where he put a lot of things. Sometimes he was looking for items that weren’t even kept in the garage.

It wasn’t long before Jim’s language skills began to slip away. “Right here, but I can’t find it!” he would say to me in a frustrated tone.

“What are you looking for?” I would ask.

“Right here!” If I was lucky, he’d point at his bare feet, and I’d know he was looking for his shoes, or his head and I’d know it was his cap. Too often, he’d just wave his arms, and I would help him look although I had no idea what object he was trying to find.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #6—New Problems with Words in Speaking or Writing

Excerpt from “Indelible” (memoir in progress):

Jim began to have difficulty writing. He would write letters but they wouldn’t make up words. Most of the time, the combination was close enough that I knew what he meant.

I wanted him to feel useful and to “exercise his brain.” One morning, I was washing the breakfast dishes and Jim was sitting at the table.

“Honey, would you make a grocery list for me?” I nodded toward the pad and pen I’d placed on the table. “We need paper towels,” I said.

He picked up the pen and wrote on the notepad. “We need milk,” I said. He set the pen down and said, “I don’t want to.”

He walked out of the room, and I sat down to finish the list. On the paper, he had printed, “taper powels.”

Later he picked up the list and studied it carefully. “I wonder why I spelled ‘paper towels’ that way,” he said.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Not All Beasts Are Fantastic

Early Onset Alzheimer's Blog

I went to see J.K. Rowling’s Fantastic Beasts and Where to Find Them movie with my grandkids and daughter-in-law. I’ll admit that my granddaughter had to keep whispering information to me since I’m not a big reader of fantasy and (gasp!) have not read a single Harry Potter novel, much less the prequel story of Newt Scamander. She might as well have been speaking a foreign language although I often nodded and tried to absorb the information. I am definitely a No-Maj.

No, I don’t need to give a spoiler alert here. During the course of the movie, buildings were destroyed and then magically repaired. That’s why it’s called fantasy, folks, because we all know that when something is destroyed it takes a lot of work and tenacity to rebuild it.

Sometimes, I have thought of Alzheimer’s as a beast. Just like in the movie, the beast burrows beneath the surface, but in this case, wreaks havoc in the brain. The Alzheimer’s beast is made up of two halves—beta-amyloid  plaques and tau tangles.

The Alzheimer’s beast builds a roadblock between brain cells making it hard for them to communicate with each other. The beast murders brain nerve cells, which causes tissue loss. The thinking-planning-remembering part of the brain, the cortex, begins to wither. The hippocampus where we develop new memories is especially hard hit by Alzheimer’s and shrinks dramatically. The fluid filled spaces in the brain, the ventricles, become larger as the rest of the brain shrinks.

Unlike the movie, the damage caused by the Alzheimer’s beast cannot be repaired by waving a magic wand. I believe that someday—sooner, than later, I sincerely hope—researchers will find a means to stop Alzheimer’s in its insidious tracks.

Research involves a lot of trial and failure. I received disappointing news from the Alzheimer’s Association last week. Eli Lilly’s experimental drug, solanezumab, had earlier shown promise in slowing the deterioration of thinking and memory, but failed in a large clinical trial.

Better news comes out of the University of Kansas Alzheimer’s Disease Center. The National Institute on Aging, part of the National Institutes of Health, renewed the center’s national designation for five years. This center in the heart of America will receive $9.0 million through 2021 to continue their search to understand Alzheimer’s and treat the disease.

Douglas Girod, executive vice chancellor of  KU Medical Center said, “When the NIA first announced in August 2011 that the KU Alzheimer’s Disease Center (KU ADC) had achieved national designation, we were thrilled, but not surprised. We knew that our Alzheimer’s program had long been at the forefront of discovery and had already achieved significant success in understanding and treating this devastating disease.”

The center will be studying lifestyle changes as well as drug intervention in changing the course of the disease. Jeffery Burns, MD, co-director of the center announced that several clinical trials are examining the heart/brain connection: what’s good for the heart is good for the brain. KU ADC plans to expand the Lifetime Enrichment for Lifestyle Prevention (LEAP) program as a way to promote brain health in residents of senior living facilities.

Okay, how can you help? One of the roadblocks to these programs is a lack of volunteers. The biggest need right now is for healthy volunteers who are Hispanic or African American, but they need clinical volunteers of all types.

Alzheimer’s may seem like a beast that can’t be beaten, but when we promote Alzheimer’s research and make finding a cure a national priority, we can drive the beast from our midst.

I’ve already admitted I’m not a fan of fantasy, but this No-Maj is a fan of fact. It is a fact that lifestyle can reduce our risk of Alzheimer’s, and that researchers are working hard to find a prevention, treatment, or cure. When researchers unlock the mystery of Alzheimer’s disease, it will be magical in its own way.

Resource: http://www.kumc.edu/news-listing-page/the-ku-alzheimer%E2%80%99s-disease-center-renews-national-designation-expands-research-and-partnerships.html

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #5—Trouble Understanding Visual Images and Spatial Relationships

Early Onset Alzheimer's Blog

Alzheimer’s: Know the Signs  #5—Trouble understanding visual images and spatial relationships. They may have difficulty reading, judging distance, and determining color or contrast, which may cause problems with driving. (www.alz.org)

Excerpt from “Indelible” (memoir in progress):
 

Jim had been a lifelong reader, and we made nearly weekly visits to the bookstore to buy more Star Trek books, mysteries, or Louis L’amore books.

“Why do you have two copies of this Star Trek book?” I asked.

“I have no idea,” he replied.

I began to look through his pile of books and found other duplicates and even triplicates. He still opened his book at night to read, but he seldom turned the pages. I finally realized he didn’t comprehend what he was reading and couldn’t follow the story line.

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Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #4—Confusion with time or place

Excerpt from “Indelible” (memoir in progress): 

Jim became part of a study for a Phase III drug. He was tested during each follow up visit with the neurologist. They let me stay with him during the testing.

“What season is it,” the nurse asked.

“I have no idea,” Jim replied.

“Did you wear a coat today?” she asked as a cue.

“Yes.”

“What season do you think it is if you are wearing a coat?”

“I have no idea.”

“Do you know where you are?”

“A hospital.”

“Do you know what city this is?”

“Yes.” He couldn’t come up with a name, but was confident he knew where he was.

“Do you know where the stamp goes on this envelope?” She handed him an envelope.

“Right here,” he said pointing to the upper right hand corner. He gave me a look, like he thought she might be just a bit stupid to not know where the stamp went.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #3—Difficulty completing familiar tasks

Alzheimer’s: Know the Signs  #3—Difficulty completing familiar tasks

Memory lapses did not convince me that Jim had dementia, but when he began to have problems doing things he had always done, I knew something was terribly wrong.

Jim had played a guitar from the time he was a child. One morning, he asked me to tune his guitar. Jim, the guy with the musical expertise of a lifetime and perfect pitch, asked tone-deaf me to tune his guitar.

Excerpt from “Indelible” (memoir in progress):  Jim used to pick up his guitar and record audio and video tapes for his relatives in Oregon. When he finished a tape, he would write their name on it and set it aside. One day, his mom saw Jim put something in our mailbox which was in front of her house next door. After he put the object in the box, he raised the flag.

Curious to see what Jim was mailing, she opened the mailbox after he went home. It was an audio tape. Just a tape, not in an envelope or addressed. He wanted to send it to his cousin Leroy, so he put it in the mailbox.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #2—Challenges in planning or solving problems

Excerpt from “Indelible” (memoir in progress): 

Jim was huddled on the end of the couch, hands on his arms. “Brrr, it’s hot in here!” he complained. Jim was on blood thinners and chilled easily. He remembered the thermostat controlled the temperature, but he couldn’t remember how it worked. I had finally placed a piece of duct tape over the thermostat to keep him from pushing it from one extreme to the other.

“Let’s see what we can do about that,” I said. One quick glance confirmed he had forced the thermostat past my duct tape barrier and changed the setting to 60 degrees. I adjusted the thermostat to warm the house and placed another layer of duct tape on it.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: Know the Signs #1—Memory loss that disrupts daily life

Excerpt from “Indelible” (memoir in progress):  

I parked the car, opened the trunk, and began unloading the sacks from Walmart. I couldn’t convince Jim to help carry the bags. Sometimes he would, but this wasn’t one of those times. 

Jim wandered to the front door and waited for me to unlock it. I grabbed the handles of a half dozen plastic sacks, carried them to the porch, and after struggling with the key, unlocked the door. Jim walked into the house, and I tossed the first load inside the door. 

I trekked back to the garage for the rest of the sacks, but when I brought them inside, the other bags had gone missing. After I figured out Jim had carried the groceries to the bedroom, I lugged them back to the kitchen.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Getting Digital Affairs in Order

Jim and I sat in side-by-side chairs in an examining room. We were both scared. I knew I looked as worried, or more so, than Jim did. The neurologist breezed into the room, and said to Jim, “Now, we know why you are having trouble with thinking. Your MRI shows brain atrophy.”

My tears began to flow. “Why so sad?” he asked. “Other people have similar problems and go on with their lives.”

“Do you have your legal affairs in order?” he asked.

“No,” I admitted, thinking that question had an ominous sound to it.

Ominous or not, we heeded his advice and visited our attorney. He prepared our wills, advance directives, and durable power of attorney for financial and medical. We had it covered for both of us.

That was before online banking and bill pay—at least as far as we were concerned. I couldn’t get too involved online with super slow dial-up Internet and a PC that barely qualified as a working machine.

Now, with high-speed Internet and a powerful PC, most of my financial dealings are online. I pay bills electronically, access online bank accounts, and have countless other web presences. Not all assets are monetary. Some of us store our precious family photos online in digital photo albums.

Still, I figured my designated power-of-attorney could handle my digital affairs if I became incapacitated. That was a misconception indeed!

Harold and I have always assumed that if need be, we could manage each other’s digital finances, including the accounts each of us hold separately. In a casual conversation, he discovered that it was illegal to access an account unless you are a joint owner.

Even a financial durable power of attorney does not give legal access to digital accounts. A Florida woman found that out the hard way. Her husband had dementia, and she had managed his online bank account for years. One day she had a problem with the password, and when she contacted the bank, they told her she could not access the account because her name was not on it.

Sometimes it seems that we live in a world of too many laws, but digital information is one area that hasn’t been covered in most states. Persons with dementia need someone to manage their digital assets.

Congress and state legislatures could enact laws to ensure powers of attorney allow access to online assets and that executors can administer and distribute online assets. Service providers may eventually ask for “standby” owners who would manage digital accounts when an owner dies, or as in the case of dementia, could not manage his own account.

A law has been drafted addressing digital assets. At its 2015 Annual Conference in Williamsburg, Virginia, the National Conference of Commissioners on Uniform State Laws approved and recommended for enactment in all states a Revised Uniform Fiduciary Access to Digital Assets Act (2015). The act would grant the legal authority to manage digital assets to four types of fiduciaries: personal representatives of decedents’ estates, conservators for protected persons, agents acting pursuant to a power of attorney, and trustees.

In addition, the proposed Act would give custodians of the assets the legal authority to conduct business with the fiduciary of their client. In other words, the bank in Florida could have legally helped the woman access her incapacitated husband’s account.

Most of us need to revisit our financial documentation to make sure our digital affairs are in order. I don’t know about you, but it gives me nightmares to think that any of my digital assets could be forever lost in cyberspace.

Resources: http://www.uniformlaws.org/shared/docs/Fiduciary%20Access%20to%20Digital%20Assets/2015_RUFADAA_Final%20Act_2016mar8.pdf 

http://www.americanbar.org/publications/probate_property_magazine_2012/2012/january_february_2012/article_beyer_cahn_planning_for_digital_assets.html 

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Bad Moon Arising

There had been quite a bit of hype over the “supermoon” of November 13 and 14—the brightest moon in 68 years. This was going to be a full moon on steroids. A photographer’s dream.

Well, even though I had it on my calendar, I crawled into bed and settled down with my book. My phone buzzed, and I looked at it. Reminder: Supermoon.  

I jumped out of bed and wandered out onto the deck to take a few shots of the moon. Yes, it was bright and silvery. I took some photos, made a few camera adjustments, took some more and went back to bed.

The next morning started early for me. As I walked past my bedroom window, I saw a bright moon shining in the west. Before I’d had my first cup of coffee, I put on my boots and wandered out into the field to take photos of the moon. The sun was rising in the east and the play of light on the russet fall leaves made a different kind of moon photo than I’d taken at the midnight hour.

Whew. Supermoon over, I could go back to regular sunset photos.

That night, I had line dancing class. I pulled out of the garage and saw a bright orange-yellow moon peeping over the horizon. I ran back inside to grab my camera. I braced my arms on the car door and took a few shots.

Well, supermoon was supposed to be over, so that’s just a bad moon arising, I thought to myself. I knew the full moon had been the previous night, but the difference was subtle. I couldn’t help but think about the changes in Jim’s behavior during the full moon.

I know, I know, some people believe that’s just an old wives’ tale. In this case, I’d have to count myself as an old wife, because I saw it firsthand.

Most scientists believe the moon only affects open liquid, like the ocean, and not enclosed liquid such as in the human brain. But, you know if you dig deep enough, you can prove just about anything with Google and, lo and behold, I found a scientific study on the moon’s effect on a person with Alzheimer’s.

Alan M. Beck (sorry, no letters after his name), Purdue University, conducted a longitudinal study of the moon’s effect on persons with Alzheimer’s. His sought to “objectively examine the lunar influence on the frequency, duration, and intensity of behaviors in individuals with Alzheimer’s disease.”

The behaviors he studied were wandering, anxiety, physical aggression, and verbal confrontation. His conclusion—wait for it—aligned with mine. The study showed that people with Alzheimer’s disease not only exhibited more behaviors during the full moon—they exhibited significantly more. I’m certain that was not new information for nursing home workers.

After my impromptu photo shoot, I headed to the Celebration Center for my line dancing class, the moon was in full view most of the time. I kept thinking about “Bad Moon Rising” by Credence Clearwater Revival. I hadn’t heard that song in years. It always made me think of that scene in the Twilight Zone movie where the passenger in the car asks the driver, “You want to see something really scary?” Yep. Full moons, or almost full moons, can be bad moons.

I pushed all thoughts of bad moons to the back of my mind and turned on the happy feet for line dancing. After about fifty minutes, we formed a circle to do a dance called “around the world.” Our leader, Ruth, ran us through the steps so that we went in the right direction at the right time and didn’t knock each other down. She cued up the music and the sounds of “Bad Moon Rising” filled the room.

As we danced around the full-moon shaped circle, we laughed at how fast we were moving. Was it a coincidence that we danced to that song for the first time on the night I saw a bad moon arising? Of course, it was! Wasn’t it? Just to be safe, I’m not going out anymore tonight.

source: http://www.alzheimers.net/2013-11-15/does-the-full-moon-affect-alzheimers-patients/

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s Hope Forum

Jessica Snell, Vicky Hartzler, WyAnn Lipps, Linda Fisher

When Jim was first diagnosed with an Alzheimer’s type of dementia, I began a quest to learn as much as possible about the disease. I attended walks, forums, symposiums, and training sessions. I read books about Alzheimer’s and inspirational books trying my best to stay positive. Becoming a volunteer and advocate helped me believe, that in some small way, I was helping in the fight against Alzheimer’s.

I was excited when Adam Timmerman from Congresswoman Hartzler’s office called me to discuss early plans for an Alzheimer’s forum in Sedalia. We had not had an Alzheimer’s program in our hometown for several years.

Adam’s planning resulted in an outstanding program. The first speaker of the day was Joel Shenker, MD PhD, a neurologist and cognitive psychologist. Adam couldn’t have found a more knowledgeable or dynamic speaker.

Dr. Joel Shenker

Dr. Shenker gave an overview of the disease along with prevalence and the personal and financial cost. He explained biomarkers, discussed research, and explained the different kinds of brain scans.

The truly outstanding element of Dr. Shenker’s presentation was how he shared information in a way that made it easy to understand. The cornerstone of his message was “We need a culture shift.” He said that we do not handle dementia well. Most people with dementia are undiagnosed and not treated. This means that a bus driver, a pilot, or a person in a leadership position could have undiagnosed Alzheimer’s disease.

Research shows that most people with Alzheimer’s do want to know. Dr. Shenker said, “People can overprotect you, which robs you of your independence.” Think about those words and let them really sink in. In the early stages, input from the person with the disease can help them chart their own course.

I knew from personal experience that this was important information for the caregivers in the room. When Jim’s test results showed he had brain atrophy, his neurologist told us to get our affairs in order. Talk about scary words to people in their forties. He asked Jim, “Who do you want making decisions for you when you aren’t able to make them? Strangers, or your wife?”

“I want her to make them,” Jim said.

I shared some of my experiences as a caregiver with a “Caregiver Emotions” presentation. Emotions at the top of a caregiver’s list are guilt, resentment, anger, worry, loneliness, defensiveness, and grief. These emotions can be harmful to the health of the caregiver, so it is important to know strategies to take control of them.

The program ended with two panels. The first panel included a support group facilitator, a geriatric physician, a nurse with care planning experience, and a social worker. They each gave brief descriptions of what they did and answered numerous questions from the audience.

The second panel was made up of the Sedalia Walk to End Alzheimer’s chairs, Jessica Snell and WyAnn Lipps, and an Alzheimer’s advocate (me). Jessica and WyAnn talked about the Walk, the committee, and the need for community involvement. I talked about how anyone can be an advocate and stressed that we work with all political parties. Alzheimer’s is a bipartisan problem and requires a bipartisan solution.

The forum was a great success! On behalf of the participants, I would like to extend our great appreciation to Adam Timmerman and Congresswoman Hartzler for making this an event to remember.

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com

The Wrong Way

Coming into Sedalia, the southbound lane of Highway 65 splits, one lane toward downtown, and the other lane continues through town. I was on my way to line dancing exercise class and used the right-hand lane to go to the Celebration Center.

I was thinking about how early darkness had fallen, when the car in front of me swerved to the right. Immediately, I was gazing into the shadow of death in the form of headlights coming my way. In my thousands of trips through this area, I had never once met a car going the wrong way.

I swerved to the right, and the car passed by on the left. In my rearview mirror, I saw the car turn around and head back in the correct direction rather than continue north in the southbound lane.

There has been more than one fatal accident locally with cars going the wrong way. I know of at least two that involved elderly persons with dementia. In one case, the family knew the man shouldn’t have been driving, but taking the keys away wasn’t easy. The person with dementia may balk at relinquishing them and family may be reluctant to take away a final piece of independence.

One of the phrases Jim used when dementia interfered with his speech was, “You’re going the wrong way.” He told me that all the time, but it wasn’t because I was physically going the wrong way. He was trying to tell me something was wrong, usually because I didn’t understand what he was trying to tell me.

In my opinion kindness, decency, and a positive attitude are going the wrong way. We have been bombarded with conspiracy theories, rumors, and character assassinations. I received a political advertisement in the mail that completely attacked the character of a man running for state office. The odd thing was that his opponent was not mentioned at all.

We’ve been inundated with negativity for so long, that it is having a detrimental impact on our quality of life. People are nervous, intimidated, and angry. I hate to think of the effect on long-term health, both physical and mental.

Perhaps the worst fallout from this exposure to negativity is alienation of family and friends. No one likes to be lumped into a group that has this, that, or another quality. Each of us has a different thought process and different deal breakers. Just because someone thinks differently doesn’t mean you are one hundred percent correct and they are one hundred percent wrong.

I’ve been wrong more than once. Luckily, I was wrong recently.

I sent a photo to an email address I copied from another source. An email came back. “I think you have the wrong person.”

I looked at the address and thought it was correct so I said the photo was attached taken at a recent meeting. “I don’t remember going to that meeting. When was it? My memory sometimes gets the best of me.” My heart sank. Oh, no, forgetting a meeting that occurred less than a week ago was not a good sign.

I swallowed hard and read the email to my husband. “That doesn’t make sense,” he said. “She was fine that night.” I had to agree with him. She was articulate, involved, and as spunky as ever.

As I sat there mulling over the situation, I noticed that I had left out a dot. I apologized to the person I had sent the photo to in error, and explained my mistake. I received a reply, “That ‘dot’ will get you every time!” I definitely sent it the wrong way…to the wrong person. Or was it the right person?

I have no idea who the unintended recipient was, but I appreciated his or her sense of humor. It was a lesson learned as far as I was concerned.

Maybe I’ve been looking at this entire political process the wrong way. I will admit I’ve have had a little fun when people share articles without reading them because of a misleading headline. The article may say exactly the opposite of what they presume it said, but they blow their stack over another perceived “outrage.”

Humor can ease a lot of angst. Don’t all of us need that now?  

Copyright © November 2016 by L.S. Fisher

http://earlyonset.blogspot.com