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

The Tricked and the Treated

Throughout my lifetime, I can remember different Halloween adventures. As we walked from home to home, we’d stop to pick up pears that had fallen to the ground. Word on the street would spread as to which homes had the popcorn balls or the best homemade cookies. Yes. Homemade.

In our town, you never heard of anyone tampering with candy. Halloween was fun and kids could count on being treated, and never cruelly tricked. The only trick for me was the upset stomach on All Saints Day from indulging in too many sweets the prior night.

Have you ever noticed that in life we know people who are tricked by life and others who are treated? Whether life brings rewards (treats) or disaster (tricks) doesn’t seem to have any correlation as to how deserving they are.

Good people get the biggest tricks of all—cancer, heart disease, Alzheimer’s. Bad people get big inheritances, win the lottery, and raise high in life by stepping on others. I’m not saying that all people who make it good in life are bad.

Badness comes from the core, not the outward trappings. Bad people trick good people because they have no conscience. They not only manipulate, they also revel in their power to sway gullible people. They bully and project their own shortcomings onto others.

Life doesn’t have a balance sheet. Good deeds for others doesn’t always produce dividends or reciprocation. Just as when someone cons you and takes advantage of you, don’t expect karma to bite them in the butt. Conniving a way to “get even” brings you down. Instead of revenge being sweet as Halloween candy, it’s more like biting into a razor blade hidden in an apple.

Personally, I’ve been both tricked and treated numerous times throughout my life. That’s the way it is for everyone. Maybe that’s where the balance is. Sometimes tricks turn into treats. I lost a job at a time when I couldn’t afford to lose the income. I found a much, much better one. When I was young, I had my heart broken. Then, I found my soul mate.

The thing about life is that when it hits rock bottom, it can’t possibly go any lower. Life is a cycle of good, bad, good, bad, good. Unless the rollercoaster flies off the rails, just hang on and enjoy the ride.

The choice is mine. Do I want to be one of the tricked or one of the treated? I choose to be treated.  

Copyright © October 2016 by L.S. Fisher

http://earlyonset.blogspot.com

New Alzheimer’s Novel: Brought to Our Senses by Kathleen H. Wheeler

I blog about early onset Alzheimer’s, and authors often ask me to read their books. If I believe I can squeeze in the time to read another book, I’ll ask for an electronic copy.

A few months ago, I had the privilege of reading a prepublication copy of Brought to Our Senses by Kathleen Wheeler, release date November 1. I don’t want to gush, but this is one of the best Alzheimer’s novels I’ve read…and I’ve read a lot of them.

Brought to Our Senses explores the family dynamics when early onset Alzheimer’s strikes the Kraus family’s mother. A dysfunctional family must reshape their differences to deal with the unthinkable. The distinct characters and the storyline make this a page-turner. This spellbinding story is so real to life that it is easy to forget it is a novel and not a true story.

I liken the quality of this book to that of Still Alice. If you only have time to read one Alzheimer’s novel this year, I would recommend this one.

Kathleen has kindly provided some background for me to share with my blog followers:  

Tell a Great Story: First and foremost, I wanted to tell a compelling story, one that just sucks you in from the get go. I’ve been drawn to reading and writing since I was a kid and have always wanted to write a novel. Once I grasped the premise for my book and realized what a great story it was, I just couldn’t let it go. I had to write it.
 
Build Awareness: I had other reasons for sharing the story too. Alzheimer’s was extremely traumatic for my family, and I’ve been changed by the experience. I wanted to share the reality of the illness, and I wanted to emphasize the importance of strong family relationships to get through such an ordeal.
 
Give Back: Finally, I wanted to do something positive for the community, something that would help others struggling with the difficulties of dementia. So I’m donating a portion of proceeds from the sale of my book to help organizations that support dementia patients, family caregivers, and research to find a cure.

Upcoming events: Here are a couple of those groups with events already lined up for my book’s release. If you’re in central Illinois, stop by or attend to see me and help with the efforts of these fine organizations:

SIU School of Medicine Center for Alzheimer’s Disease and Related Disorders
Alzheimer’s Awareness Educational Program
Free and open to public, register before or at the door as space permits

November 5, 2016 (Saturday) from 9 am – 12 noon

Memorial Center for Innovation and Learning
M.G. Nelson Family Auditorium
228 West Miller St, Springfield, IL

Alzheimer’s Association – Greater Illinois Chapter
Book Signing Benefit
November 15, 2016 (Tuesday) from 4:30 – 6:30 pm

County Market Mezzanine
210 E Carpenter St, Springfield, IL 62702

For up-to-date information, visit Kathleen’s author website:

http://www.authorkathleenhwheeler.com/share/

Copyright © October 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Take Me Away…

At line dancing exercise class last week, our fearless leader, Ruth, said that line dancing was her way to relieve stress and take her mind off her troubles.

“That’s what it does for me too!” I said. “No matter how bad a day I might have, I leave here in good spirits.”

Part of the reason is that while I exercise, I have to concentrate on the steps. By focusing on the dance, I empty my mind of all the troubling thoughts that may have been plaguing me.

This month was our annual “take me away” Girl’s Trip for my mom, my sisters, and me. Our short vacation was a relaxing kind of busy. Still, it must have tired me out, since I spent the entire first day back in my PJ’s doing absolutely nothing beyond eating and breathing.

I haven’t figured out how to live without a certain amount of stress, but retirement alleviated a lot of it. Now, I seldom have a headache, while it used to be an almost daily event. Even so, I have too many things to do and not enough hours in the day to accomplish them.

Here it is, almost Halloween, and I’ve yet to put up my fall decorations. I planned on doing that three weeks ago, but it just hasn’t happened. I used my decorations at the October SBW meeting, and until Wednesday, I still had them in the trunk of my car. Now, at least, I’ve brought them inside, and they are currently on the dining room table.

I have been a wee bit busy lately. I thought after the craziness of September that October would be a little more laid-back. Instead, my calendar is stacked, double stacked, and occasionally triple-stacked.

This last week has been Business Women’s Week with daily activities. Fortunately, some of the events were simply stress-busters too. One night was “relaxation night” and I participated in a Zumba class. Another night, we played Bunco with a lot of laughter and visiting. Dinners and luncheons were an opportunity to spend time with my friends.

Yesterday was the second day this month that I didn’t have something on my calendar. That doesn’t mean I didn’t do anything. I caught up on some of my accounting, updated a website, and helped with plans for the Alzheimer’s Symposium that Congresswoman Hartzler is hosting in Sedalia on November 10.

I will present a program on “Caregiver Emotions” at the symposium. I’ve given this program three times before—once at the Senior Center in Warsaw, for the Men’s Support Group in Columbia, and for family members who had loved ones in a nursing home. By addressing the individual emotions, a caregiver can alleviate caregiver stress.

Managing stress is a crucial step toward staying healthy. Left unchecked, stress can leave you vulnerable to high blood pressure, acid reflux, blurred vision, irritability, and problems with concentration. Caregivers tend to ignore their own health problems, which can lead to the caregiver dying before his loved one.

The last few months of ugly political rhetoric has created stress for a lot of us. Social media has turned into a firestorm of disagreement, meanness, name-calling, and wild stories re-tweeted and shared as if they were the gospel. I can only hope and pray that after the election, people will rebuild the bridges they’ve burned with their family and loved ones.

Now is the time for all of us to look for those “take me away” moments. I find it totally relaxing to sit on the deck drinking coffee and conversing with the dog. Reading a good book is another way of getting away from the day-to-day stress that creeps up on me.

Hallmark movies, the Voice, and reruns of the Golden Girls saw me through many stressful moments. Laughter is the best stress buster, and I’ve found that the old truism “Laughter is the best medicine” is undeniably true!

Copyright © October 2016 by L.S. Fisher

http://earlyonset.blogspot.com

Give More Than You Get

We are always asking kids what they want to be when they grow up. I remember when my youngest son was young, he used to say, “Curtis and I want to go to Colorado and be mountain men.” One time my granddaughter told me that she wanted to be “Barbie” when she grew up.

I was watching a TV show several weeks ago and grown-ups were saying what they wanted to be when they “grew up.” One person said, “When I grow up, I want to give more than I get.”

Well, I never wanted to be Barbie or a mountain man, but I certainly admire the idea of giving more than I get. It’s only natural for us to look out for numero uno. After all, we’re looking at the world through one set of eyes and from one perspective. With our limited vision of the world around us some find it easier to be selfish than to be selfless.

Does it do any good to measure what others own to what we have? Coveting another’s possessions creates a miserable existence. Those who have little might envy those who have more, or those who have a lot might look down on people who have less.

Some people are innately generous, for example a child who gives his or her favorite toy to a friend. More common are the children who grab a coveted toy out of another child’s hands.

The odd thing is that often people who are the most sharing are those who have the least. Maybe it isn’t so strange after all. People who have accumulated a lot of wealth sometimes do so by pinching each penny until it screams. They’ve worked hard for what they have, and they don’t think anyone else deserves the fruit of their labor. Wealth can be a prison of fear and anxiety.

I came from a home with two hard-working parents who struggled to provide for a family with eight children. We never had a lot, but Mom and Dad instilled into each of us that a person’s worth was not tied to how many material possessions he had amassed.

Instead of telling us to go out into the world and try to be rich, our parents guided us toward being independent, hard-working adults who took satisfaction in being good people. We were taught that we weren’t better than the less fortunate, and we weren’t less than the wealthy. We were raised in a share and share alike environment, and it has lasted each of us for a lifetime. There is not a selfish member in my family!

One of the most generous people I’ve known in my lifetime was Jim. He would not only give someone the shirt off his back, he actually gave my brother the buttons off his uniform. He gave away a priceless tater bug mandolin and a valuable Gibson guitar. I would say throughout his life, he gave much more than he received. Greed wasn’t in his vocabulary.

Although dementia greedily snatched him away physically, he left an indelible impact on the lives he touched. Throughout his life, a circle of family and friends surrounded him with love.

Jim was one of the people who gave more than he got during his lifetime. No, he didn’t leave a monetary inheritance. What he left was a richness of memories, stories, and love of family.   That is admirable in itself, but I think even more important is that when he passed away, he left more than he took.

Copyright © October 2016 by L.S. Fisher

http://earlyonset.blogspot.com