Friday, February 17, 2017

Alzheimer’s Caregiving: A Voice of Experience

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Copyright © February 2017 by L.S. Fisher

Monday, February 13, 2017

Seven Types of Love

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

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

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

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

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

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

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

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


Copyright © February 2017 by L.S. Fisher

Saturday, February 4, 2017

You Know What I Hate?

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, January 31, 2017

Treasure Trove of Memories

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

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

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

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

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

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

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

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

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

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

Sunday, January 29, 2017

Grace Under Fire

I had such a busy week that when Saturday rolled around, I plopped on the couch and turned on the TV. I began to watch the twenty hours or so of the European Figure Skating championships recorded on the DVR. This gluttonous devouring reiterated my opinion that a figure skating competition is the epitome of grace under fire.

Countries sent only their top skaters to the competition, but most knew they were not in medal contention. Some found victory by participating in the competition, while others were only satisfied with one of the top three slots.

Some of the performances were so nearly perfect that a small bobble made the difference between earning a coveted medal, or going home empty handed. It was easy to show grace when everything went according to plan, but those that truly showed their spirit were the ones who fell, jumped back up, and continued doing their very best.

The expert commentators knew immediately when someone faltered. The skater’s foot touched too soon, they didn’t quite complete a rotation, or pairs were not in unison. Skaters made “silly mistakes” when they completed difficult jumps and then stumbled on an easy element.

It made me think about being a caregiver. I could often handle the messy and difficult parts of caregiving, but might fall apart over a broken nail. Why was that? I believe that I forced myself to meet the tough challenges with acceptance and a sense of loving duty. Oh, but when it came to the simple setbacks, I stumbled.

I can’t think of many things that rival the beauty of figure skating. Each move is choreographed to carefully selected music. Music helps set the tone whether figure skating or drudging through a day that seems almost too much to tolerate.

During the days of caregiving, I remember days when I was up before daylight to work ten hours and then went by the nursing home in the evening to feed and bathe Jim. It was unusual for me to make it to bed before midnight.

In the journal I kept while Jim was in the nursing home, I would tell about my day and often say, “I am so tired.” Thinking back, that’s what I remember the most—being tired. Exhausted. Like I was running on empty.

Being chronically tired often means that grace goes by the wayside. To this day, being tired makes me cranky and more than a bit whiney.

Caregiving, like figure skating, greatly improves with practice. When we put ourselves out there, so to speak, we open ourselves up for criticism or derision. Caregiving is like figure skating in that sense. The critics will sit back and watch someone else struggle and pontify how it could have been done better or more efficiently. When a caregiver provides caregiving with love and grace, it just doesn’t get any better.

Taking care of a loved one is much like walking through fire. It hurts like hell, but unless you keep on moving, you’re going to be charred beyond recognition.

None of us makes it through life without faltering. The best we can hope for is to demonstrate grace under fire. No one gets a medal for being the best caregiver in the world. Our reward comes from being the best caregiver we can be.     

Copyright © January 2017 by L.S. Fisher

Monday, January 16, 2017

The Fierce Urgency of Now

Yesterday, I watched the Kansas City Chiefs play the Steelers in a playoff game. Any year the Chiefs made the playoffs, we fans were hopeful that the Chiefs would make it to the Superbowl. We always hoped we wouldn’t be disappointed—again.

During commercial breaks, I watched other fans’ reactions online. About the time I realized the Chiefs were going to fall to the curse of their playoff games, a photo of a youthful Jim popped up on my Facebook newsfeed.

Jim was the sole reason that I became a Chief’s fan. Through winning seasons and losing seasons, he was steadfast in his loyalty. During the early years of our marriage, Monday night football was opposite the movie of the week. With one TV set, I never watched a single movie during football season.

Although, it seemed magical that Jim’s photo appeared on my phone just as I was thinking of him, I scrolled past other old family photos. Jim’s cousin Debbie had decided to make an online album of old family photos, and I assumed she had posted the photo. I downloaded the photo and added it to my own online album of Jim’s pictures.

“Can I steal this for the Fisher album?” she asked.

“I just stole it myself. That’s where I thought it was,” I replied.

It didn’t take me long to figure out that my nephew John had posted it.

Seeing Jim’s photo put a lot of perspective in my outlook, and reminded me of the real urgency of now. When he was diagnosed with dementia of the Alzheimer’s type, my goal became to do anything possible to change the outcome.

The urgency to do something, rather than patiently wait for the inevitable, was part of my nature. I trolled the internet looking for anything to stave off a degenerative, fatal disease. I tried to get Jim enrolled in drug trials. He was turned down for one trial because he was too young and for another because he had lost the ability to communicate.

I began to go to the Alzheimer’s forum to advocate for more research dollars. I saw the urgency to find a cure in the eyes of caregivers, and my heart hurt for them. I felt their pain and knew the disappointment of hearing a doctor say, “Even if they find a cure, the disease is so far advanced that it’s too late for him.”   

As the years went by and the disease won, I continued my advocacy, as have many others who lost loved ones. We all share the same hopes and dreams—a cure for Alzheimer’s.

I recently read the “I Have a Dream” speech Martin Luther King, Jr., delivered at the Lincoln Memorial in 1963. Although his speech was loaded with quotable sentences, one phrase caught and held my attention. King spoke of “the fierce urgency of now.”

Many of us won’t step out of our comfort zone to fight for our cause with the conviction of Martin Luther King, Jr. Most of us anonymously fight our fight. Some of the rich and famous meet the challenge as they or their loved ones discover Alzheimer’s when it strikes close to home.

Just this week, I learned that the former head coach of the Kansas City Chiefs Marty Schottenheimer has Alzheimer’s. This too, helps me put the Chief’s loss into its proper perspective. Next season, the Chief’s have a new start and a chance to redeem themselves.

As far as Alzheimer’s, there are no second chances. With more people dying each day that passes without a cure, we have the “fierce urgency of now” to end Alzheimer’s.

Copyright © January 2017 by L.S. Fisher

Sunday, January 8, 2017

Choices, Chance, and Monopoly

A few weeks ago, my grandson went to the closet where we keep our games and came out with a vintage Monopoly game. I hadn’t played the game since I was a kid and sure didn’t remember anything about it or the rules. My grandson gave “money” to Harold and me and the game began. It turned out to be a game of choices and chance. The roll of the dice could give you a chance to purchase properties, pay rent or taxes, draw a “chance” or “community chest” card, or maybe “go to jail.” It didn’t take long for me to find out what the expression, “do not pass go,” meant.

My son, who was watching us play, noticed something rather peculiar. “Mom, you are being so cautious about what you spend, and Harold is buying without a second thought. That’s totally the opposite of how you are in real life.” I had to agree.  

Spending habits aside, the game made me think about how each of us has a monopoly on our own destiny. Have you ever stopped to think how much your life would be affected if you had made one major choice differently than you did? Or what if that lucky break hadn’t come your way?

Chance can put us in dangerous situations. Decisions can lessen the danger or increase it. How often have you heard someone say, “If that had happened to me, I would have… (blah, blah, blah).” One thing I’ve learned in life, no person will ever know what he would do in someone else’s situation. I don’t have a clue why they react the way they do, because I have not lived the same life.

In my own life, I met Jim by chance, chose to marry him, and chose to work at it. Dementia cut his life short by chance, and I chose to become an Alzheimer’s volunteer, which brought about a major change in my life. I’ve gone places I would have never gone, had experiences I would not have had, and found friends I would have never met.

Who we are and what we’ve become is a conglomeration of choice and chance. Sometimes, we might not even distinguish the difference. Have you ever noticed how many of us go to college and never work in the field we studied? Sometimes, that’s choice and sometimes it’s chance. Maybe we couldn’t find that special job we wanted. The winds of chance did not blow in our direction. Sometimes, we just grow older and decide that wasn’t the career path for us.

At one time, I wanted to be a teacher. Then, I wanted to be a journalist. What really happened was I became a mom and stayed home with the kids while they were little. My first real job after returning to college was in subscriptions at a coonhound magazine. Believe me, I never saw that coming!

After that company moved out of town, I, by chance, was selected to interview for a job on a computer. You have to realize that I had never seen a computer, much less used one. I chose to believe that it was something I always wanted to experience. That choice changed our family’s economic situation. Up until then, we had spent several years living frugally and still barely getting by.

Nine years after Jim passed away, I chose to remarry. So, here I am, in this house, in this room, at this table, working on this PC because of a lifetime of choices and by chance. It’s a scary thought that my destiny would have changed if I had made one different decision along the way. Yes, I have a monopoly on my life. No one else will ever have the exact experiences or make the same decisions I have made.

On the other hand, I’ve always had a feeling that the choices and chances I took were meant to be. I seriously doubt that I’ve always made the wisest or even most logical choice. My decisions have been good, bad, and ugly, yet somehow, in the end, it worked out.

I believe I’ve often been “nudged” along the right path. My path.

Copyright © January 2017 by L.S. Fisher

Friday, December 30, 2016

Resets and Do-Overs

Each January, we greet the New Year with optimism that we will experience a whole lot of “happy.” Somewhere in the recesses of our brain, we seem to think putting up a new calendar magically starts everything anew.

How we felt about 2016 may depend on how we look at life in general. If we accept the ebb and flow as a natural part of the tides of life, we probably didn’t see a lot of difference from any other year. Some of us, in any given year, have major life events that will forever distinguish certain years no matter how much time passes.

Other than those special years—graduation, marriage, births, deaths, etc.—the years of my life just blurred together. In retrospect, I couldn’t even tell you which years were good years and which were bad unless some exceptional event set it apart from others.

Jim was the most amazing person I ever knew when it came to dates and years. I believe his ability to remember his past so distinctly was because of his phenomenal memory coupled with living in so many different places throughout his lifetime.

I had hoped that 2016 would be the year when a breakthrough in Alzheimer’s would make this a red-letter year. Although, we’ve had successes, we are still short of the prize. This year saw a historic increase in Alzheimer’s research funding, and that increase holds a prayer and a promise that we may be on the cusp of the ultimate discovery.

Personally, this year held failures and successes. I lost an election, won a prize, finished some projects, and plodded along with others with no end in sight. I’ve been blessed with generally good health, with only a few minor setbacks. I’ve made several new friends and lost a few.

On the positive side, I learned how to line dance this year. I helped with my brother’s memoir, and I’m so proud of him and my sister-in-law for bringing his story to life. I’ve made many, many happy memories and found several dashes of humor in the world around me. I believe, I’ll give 2016 two thumbs up.  

Oh, is this when I should be thinking about resolutions for 2017? Will we ever learn that the all or nothing nature of resolutions sets us up for failure? I recently read that a paltry 8% of people are successful when it comes to resolutions. I’ve long been a fan of goals rather than resolutions.

Healthy Living recommends “resets” instead of resolutions. The point is that instead of attacking resolutions like gangbusters (my term, not theirs) on January 1, just to give up when you break it, reset each day. So you didn’t cut out all sugar on January 2 per your ambitious New Year’s resolution, simply reset on January 3, and try again!

Jim and I used to call that “overs.” When something didn’t work out the first time, we allowed do-overs.

In 2017, I would like to wish you a multitude of resets and do-overs to help you achieve your goals and to follow your dreams!    

Copyright © December 2016 by L.S. Fisher