Sunday, May 29, 2016

A Weekend of Remembrance

Memorial weekend has always been a time to reflect on those who have gone on to a better place. “Decoration Day” originated following the Civil War to honor those who died while fighting in the war. General John A. Logan, representing northern Civil War Veterans, called for the nation to decorate the graves of those who died during the war and whose bodies were buried throughout the land. He chose the date of May 30 because it did not coincide with any major battle.

The first Decoration Day was celebrated at Arlington where 20,000 Union and Confederate soldiers were buried. After General James Garfield’s speech, volunteers decorated the graves of the war dead.

The holiday became known as Memorial Day and during World War I, it became a day to remember all who died in battle. In 1971, the date was changed to the last Monday in May to comply with the 1968 Uniform Monday Holiday Act.

Since 2005, I’ve always driven to Missouri Veterans Cemetery at Higginsville for the Memorial Day ceremony and to place flowers in front of Jim’s niche. This year, thinking ahead, I purchased flowers on Friday. Saturday morning, my son asked me if I wanted to go to Higginsville with him and his family. After giving it a few moments thought, I quickly made the decision that a day with family would be a better way to spend the day. Sort of an answer to the question: what would Jim do?

After our visit to the Missouri Veteran’s Cemetery, we decided to get a few stamps on my grandkid’s “Passport” to Missouri’s numerous state parks and historical sites. They already had one “stamp” and decided to pick up a couple more. The Veterans Cemetery is next to the Confederate Cemetery and only a short distance from the Battle of Lexington State Historic site. We spent a day learning more about the war that began the entire tradition of the holiday.

The weekend of remembrance continued on with church services this morning. We were encouraged to write the names of loved one who had passed away on a piece of yellow paper and place them on a wreath at the front of the sanctuary.

As I was sitting, head bowed, during a moment of prayer, an image of Jim popped into my mind. He had a big smile on his face and stood at a  split-rail fence, with one foot propped up on a rail. I couldn’t help but wonder if it was a memory or a visual reassurance of the here and now. A thought crossed my mind that because dementia snatched him away, I’ll never know what he would have looked like as an old man.

Jim was a veteran, and although he didn’t lose his life in Vietnam, he certainly lost some of his spirit. I’ll never forget how devastated he was the first time we visited the Wall in Washington, D.C. Every day is Memorial Day at the Wall.

Judging from the traffic this weekend, I’d say most people are more interested in the three-day holiday than anything to do with Memorial Day itself. Picnics and celebrations abound during this holiday weekend. Isn’t it a little strange to say “Happy Memorial Day” or “have fun this weekend”? Maybe, maybe not. After all, our love of life and country are made possible because of the men and women who offered up, or made, the ultimate sacrifice. We need to appreciate the legacy they left us, and in turn, pay it forward to the next generation.

Copyright © May 2016 by L.S. Fisher

Thursday, May 19, 2016

The Real World

My graduation from WWU 2005
As always, May is a turning point in young lives everywhere. The caps and gowns are a visible symbol of young people leaving the comfortable nest of home and “Pomp and Circumstance” into  the “real world.”

My two oldest grandchildren both earned the all important diploma to signify their accomplishments, one for college and the other high-school and college bound. Although I’ve been with them through the years, it doesn’t seem possible they are both adults now.

I can imagine how proud their Grandpa Jim would have been! The grandkids were the center of his life, before his real world became a scary and confusing place.

I can’t help but compare the world today to what it was when I graduated high school long, long ago. When I was a teenager,  problems and failures were private family business, not shared with the world via the internet. I probably have a dozen photos of me growing up, but now kids may have a dozen photos posted online in a single day.

In my wildest imagination, I could never have predicted a time when we would carry around a device in our pockets with access to the entire world at our fingertips. I couldn’t have foreseen flipping through hundreds of channels on a television set. We had three channels and the remote control was whichever  kid was told to turn the channel, and rotate the antennae.

We still don’t have flying cars like the Jetson’s had, but some have truly amazing optional features available: Cars that warn you if someone is in your blind spot, adjustable everything, and cameras that seem to know exactly where to point.

My son told a story about his daughter sitting in an older vehicle. Looking around, she pointed at the manual window crank, and asked, “What’s that for?”

“You roll the window down with it,” my son said, demonstrating.

“Well, that’s just stupid,” she said.

My pursuit of a degree was delayed due to having children and then going through many years of trying to stretch the dollars to pay the bills. I received an associate’s degree from a community college when my kids were young, but didn’t get my bachelor’s until 2005.

School certainly changed between high school and community college. I tested out of a math class in junior college without realizing that it wasn’t considered cheating to use a calculator. Who knew?

By the time I was working on my bachelors, I had a PC and internet. I took online classes. One of my classes required us to check out websites and evaluate them for trustworthiness. In many ways, getting my degree later in life gave me skills and confidence to tap into the power of technology.

The changes I’ve seen throughout my lifetime, make me realize how mind boggling the world will be in another century. What will the world be like for my grandchildren when they are my age? What will the “real world” be like then?

Copyright © May 2016 by L.S. Fisher

Tuesday, May 10, 2016

Snapshot

Jim in Oregon 1994
A few mornings ago, my husband woke me up. “You’re a bed hog and I have proof,” he said.

I opened one eye and glanced at the photo on his phone. The photo clearly showed me sprawled face-down with arms and legs stretched out from cover the entire bed. One leg was out from other the covers, and I was rocking the blue plaid pajamas and red and white polka-dot socks.

“I’m going to sign into your Facebook account and make this your profile picture,” Harold said, teasing me.

“Knock yourself out,” I said, as I rolled over and went back to sleep. 

We live in an age where anything can be captured in a digital photo. That can be good, or it can be bad. Photos and video clips have caused riots, property damage, and deaths. On the flip side, photos can touch us in a special way when we see the beauty of a tiny newborn baby, a cute animal, or a digital version of an old family photo.

Because of the capability of social media photo sharing, I’ve had the pleasure of seeing photos for the first time although they were taken decades ago. These photos can bring back memories of times long gone by. These rare, family photos reside in a file on my Iomega external drive where I can access them at my convenience.

I’ve always enjoyed taking photos. Jim was the videographer, but I was the snapshot queen. Before any special occasion, I stocked up on rolls of film. A roll of film would take 24 or 36 photos. How well they would turn out was always a surprise. The occasion would be long past by the time the film was processed. Even worse were double exposures. Some cameras did not automatically advance the film, or you could accidently run the same roll through twice.

One time when Eric was a baby, we took a roll of film capturing some memories. Unfortunately, when the pictures came back, they were of another family. I didn’t have any luck tracking down our photos, and the other family’s vacation photos were never returned to them.

Photos can help us remember small moments as well as the important times in our lives. I recently looked through an album of photos taken during one of our Oregon trips in 1994. It brings back memories of how Jim loved to travel, especially to Oregon. Jim enjoyed showing me out-of-the-way places—and of course, the back roads.  

When Jim’s memory was fading, he still recognized some people in photos. I came home from work one day and the caregiver said, “He showed me the picture of your daughter’s wedding.” Jim had pointed to the photo of our son’s recent marriage. He said, “Stacey’s wedding.” For some reason, he had trouble remembering our son’s name, but he had correctly identified the bride.

I fixed up a few small photo albums for Jim to keep at the nursing home. One day he tapped his finger on a photo and of his brother and his wife and said, “Bob and Barb.”  

At a recent three-day conference, I took nearly 500 photos. At one point my 16 GB memory card was full and I deleted enough duplicate photos that I could keep on shooting snapshots. The photos I had taken did not fill the card, but I kept downloaded photos on the card the Iomega drive is backed up.

I’m in the process of organizing my “red drive” where I store my photos. So far, I have nearly 80,000 photos stored in 5,530 files. My digital photos make organizing the boxes of printed photos seem quite underwhelming.

I rarely print photos anymore, but when I do, I no longer have to wait patiently to see how they will turn out. I can enlarge them on my screen and crop, zoom in, enhance the lighting or color. I don’t have to worry about them being lost with one-hour photo.
Snapshots are visual memories. Some will be treasured by our descendents and others will be relegated to the recycle bin. In the meantime, trips down memory lane are just a few clicks away.

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

Thursday, April 28, 2016

One Person Can…

I spent the weekend at the BWM State Conference with my Business Women of Missouri sisters. I always come away from these conferences energized and with new, fresh, or possibly refreshed, ideas. One such refreshed idea came during an organizing session.

Organizing presentations have a way of highlighting my inadequacies. It’s not that I don’t know the basics of organization, or even that I don’t follow some of them, but I’m an out-of-sight-out- of- mind person. I use To-Do lists, but there’s nothing like seeing a pile of unfinished paperwork to motivate me. The speaker distributed a test I had taken before that demonstrated how much multitasking slows down our work. I am the queen of multitasking…to the point that I get a lot of things done, but none finished.

One trick to avoid multitasking: set a timer and work on projects in blocks of time without those pesky time-wasting interruptions. Great idea! I started this blog post, set my timer for 30 minutes and went straight to work. I stopped the timer to go fill my glass with ice water. Reset. Typed a few lines and the phone rang. Unexpected problem I could only partially resolve. Conversation over. Reset. So, this method isn’t working so well for me so far.

Each BWM president chooses an inspiring theme that our group uses throughout the year as motivation. They are always great themes, but President Sharron has chosen a theme that speak to each of us individually and inspires accountability. Her theme, “Just One Woman Can,” opens up a realm of possibilities.

We often underestimate the difference we can make as individuals. Being an Alzheimer’s volunteer and advocate, I realize that I can make a difference. You can make a difference too!

One person can…

a)      Support Walk to End Alzheimer’s. Can’t walk? You can still help by sponsoring a walker. Dorothy Ream wasn’t able to walk, but she used to call up all her friends and ask them to pledge any amount no matter how small. She annually raised over $1,000 to support our local walk.
b)     Write a Letter or Send an E-mail. You can write a letter to your senator or representative on the state and national level to support Alzheimer’s research and legislation. Let them know providing services for families and finding a cure for Alzheimer’s is important to you. Share your story! Call your local chapter for information on current legislative issues.
c)      “Hug” a Caregiver. Providing around the clock care for a loved one leaves a person drained and stressed. The caregiver often needs some TLC too! Hugs come in many forms, especially random acts of kindness—a greeting card, flowers, a casserole, perform a household chore for the caregiver, or mow the grass.
d)     Learn the Facts. You can stay informed by signing up for email updates from the Alzheimer’s Association. Go to educational programs offered by your local chapter. Ask for brochures or pamphlets to address specific problems. Be sure to get information from reliable sources. Knowledge is power when dealing with Alzheimer’s disease.

If you think of these suggestions as a To-Do List, you see that it is only a beginning. These four items are within everyone’s reach, but you are the only one that knows what you can do to add to the list. It is personally rewarding to know that you can make a difference.

I saw a graphic a few days ago of a piece of paper and the only thing written on it was, “Write a To-Do List.” I laughed when I saw it, but you do have to begin at the beginning, after all. Checking off the “done” items is a visual reminder of the power each of us holds within our grasp. What one person can do is limited only by imagination and motivation.  
Copyright © April 2016 by L.S. Fisher

Sunday, April 17, 2016

Lost and Found

When I left for the Alzheimer’s Forum in D.C., I decided to hide some of my electronics. There’s no use in making life easier for a pesky burglar who might try to make a dime off my personal property.

I suppose if my PC was stolen, I could buy a new one. More important to me are the external drives that hold my photos and data files. I took one camera with me and hid the other. Also, before I travel, I lighten my purse. There’s no point in taking all my credit cards or gift cards. Heaven forbid that a thief would snatch my purse and abscond with my library card.

If you are going to hide something, even in a house as big as this one, you have to tuck away valuables somewhere other than the usual places: bathroom cabinets, back of underwear drawer, etc. My bad that I didn’t write down the creative hidey-holes I found. After all, I was going to be gone for nearly a week, and my mind was going to be spinning like a Texas tornado on a sultry summer day.

Sure enough, I spent an action packed time in D.C. Being around caregivers and persons living with the disease floods my heart with memories. The Alzheimer’s forum was emotionally draining this year because of the timing. April 5 was Jim’s homecoming from Vietnam. It was a special day for us, and we always celebrated.

Then, the trip home seemed more grueling than usual. I really had no complaints other than the plane ride was a little bumpy, and we landed in a forty mile-an-hour wind. I’m not nervous about flying at all, but I did breathe a small sigh of relief when the plane stopped, and the flight attendant said, “Ta-dum!” By the time I picked up my car and drove home, it was bedtime and I was exhausted.

After I caught up on my rest, it was time to gather up my hidden treasures. I couldn’t for the life of me remember where I had hidden my camera. I kept returning to a place where I thought I’d hidden it, only to come up empty. As I wandered aimlessly through the house, I saw something that triggered my memory and suddenly knew where it was.

Three days later, I remembered all the cards I’d taken out of my purse. After a moment of sheer panic, I re-checked the place where I thought I’d hidden my camera, now looking for something smaller. Whew! I could mentally check off the last item on my lost and found list.

I couldn’t help but think about another April anniversary. Eleven years ago, we lost Jim. That loss was so great that even though my mind knew it was coming, my heart wasn’t ready. As time ticks by today, I can’t help but think about those last moments of holding Jim’s hand, playing his favorite songs, and watching the light go out of his eyes. In the early morning hours of April 18, he left us.

Anger was the emotion that surprised me the most when Jim died. I was so angry that this horrible disease happened to him, to us, to our family. I was furious that he had lost ten years of being Jim before the disease took life itself from him.

I couldn’t stay angry forever, and eventually I found peace. I knew that given the choice, Jim would not have wanted to live the last decade of his life lost in the world of dementia. He would have much rather have spent the last years of his life strumming his guitar, fishing, playing with our grandkids, and camping out at Moraine Park in the Rocky Mountain National Forest. He would have preferred going out in a blaze of glory.

Jim was lost to this world, but I rediscovered my memories of him. You might say that I found them. As for Jim, I believe he found that cabin in the corner of Glory Land he used to sing about, and he walks a well-worn path to his favorite fishing hole.

Copyright © April 2016 by L.S. Fisher

Sunday, April 10, 2016

A Sea of Purple

Kathy Siggins, Linda Fisher, Sarah Harris  
I spent most of last week at the Alzheimer’s Advocacy Forum where every meeting and activity was virtually a sea of purple. I was joined by 1,199 other determined, and purple clad, advocates at our nation’s capital to  continue the fight for Alzheimer’s.

The forum runs like a well oiled machine and with this being my sixteenth forum, I knew what to expect. Mostly, I know to expect the unexpected: the moments that catch me off-guard opening up a forgotten memory; the personal stories; the hopes and fears of new advocates; the complete charm of a lovely woman in the early stages of the disease.

Each year, I meet new people and get to spend time with friends from other parts of the country that I see annually at the forum. The magical days of the forum are three musketeer time. My friends Sarah Harris, Kathy Siggins, and I spend as much time together as possible. It almost seems that we finish conversations we started the year before. As Sarah said, “In one way it doesn’t seem like a year, but in another way it seems much longer.”

Kathy and I did the tourist attractions Saturday afternoon and Sunday until aching feet drove us

indoors to relax and wait for Sarah’s arrival. Sarah was at a disadvantage this year with her broken ankle, but she managed to keep up with a handy-dandy scooter.

Sarah and I are ambassadors so we started a little early with the ambassador lunch and program. She and I discovered parts of the hotel we never knew existed. We made our way around on service elevators that opened into hallways leading to a bevy of unmarked doors. We soon learned to just keep opening them until we found the meeting room for the next session.

The forum officially began with the roll call of the states. This year those of us presenting our state’s accomplishments entered the room with much fanfare, following a band and waving our state flags.

The National Alzheimer’s dinner was special for Missouri Advocates this year for two reasons. First, Senator Blunt received a humanitarian award for advancing research funding for Alzheimer’s. He made us proud with his impassioned support during his acceptance speech.

The Second reason for Missouri Advocates to celebrate was when our own Pat Etienne, along with the Early-Stage Advisory Group, received the Advocate of the Year Award.

Of course, the highlight of the conference is always Capitol Hill day. Twelve hundred determined people wearing purple sashes draw a lot of attention. This year, we brought three issues to the attention of our legislators: (1) a request for a $400 million increase in Alzheimer’s research, (2) co-sponsors for the HOPE for Alzheimer’s Act estimated to save an amazing $692 million over the next ten years and (3) the Palliative Care and Hospice Education and Training Act (PCHETA).

I found out line dancing did not prepare me for the amount of walking required to go from the bus up the hill, back and forth from the Senate offices, where we visited Senators Blunt and McCaskill, to the other side of the Capitol to visit Congresswoman Hartzler’s office, and back again for the Senate Hearing.

I was reminded of the Princess and the Pea when I discovered a tiny ridge inside my most comfortable boots after putting several miles on my feet. Just when I thought I couldn’t take another step—it was time to go back to the bus stop.

Alzheimer’s is a scary disease, and honestly, I think that most legislators “get it.” They know we have to get a handle on this expensive disease or it’s going to bankrupt Medicaid and Medicare when we boomers get a few more years on us. I don’t want to spend my declining years not knowing my children and grandchildren.

On the elevator at the Marriott Wardman Park, a lady looked at my purple “Alzheimer’’s Association” sash and said, “Your group is so impressive. You are enthusiastic and really make a statement. Thank you for being here.”

I’m glad I could be there, but I’ll be even happier when it is no longer necessary!

Copyright © April 2016 by L.S. Fisher

Tuesday, March 22, 2016

Go Red and Purple for Women

Several years ago, my sister and I went to the War Eagle Mill Craft Fair and kept seeing different versions of “When My Sister and I Are Old, We Shall Wear Purple.” Of course, it goes on to say “with a red hat which doesn’t go.” Well, I guess that time has come. She is a member of the Red Hats.

I haven’t joined that organization, but when I wore red to Go Red for Women, I carried the purple purse I bought for the Alzheimer’s Forum. Yes, it was a little too much trouble to switch everything for one day, and no, I don’t care one whit that purple doesn’t go with red.

The combination of colors though, got me to thinking—both colors are symbols of diseases that affect women differently than men. One thing I’ve learned from the Go Red events is that women sometimes don’t recognize the symptoms of a heart attack. A woman can have a silent heart attack and not even know it. She may think she has indigestion, the flu, or that she’s strained a muscle. Instead of her chest hurting, she may have jaw pain or pain in the upper back or arms. She may just feel tired all the time.

Alzheimer’s affects women differently too. More women are caregivers for a loved one who has Alzheimer’s and suffer from depression more than male caregivers. Female caregivers who work are more likely to have problems absenteeism and are more likely to quit their job completely. I was fortunate to have flexible hours and understanding managers and co-workers.

Red meets purple at the junction of the heart/brain connection. Researchers believe that what is good for the heart is good for the brain. A heart healthy diet may not only keep your heart in better shape, but could also reduce your risk of developing heart disease.

Your mother was trying to get you off on the path to health when she insisted that you eat your vegetables. Nuts, berries, fish high in omega-3, beans, tomatoes, and a small glass of red wine, and you can eat your way to a healthier heart and brain.

When I wear my red and purple, I won’t think about being old enough to throw those odd colors together. Instead I’ll  think about how I can use the combined wisdom of the American Heart Association and the Alzheimer’s Association to be a healthier person for the rest of my life.

As far as my personal health goes, I can’t think of any two body parts more important to me than my heart and my brain.  

A glass of red wine and dark chocolate go a long way toward making life more enjoyable. If it improves our overall health, well, I’ll raise my glass in a toast to healthier, happier women.

Copyright © March 2016 by L.S. Fisher

Tuesday, March 15, 2016

Memory Day 2016

Jessica Snell, Rep. Dohrman, Linda Fisher
Advocates from the three Missouri Alzheimer’s Association Chapters annually converge on our State Capital to take action against the Alzheimer’s epidemic. We come with facts in hand: Alzheimer’s is the sixth leading cause of death; 110,000 Missourians have Alzheimer’s; 70 percent live at home; 312,000 unpaid caregivers; and the value of unpaid care in Missouri is estimated to be $4.3 billion.

Each year we visit with our legislators about Alzheimer’s Grants for Respite. This year we were asking for $450,000 to be placed in the budget for the Department of Health and Senior Services. We had sample stories to share about the need for respite, but I shared my own story.

I was working when Jim developed dementia at 49. Since I wanted to keep him at home as long as possible, I looked into assistance that might be available. It so happened that since Jim was so young, he did not qualify for the programs in place for seniors. I turned to the Alzheimer’s Association, and they gave me the only help I was able to find—respite funds.

Did these funds cover all the costs? Not by a long shot. As a fulltime employee, my needs were above and beyond what this kind of program would cover. The real beauty of respite is that a caregiver can have some time to him- or herself.

It is common for a caregiver to burn out. Some of the common side effects of caring for a loved one with dementia include depression, stress, lack of sleep, health problems, and a sense of being overwhelmed. A primary caregiver has been thrust into a situation beyond the imaginable.

Stacy Tew-Lovasz, president of the St. Louis Chapter, pointed out during the Memory Day Ceremony that women are greatly affected by Alzheimer’s. Women make up more than 60% of the caregivers. More than two-thirds of those affected with Alzheimer’s are women.

I can tell you by experience that after being a primary caregiver, you have a great dread of developing Alzheimer’s. How sad is it that a woman would spend a decade or more being a caregiver and then develop the disease?  

When Jessica Snell and I visited with our representatives on Memory Day, we pointed out that the $450,000 could save Missouri taxpayers $2 million. I know that may seem unlikely to some people, but here is how we arrive at that savings: 800 respite families X $152 average nursing home cost per day X 30 days delay in Nursing Home placement X 60% of Nursing Home residents on Medicare = $2 million savings in Medicaid Nursing Home Care.

Honestly, I think the estimate is on the low side. Surveys show that 99% of respite recipients said they were able to keep their loved one at home longer. In-home care allowed me to keep Jim at home for about an additional six months. No, respite did not pay for all that, but respite reimbursement helped me manage the expense.

Memory Day is a special day for Alzheimer’s advocates to share our message with our Missouri representatives and senators. They need to hear from us so that our respite funds don’t get put on the back burner.

One thing you learn in advocacy training is to make the “ask.” We were heartened to learn that we had their full support with the magic word, “Yes.”

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