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

Thursday, March 10, 2016

Cornerstone

Last week, the downtown location of our church burned to the ground. The church was built in 1888. It must have been an exciting day when the cornerstone was laid, most likely with great ceremony.

People mourned the loss of the building that hosted weddings, funerals, baptisms, community gatherings, Christmas programs, and Easter services. Older members would remember more formal times when Sunday school classes were filled with little girls in frilly dresses and little boys with their hair slicked down wearing uncomfortable shoes.

We are fortunate that First United Methodist Church has a south campus—the Celebration Center, where I go to early church. Sunday morning, a third service has been added to accommodate the parishioners of the downtown church.

We all know that church is not a building, it is the congregation. Yet, to see the rubble where a magnificent house of worship once stood brings a special type of sadness. The cornerstone was one of the few artifacts salvaged from the site.

Besides a physical stone, a cornerstone can be a person of prime importance. Many families have a cornerstone. Sometimes they don’t even realize who that cornerstone is until something happens to them. I’ve seen families fall into disarray when the cornerstone of their family develops Alzheimer’s.   
Jim was the cornerstone of our family, but we couldn’t allow ourselves to collapse when he started to change. Once we realized Jim’s dementia wasn’t going to get better, I expected to mourn the big changes. Over time, I realized the nuances of his personality changes were equally heartbreaking.

I think what I missed the most was our daily routine. I missed our conversations over morning coffee. Dozens of little moments throughout the day were out of kilter. He no longer dropped by work with a single red rose or took my car to the station to put gas in it. Day’s end was different. For two decades we went to bed early and both of us read our books.

New routines replaced the old. Conversations became one-sided monologs. Sometimes, I read to him. I learned to put gas in my car. I placed a single red rose next to his urn before they sealed the niche at the Veteran’s Cemetery.

Life goes on. It really is true that you don’t know how strong you can be until it’s your only choice.

The cornerstone in a building is a prominent, special stone at the intersection of two walls. The cornerstone from the downtown church was saved and placed in front of the Celebration Center where we placed small stones of remembrance on it.

In a family, the cornerstone is the pivotal person at the heart of the family. Once that special person is gone, we cherish our memories and  honor our loved one by living life to the fullest.   

Copyright © March 2016 by L.S. Fisher

Sunday, February 28, 2016

Who Am I?

Lake Honor, College of the Ozarks
When I was at the College of the Ozarks, students would drop out of school to “find” themselves. It’s not as if they were lost physically, they just couldn’t seem to decide what they really wanted to be when they grew up—if they grew up. We’ve all known someone with a big ego and a strong sense of self. We’ve met people who seemed self confident one day and uncertain the next. Then,others who never trusted their own judgment, or believed they were worthless. They couldn’t find their own value and wondered, Who am I?

Fragile egos aside, no matter how much my friends questioned who they were, they always knew their names and backgrounds—real and embellished. They knew their brothers, sisters, friends, boyfriend or girlfriend. The only thing they were unsure of was why they were on this earth and what their purpose in life was.

I dropped out of college to pursue my own destiny. My imagination has always been darned active, but for my life to have been any different is unimaginable. My life certainly didn’t follow the plans my youthful self made for my future, but I wouldn’t change any of it. The road I followed brought me to Jim and the family I cherish and the experiences that made me who I am today.

Don’t get me wrong, everything wasn’t peachy pie perfect. We hit some bumps, big and small, along the way. We made mistakes. Vietnam changed Jim, dementia changed him even more. But I don’t think Jim lost track of who he was, or who he loved, and who loved him. Even when he couldn’t say the words, his eyes would light up from time to time, and you knew he was there. Inside.

As the present slipped from his memory, he remembered the past. Jim grew up in a large itinerant family. They would pile into a car and head across the state, or country, depending on where they could find work. Home was where they were at the time—it might be a rental house, a camper trailer, a tent, under a tree, or with relatives. That kind of life might not be for everyone, but Jim saw it as a series of adventures. He loved reminiscing about the people he knew, the places he went to school, and the sites he’d seen.

So, when his short-term memory faded, he spent quality time in the glory days of his youth. He never had to find himself, because his heart was the same. A lot of things changed as Jim became more dependent on others to provide his personal care.

People often asked me if Jim knew who I was. He rarely spoke, so he didn’t call me by the wrong name. I do know that one time when I was at the Alzheimer’s Forum, someone at the long-term care facility tried to shave him, and Jim pushed the razor away. “Linda,” he said. His mom got a kick out of that. She said he didn’t want anyone else to shave him because he knew I’d be back to do it.

Jim may not have known who I was all the time, but I always knew him. I learned to love who he was through each stage of the disease. When he became more childlike, I knew his roots from the stories he had shared with me.

For those of us who have our short- and long-term memories intact, we shouldn’t question who we were. We should not just be determined to be the best person we can become when we grow up—if we grow up. Knowing just exactly who we are, our faults and our strong points, could be key to being the best person we can be today.    

Copyright © February 2016 by L.S. Fisher

Saturday, February 13, 2016

The Heart Remembers

An Arkansas man with Alzheimer’s, eighty-three-year-old Melvyn Amrine, disappeared. His wife, worried that he was lost, called the police. When the police found him, Melvyn told them he had always bought his wife flowers for Mother’s Day, and he was on his way to the store. The officers made a stop on the way home for Melvyn to make his purchase. He came up a little short, but the officers made up the difference. His wife, Doris, said it almost broke her heart to know that he still loved her. She said, “It’s special, because even though the mind doesn’t remember everything, the heart remembers.”

Although this event happened on Mother’s Day, it epitomizes the love we all dream of for Valentine’s Day. There is nothing like having true love to warm your heart any day, but especially on the day dedicated to matters of the heart.

What is love anyway? Merriam-Webster’s first definition is “a feeling of strong or constant affection for a person.”

Your ability to love is personal. Early in life, you love a lot of people: parents, children, sibblings, cousins, and friends, but most of all, you love yourself. As a child, you may think you are the center of the universe and everybody revolves around you. When you don’t get your way, “I hate you,” may pop out of your mouth with no regard to how hurtful it may be.

As you grow older, you become more interested in the second definition of love, that is, “attraction that includes sexual desire: the strong affection felt by people who have a romantic relationship.” Crushes are often mistaken for love. When love is unrequited, there is a fine line between pursuing your heart and becoming a stalker.

Love hurts when you lose a person you love. Regardless of how that loss comes about, you can either harden your heart or fill it to the brim with more love.  

The real love prize goes to soul mates, or two people who love each other. Most of us know the Biblical definition of love: “Love is patient, love is kind.” A lot of wisdom follows with the verse that says, “It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.”

When  you are married to someone with Alzheimer’s you have a special relationship and a different kind of love. What had been reciprocal becomes unconditional. Shared memories become individual.

Much is lost, yet much remains. Love is shown in non-traditional ways. Possibilities abound for showing love for a spouse with dementia. My friend Jane said that her heart overflowed with love for her husband when she combed his hair.

When you truly love someone, you realize that you are not the center of the universe—your loved one is. Yes, the mind forgets when Alzheimer’s attacks the brain. But never underestimate the power of the heart. Romance becomes less important, but love is victorious when you place someone else’s needs before your own.

Happy Valentine’s Day, caregivers. Yours is the most remarkable love.

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