Sunday, May 30, 2010

Memorial Day Weekend Ahead

I’ve heard that some people fear public speaking more than death, but I enjoy speaking when I know my subject well. Because of Jim’s dementia, Alzheimer’s is a subject that I have become intimately acquainted with over the past fifteen years.

Some of my presentations are more lighthearted than others, but the one I was scheduled to give at 6 PM Friday night—the day that marked the beginning of Memorial Day Weekend—was Dementia Specific Training for a group of in-home service providers. When my contact, Tracy, suggested the last Friday of May, I had no plans to go out of town for the weekend so it fit nicely into my schedule.

The closer the time came for the program, I kept thinking about how I would be standing between a group of workers who had finished their workweek and a weekend of fun, sun, and getting away from it all. How restless were these hardworking individuals going to be when their holiday was delayed by a full one-hour of training? Would they pay attention, or were they going to keep checking their watches and mentally be on the way to the lake for a weekend of boating?

Before I began, I handed out note sheets with several fill-in-the-blank statements for each of the areas covered during the training: An Alzheimer’s overview, Communications and Behavior, daily activities, and helping families cope.

“This dementia specific training is important to provide good care for your clients with Alzheimer’s. You can fill in the blanks on the note sheet as we go.”

It didn’t take me long to discover the audience was attentive, asked questions, and shared some of their personal experiences. One lady was a primary caregiver for her mother who had Alzheimer’s and another expressed her concern that her husband was beginning to show signs of dementia. A young lady told me she couldn’t visit her grandmother at the same time as her mother because they looked too much alike and grandma was confused as to which one was her daughter.

It was an interactive discussion with a group that was eager to learn and took notes in addition to the fill-in-the-blank forms I had given them. I forged onward, as they interwove their personal experiences into the context of the training session. By being part of the program they took ownership of the information they needed.

I ended by reading “Honor Our Everyday Heroes” from Early Onset Blog: The Friendship Connection. As I read, I glanced up to see participants brushing away tears. My voice broke slightly on the words, “I think about how Jim told our sons they were his heroes, and how prophetic his words would become. They truly became his heroes when they cared for him with love and respect as he faded away.”

After the presentation, some left in a hurry to begin their weekend, but a few lingered for more discussion and to get some pamphlets I had left in the car. After our final goodbyes, I started my car to hear the opening bars of “Jingle Jangle.”

A rush of feelings swept over me as I instantly flashed back to Honolulu, Hawaii, 1969, and a small chapel where Jim and I exchanged the vows that marked the beginning of our life together. On our wedding day we heard “Jingle Jangle” for the first time and dubbed it “our” song.

I thought about living on Humboldt Street in Manhattan, Kansas, and how one night we were shopping and heard “Jingle Jangle” and followed the sound to a stereo system. Seeing it as a divine sign, we bought the walnut stereo cabinet once they agreed to include the “Jingle Jangle” album.

I became lost in the feelings of 1970 when we held our newborn baby in our arms and celebrated with Mama Burgers and Papa Burgers at A & W. Life lay ahead of us like a yellow brick road leading us from Kansas to a wonderful land “somewhere over the rainbow.” Hopes and dreams helped us through the hard times of too much month at the end of the money.

The song ended, and the sixties drifted to the back of my mind to rest in the area of my brain where I store my long-term memories. I put my car in drive and left the parking lot. My mind was already on the weekend ahead—a time for honoring those who served our country and remembrance of love that is never truly lost.

Sunday, May 23, 2010

Change the Trajectory of Alzheimer’s

For the past ten years, I’ve joined with other Alzheimer’s advocates to proclaim loud and clear that Alzheimer’s disease will have a detrimental impact on this country’s financial future. We who advocate for Alzheimer’s research and programs sometimes feel neglected. Mega resources are spent on diseases that are better known or understood, or sometimes trendy in the sense that it catches the attention of the media or a popular celebrity.

The first hurtle for Alzheimer’s advocates is to educate legislators, and the American public, that Alzheimer’s isn’t a joke about people getting older and more forgetful. We point out, politely of course, that Alzheimer’s isn’t getting much of the National Institute of Health’s research pie and still far short of the $1 billion goal we had the first year I attended the Public Policy Forum.

The Alzheimer’s Association has just released a report “Changing the Trajectory of Alzheimer’s Disease: A National Imperative.” Research dollars for Alzheimer’s is pushed to the bottom of the list—after all, it affects only elderly people, doesn’t it? It’s just a little forgetfulness, isn’t it? There is medication that slows or stops the progression, don’t you know? The answers to those questions are wrong, wrong, and wrong again.

Alzheimer’s is an incurable brain disorder that brings about brain cell death. It is an economic and emotional hardship on the family when their loved one is diagnosed with dementia. Harry Johns, President and CEO of the Alzheimer’s Association, said, “Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s.”

As advocates, we tell our personal stories and rely on staggering statistics to persuade legislators to allocate more funds to eradicate this devastating disease. Alzheimer’s has forever changed the lives, and dreams of more than five million Americans.

An investment in research now can drastically change the trajectory of Alzheimer’s. Without effective treatment or a cure we can expect the number of people 65 or older with Alzheimer’s to increase from 5.1 million today to 13.5 million by the middle of the century. This is the human tragedy of the disease. Financially, by the time Medicare, Medicaid, medical expenses, and providing care are factored in—Alzheimer’s disease will cost the United States $20 trillion (with a T) over the next forty years.

Of course, the ultimate goal is to find a vaccine to prevent Alzheimer’s or treatment that will cure the disease. Even a five-year delay would reduce the 2050 numbers to 7.7 million instead of the 13.5 million projected to develop the disease.

When Jim developed an Alzheimer’s type of dementia, I learned what an un-funny joke it is. I received the wakeup call informing me that dementia doesn’t just affect the elderly. Jim was only forty-nine when the relentless process began. After ten years, the disease won—just like it has 100% of the time. The only survivors at Memory Walk are the family members who learned that through perseverance, faith, and unconditional love, they can endure the decade or decades leading to the journey’s end.

Has the time come that we need to end our polite request for Alzheimer’s research dollars? Has the time come for us to demonstrate the same perseverance for research that we showed to survive caregiving, or living with a disease without a cure?

A first step is to push for the National Alzheimer’s Project Act. This legislation would develop a national plan through a National Alzheimer’s Project Office. With the combined efforts of stakeholders in the disease—caregivers, people with the disease, providers—and federal government agencies, a comprehensive plan could be devised to address all the issues caused by Alzheimer’s. Not only do we need research so that someday we have survivors, we also need programs for those living with the disease.

Age does not cause Alzheimer’s, but it is the No. 1 risk factor. Without a united effort to find the elusive cure for this disease, those of us who live to be eighty years old will have a fifty percent chance of developing Alzheimer’s. I don’t think it is selfish of me to admit I don’t want to spend the last years of my life with a brain disorder that will rob me of my memories. The time has come to kick our advocacy up a notch to change the trajectory of Alzheimer’s.

copyright (c) May 2010 L. S. Fisher

Monday, May 17, 2010

Making More Sense out of Fewer Dollars

At our last human resources meeting, our speaker’s topic was helping families in financial crisis. It made me think about families dealing with the emotional and economical strain when a loved one has dementia.

Our speaker, Cynthia Crawford, with the extension office, has seen an alarming increase in the number of people who find themselves in financial distress. No one wants to change their lifestyle, but hard economic times call for taking action to reduce the adverse consequences.

Employment has turned into shaky ground for a lot of people as financial woes beget more financial woes. Retired people see their nest eggs dwindle, not through spending, but through an unpredictable stock market or low interest rates on investments.

We all know that as our income increases, we proportionally step up our standard of living to match. This is perfectly acceptable, as long as we put money aside for emergencies—or as our parents always called it—for a rainy day.

When our family hits a financial crisis and income plummets, it is human nature to want to hold to our standard of living. In fact, our first reaction is denial that we need to take action. Our standard of living is closely connected to our self-esteem, and we begin to think we are failures if we can’t pay our country club dues.

First thing you need to do, according to Cynthia, is cut expenses. Pay your mortgage, utilities, and insurance first. If you don’t have enough left to pay other bills, call the people you owe and explain the circumstances. They will be more willing to work with you, if you make the first contact.

Giving your attention to what you need rather than just what you want can lower your stress levels. Eating at home is healthier and cuts costs in two ways. You pay less for meals and don’t throw away leftovers or food that spoiled while you pick up fast food at a drive-thru window.

Cynthia has some good advice for those who may lose their jobs. “Don’t sit in the basement and sink into depression.” If you have lost your job, you’ve lost precious time if you do not immediately sign up for unemployment. Unemployment is not retroactive and if you don’t sign up for it, you get nothing. I might add that if you lose your job because of Alzheimer’s, sign up for disability.

When Jim was diagnosed with dementia, I was fortunate to have a good job with health insurance benefits. We made it through the years he lived at home partly because we had always lived within our means and found great pleasure in the simple things in life—camping, fishing, and spending time with family and friends.

No matter how frugal you may be, long-term care may be beyond your means, and we were no exception. When my sons and I toured nursing homes, the first bit of information I learned was that I didn’t earn enough money to pay the monthly bill! Through the Alzheimer’s Association support group, I learned about division of assets. Sure, we had to sacrifice some of our dreams—we sold our lake property and Jim’s truck, cashed some CDs, and disposed of other possessions.

In personal life, as in business, downsizing is preferable to losing it all. I still live in the house Jim and I build with our own hands, and I’m not facing a lifetime of debt from his five-year stay in long-term care.

Other good advice from Cynthia is to ask for help. Check into local agencies that provide support and services that could help you through the transitional period while you bring your financial situation back into balance. To get help, you have to ask. People or agencies that can help you may not have any idea that you are in crisis.

If having a family member with dementia has thrown your financial world into a tailspin, don’t give into despair. Instead, look at it as a challenge to your ingenuity and grit. Check into all available resources, and ask for help. Take stock of your way of life and work out a plan to protect your family and the possessions that are important to you.

copyright (c) May 2010 L. S. Fisher

Saturday, May 8, 2010

My Other Mother

When Mother’s Day rolls around, we pause to think of how to honor the woman who gave us life. We might order flowers, buy gift cards, take our moms out for a nice dinner, and find the perfect Hallmark Card.

On this special day, I can’t help but think of my other mother—my wonderful mother-in-law, Virginia. From the first day I met her, she treated me with love and respect. She was both nurturing and feisty. She was compliant and stubborn. Virginia could be meek, or fierce, depending on the circumstances.

Virginia had a multifaceted personality except when it came to love. Her love for family was unconditional and unwavering.

And there was no doubt Virginia was a wonderful cook. She could whip up a pie in a few minutes—her capable hands shaping pie dough with the confidence and ease of an expert chef. Virginia’s light rolls and biscuits were to die for. At Christmas time, she made countless tins of divinity, peanut brittle, sugar cookies, and chocolates. She packed them up and mailed them to relatives in Oregon.

Jim was always willing to help his mother in any way he could. He built her a home. He didn’t hire it done because we were on a tight budget and didn’t have the resources for that. He strapped on his tool belt and worked on it day after day until it was finished.

Virginia lived next door to us—originally we thought that meant she would be close so we could look after her. It turned out that she was the one that took care of Jim during the early years of his dementia. She fixed all his meals, kept an eye on him, and when he wandered off, she drove the roads until she found him. Because of her, Jim was able to stay home for five years.

After we made the tough decision to place Jim in long-term care, his mom visited him nearly every day. She fed him when he could no longer feed himself. She became acquainted with the staff, and they came to love her for her nurturing care of her son. Of course, the big tray of cookies and candy at Christmas helped too.

Her mother’s heart must have cracked each visit, but she never wavered. She outlived her son, and I know that was one of the saddest moments of her life. She found comfort knowing that Jim was in a better place. In her last moments of life she saw the gates of heaven awaiting her. Virginia smiled as she told us a large crowd was waiting for her—and in front she saw Jim, her brother Tubby, and “Dad” meaning her husband, Bill.

Her death was a much a shining example of how to live as her life had been. On this Mother’s Day weekend, I think of Virginia, my other mother, and miss her still.

copyright (c) May 2010 L. S. Fisher

Sunday, May 2, 2010

Fried Chicken, Gooseberry Pie, and Memories

The rain yesterday made me nostalgic. I couldn’t stop thinking about my brothers and sisters, my mom, Grandma and Grandpa Whittle, and other bygone times. I grew up in the Ozarks and perhaps it was the wind blowing through the trees as storm after storm passed by that had me thinking of the woods of home.

Whatever the reason, I never left the house until late afternoon for my annual trip to Jefferson City for the chicken dinner fundraiser hosted by the local Alzheimer’s Association Memory Walk Committee.

I started going to the dinner and auction years ago when my friend, Ted Distler called me up. “Linda Fisher,” he would say, “are you coming to our chicken dinner this year?”

“Of course,” I always answered. “I love fried chicken.”

Fried chicken always makes me think of Sunday dinner when I was a kid. My mom used to cut up chicken, roll it in flour and cook it in heavy cast iron skillets. It took a lot of chicken to feed a family with eight kids. The meal at the chicken dinner last night was much like what we had—crispy chicken, mashed potatoes and gravy, green beans—they even had chocolate sheet cake for dessert.

“Well, we have a gooseberry pie to auction off,” Ted would taunt during his annual calls. Ted and I were lively bidders on the gooseberry pie. He usually won, and that’s saying something considering how competitive I am.

This year, I bought two tickets from one of the coordinators at the Caregiver Conference. That’s when I heard that Ted wasn’t planning on being at the chicken dinner. I called him and, reversing roles, tried to talk him into coming. I thought he was convinced, because, after all, who was going to bid against me on the gooseberry pie?

After eating fried chicken, I perused the live auction items. Two things caught my eye—gooseberry pie and an oil painting of Native American pots. Ted wasn’t there to save me from the gooseberry pie, so I bought it for a mere $55. After I bought the oil painting (along with two others), my friend and I headed home.

“If you have milk, I have pie,” I announced, like that was a secret.

Boy, did my taste buds come alive when I took my first bite of the pie. It tasted just like the pie my grandma used to make from the gooseberries grandpa picked. I closed my eyes as I savored the flavor, and a rush of memories whirled through my brain like a good old Missouri tornado. I saw my Grandma and Grandpa Whittle and me in our straight-back chairs in the backyard of their little house north of Stover. Grandpa had gathered a big bucket of gooseberries, and we all stemmed them. I loved stemming gooseberries and talking with my grandparents.

I remember putting salt into the palm of my hand and dipping wet, raw gooseberries in the salt. The tangy flavor made my mouth water, and my jaws locked from the flavorful burst of the berries when I bit into them. The only thing better than raw gooseberries was grandma’s pie and a cold glass of milk.

I picked up the pie plate from the auction and saw a label on the bottom. This wonderful pie, which turned out to be worth more than the $55 I paid for it, was the creation of Esther Kempker. Now that I’ve had a taste of her pie, Ted better be prepared to go the distance, or he’ll never outbid me again.

Thinking about the gooseberry pie makes me hungry—and I haven’t had breakfast yet, unless a banana counts for the most important meal of the day. It may be decadent to eat pie for breakfast, but my heart is telling me to pour a glass of milk, cut a piece of pie, and close my eyes to feel the love.

Copyright (c) May 2010 L. S. Fisher
Boomer Blog: