Presentations

Saturday, March 28, 2009

Purple Passion for Alzheimer’s at the Public Policy Forum

When Jim and I became engaged April 5, 1969, our colors were purple and yellow. Jim would tell me, “I love you with a purple passion,” and then he would add, “with a yellow racing stripe.” You have to realize that in 1969 racing stripes were really cool.

Purple is the signature color of the Alzheimer’s Association. I really don’t know why they chose purple, but the color can still be associated with passion.

My sister, Roberta, and I arrived in Washington DC a few days before the Alzheimer’s Association Public Policy Forum. We visited historic landmarks and attended services in the National Cathedral on Sunday morning. Cherry blossoms verged on blooming, and we couldn’t have asked for better weather.

Through past experience, I’ve found the most essential item for DC is comfortable shoes. Even with comfortable shoes, we managed to return each night with weary legs and aching feet. Everything in Washington DC is bigger than life—including the distance between buildings and monuments.

We joined more than five hundred advocates to bring passion to Capitol Hill. Twenty-four delegates from Missouri experienced the Alzheimer’s Association’s 21st Annual Forum. Four advocates in our group have been diagnosed with early or younger onset Alzheimer’s.

Mike Splaine, Alzheimer’s Association Advocacy guru, said because the Alzheimer’s crisis is gradual it is in danger of being overlooked. He said we needed passion and intensity to bring about change and take steps to make Alzheimer’s disease a national priority.

Maria Shriver, first lady of California, wasn’t satisfied to merely attend the forum—she wanted to experience the forum. She made her first appearance at the candlelight vigil Monday evening. After speakers passionately talked about their journeys, we lit our candles of remembrance and hope for a future without Alzheimer’s.

On Tuesday, Maria introduced a preview of an upcoming four-part HBO special about Alzheimer’s. The heartbreaking message ended with the word HOPELESS truncated to read HOPE.

Our group of 500 stormed Capitol Hill with purple sashes making us stand out from the crowd. We visited our respective senators and representatives to speak with one voice.

Our legislative “ask” was streamlined this year to three issues. Research was at the top of the list. We asked for an additional $250 million this year and another $250 million in 2010 to reach our illusive $1 billion goal. The annual total cost of Alzheimer’s is $148 billion. If $1 billion in research funding could reduce the annual cost by a small percentage it would be a wise investment.

Secondly, we asked for an Alzheimer’s Solutions Project Office. This office would be charged with leading a national effort to reengineer dementia care delivery.

We also asked for a phase out of the social security two-year waiting period for Medicare. Expensive diagnostic tests are sometimes delayed due to the waiting period. Early drug intervention may also be postponed past the time when it does the most good.

The “2009 Alzheimer’s Disease Facts and Figures” highlights the prevalence of the disease. Alzheimer’s is a family disease, and every 70 seconds another family begins this journey. Seventy percent of the 5.3 million Americans with Alzheimer’s are cared for by 9.9 million unpaid caregivers.

Alzheimer’s Statistics can be alarming, but personal stories are the heart beat behind the numbers. When a legislator looks into a caregiver’s sad eyes or into the confused gaze of a person with dementia, we become more than a number. We humanize the emotional and physical drain of a degenerative and fatal brain disease.

Jim was in a nursing home when I made my first trip to Washington DC. His dementia often made me feel helpless and hopeless. The trips helped rejuvenate my spirit and gave me purpose. I am friends with many amazing people that advocacy brought into my life. Being an advocate is personally rewarding and I believe it is important for those with Alzheimer’s and their families.

This was my ninth trip to Washington DC as an advocate. Jim died in 2005, but I continue to make the trip in his memory. Each year, when I prepare for the Public Policy Forum, I take my purple passion and pack comfortable shoes.

Thursday, March 19, 2009

What Would Jim Do?

Jim was a disabled veteran and received compensation from the government. While he was in long term care, I sent his veterans and social security checks to the nursing home. Jim died in 2005 and the checks stopped.

I was surprised to receive a letter from the Veterans Administration admitting that some surviving spouses had not received the veteran’s compensation for the month the veteran died. Apparently, after all this time, the VA realized they should have sent one more check to me.

Since it took almost four years before I received the letter, I wasn’t expecting the check anytime soon. To my surprise, it came a few weeks later.

In my mind this was Jim’s money and my first question was, what would Jim do? We were married more than 35 years, and I had a good idea what his wishes would be.

Jim had received a few windfalls over the years, and he always knew exactly what he wanted to do. Whether it was a $700 winning lotto ticket or a $10,000 settlement, he never considered spending the money on himself. He always had someone in the back of his mind that needed cash more than he did.

It took me awhile to understand his philosophy. We went through a lot of hard times when we were younger, and often I felt like we needed the money. He always had faith that we would get by, but he wasn’t so sure about everyone else.

Somewhere along life’s journey, I learned that the more you give, the more you receive. I’m not talking about gift exchange. Jim didn’t care for or even believe in gift exchanges. When he gave it was never, ever because he expected something in return. It was because he just felt it in his heart. He would open his billfold and hand over his last dollar to someone he loved.

He wouldn’t have wanted this unexpected check to be put in the bank. I know he would want the grandkids to have something from “Grandpa Jim” so that was the easy part. The more I thought about it, I knew where he would want the rest of it to go.

It makes me feel good to know Jim’s giving spirit can reach out and lend a helping hand to people he loved. In my memory, I can see him smile and his eyes light up. I can’t think of a better use for Jim’s check than to honor his legacy of love.

Saturday, March 14, 2009

Missouri Advocates at State Capitol for Memory Day

I am an Alzheimer’s Advocate and participate in Memory Day at the state capitol in Jefferson City. Wednesday, I made my annual trip to speak to my legislators. My sister-in-law, Ginger, went with me this year.

The biggest challenge of Memory Day is finding a place to park. How every parking space within miles of the state capitol can be full is a mystery to me. I looked for parking place close to the Truman Building. My first mistake was trying to go in the entrance that is now barricaded with pylons to discourage terrorists, I suppose. I went around the block only to discover the other side had only an exit. I shot across a bridge to nowhere, turned around in a parking lot, and drove back around the block.

I trolled the parking lot while Ginger kept a sharp eye out for an empty slot. After cruising all around, we exited that parking lot and entered the one across the street for a more realistic chance. Finally, in the second to last row, we found an empty parking place. With perfect positioning, we were able to exit the car without stepping into the lake-size mud puddle that surrounded the front half of the car.

My cell phone rang just as I hopped over the puddle. It was Ike Skelton’s office setting up a time for our visit during the Public Policy Forum in Washington, DC. I juggled my bag and wrote the time in my calendar.

A March wind gusted around us as we headed toward the capitol building. Ginger and I wore pictures of Jim over our hearts. In the photo, Jim wears his Stetson and looks like a movie star or country-western recording artist.

After a short training session, we found a seat in the rotunda for the ceremony. The ceremony opened with a “Hello” song and drummers. After the awards and recognition, we began our legislative visits. We made a statement by donning purple “Alzheimer’s Association” sashes. It’s really hard to ignore 240 people wearing “beauty queen” sashes!

During our visits, the senate debated and passed SB176 which calls for the creation of a Missouri Alzheimer’s State Plan Task Force. This Task Force will assess the current and future impact of Alzheimer’s disease and examine the resources available for families affected by dementia. After their assessment, the Task Force will develop and implement recommendations to help Missourians take a proactive approach to make life better for the 110,000 Missourians with dementia, their caregivers, and families.

Our other objective is to maintain funding for Alzheimer’s Service Grants. The grants help the four Missouri Chapters continue with their important mission to provide services and support to families who are on the Alzheimer’s journey.

I consider myself to be a poster child for these services. Respite funds provided by the Mid-Missouri Chapter were my only financial support while Jim lived at home. The Alzheimer’s support group and educational programs helped me be a better caregiver. As a person who’s been there and done that, I know the life-changing possibilities of the $539,000 service grants. These grants save Medicaid dollars by delaying admittance to expensive nursing homes. As advocates we asked our senators and representatives to support these two priorities.

We make a difference when we share our personal stories with our legislators. The heart of Memory Day isn’t about politics, it’s about the people we know and love who are living with dementia, and our living memories of the ones lost to the disease.

Saturday, March 7, 2009

Reality TV: The Final Rose--or Not

Just when you think reality TV can’t get more unreal, “The Bachelor” might as well have passed out dead roses instead of red roses. Don’t get me wrong, I believe in love. I just don’t believe love happens because a producer chooses a group of attractive women to act like idiots over one eligible male. The Bachelor in question doesn’t seem to have many requirements, including a stable personality.

I’m not much of a Reality TV fan. I used to watch people eat spiders and leap off tall buildings on Fear Factor while I fed Jim at the nursing home. Not for a million dollars would I jump between skyscrapers or dive into a tank of snakes.

Survivor has never interested me. I watched the Great Race a few seasons and found it to be entertaining at times. American Idol is my favorite! At least that requires a degree of talent. Thank goodness Tatiana got sent home because she gets on my nerves.

I’ve become bored with the multitude of bachelors over the years and admit that several seasons have slipped by when I haven’t watched a single episode. I could just barf if I watch one more hot tub scene or a woman wailing and gnashing her teeth because, “I’ll always love him, but he didn’t give me a rose!” Get real. How do you fall in love with a shallow, one-dimensional player who is coming on to twenty-four other women at the same time?

The camera caught all the details of the dramatic, long-goodbye when Molly got the boot. Her tragic and crushed figure rode into the sunset in a limousine. Tears glistened on her cheeks and her eyes brimmed. “He’s making a big mistake,” she sobs.

Jason shows his own anguish by bawling his eyes out before he regains his composure in time to fall on one knee and propose to Melissa. They jump into the water wearing their good clothes. I suppose ruined outfits are a small price to pay for the artistic value of the happy couple and little boy, Ty, frolicking in the water.

Jason proves to be fickle-hearted and dumps his fiancĂ© on national TV to re-choose his second choice, Molly. He said he just couldn’t quit thinking about Molly. Thinking is not Jason’s strong suit.

Melissa, needless to say, is a little ticked at him. She speaks of herself in the third person, which makes you wonder about her stability. The drama continues when Molly comes out and learns of the new developments in the love triangle. Molly could have been a credit to all womankind had she looked him in the eye and said, “I am SO over you!” Instead her caught-in-the-headlights eyes dart as if she expects someone to yell, “Just kidding!” The show ends with Molly and Jason falling into each other’s arms and locking lips.

Do any of these people know what love is? Maybe, but more likely not. No pressure, but fall in love and propose by the final episode. I think it’s more likely the bachelor just tosses a coin. It’s a game, and the choice doesn’t really matter. He doesn’t plan to really marry the girl anyway and by the time the final episode airs, the happy couple is no longer a couple anymore.

Yes, I believe in love and I believe in reality, but I’m skeptical that love and Reality TV are a marriage made in heaven.