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.


Karen H said...

Thank you for all your advocacy. For years I have wanted to attend the conference in Washington, but I've never had the opportunity to do so while caring for my husband. One of the social workers we've connected with through the years is going and she asked a few of us to write out our stories so she can bring our message with her. I applaud you for all that you do. You are making a difference in SO MANY lives.

L.S.Fisher said...

Karen, please send your story with her! Print out some pictures and send them too. The legislators remember the personal stories. You have a chance to be a voice for the 500,000 people with early onset Alzheimer's.

I would like to meet your social worker so ask her to look me up.

Karen H said...

Linda -
I'm SO sorry, I did not get to read this until you were in Washington. I would have loved for you to meet Barbara Vogel. She has put so much work into helping Alzheimer's patients and their families. I DID give her our story, but unfortuanetly, I didn't think about pictures. Mike's young healthy face as compared to his now distant stare would have struck many chords I'm sure. I had a busy few weeks and I just got my info to her the Saturday before she left. I hope you all did some real eye opening in DC. Thank you again.