Memory Day – Capitol Here We Come

Wednesday was Memory Day and hundreds of advocates converged on the Missouri State Capitol. After being briefed on the issue we were to discuss with our legislators, we donned our purple Alzheimer’s Association “beauty queen” banners and set off to deliver packets.

My favorite part of Memory Day is meeting with other advocates who have become my friends over the years. Along with people that I expected to see, I noted a familiar face in the group surrounding Linda Newkirk, the executive director of the Mid-Missouri Chapter.

“Aren’t you in the wrong group?” I asked Evelyn a fellow Business Women of Missouri member.

“I’ve been involved in the walk for years,” she said as I gave her a hug. This wasn’t the first trip to Memory Day for either of us, but somehow this was the first time we had noticed each other.

Before heading out to our appointments, we helped honor some members of our state government who have moved our cause forward. First up was Lt. Govenor Peter Kinder who served as the chairman of the Missouri Alzheimer’s Plan Task Force. An executive summary of this plan was included in the packet for the legislators. This report crafted by the 19-member task force gives some of the highlights of the past year.

The Missouri Alzheimer’s chapters awarded Leadership of the Year Awards to Senator Kurt Schaefer and Representative Margo McNeill. Patti, Janie and I had to leave before the ceremony ended to be on time for our first appointment.

We had only one priority this year: increase the Alzheimer’s Service Grants to $300,000. In 2006, we received $539,000. This was reduced 25% in 2010, and this year’s budgeted amount is $150,000. These grant funds were used by the Missouri Chapters to provide respite care for families with loved ones living at home.

I can speak from experience about the importance of respite funding. The only financial help we qualified for was respite from our local chapter. Jim was too young to qualify for any of the senior services that are in place to help the elderly.

Most of the legislators were sympathetic to our request to reinstate Service Grants, but as one aide put it, “Tell us where the money is going to come from and we might consider it.” I’m sure they have groups knocking on their door every day asking for more funding, or at least to not have funding cut. It seems like senior services are often the first items to hit the chopping block.

I was more impressed with my representative, Calib Jones, who took time to sit and talk with us, although he was on his way to a committee meeting. After we explained the shortfall, he said, “I’m not on the budget committee, but I’ll certainly talk to someone who is.”

It would seem to be a logical choice to fund respite to help caregivers keep their loved ones at home longer. Sixty percent of Missourians placed in nursing homes depend on Medicaid to pay for their care. Isn’t it more logical to spend $2.45 per year for each of the 110,000 Missourians who have Alzheimer’s than it is to spend on the average more than $51,000 per person for nursing home care? With nursing home care calculated at roughly $140 per day, if 307 people delayed going into a nursing home for one week, the state would break even.

After a whirlwind of visits, we went outside and lined up on the steps for a photo op. The strong wind not only sent hair flying out of control, but nearly gusted some of the advocates right off the steps.

I was tired after the visits and my feet hurt. On the walk back to my hotel room, I thought about how necessary it is to get boots on the ground for such an important service. Hopefully, the economics of providing respite care make sense to the legislators, and when they vote on the budget they will remember purple banners and the advocates who came to visit on Memory Day 2012.

Copyright © March 2012 L. S. Fisher

http://earlyonset.blogspot.com

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.

Alzheimer's Advocates

On Memory Day, hundreds of Missouri advocates will converge on our state capitol to urge our senators and representatives to support legislation to help our fellow Missourians with Alzheimer’s and their families. On March 12, Missouri advocates will distribute copies of Alzheimer's Anthology of Unconditional Love: The 110,000 Missourians with Alzheimer's to our state legislators.

As a long-time advocate, I know personal stories make a greater impact on legislators than statistics. The book contains 37 true stories, but even if legislators read only the title, they will realize that 110,000 Missourians are living with dementia.

Many books have been written about Alzheimer’s, but this type of anthology gives a rare opportunity to show how the disease affects families from different points of view. This book brings to life the challenges of living with dementia and shows the courage of persons with dementia and their families as they adjust their lives to accommodate dementia.

Now, the Early Onset Book Project seeks submissions for a book devoted to young onset dementia. This is an exciting opportunity to educate our legislators that Alzheimer’s is a neurological brain disease and not a normal part of aging. This book will be formatted much like the Missouri book with slice-of-life stories, pictures of the person with dementia (if submitted), and informational articles.

Writers do not need to be professionals! In fact, stories written by the primary caregiver or the person with dementia are the most compelling. I will edit stories, if necessary, before submitting them to the judges. The deadline is June 30, but I certainly hope most stories are submitted well in advance of the deadline so proper editing will give them the best chance of being selected for the book.

The Alzheimer’s Association estimates that approximately 500,000 Americans have dementia that began before age 65. My vision is that the Early Onset Dementia book will make a huge impact on legislators at every state level and in Washington, DC.

One definition of advocate is, “A person who pleads on behalf of another.” Your compelling slice-of-life stories help convince legislators of the need for increased National Institute of Health research funds to find a cure for Alzheimer’s.

Are you an Alzheimer’s advocate? If you aren’t, you should consider becoming one by sharing your story with this project.