Memory Day Common Sense Proposals

Rep. Dean Dohrman, Linda Fisher, Ginger Dollinger

On a cold February morning, Ginger and I joined other Missouri advocates for Memory Day at the state Capitol. With the temperatures in the teens and wind chills below zero, we made the trek from the parking garage to the Capitol building basement. That was a great place to enter the building since the cafeteria was close by and a hot cup of coffee helped take off the chill.

I found my cousin, Karen, and her lobbying partner at what they called their “office.” This was a perfect area to see everyone that entered the building. Ginger and I joined them and while we enjoyed our coffee, we received our first lucky break of the day. My cousin had a place for us to leave our coats. How great to not have to lug them around.

“Usually when we get here,” I told her, “we have this big discussion as to whether it’s cold enough that we have to wear our coats. That wasn’t an option this morning.”

Soon, the Alzheimer’s group passed by, and we discovered that we were now meeting in Hearing

Ginger Dollinger

Room #2, instead of #3. We would meet to receive our appointment schedules, leave behind packets, instructions, and don our purple sashes. Our Springfield group was unable to come because of ice, so our group was smaller than usual.

The Memory Day ceremony had been moved to 2:00 p.m., so for the first time, we had lunch first. Better yet, we weren’t rushed!

Another first: Ginger and I had different representatives. Since I’d moved a few miles down the road, I was in a new district.

We had two important issues to discuss with our legislators.

Alzheimer’s Grants. We have been fortunate to receive Alzheimer’s service grants for many years. This year we asked for $450,000 to be budgeted for grants that provide respite care for Missourians with Alzheimer’s or a related dementia. This grant has the potential to save the state millions each year. How is that possible? Respite often helps caregivers keep loved ones at home longer. Eight hundred families receive respite from this grant. Nursing home care costs Medicaid (paid by the state) an average of $147 per day. Sixty percent of nursing home residents are on Medicaid. If respite funds delay nursing home placement for Medicaid eligible persons by one month (30 days) the state would save $2,116,800. The savings alone makes sense! I delayed nursing home placement by several months with in-home care partially paid with respite funds. It is impossible to place a value on how much that time meant to us.

Senior Savings Protection Act (SB 244/HB 636). We all know how on our toes we have to be to avoid being scammed. People with dementia are even more vulnerable to being exploited. This bill would allow financial industry professionals to reach out to state agencies and family members if they suspect senior clients are being exploited and to refuse disbursements up to ten days. Folks, this is so necessary! Jim had me to run interference for him when telemarketers and others tried to take advantage of him. Not everyone has a person who can keep track of all the unscrupulous shysters out there that would love nothing better than to tap someone’s bank account.

Linda, Ginger, and Rep. Dave Muntzel

Our first scheduled visit was to see Ginger’s representative, Rep. Dave Muntzel, who until August had been mine. After our visit with him, we went directly to visit Rep. Dean Dohrman, my representative. Both representatives seemed to understand the value of both respite funds and the senior protection bill.

After these visits, we split up. Ginger went to the ceremony, and I accompanied another advocate on his legislative visit. As soon as our meeting ended, we walked to the second floor rotunda area where Lt. Governor Peter Kinder was talking about Alzheimer’s impact on families and government. Advocates held flowers representing their connection to the disease. The program ended with a caregiver’s personal story.

I dropped off a packet for our senator and retrieved our coats. On the drive back to Sedalia, Ginger and I talked about the day, our impressions, our hopes and fears. It had been a tiring day, but productive.

Being an advocate means being a voice. Each of us can be a voice to help advance these important issues in Missouri. Face-to-face meetings make the most difference, but you can lend your support with a letter, phone call, or email. It just takes a moment, but approval of the $450,000 Alzheimer’s Grant could be a lifeline for someone you love and save the state millions at the same time. The Senior Savings Protection Act could help your grandparents or elderly parents keep their hard-earned savings. These two issues are a win-win for Missouri residents and taxpayers.

Copyright © February 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Alzheimer’s: The Triple Threat

Alzheimer’s disease is a looming threat to each of us and to our government. In fact, it is a triple threat.

Threat #1: Soaring Prevalence. Every 67 seconds a person in the United States develops Alzheimer’s. More than five million Americans currently are living with Alzheimer’s. As the baby boomers age the prevalence of Alzheimer’s will skyrocket. Left unchecked, we could be looking at 16 million people with the disease by 2050. Don’t know about you, but that darn near scares the bejesus out of me.

Threat #2: Lack of Treatment. Alzheimer’s is the sixth leading cause of death in the United States. It is the only disease in the top ten without an effective treatment or a cure. We seem to be headed in the right direction with the Alzheimer’s Accountability Act which means the research budget is scientist driven. The goal is to move toward the National Alzheimer’s Plan with its goal of finding an effective treatment or a cure by 2025. Some recent studies are promising!

Threat #3: Enormous Costs. Alzheimer’s has a reputation for being the most expensive disease for a reason. It is! The cost to Medicaid is $37 billion and Medicare is $113 billion, or one in five Medicare dollars. I can’t quite wrap my mind around those staggering numbers. Families provide an estimated 17.7 billion hours of unpaid care. In 2014, the out of pocket expense to American families to care for loved ones with Alzheimer’s was estimated to be $36 billion. Additional costs hit family budgets hard. Even with health insurance and a division of assets that meant Medicaid picked up part of Jim’s nursing home, the disease drained our resources. Jim’s Veteran’s check and social security check went to the nursing home. The extras I bought for him cost much more than the $25 a month allowance from his checks.

When faced with a threat, humans have an instinct of either “flight” or “fight.” Which do you have? If you fall into the “flight” camp, you just ignore the disease and figure that it isn’t going to happen to you or someone you love. You don’t bother to do anything about it. Maybe not because you don’t care, but you just don’t have time, or money, or motivation.

If you are like me, you plan to “fight” with all you have. You walk the walk and talk the talk. You participate in Walk to End Alzheimer’s, or at least support someone who does, and you become an advocate. You spread the word and email a legislator from time to time. You become a "Voice" for Alzheimer’s.

Last night I listened to an ambassador call, “Changing the Trajectory of Alzheimer’s Disease.” The moderators mentioned three ways to help us move the Alzheimer’s mission forward. They called them the three “F’s.”

First, we need Fighters! These are the Champions who visit, email, call, and generally pester their legislators about Alzheimer’s legislation. They are ambassadors, board members, and volunteers who faithfully give their time and resources.

Second, we need Faces. A personal story, a picture, or a person in front of a legislator takes the abstract and makes it a reality! Whether you are visiting your state or U.S. legislators, the most important thing you can bring as an advocate is your story to make it personal and real. You need to condense the story to keep it on point and brief, but tell it from the heart.

The third part is to share the Facts. The facts are scary! The facts are sobering. You don’t have to memorize the facts, but you need to share them. The best way to lay out the facts is to verbalize a few key facts and leave a handout behind with the details.

We have our work cut out for us if we intend to neutralize the triple threat of Alzheimer’s and change the trajectory of the disease. I hope you choose to join the fight.

Copyright © February 2015 by L.S. Fisher

http://earlyonset.blogspot.com

Live Until You Die

Recently Harold and I went on a fifteen day cruise to Hawaii with my brother, his wife, my sister, and her husband. While at our last port, Kona, my brother said, “I saw something today that I’ve never seen before on a cruise.” Since he is the most seasoned “cruiser” in our family, this statement surprised me.

“I saw them load a body on the boat this morning.” He went on to say a hearse came to the pier and picked up the body.

“At least he was living when he died,” my sister-in-law said. “It’s a heck of a lot better than laying around in a nursing home waiting to die.”

This made me think about something my mother said several years ago after Jim developed dementia. She said, “I’m sure glad that you and Jim didn’t put off traveling until retirement.” So was I, since retirement was never meant to be for us. Travel, we did! Mostly we traveled west—to Oregon, Colorado, Utah, Idaho, New Mexico. In addition, we expanded our journeys by going south, north, and east—sometimes vacations and, other times, on business trips.

The important thing is that we lived. Jim always said planning a trip gave him “something to look forward to.” His lifestyle growing up was that of a vagabond. Getting in the car and heading out to a new territory meant adventure. A new day, a new experience. When the Fisher family returned to a locale, it was a sense of returning “home” to reunite with friends, family, or the weeping willow tree that grew in the front yard of a house they once lived in. Either way he was happy. He was living. He had many “homes” that resided in his memory and heart.

I, on the other hand, grew up living in one house in a remote area of the Missouri Ozarks. Travel was not something we did. Until my senior trip, I had only been out of state one time.

Other than the difference in our traveling experience, Jim and I had a lot in common. We both came from big families without a lot of material possessions, parents that remained married until death, relatives that played guitars and sang country music, and a love of family. We both grew up with cousins as our best friends and playmates.

Eventually, we found our groove—living in one area to satisfy me, but traveling to satisfy Jim. Even after Jim was diagnosed with dementia and traveling became a different kind of adventure, we still managed to revisit the familiar, Colorado and Branson, and to experience new locales—Maine and Nova Scotia. We continued to live.

If there’s one thing I’ve figured out from our journey into dementia, it is that living is a choice. When you consider the long-term scope of the disease, the choice to make the best of the time remaining seems more important than ever.

Don’t waste the time you are given in the early stages of the disease. As the disease progresses, adapt. An adventure may be as simple as a trip to the park or Dairy Queen for a milkshake or taking a wheelchair for a spin around the parking lot.

I can’t think of anything more heart-wrenching than watching a loved one’s emotions, memories, and skills deteriorate, but the one thing you have is the gift of time. Although it may seem that time is not your friend when you reach the later stages, it is a gift that people often do not have. Clutch and cherish those moments. Choose to live until you die.

Copyright © February 2015 by L.S. Fisher

http://earlyonset.blogspot.com