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Ventura County advocate, Laurie Kreis, shares about her first-time experience as an Alzheimer's Association advocate

Rhonda Speigel, Alzheimer's Association California Central Chapter CEO, Sherie Lawson and Laurie Kreis outside Representative Lois Capps' office at the 2015 Alzheimer's Association Advocacy Forum.

Ventura County, CA (APRIL 2015) - My inaugural attendance at the National Advocacy Forum in Washington D.C. was nothing short of inspiring. Having no frame of reference for what to expect, I couldn’t help but become energized by the excitement of the roll call. The introductory general session was helpful in linking advocacy efforts to legislative victories, which could then translate to potential scientific successes. In other words, how is all this going to make a difference?

Not only did the First-Timers Program serve to illustrate how public policy is important, but it also outlined how we’d be able to use the powerful tools provided by the Alzheimer’s Association to their most impactful advantage. We “newbies” would learn from the veterans how to politely (but persistently) engage our congressional representatives in a conversation about the role they need to assume in combating this disease. To that end, it could not be overstated just how important our personal stories were in moving them to take action.

Our first stop to Representative Lois Capps found us meeting instead with one of her legislative assistants. Though she showed herself to be professional, my read on the interaction was that consistent (and insistent) engagement would still be needed to obtain the level of buy-in we were looking for. That said, just as we were leaving, another of her staffers (a young man) approached us in the hall to thank us for what we were doing on behalf of those (like his grandmother) who had been felled by the disease. So, now we had a believer on the inside who could influence from within…score!

Last stop was to Congresswoman Julia Brownlee where her healthcare assistant was genuinely attentive and informed as to the level of commitment and the real actions taken by her boss to back that up. She took notes to follow-up with Representative Brownlee on a couple remaining tasks to be completed and I left with no doubt that our requests would be handled. Thankfully, Congressman Brownlee is one of the elected officials that “gets it”…so glad I voted for her!

As full-time Activity Director for a 55-bed memory care community in the Ojai Valley, I have the humbling privilege of working with moderate to severe Alzheimer’s residents. On a daily basis, I bear witness to these beautiful humans, many of whom had been accomplished professionals and gifted artists, gradually lose their grip on the person they were and the life they knew…ultimately not even recognizing their heartbroken family members and lifelong friends. I would gladly trade job security for a world with no need for places of employment like mine to exist.

So, it was encouraging to hear from none other than Senator Elizabeth Warren herself just how important were all the purple-sashed participants crowding the Senate Special Committee on Aging hearing room. The testimonies addressing the urgent need for action now, combined with the powerful presence of so many Alzheimer’s Association Advocates reinforced my decision to make my second annual pilgrimage to the National Forum in D.C. in 2016. Until then, there is much I can do toward making that next visit to Washington even more productive.

Join Laurie and other advocates from all over California to share your experience of living with Alzheimer’s disease and ask legislators to take action on California’s State Plan for Alzheimer’s Disease, improve long-term services and supports for people with Alzheimer’s and their families, and adopt data-driven public health strategies to combat Alzheimer’s disease. No prior advocacy experience is required!

Carpool with us! We will drive up on April 28 and return on April 29. Contact Donna Beal at 805.892.4259 ext. 107 or dbeal@alz.org for more info. Register online today by clicking here!

The Face of Alzheimer's - Local Alzheimer's Association California Central Chapter Advocates Head to D.C. for the 2015 Advocacy Forum

THOUSAND OAKS, CA (March 10, 2015) – On March 25, spring arrives in Washington, D.C., bringing more than blooming cherry blossoms and blue skies to Capitol Hill — nearly 900 Alzheimer's advocates will meet with lawmakers to encourage their support of legislation and funding critical to the fight against Alzheimer's disease. Hill Day, as it is known to advocates, is the culmination of the Alzheimer's Association Advocacy Forum, an event that brings passionate individuals to the nation's capital to learn about Alzheimer's issues, share their personal challenges with the disease and request legislative support from senators and representatives.

Ventura County residents, Laurie Kreis, Stan Smith and Sherry Harris, will head to the Hill this March to share their stories with Representative Julia Brownley (D-CA26) and other members of Congress. Kreis and Smith are members of the Advocacy Committee of the Alzheimer’s Association California Central Chapter, led by Donna Beal, Vice President of Advocacy and Program Services of the Alzheimer’s Association California Central Chapter. Alzheimer’s advocate from East Ventura, Laurie Kreis, an activity director for an Alzheimer’s community in the Ojai Valley, said meeting with elected officials face-to-face is critical to moving the cause forward.

“With newly elected leaders in Congress, it is more important than ever that our messages about the Alzheimer epidemic get heard. We need to share our stories, and our representatives and senators need to hear them,” says Kreis. "That’s what this forum and our legislative meetings are about. It's not about memorizing facts all the time. Our stories will make them act."

Smith, an advocate from Lake Sherwood will attend his third Forum to speak up for further research and support for those facing the disease. His wife was diagnosed with early onset Alzheimer's in December 2005 at the age of 54.

“I was her personal caregiver for four years, retiring at 57 to give full-time attention to care giving,” Smith shares. “She transitioned to a care facility in early 2010. By that time she did not know me or her three children. Anne passed away on January 9 of this year. For the last several years of her life she could not walk, talk, feed herself, or take care of any personal hygiene. She was a loving and energetic person. An RN with a Masters in Clinical Psychology she was a youth crisis counselor.”

Smith looks forward to sharing with member of Congress about the overwhelming costs of Alzheimer's: Nearly one in five Medicare dollars is spent on a person with the disease. He will also highlight the success of research funding in combating other conditions, like cancer, HIV and cardiovascular diseases, and asked that Congresswoman Brownley support a similar investment in Alzheimer's research.

"Costs are expected to skyrocket," Smith said. "This is an investment that will save money and lives in the long term."Harris, a Moorpark resident and author of a book for caregivers of family members with Alzheimer’s, will also share from her personal caregiving experience. Sherry’s mom was diagnosed with Alzheimer's at age 63, when Sherry became her primary caregiver until her mom’s death at age 81. “As time progressed, Mom lost the ability to talk or walk and finally was bedridden for the last couple of years. Throughout, we were able to maintain our bond of love,” says Harris. “Alzheimer’s is a horrific experience for both the patient and their caregivers. We must impress upon congress the immediacy of the need to fund research and development to find the cause and cure, build more desperately needed care facilities, and train additional caregivers to meet the demand.”

In 2014 advocates at forum highlighted Alzheimer’s disease as the most expensive disease in America. In addition, they asked for the support of an additional $200 million for Alzheimer's research at the National Institutes of Health (NIH) as part of a commitment to a strong National Alzheimer's Plan. One of the plan's major objectives is to find methods of treatment and prevention for Alzheimer's by 2025.

Join the movement today! To learn more about Alzheimer’s advocacy opportunities, visit www.alz.org/cacentral or contact Donna Beal at dbeal@alz.org or 805.892.4259. Join Laurie, Stan and Sherry at our nation’s capital March 23 to 25 for the Alzheimer’s Association Advocacy Forum or regional advocates at the State Advocacy Day in Sacramento on Wednesday, April 29, 2015. We need passionate Alzheimer advocates to lend their voice to the cause. At the Forum and Advocacy Day, you will become educated about the issues, learn new skills, network with fellow advocates and take our message directly to legislative members to fight for our agenda.

Game On! Blondes vs. Brunettes Bakersfield II Game Set to Raise Funds and Alzheimer’s Awareness

March 2015 - Terri and Amanda are best friends but remain rivals for their next Blondes vs. Brunettes powder puff football game to increase awareness and funding for the Alzheimer’s Association.

Last year’s inaugural event was “beyond anything expected in my wildest dreams,” said Terri Agcaoili, the Blondes team captain. Generating close to $20,000 in nine weeks, the Bakersfield game had more than 50 players, a live television weathercast from channel 17, an interview on channel 23 and DJ Randy from 94.1 FM to announce the details.

With more than 500 people filling the stands, an American Idol contestant sang the National Anthem and retired Coach Oliver called the game. “I’m getting excited just talking about it,” Terri added. “The blondes won, 12 to zero.”

“We had so much more support than we thought we would get and had more fun than expected,” reflected the Brunettes team captain, Amanda Valenzuela, who is also a Chapter board member. “It was amazing how many people volunteered, wanted to sponsor and help out any way they could. The outcome made us so excited going into this year.”

Both the blonde and brunette team captains have been personally touched by Alzheimer’s. Amanda lost her grandmother to the disease in 2008. Terri’s grandfather, diagnosed a few years ago, attended last year’s game and held the trophy. “Watching him decline is very sad. He sits there with a smile on his face.” As his caregiver, his diminishing abilities weigh on her mother who attends a Chapter support group.

Because of the volunteer-driven event’s success “more people are now talking about Alzheimer’s,” Terri added. The captains’ goal this time around is to raise $25,000. “It was a brutal, fun game; we are still friends,” said Terri. In agreement, Amanda added, “We are fighting for the same cause.” Game Day is Saturday, March 14, 2015 at Bakersfield Christian High School between 10 a.m. and 2 p.m. To participate, each team member pays a $20 registration fee and commits to raise at least $250. Tickets are $5 to attend and watch the game. For more information, please visit act.alz.org/BakersfieldBvB.

Also, save the date for 2015 Blondes vs. Brunettes Santa Barbara, set for July 18, 2015 at the Santa Barbara Polo and Racquet Club. A nationwide series of events, BvB has branched out to more than 35 cities and has raised more then $5 million for the Alzheimer’s Association.

Published in our Chapter's Winter/Spring 2015 Newsletter.  

"Savvy Caregiver class offers practice advice"

By Bob Mulrooney
Published in the SLO Tribune "The Power of Hope: Rising to the Challenge of Alzheimer's Disease"

November 2014 - When my wife started having memory problems and was diagnosed with Alzheimer’s, I realized just how little I knew about the disease. I contacted our local Alzheimer’s Association. They have been a wonderful resource for information, support groups, and educational workshops.

One such workshop is the Savvy Caregiver. This four-week program has been outstanding in providing me with a deep understanding of the disease. This includes learning about the progressions I could expect from mild impairment to very severe cognitive decline. The workshop classes also included a healthy smattering of practical information in dealing with our loved ones. For example, when my wife made statements which were in error, I was quick to correct her. The class taught me to ‘finesse’ the error by saying, “I didn’t remember saying that” and to just let it slip by, as it is not worth an argument with your wife/husband. The key to remember is to keep your loved one calm.

Another very helpful hint was keeping your voice calm and controlled. When I get excited, I tend to raise my voice, which sends a threatening message to my wife. I’m working on controlling my response. I’m still not ‘there’, but I’m making progress.

Another ‘practiced lesson’ I’ve learned is that you cannot reason, bargain or negotiate with someone who has Alzheimer’s. In fact, arguing with the individual is counterproductive. Make up a story, fudge the truth if necessary, do whatever is required to keep them calm and relaxed.

The Savvy Caregiver workshop gave me a very clear overview of Alzheimer’s disease, the progression of the disease, practical ways of dealing with the problems, and the many resources that are available to the caregivers and their loved ones. I now feel I am in a much better position to deal with the future and to make the best decisions for my wife and me.

I would encourage anyone who is faced with a situation involving Alzheimer caregiving to contact the Alzheimer’s Association and register for their educational workshops.

Contact Sonya Laputz at 805.547.3830 to learn more about the four-week Savvy Caregiver Workshop Series in SLO or click here to learn more about caregiver resources in your area. For more information about Alzheimer's and caregiver support, contact the 24/7 hotline at 800.272.3900.

Santa Maria Walk to End Alzheimer’s raises more than $52,500

October 2014 - Beautiful weather drew hundreds of Santa Maria residents out for the Walk to End Alzheimer’s on Saturday, Sept. 27 at Waller Park. Pacific Neuroscience Medical Group was proud to be the presenting sponsor of the California Central Chapter Walks, along with local community sponsors, Heritage Oaks Bank, and Merrill Gardens at Santa Maria. This year, the Walk drew 355 caregivers, family, and friends, who raised more than $52,500 to fight this devastating disease.

The Walk to End Alzheimer's is the world’s largest event  to raise awareness and funds for Alzheimer's care, support and research. Without the tireless work of the caring volunteers and the support of a great community the Walk would not be a successful fundraising event.

“My focus is to provide information and resources to others who are struggling either as caregivers or family members with someone that has been diagnosed,” says Don Bock, Grand Champion fundraiser and Santa Maria Walk Committee volunteer. “I know that I had little information initially, but found the Alzheimer’s Association to be very helpful to me in providing options for care.” 

Don got involved after finding out his mother was affect by the disease. He says because the disease is generally misunderstood, he wants to inform people about what to expect and what they can do to help their loved ones.

“This insidious disease steals not only the memory but the personality of those so afflicted. That’s something that people don’t necessarily expect,” says Don.
The Santa Maria Walk to End Alzheimer’s was a true celebration of many people who recognize that they are not alone in their fight against this fatal disease. 

Captain of his team, Don has participated in six Walks. In honor of his mother, his team “Hear the Lions Roar” raised over $1,800 in Walk funds this year.

"The Walk isn't just about raising money but educating people about the disease and bringing those affected together," says Gary Gross, Santa Maria Walk Committee Chair. "The combined strength of many people who are aware of how they can help each other get through Alzheimer's is an incredible thing."

Fundraising efforts for the Alzheimer's Association, California Central Chapter will continue through the end of the year, and donations to support the Walk will be accepted until December 31. If you would like to donate to the cause, please contact Mitchel Sloan at 805.892.4259. For more information, visit www.alz.org/cacentral.

Our first stop to Representative Lois Capps found us meeting instead with one of her legislative assistants. Though she showed herself to be professional, my read on the interaction was that consistent (and insistent) engagement would still be needed to obtain the level of buy-in we were looking for. That said, just as we were leaving, another of her staffers (a young man) approached us in the hall to thank us for what we were doing…on behalf of those (like his grandmother) who had been felled by the disease. So, now we had a believer on the inside who could influence from within…score!

Last stop was to Congresswoman Julia Brownlee where her healthcare assistant was genuinely attentive and informed as to the level of commitment and the real actions taken by her boss to back that up. She took notes to follow-up with Representative Brownlee on a couple remaining tasks to be completed and I left with no doubt that our requests would be handled. Thankfully, Congressman Brownlee is one of the elected officials that “gets it”…so glad I voted for her!

 


 

Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.