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Alzheimer’s is a costly, dangerous disease / AL.com

May 14, 2014 at 4:08 pm
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By Letters from our readers   AL.com
on April 23, 2014 at 3:17 PM, updated April 23, 2014 at 3:23 PM

Purple is the color for Alzheimer’s disease. On April 9, 2014, I joined more than 800 purple-clad advocates to speak on behalf of the over 5 million people who have AD in the United States. Our mission was to appeal to our members of Congress for action on Alzheimer’s disease.

I am among the 15.5 million unpaid caregivers whose life is radically altered by providing care for my mother and aunt. I oversee their lives daily, handle their finances and problem-solve their every challenge.

Thank you to Bradley Byrne for meeting with our delegation to discuss the Alzheimer’s crisis. It is the most expensive disease in America; nearly one in every $5 spent by Medicare is on people with Alzheimer’s or another dementia, yet there is no cure in sight.

In addition to the human toll, Alzheimer’s costs $214 billion a year. Because of our growing senior population, unless science finds a way to slow progression or delay onset, Alzheimer’s will cost an estimated $1.2 trillion by 2050. More information can be found on alz.org by accessing the 2014 Facts and Figures State Statistics Sheets.

At the recent 26th annual Alzheimer’s Association Advocacy Forum in Washington, D.C., I heard Alzheimer’s advocate Dr. Francis Collins, director of the National Institute of Health, say that we are not, at the moment, limited by ideas, scientific opportunities or by talent. He stated, “We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take.”

Please understand that this disease is epidemic and could affect almost everyone. One in three seniors dies from Alzheimer’s disease. The number of people in Alabama living with the disease is projected to increase from 14 percent to 24 percent by 2050. Approximately 500,000 people die each year because they have Alzheimer’s disease.

I hope you will join us by putting on your purple and support increased funding for Alzheimer’s research by $200 million in fiscal year 2015.

It is only through adequate funding and a strong implementation of the National Plan to Address Alzheimer’s Disease that we will meet its goal of preventing and effectively treating Alzheimer’s by 2025.

Beth Reinert

South Alabama Advocate for the Alzheimer’s Association

Kick-off Party slated for our first area Walk to End Alzheimer’s.

April 30, 2014 at 10:18 am

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It’s finally going to happen – A Walk to End Alzheimer’s is in the planning stages.  It will be held at the Fairhope Pier on September 20, 2014.  The kick-off party is planned for Tuesday, May 13th from 5 – 7 at Laps Grocery and Grill.

Hors d’oeuvres will be served and there will be a cash bar. The goal is to take this time to share the many ways you can get involved with the Walk to End Alzheimer’s, volunteer to help in an area you feel best fits your interests, and make a difference in your local Alzheimer’s community.

 All interested in making this happen are invited to attend. Please R.S.V.P. Wendy Harris at wendyh@carepatrol.com.

If you’re interested in forming a team, go to the Volunteer Registration Page.  I’ve already started my team, named caregivers unite.  Join mine or start your own.  It’s gonna be a great day!

A person to watch – Gina Germany

April 28, 2014 at 5:50 pm

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I recently sat down to lunch with a lady who is making a difference in our dementia community.  She arrived in town 8 years ago with the determination to provide a service agency for the elderly.  She has done that and so much more. To try to understand it all, I had her draw a schematic outline of all the things she has created and directs. All tolled, 380 jobs have been created, providing services in Mobile, Baldwin, Escambia, Washington, and Monroeville counties.

You may be familiar with her Touching Hearts Senior Care, which encompasses in-home assistance, a safe discharge program, case management, and a pop-in service. She also helps veterans acquire assistance from the VA’s Aid and Attendance Benefits and offers a monthly support group.

Ms. Germany is the president of the Gulf Coast Senior Alliance, whose members provide quality and trustworthy care to the senior population on the Gulf Coast.

If that’s not enough, she has developed the non-profit Gulf Coast Dementia Services, Inc.  whose mission is to target the many needs of our dementia community, respite services being high on the list. Since dementia is our country’s fastest growing health concern with no cure in sight, I personally want to commend Ms. Germany on her foresight and determination to enable the many families living with dementia.  This group was responsible for the successful dementia conference featuring Teepa Snow held just this month.

You get a purple angel*, Gina Germany, for all you’re doing for dementia care.

*This Purple Angel symbol can be used by anyone raising awareness regarding dementia. It symbolizes a guardian over those living with dementia, their families and friends, as well as all those working to raise awareness about dementia world wide.

 

Teepa Snow has left the building.

April 19, 2014 at 9:58 am

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Teepa Snow knows how to make a lasting impression.  Her trademark characterizations of dementia keeps her audience engaged and amused.  But dementia is no laughing matter.  Anyone who cares for people with Alzheimer’s disease or other dementia is faced with incomprehensible challenges.  Teepa Snow is on a mission to change the perception of dementia in society and instruct caregivers on positive approach practices.  Her recent visit to Mobile as the featured speaker at the “Lower Alabama 2014 Alzheimer’s and Dementia Conference” was a treat for all in attendance.  “That’s my mother,” was  tearfully said by one participant as Teepa role played out a typical scenario between a mother affected by dementia and her daughter.  Mrs. Snow’s 30 plus years working hands on with dementia patients has made behaviors caused by dementia to be second nature.  She recently published “Dementia Caregiver Guide,”  a family friendly guidebook to understanding the many facets and progression of dementia.  It can be purchased from her website, teepasnow.com.

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In her presentation, Mrs. Snow demonstrated techniques for assisting someone with dementia into a car, how to help someone sit down in a chair safely, and how to substitute a dangerous situation with a safe one.  She stressed that understanding the limitations someone may be experiencing is helpful when providing care: realizing that vision is limited,  awareness that while hearing may not be impaired, understanding  meanings of words may be, and that the use of hands and feet are altered. “All due to changes in the brain”, said Teepa Snow, referring to images from the projector that clearly show vacant spots where tissue once was.

The attentive audience got to rehearse techniques with partners to help apply her practical teachings.

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Teepa Snow’s keen awareness of people’s behavior makes her an excellent teacher.  Thank you, Teepa Snow, for coming to Mobile and moving us forward in our approach to care.  Thank you Gulf Coast Dementia Services and Mercy Life,  for this invaluable lesson made available to our community today. May all that was learned go forth and multiply throughout our care community.

Having my say in Washington, DC.

April 14, 2014 at 10:01 pm

Sitting in the Library of Congress, I paused to soak in the celebration of so many authors who made lasting marks with their written words.  My favorite quote of the day inscribed on the wall high above a window read, “Words are also actions and actions are a kind of words.”  Today, my words have led to action.  In August of 2012, I visited Washington, DC.  I toured the Botanical Gardens and struck up a conversation with a Washington policeman who told me of his lengthy career on the force.

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As he handed me an US Capital Police patch, he offered me a special treat:  a tour of the Capital building and to arrange a flag to be flown over the Capital in my name.  I declined, saying, “I’d rather have a flag flown over the Capital to honor those with Alzheimer’s Disease, because of what we’ve encountered by caring for my mother, my mission is to raise awareness for the sake of other families facing this long, sad journey.”   Little did I know that twenty months later, I would storm the Capital with 850 other passionate AD advocates to rally support for families with AD.  By writing my blog, along with various articles and keeping up with local resources for networking, my words got me to Washington as an advocate. My prayer for this trip was for God to protect my travels, put me where He could use me, and to show me favor.  He came through on all requests.

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Surprisingly, as I stepped off the shuttle bus in front of Capital Hill, this policeman happened to pass by.  I called to him, got a big hug, and told him I’d come back, wearing my purple banner with so many other “flag” bearers to speak for those who cannot speak for themselves.  I doubt if he remembered me but I certainly knew him. Prophecy fulfilled!

This wasn’t the first “coincidence” I experienced on this trip. Starting with the plane ride from Houston to D.C., I found a fellow Forum traveler across the aisle from me.

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Once I arrived at the Renaissance Hotel, I went into the Grand Ballroom, amidst a sea of 850 plus people wearing purple.  I looked for a table to sit at for the day.  I randomly chose one, briefly said my introductions and sat down.  Next person to sit down was an outspoken fellow, familiar with the group I’d chosen and declared,” I guess you’ll have to sit with an Alabamian!” IMG_5602

Not only was he an advocate from Alabama but writes for the newspaper as well – Mark McCarter.  These are the people I would later visit two Senators with!  Again, proximity!  Next day, I attempted to meet a Memory People Facebook friend.  I stood before the huge crowd in the doorway, with the phone to my ear, talking to my never before seen “friend”, trying to tell her my location. Turned out, I happened to be standing right by her table!  She said she’d been trying to hook up with another Memory People friend who, lo and behold,  I discovered was in my group, so I led her to connect with our new “friend”.

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As the day of training wore in, I went to the lady’s room to freshen up.  As I stood in front of the sink, washing my hands, I noticed by her name tag that the lady next to me was from Las Vegas.  I remarked that my son’s girlfriends’ father lived in Las Vegas and told her his name.  “Oh, I know him, he is a wonderful person,” she declared. Can anybody say, “It’s a small world?”

To give even too much information, as I prepared myself for the special National dinner by arranging my hair, I asked God to help me make my unwieldy mane look good.  Once ready, I walked the three blocks to the hotel in the early evening air, knowing my efforts would be blown away before my entrance to the reception.  The first person I encountered was a woman from my group who commented, “Your hair looks nice.”  The only hair comment I got all trip.  I had to thank my Lord for watching out for me in the crowd of people, letting me know He was with and  for me. IMG_5657

The “Hill Day” gave us opportunity to navigate Washington like never before.  We had to wait in a line to pass through security to get into the Russell Senate Office Building to visit our senators. We had a great interview with Jeff Sessions’ staff, who took notes as we told our tale of woe, giving her the lowdown of the high costs of care, the high rate of incidence coupled with the low amount of money given for research.  Our meeting was followed by our Alabama Alzheimer Association Director, Kevin Burke, who had an impromptu meeting with Sessions in the hall and speaking to him directly.  Kevin later told us, “that is how it’s done in Washington.” Senator Sessions response was positive toward our cause.

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Next visit was with Senator Richard Shelby, who we met in the hall and had a photo op with after our meeting with his staff.  He told us of a dear friend of his wife, a very smart man who had succumbed to the ravages of AD. He gave us his appreciation of our efforts and his support of the upcoming bills we were promoting.

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As I strolled toward the Rayburn House to find Rep. Bradley Byrne’s office, David, head of the Ambassador Program for the Alz Assoc. stood beside me as we waited to walk across the street.  Seeing the long line, he said to me, “Come on, I’ll show you another, little known entrance.”  So we strolled right in with no waiting through the “horseshoe entrance” which was lined with blooming cherry trees.

IMG_5723IMG_5720 IMG_5721After seeing Rep. Byrne leave his office and not return by our appointment time, I knew we wouldn’t be talking directly to  him after all.  We met with a staffer and accomplished our purpose.  As we walked to the elevator, Rep. Byrne stepped out in front of us.  I immediately hung up on the person I was speaking with on the phone, slide the phone in my pocket and extended my hand, saying, “I’m Beth Reinert from Mobile.  Congratulations on your recent election…” He listened to our story. He gave us his support.  Another mission accomplished with photos to boot.

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Next, I went with Peter Cowley, Assoc. Director of our AL/FL Panhandle Alz. Assoc and Dr. Rodney Guttman, Alz Researcher at the University of West FL, to speak with Rep. Jeff Miller from Florida.  I got to listen to the good doctor argue for the cause of AD.  To think how difficult it’s been to find a doctor who was familiar with AD, and this trip allowed us several meals together, giving me plenty of time to talk to him and have my questions answered.

Satisfied that all had gone well, I sat in the Reagan National Airport, ready to board my flight home, when I saw a familiar face in the crowd.  After so much practice today, without hesitation I walked over to him and extended my hand saying, “You look like the mayor of my city.”  Indeed, he was our own newly elected Sandy Stimpson who I would learn had also met with the same men I had but for other matters. I told him about the upcoming 2014 Walk to End Alzheimer’s in Daphne and in Mobile in 2015.  It was a comfort to have Mayor Stimpson nearby for the ride home and yes, I got a selfie to add to my other photo memories of such a great trip!

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The trip was as I had hoped and better than I expected.  I am thankful to be in this position to speak for the voiceless and to raise awareness of the destruction of Alzheimer’s disease.  Please join me in the fight for better care and support, more research funding and promotion of brain health.  We can all benefit from that.

“If God is for us, who can be against us.” (Romans 8:31 NAS).

Current news from the Alzheimer’s Advocates day on Capital Hill:

April 10, 2014 at 5:55 pm

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This article sums up the day beautifully.

Alzheimer’s Association Advocacy Forum, here I come!

April 3, 2014 at 12:00 am

Next week is the annual Alzheimer’s Association Advocacy Forum in Washington, DC.  I will be attending as a Advocate for the Mobile area.  Watch for coming posts of all the activities and excitement.

Today, Peter Cowley, Associate Director of the Alabama/ Florida Panhandle Alzheimer Association and I paid a visit to Bradley Byrnes’ office in the RSA Tower.  We dropped off Alzheimer Association literature to announce the association’s presence in our area and purple cupcakes to leave a lasting impression.

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Good News for the Alzheimer and Dementia Coalition

April 2, 2014 at 10:49 pm

 Today’s meeting was informative for our community of interested caregivers and dementia services.  Julie McGee, Director of the Area Agency on Aging, discussed the result of the survey taken at the last meeting.  An opportunity was given for participants to sign up for future committees.

Gay Watson, the Area Agency Outreach Coordinator,  reviewed the upcoming Senior Expo and encouraged all to attend.

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Della Sanchez, AL Cares Coordinator, made her big announcement that the first Caregiver College is slated for Tuesday, June 10 and Wednesday, June 11 from 10:00 to noon each day.  Email Della at dellasanchez@sarpc.org for more information and to sign up as space is limited.

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E.A. Roberts Alzheimer’s Center Educational Dementia Support Group

March 27, 2014 at 5:33 pm

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The monthly support group of the E. A. Roberts Alzheimer’s Center will present Jennifer Fleming, Community Liaison of Allen Memorial Home.  She will talk about “How to be Prepared for a Nursing Home”.  The meeting will be held on Thursday, April 10, 2014 at 10:00am.

Complimentary care will be provided during the meeting.  Please call 435-6950 for more information.

Catholic Social Services of Mobile presents a Dementia and Alzheimer Information Workshop

March 26, 2014 at 4:59 pm

You are invited to attend the Dementia and Alzheimer Information Workshop hosted by Catholic Social Services of Mobile.  The presenters will be Della Sanchez, LGSW, Alabama Cares Coordinator at the Area Agency on Aging and Gina Germany, President, Touching Hearts Senior Care.  Deacon George Yeend of St. Lawrence Parish will lead in prayer and reflection.

This workshop will be beneficial for caregivers, family members, Ministers for the Sick, Clergy and anyone who is interested in Dementia/Alzheimer disease.

The program will be presented twice on Thursday, April 10th at either 10am to noon or 6pm to 8pm at St. Pius X Santo Center on 217 Sage Avenue, Mobile, AL.

For information, please call Ruth Breland, Director of the Apostolate for Persons with Disabilities – 251-434-1550.