Mother’s Day is day to make, cherish memories

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Brittany and her mom pose for a photo.

Mother’s Day is the one day a year where we show our mom a little extra attention and love. We pamper and shower her in hugs, kisses and gifts, creating everlasting memories together.

But with a mom with Alzheimer’s disease, the holiday is different. My mom doesn’t remember the flowers and all the sticky crafts I gave her. She doesn’t remember the smell of breakfast and coffee lingering from the kitchen. And she doesn’t remember the cheesy Mother’s Day cards we picked out.

IMG_1025 (1)I wish she could remember walking into our messy kitchen as my brother and I attempted to bake a cake for her. I wish she could remember the smile on my face when I finally saved up enough money to buy her a picture frame and make her favorite chocolate cake – not burnt this time. I wish Alzheimer’s didn’t take her away so quickly.

This Mother’s day, I will visit my mom at a nursing home. I will wear a name-tag and tell her all the stories from previous Mother’s Days. I will wait for a response to my stories, knowing no words will come from her mouth but hoping for a smile letting me know she is listening.

As I hold her hand, I will remember when she held mine through the good and tough times, as a mother should. I will realize how much she has taught me in a short amount of time. Mother’s Day has not been easy for me these past nine years.

I wish she could be here for when it’s my turn to celebrate my own Mother’s Day. I wish she would be there watching me react to eating a burnt piece of cake and attending Mother’s Day events in school  like she for me.

As I sit with my mom this year all grown up, I will remember what Mother’s Day is all about, showing our moms a little extra love and attention one day a year.  Although my mom won’t remember, I will.

Happy Mother’s Day Mom! I love you!

Brittany Carel

Brittany is a intern with the Alzheimer’s Association Southeast Florida Chapter and a student at Florida Atlantic University.

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How my grandmother lost her language, and so did I

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Lyssa Goldberg’s grandparents pose for a photo in Havana, Cuba in the mid-1950s.

By Lyssa Goldberg, Guest writer

What a happy couple. They’re sitting on a boat, captured in a moment of nautical bliss — posed, smiling, and unrecognizable. Jaime with his sailor’s hat, clean-shaven aside from a thick mustache, and Gela by his side, with a pair of maracas in her hand as she leans against him.

In Jaime’s left hand is a pair of sunglasses flung casually to the side, while his right hand caresses Gela’s neck. The void between where their heads and shoulders unite creates a diamond-shaped window into another world: mid-1950s Havana, before Fidel Castro came to power.

I’m looking, really looking, at this photo that my uncle found after searching through my grandparents’ emptied home last Thanksgiving. I’ve seen black-and-white photos of them before. But here in this picture, and now especially, they look so different from the grandparents I grew up with.

Frankly, his hair cut was still the same, and I recognize the curve of her nose that she passed on to me, but there’s a spark in my grandfather’s eyes I never saw in the 20 years that I knew him. So much has changed. He’s gone now, for starters, and her memory is gone now, too.

I bet they didn’t speak a word of English back then. It doesn’t seem like they had any clue they’d need to — that is, to leave all their belongings behind in Havana, take only their one- and two-year-old sons and their wedding rings with them, and learn the English language in order to build a new life in the United States. A few decades earlier, both of their parents had done the same when they had to leave Eastern Europe and start families in Cuba.

My grandfather learned to speak English — I know he did — but the stubborn, old Cuban man that he was, he loved to refuse to speak it.

“How are you today, sir?” a cashier at Publix might ask him. After he retired, he went to Publix almost every day.

On a good day, he might half-smile back uncomfortably, tightening his mustache into a bundle, and then walk out with his grocery bags full of two-for-one cupcakes and 2-liter soda bottles.

With me, he was curt, but at least he tried.

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Lyssa Goldberg ‘s Wita smiling at Miami Jewish Home

“You have no school today?” he would ask me every weekend.

“No, I’m off today, but I have a lot of homework to do,” was my go-to response.

“You go on Monday?”

“Yep,” I’d say and smile back, worried that if I said too much, he wouldn’t understand.

My grandmother used to speak English perfectly, but she barely speaks it anymore.

Our conversations nowadays go something like this:

“Wita, how are you? Did you enjoy lunch?”

I couldn’t say Abuelita when I was little, so I took the liberty of shortening it, and Wita stuck.

“Sí, creo que la novia no se parecen en labios.” 

Translation: Yes, I think that the bride does not appear on the lips. I never learned to speak Spanish fluently, but I know enough to understand that she’s only speaking nonsense.

“What bride, Wita? Where did you see a bride?”

“Mine shtivl a bi gezunt.”

Translation: Something about boots and health. I don’t know any Yiddish, and didn’t even realize my grandmother spoke it until the Alzheimer’s got this bad.

“What do you mean, Wita? Are your shoelaces too tight? Do you want to go for a walk?”

“La ventana camina a la tienda sin sombras.” 

Back to Spanish again. It seems she thinks the window walks to the store without shadows.

It’s not uncommon for late-stage Alzheimer’s patients like my grandmother to lose their ability to carry on a conversation. As their cognitive functions decline, language processing skills can become impaired.

Translation: Wita can no longer say what she means.

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Lyssa Goldberg’s grandparents

It’s in these moments that I regret not practicing my Spanish with my grandparents when I’d had the chance. Maybe if I had, I would actually be fluent. And maybe if I truly understood the language, I would be able to unscramble what Wita meant to say, even if her Alzheimer’s stops her from getting all the words right.

During this conversation, we’re probably sitting in rocking chairs in front of the fourth floor TV in the Miami Jewish Home’s Chernin Building, where Wita has lived for four years. Or if it’s a bit earlier in the day, I’m trying to get her to talk to me as she’s still having lunch.

I’ve gathered that the disease takes her mind back to Cuba, especially when she sees my father and calls him her brother. Maybe when she speaks to me in Yiddish, she thinks she’s talking to her mother, who continued to use Yiddish in Cuba the way my own grandparents held on to their Spanish in the United States. When Wita speaks now, however, it’s not merely Spanish or Yiddish. It’s like she’s created her own made-up, mashed-up foreign language that imparts whatever meaning I make of it.

Wita comes to me in my dreams sometimes, speaking to me in English, the way I will always remember her. She stands tall, with a vigor about her that rivals the agile grandmother who used to push me in a stroller from her home to the park nearby. She exudes the same tenderness that she did when she’d visit my house every weekend all the way through early high school.

As I sleep, I talk to her the way I can’t anymore. I tell her about how well I’m doing in college, about to graduate, in fact. But I say that I wish I’d learned all the Spanish I could in 5th Grade when she started teaching me words and phrases after school.

When my grandfather left us last year, it struck me that Wita would never even know she lost her husband. Maybe that’s a good thing. But it also means that now I can’t hear my grandparents hablan en español once a week and hope to pick up new Spanish vocabulary along the way.

The photo of my grandparents that my uncle found had been sitting in a closet filled with memories: boxes of family albums, a foreign coin collection, their assortment of gaudy jewelry. All of these remnants are the traces of my grandparents’ past, the life they lived here while holding onto their love for Cuba.

These mementos shouldn’t have been secrets stuffed inside guayabera pockets. If I had been able to connect with them in their native language, I would’ve known more about my own grandparents and the rest of our family. In Spanish, I could’ve asked them all the questions that their forsaken belongings have now started to answer.

Looking at this photo again, now saved on my phone for me to peek at from time to time, I see more than a happy couple sitting on a boat. I see the direct connection I had to a history I’ve only learned of through textbooks. I see the people whose life experiences it took me too long to be curious about. I see the missed opportunity for real conversation, but I see my motive for putting together the pieces of my family’s story.

Lyssa Goldberg is a writer and editor in South Florida. Lyssa wrote this personal essay about a decades-old photo of her grandparents in Cuba one year after her grandfather, Jaime, passed away. His wife, Gela—Lyssa’s grandmother—had Alzheimer’s in her old age. She has also passed away since this was written.

Get the latest on research, valuable resources at the 2016 Regional Education Conference in Miami

17246088092_e7f56d8c8b_zJoin us at Florida International University Kovens Conference Center on April 14 for the 2016 Regional Education Conference. Whether you are a caregiver for someone with dementia or you work with patients with dementia, this conference has something for you.

The annual conference provides valuable information for people influenced by Alzheimer’s disease, their families and professionals. Renowned dementia experts will share helpful resources and present the latest updates in research.

“This event is a great resource for the community,” said Michael Pearson, Vice President of Programs for the Alzheimer’s Association Southeast Florida Chapter. “Tools and information can make a huge difference for caregivers and professionals, and this conference will give them not only vital resources, but also hope for a brighter future.”

This year’s keynote speakers are James Galvin, M.D, M.P.H. and Holly Cukier PH D. Galvin is a Professor of Integrated Medical Science and Associate Dean for Clinical Research at the Charles E. Schmidt College of Medicine at Florida Atlantic University. He is also the Director of the Institute for Healthy Aging and Lifespan Studies. Cukier is the Research Assistant Professor in the Department of Neurology at the University of Miami’s Miller School of Medicine as well as the Associate Director for the Induced Pluripotent Stem Cell Core at John P. Hussman Institute for Human Genomics.

In addition to the keynote speakers, there will be several breakout sessions during the day-long conference. Pre-registration is required. Tickets will not be sold at the door. 17221914066_e84afea73f_oRegistration is $35 for general admission and $75 for professional admission. CEUs are available for professionals. Respite options are available, but you must RSVP by April 7 to receive the services. Some scholarships to the conference are available for caregivers.

Get more information and register online here or by calling 561-967-0047.

Alzheimer’s caregivers: Get the ‘Tools’ you need at a free workshop at the Kane Center on April 12

 

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They’ve got the tools: Senior care professionals Alice Delevante, R.N., BSN, of Mederi Caretenders; Crystal Collier of the Council on Aging of Martin County; Ron Radcliffe of Senior Helpers; and Laura Zel Kremer, LCSW, of MorseLife are just a few of the panel members who will provide free expertise to Alzheimer’s caregivers at the Kane Center on April 12. 

By Denise Belizar, guest blog writer      

A panel of senior care professionals will be on hand at the Kane Center in Stuart on April 12 to provide expert advice and tools to help those who are caring for a loved one with Alzheimer’s Disease. The “tools” in this case are helpful strategies and devices that caregivers can use to better assist their family members.

The free educational forum, “Everyday Tools and Strategies for Alzheimer’s Caregivers,” will run from 9 a.m. until 2 p.m., and includes complimentary lunch and refreshments. Free respite care will be available on site in the Kane Center’s Adult Day Program. Reservations are being accepted through April 8, and can be made by calling 772-223-7800. The Kane Center is located at 900 SE Salerno Road in Stuart.

“The caregivers are the focus of this event,” says Ron Radcliffe, Chief Operating Officer for Senior Helpers in Stuart. “We’re here to give them real techniques and strategies to enhance the care of their loved one while reducing stress for everyone.”

The educational session’s panel will include a clinical social worker, physical an occupational therapists, an R.N., an adult day care director, and representatives from Medicare and private pay home health companies. Attendees can expect a full day of hands-on demonstrations, as well as sessions covering such topics as sensitivity training, handling challenging behaviors, strategies for effective care and best outcomes, environmental safety, providing structure in the day, body mechanics and more. Prizes will also be raffled off throughout the day.

The event is sponsored by the Alzheimer’s Association, the Council on Aging of Martin County, Levin Home Care, Lifecare Therapy Services, Mederi Caretenders, MorseLife Health System, Rotech Healthcare, Inc., and Senior Helpers. For more information, call 772-223-7800.

 

Getting involved with local walk committee rewarding, fun

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Some of the Broward Walk to End Alzheimer’s committee pose for a photo at last year’s walk.

Volunteers are truly the faces behind the success of our local five Walk to End Alzheimer’s events.

Every walk has a committee that is filled with people willing to put their time and soul into this cause.

Marlene Lieberman has served on a walk committee for the past 15 years. She has been the co-chair of the Miami-Dade Walk to End Alzheimer’s and is now on the Broward Walk to End Alzheimer’s committee. The committee allows her to help put on what she considers an inspiring event and utilize her passion to help those in her community influenced by the disease.

“I know the benefits of the fundraising event, and I see how the walk inspires those who are affected by this awful disease,” she said.

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Bree Beynon and her husband pose for a photo at last year’s West Palm Beach Walk to End Alzheimer’s at CityPlace

Bree Beynon serves as the team recruitment co-chair on the West Palm Beach Walk to End Alzheimer’s committee, and she loves giving back to her committee.

“I feel strongly about volunteering for the Alzheimer’s Association, not only because of the important cause but also because of the people who are involved,” she said. “It’s clear that everyone’s heart is in the best place, and they are passionate about helping our community.”

The committee is composed of different chairs and co-chairs who handle a variety of topics ranging from sponsorship to mission as well as committee members who serve under the chairs. The committees meet once a month to talk about the upcoming walk. All of the walk committees this year, still have room for more members.

If you are interested in volunteering for your local committee or getting more information about being on a committee, please reach out to the walk manager of the walk you are interested in.

For the Treasure Coast or West Palm Beach Walk to End Alzheimer’s committee, reach out to Tricia Williams at 561-967-0047 or by email at twilliams@alz.org. For the Boca Raton or the Broward Walk to End Alzheimer’s committee, reach out to Jessie Brooks at 561-967-0047 or by email at jbrooks@alz.org. For the Miami-Dade Walk to End Alzheimer’s Committee, reach out to Jose Pinera at 561-967-0047 or by email at jpinera@alz.org.

“I recommend getting involved with the walk committee if you are someone who truly feels passionate not only about finding a cure for Alzheimer’s but about supporting those who are currently living with the disease and their families,” Beynon said. “ Anytime we come together as a community to raise awareness and have fun I think we are showing those with the disease that we are not afraid and they are not alone.”

Our walks this year:

Boca Raton – Sept. 25 at Mizner Park Amphitheater in Boca Raton

Treasure Coast – Oct. 1 at Indian RiverSide Park in Jensen Beach

West Palm Beach – Oct. 8 at CityPlace in West Palm Beach

Broward – Oct. 22 at Hollywood North Beach Park in Hollywood

Miami-Dade – Nov. 5 at Museum Park in Miami

For more information, visit alz.org/walk.

Advocate Spotlight: Doris Sanders

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Representative Gayle Harrell (left) poses with Doris Sanders (right) at the Sage Awards

 

At the Alzheimer’s Association Southeast Florida Chapter, we have the extraordinary honor to serve our community and work with amazing volunteers. These volunteers help us get closer and closer to our vision of a world without Alzheimer’s.

Today, we are shining a light on one of our incredible advocates, Doris Sanders. Doris is a former full-time caregiver to her husband Joe, and since his passing, she has become a full-time advocate for the Alzheimer’s Association.

She currently serves as the Ambassador to Patrick Murphy. In this capacity, she updates the Congressman and his staff about issues relating to Alzheimer’s disease. She also advocates for an increase in research funding and legislation that helps caregivers and individuals living with Alzheimer’s.

Doris’ work led to the Congressman signing on to the HOPE for Alzheimer’s Act  and lending his support to a monumental increase of $350 million in NIH research funding for Alzheimer’s.

She also has worked to make Alzheimer’s a priority here in the state of Florida. She just recently attended our Rally in Tally event to advocate for research funding and an increase in funding for respite services. There are over 1 million unpaid caregivers in the state of Florida. As former full-time caregiver, Doris knows the toll the disease takes on all those involved.

Even though the reward of volunteerism is bringing awareness to a cause, Doris has also been rewarded by her community for her outstanding advocacy efforts. She won the Area Agency on Aging Prime Time Award in 2014; she was a finalist for TC Palm’s Healthcare Champions Award in 2015; and she most recently was nominated for a SAGE Award.

A big thank you to Doris Sanders for all she does for our cause!

Alzheimer’s advocates turn Tallahassee purple

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The historic Capitol building was lit purple for the Alzheimer’s Association’s Rally in Tally event. Photo by Jennifer Briasted

By Jennifer Braisted and Kate Pokorny

Brittany Carel was 13 years old when her mother was diagnosed with Alzheimer’s. Now a junior at Florida Atlantic University, Carel wants to use her personal experience with the debilitating disease to help others in similar situations.

That is why at the end of January she and 21 fellow Alzheimer’s advocates ranging in age from 19 to 80  from all across South Florida traveled to Tallahassee to advocate for those caring for and living with Alzheimer’s and other dementias.

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The Southeast Florida delegation joined more than 50 Alzheimer’s Association advocates from around the state in Tallahassee for the annual Rally in Tally event. The event educated state legislators about Alzheimer’s and advocated for the association’s state priorities. The Southeast Florida Chapter has not participated in the annual Rally in Tally day in over eight years. During the event, the historic Capitol was lit purple in honor of the more than 510,000 Floridians with Alzheimer’s disease.

“Having people come up from all around Florida to spread awareness is key to helping people realize the seriousness of this disease,” said Carel.

The Southeast Florida advocates visited more than 60 state legislators from their area in the eight hours they were at the Capitol. During these visits, the advocates discussed the association’s state priorities.

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Paul Carson, Dottie Carson, Rep. Mark Pafford, Gordon Broom, Larry Jordan and Nancy Ginden pose for a photo after a meeting at the Rally in Tally event.

The association aims to get an increase of $1.7 million in funding for respite services.  This increase will help the more than one million Alzheimer’s caregivers in Florida receive needed services, like financial assistance for adult day care.

In 2015, caregivers provided more than one billion hours of unpaid care for someone with Alzheimer’s disease.  Currently, there are more than 3,600 families on the waitlist to receive respite services in the state.

The Alzheimer’s Association also aims to get an increase of $6 million for the Ed and Ethel Moore Alzheimer’s Disease Research Program. The program awards grants for research relating to the prevention, diagnosis, treatment and cure of Alzheimer’s disease.

“Alzheimer’s is a global epidemic which is rampant in the state of Florida,” said Jennifer Braisted, advocacy and public policy coordinator for the Alzheimer’s Association Southeast Florida Chapter. “We went to Tallahassee to fight for the 1.5 million Floridians who are either living with or caring for someone with Alzheimer’s disease.”

To find out how to get involved in the Alzheimer’s Association Southeast Florida’s advocacy efforts call 561-967-0047 or email Jennifer Braisted at jbraisted@alz.org

Running for a cause close to my heart

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By Alice Delevante, Guest writer. Updated 2.28.2017

My name is Alice Delevante, and this weekend I am running in the Marathon of the Treasure Coast in support of patients and their families affected by Alzheimer’s disease.

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(From left) Alice Delevante, Donna True and Doris Sanders at the finish line of the 2016 Treasure Coast Marathon.

More than 14 years ago, I got involved with the Southeast Florida Chapter of the Alzheimer’s Association. Originally, I got involved due to my professional expertise, but since then I have had two family members affected by this disease. Because of the education I received from being involved with the organization, I was able to give advice and help my family members.

 

Throughout the years, I have volunteered for the association as an educator and as the chair for the Treasure Coast Walk to End Alzheimer’s. Alzheimer’s disease creates both emotional and financial hardships on affected families. In Martin and St. Lucie alone, more than 14,000 people have the disease.

The Southeast Florida Chapter of the Alzheimer’s Association provides caregivers with a 24/7 helpline, support groups, resources and education. Money raised helps fund local programs as well as Alzheimer’s research.

There are a few ways you can help me support the Alzheimer’s Association Southeast Florida Chapter.

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Alice Delavante (left) and Doris Sanders at the finish line of the 2016 Treasure Coast Marathon. Alice also ran a 5K February 11, 2017, in support of the Alzheimer’s Association Southeast Florida Chapter.

 

  • You can register to run for the cause. There are multiple runs going on through March. On Sunday, March 5, the Treasure Coast Marathon and half marathon will be held. Find out more about registering here.
  • You can donate to my run here.

 

Find out more about the Southeast Florida Chapter of the Alzheimer’s Association by calling the 24/7 helpline at 800.272.3900 or visiting their website at alz.org/seflorida. You can also follow them on Facebook, Twitter and Instagram.

I hope to see you on the route!

 

Alzheimer’s Association® Helpline provides ‘round-the-clock’ information, support

 

helplineBy Brittany Carel

Koreen Butler didn’t know where to turn for answers when her 57-year-old best friend suffering from Alzheimer’s was Baker Acted from her assisted living residence.

The Davie resident had watched her friend of more than 10 years start to deteriorate, and she wanted to make sure her best friend was taken care of. She looked online at alz.org and found the Alzheimer’s Association’s 24/7 helpline number.

“I called because I needed support with caring for my best friend,” Butler said. “I wanted to know what the rights for a person with Alzheimer’s disease were.”

Butler said the call was helpful and calming for her. She said the person stayed on the line to listen to all she had to say.

“I felt so relieved to talk to someone who knows exactly how I was feeling,” she said. “I was advised on what to do about my friend’s current living situation, and also what to expect for the future.”

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Koreen Butler (left) sits with her best friend (right) at an elementary school event. They met after their sons became good friends in elementary.

Butler was given countless tips on how to help ensure her best friend was getting needed care.  Her call led to steps that got her friend into a nursing home better suiting her needs.

Those with Alzheimer’s as well as caregivers, friends and family like Butler call the helpline for resources and to just talk. In fiscal year 2015, the Southeast Florida Chapter alone received more than 10,000 helpline calls.

The Alzheimer’s Association 24/7 helpline serves people with memory loss, caregivers, health care professionals and the public. The staff answering the calls can help you understand memory loss, dementia and Alzheimer’s; medications and other treatment options; general information about aging and brain health; skills to provide quality care and to find the best care from professionals; and legal, financial and living-arrangement decisions.

The helpline, featuring 200 languages, also has confidential care consultation provided by master’s level clinicians who can help with decision-making support, crisis assistance and education on issues families face every day.

If you ever are in a position like Butler or just want to know more about the disease, call 800.272.3900. Find out more about the helpline at our website.