We NEED a First Survivor for Alzheimer’s – a Memorial Essay…

By Amanda Rittenberry – November 2016

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I’ve had a lot of people ask me lately how I’m doing. My standard response is “fine, thank you for asking”. I haven’t shown much emotion since my father passed away a mere month ago. Some may find it weird, some may think I’m on my way to a major breakdown (maybe I am) and some may think I simply don’t care. What most don’t realize is that the disease took him from me years ago. It has been at least 4 years since the last time we held a real conversation, 3 years from the first time he asked me my name, 2 years since I’ve heard his voice coherently and then this past year – nothing but pain and suffering for my family.

On October 18th, 2016 Alzheimer’s finally took my Daddy. It’s an odd feeling – I am selfish and want him here with me but no body deserves to live in the condition that Alzheimer’s left him in.

My Stepmom (who is a super hero in my opinion) was by his side as he left us. Moments before he passed I was able to tell him over the phone that I loved him and it was OK for him to go, and he did.

The minutes, hours and days to follow were a whirlwind. Between calls to the family, arrangements and traveling there wasn’t much time for my own emotions. The love and support from everyone was overwhelming. For me personally, it seemed like his death had already happened so long ago. At this point I was just putting into place all the things I had been preparing for since his diagnosis in 2009.

I have missed my dad for years even though he was still here. I mourned his death before he physically died and learned how to live without him before I really had to. I think that’s what the disease does to those around the person suffering. You go numb because it’s the only way to get through it, there is no hope, there is no survivor, there is only the love you have for them and the peace you wish them.

We still need our first survivor and sadly my Dad wasn’t him. I’m pleading with everyone to get involved – I’m 32 years old and my dad is gone and has been (mentally) since I was 28. That’s too young to lose a parent. Help put an end to Alzheimer’s!

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Actor and comedian Seth Rogen and his wife, Lauren Miller Rogen, have found a unique way to fight Alzheimer’s – a condition that isn’t usually a laughing matter…

Actor and comedian Seth Rogen and his wife, Lauren Miller Rogen, have found a unique way to fight Alzheimer’s — a condition that isn’t usually a laughing matter.

The couple know its effects firsthand: Lauren’s mother, Adele, was diagnosed with early-onset Alzheimer’s at 55. The actress and comedienne also lost two grandparents to the disease.Seth and Lauren Miller Rogen

As a way to raise awareness among millennials — along with money for research and care — the pair decided to do what they do best: Make people laugh. The result was Hilarity for Charity. The variety show, now an annual fundraiser held in Los Angeles, has drawn support from the likes of Paul Rudd, Bruno Mars, The Backstreet Boys, and Samuel L. Jackson, among others.

Since the organization’s founding in 2012, the events have raised more than $5 million. In 2014, the Rogens launched HFC U to encourage college groups to host their own versions.

“I want young people to know that Alzheimer’s isn’t something to worry about just when you get old,” Rogen says in his Hilarity for Charity bio. “And that we can tell a few jokes along the way to finding a cure.” The duo are also Celebrity Champions for the Alzheimer’s Association.

Click on this link to see the whole video! http://www.webmd.com/healthheroes/video-seth-lauren-rogen

Holiday Tips – How to Manage the Holidays when your loved one has dementia or Alzheimer’s disease

The holidays are  full of emotions, so it can help to let guests know what to expect before they arrive.

If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself.  Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.

If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited.  These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.   

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

  • “I’m writing to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
  •  “You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
  •  “Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
  • “Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do I.”

TO SEE OUR ENTIRE HOLIDAY TIP GUIDE, VISIT THIS LINK!

https://www.alz.org/care/alzheimers-dementia-holidays.asp

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.

 

Alzheimer’s Associations Free Educational Program

10 Warning Signs of Dementia: The Importance of Early Detection

MONDAY, NOVEMBER 21st

Tower Road Branch Library in Gainesville, Florida

The Alzheimer’s Assocation will be conducting a free educational program! This one-hour program will focus on early warning signs/symptoms of dementia, the difference between these symptoms and normal aging and the importance of early diagnosis.

The session is designed for family caregivers, professionals and other community members who want to learn more about this subject. There will be plenty of time for individual questions.

THERE IS NO COST TO ATTEND! EVERYONE IS WELCOME! 

10 Warning Signs of Dementia: The Importance of Early Detection

Tower Road Branch Library – Gainesville, FL 

3020 SW 75th Street, Gainesville FL 32608

Monday, November 21st from 2:00 p.m. – 3:00 p.m. 

If you are interested in attending or have any questions, please call us at 800-272-3900 or e-mail dhuckabee@alz.org 

 
 

Early-Stage Support Groups and Education Programs Calendar

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Early-Stage Support Groups and Engagement Programs Calendar

RSVP’s are required, call our Helpline at 1-800-272-3900

North Florida

Connection Cafe at Bagel Market and Bistro – Leon County – 6267 Old Water Oak Road, Tallahassee FL 32312 – 1st Thursday of every month @ 2:00 p.m. 

Memories in the Making© – Duval County, Jacksonville FL – location and date TBA

Memories in the Making© at Southside Village Recreation Center – Lake/Marion County – 723 Webb Way, The Villages FL 32159 – 3rd Tuesday of every month @ 10:30 a.m. RSVP IS REQUIRED! (321-972-8867 or infocnfl@alz.org)

Coping as Couples Support Group at Southside Village Recreation Center – Lake/Marion County – 723 Webb Way, The Villages FL 32159 – 1st Tuesday of every month @ 10:30 a.m. RSVP IS  REQUIRED! (321-972-8876 or infocnfl@alz.org)

Early-Stage Support Group at Altrusa House – Alachua County – 2002 NW 36th Avenue, Gainesville FL 32606 – 2nd and 4th Tuesday of every month @ 2:00 p.m.

Google Hangout Support Group – ONLINE – 3rd Tuesday of every  month at 7:00 p.m. RSVP IS REQUIRED! 

ALZ Connected – ONLINE – http://www.alzconnect.org – Online 24/7

Central Florida 

Coping as Couples Support Group at Alden Courts – Seminole County – 1057 Willa Springs Drive, Winter Springs FL 32708 – 1st Thursday of every month @ 12:00 p.m. (noon) RSVP IS REQUIRED, LUNCH WILL BE SERVED!

Coping as Couples Support Group at Winter Park Community Center – Orange County – 721 New England Avenue, Winter Park FL 32789 – 1st Wednesday of every month @ 1:00 p.m.

Coping as Couples Support Group at One Senior Place – Seminole County – 715 Douglas Avenue, Altamonte Springs FL 32714 – 1st Tuesday of every month @ 2:00 p.m. RSVP IS REQUIRED! (800-272-3900)

Memories in the Making© at One Senior Place – Seminole County – 715 Douglas Avenue, Altamonte Springs FL 32714 – From August 10 to November 16, WEEKLY, Wednesday @ 1:00 p.m. RSVP IS REQUIRED! 

Memories in the Making© at the Maitland Public Library – Orange County – 501 South Maitland Avenue, Maitland FL 32754 – From August to December, SELECTED MONDAYS @ 1:00 p.m. RSVP IS REQUIRED! 

Memories in the Making© at the New Smyrna Beach Library – Volusia County – 403 Magnolia Street, New Smyrna Beach FL 32168 – From September to February, SELECTED MONDAYS @ 10:30 a.m. RSVP IS REQUIRED! 

Anne and Conrad: From Wife and Husband to Caregiver and Patient

By  Alzheimer’s Association Interns: Diana Gomez, Nadia Lieb and Cullen Peele

As interns for The Alzheimer’s Association, we understand the grave reality of a dementia diagnosis and the dark cloud it can cast over a family.  Whether it has been through personal experience or a simple insight into the disease’s plague, it’s a common observation that Alzheimer’s is truly the purple elephant in a room no one wants to talk about.

Listening; or in some cases not listening; to our families deal with a disease which affects nearly 65 million people worldwide can be a negative experience.  Recently, we spoke to a woman with a thick Georgia accent, classic southern charm and an extraordinarily positive outlook on life. She was a breath of fresh air for us all.  Anne is a woman who is not afraid to acknowledge Alzheimer’s with a charging fist.

anne conradAnne and Conrad of Amelia Island, Florida have been married for 34 years. They are two of the many faces of Alzheimer’s disease. Anne is a caregiver, wife and advocate of this tragic disease. Anne discusses her and Conrad’s marriage and likens it more to a parent –  child relationship. She talks about the emotional toll this experience has had on them.

When Conrad started letting their dog, Lilly outside and forgetting where she was, Anne knew something wasn’t right.  Through a series of trials and studies at Emory University over the course of a few years, the couple finally received a diagnosis in 2007. By then, Conrad already experiencing  the typical stages of decline, was subsequently prescribed almost all the Alzheimer’s drugs currently available (according to Anne).   

Anne: “We participated in every study they [Emory] asked us to participate in, even if he didn’t want to. I would say ‘yes we are’. We are going to help other people, Conrad.’”  

Anne, who also plays bridge, decided to organize a tournament this year in honor of The Longest Day – a signature event hosted by the Alzheimer’s Association each June to raise funds and awareness.  Teams donate money to further advance Alzheimer’s research and treatment. Like many other caregivers who carry a similar millstone for their loved ones, Anne is very passionate about fighting for a cure.

“He [Conrad] has been dealing with this disease for eight or nine years, and he is doing better than anyone I know,” Anne jovially expressed in her southern drawl.  

A Day in The Life of Anne and Conrad

As early risers, Anne and Conrad start their day around 6:00 A.M.  The two enjoy coffee together, and she helps him get dressed before the bus comes to take him to the local adult daycare facility for a few hours.  Their favorite activities together include running anneconraderrands – with Conrad watching the dog in the car during each stop – or simply enjoying a (watered down) cocktail together each night.

Anne: “If you do not take care of yourself, you cannot take care of your loved one,” she says, speaking of her own transformation from wife to caregiver. Then, she pauses and offers some words of wisdom, “You’ve got to laugh; you’ve got to get out; you’ve got to see other people; you’ve got to have a life”. 

On Saturdays and Sundays, Anne takes a few hours to herself and gets some much-needed
help. Someone comes in to watch Conrad while she shops, has dinner with friends or goes to see a movie.  Anne talks about being extremely blessed to have these luxuries, “Some
people don’t have enough money to get the kind of help and support we have,” she says. “I have the ability to utilize adult daycare and provide private help for Conrad – there are so many others who can’t afford to do this.”

Today, Conrad is still unaware of the severity of his condition.

Anne laughed as she reminisced on this past year’s Easter Egg hunt at their church. “Conrad laughed and said to me ‘the best part of memory loss is that I can hide the eggs and find them too,’” she shares. “It’s important to find the humor in things and Conrad always does. If we didn’t laugh, we would cry,” she laments. 

Alzheimer’s Association Summer Safety Tips

Alzheimer’s Association Summer Safety Tips:

The pleasures of summer include longer, warmer and sunnier days, celebrations with family and friends, and backyard BBQs. For the person caring for a loved one wialzblog1th Alzheimer’s disease, summer can also bring with it additional safety challenges. By taking a few minutes to review the following safety tips, families can enjoy a fulfilling and pleasant summertime together.

Sunshine and Warm Weather

• Limit your loved one’s exposure to the sun. Place lawn chairs in shaded areas. Stay indoors between 10 a.m. and 2 p.m. when the suns rays are the strongest. Encourage your loved one to wear a hat and sunglasses.

• Remind your loved one with Alzheimer’s disease to apply and reapply sunscreen when outside for long periods of time. 

• During the summer it is especially important to drink lots of fluids. Keep a cool glass of water within arm’s reach as a reminder. Add a flavor to the water to make is more interesting and tasty. Provide non-alcoholic beer or lemonade for backyard BBQs. alzblog2

• Decision making may be increasingly difficult so dressing appropriately for hot days can be hard. Put away winter clothes, boots, gloves and hats, and replace them with just one or two choices of shirts, pants or shorts/skirts, a hat with a large brim and a light jacket or sweater.  

• Enroll in or if necessary, update information with, the Medic Alert + Alzheimer’s Association Safe Return to reduce the risk of wandering.

Summer Fun

• Loud noises and crowds can increase anxiety. Consider watching fireworks from your home or in the quiet of the car and parades on television; picnic on a weekday or early in the day on a weekend when crowds are lighter. 

• Never allow unsupervised access to fire pits, and the hot surfaces of BBQ grills or campfires.Woman meditating

• Attending a minor or major league ballgame may be something your loved one has always enjoyed. However, large crowds can be overwhelming for the person with Alzheimer’s disease. Identify a “buddy” so you don’t lose track of who was supposed to stay with your loved one, accompany your loved one to the restroom and the concession stand, and stay with them at all times. Watch for signs of discomfort or confusion.

• Do not allow an individual with Alzheimer’s disease to swim unsupervised, and do not leave children in the pool under the supervision of the person with Alzheimer’s disease, even for a short period of time.

• If your loved one still enjoys bicycling, consider accompanying him on the ride or ask a trusted companion to accompany him.  Encourage your loved one to wear a helmet and to ride on trails designated for pedestrians and cyclists. Or look into spin classes at the local recreation center.

• Keep an eye on sharp gardening shears or tools and closely monitor their use. Use fertilizers that are not harmful if swallowed accidentally and ensure that the plants in the garden are not poisonous. Keep a box full of tools with gloves so your loved one can easily find it and everything is in one place.alzblog3

• Family reunions can be overwhelming to the person with Alzheimer’s disease and may rely greatly on her ability to recall names and faces. Consider limiting the amount of visitors and prepare both family members and the person with Alzheimer’s disease in advance for the visit. Try using fun name tags and get everyone involved to reduce embarrassment for the person struggling with names. Have a back-up plan that will allow for a quiet place to rest if things become overwhelming or confusing. 

• Many families plan vacations and trips during the summer. New and unfamiliar places can be confusing for the person with Alzheimer’s disease. It may also provide clarity for the family that there is in fact an issue with memory loss and other symptoms of dementia that earlier were undetected. Contact the Alzheimer’s Association upon your return if you are concerned about new behaviors or symptoms you may have noticed once away from home. Consider simplifying travel plans or traveling to a familiar destination. Most airlines offer companion programs for those traveling with special needs. That way you can be assured a loved one has arrived safely alzblog5 made a connection without any problems. Alert the Medic Alert + Safe Return registration phone line of your travel plans and provide them with contact information for your destination. 

Important Contact Information

  • Alzheimer’s Association 24-Hour Helpline – 1-800-272-3900
  • Medic Alert + Safe Return Enrollment Line – 1-888-572-8566
  • Medic Alert + Safe Return Incident/Emergency Line – 1-800-625-3780

Orlando Goes Purple for a Purpose

The City of Orlando and the City of Winter Garden turn purple for a purpose on Monday, June 20th

June 16, 2016, Orlando, FL – In light of recent, tragic events, Orlando remains vibrant, strong and committed to casting a spotlight on Alzheimer’s disease as the City goes “purple with a purpose” on Monday, June 20th. 

There are an estimated 5.2 million Americans, over 500,000 Floridians, and nearly 60,000 Orlando area residents living with Alzheimer’s disease. Florida has the second highest incidence rate in the country for Alzheimer’s and dementia making it “ground zero” for the disease. Alzheimer’s it the sixth leading cause of death in the country, and the only disease among the top 10 leading causes of death without a prevention, treatment or cure.

During the month of June, the Alzheimer’s Association is celebrating Alzheimer’s & Brain Awareness Month (ABAM) in an effort to raise awareness and support, as well as to let Orlando area residents know that there is help in the community. “We offer a 24/7 Helpline manned by dementia specialists every day of the year, every hour of the day and night,” says vice president of programs, Julie Shatzer. “We provide caregiver support groups, education programs, art programs and a host of offerings both in English and in Spanish to all residents,” she adds.

The City of Orlando and the City Winter Garden, have committed to going “Purple with a Purpose” in honor of Alzheimer’s & Brain Awareness Month. Major landmarks in the area will be purple all day and night on June 20, the summer solstice – the longest day of the year. To honor those who are caregivers for their loved ones; where every day might feel like the longest day, the Alzheimer’s Association is hosting its annual Longest Day® event from sunrise to sunset nationwide to celebrate all those that have succumbed to the disease and the many caregivers who have loved them. Major sites that are going purple with a purpose should include:

Orlando:
· Astrogenesis II

· Global Coverage

· Take Flight

· Union

· Cedar of Lebanon

· Amway Center Sign

· Orlando’s Tower of Light

· Lake Eola Fountain, Lake Eola Park – Downtown

· Orlando Sign at Citrus Bowl

Winter Garden:

· Citrus Fountain

· City Hall

· Local Downtown Art Gallery
Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit our website or call 800-272-3900.

The Longest Day with Gary Koski

The longest day of the year will be June 20 th and on behalf of Eastbrooke Gardens, Gary Koski will participate in a 16 hour triathlon to benefit the Alzheimer’s Association. The triathlon will commence at 5am from the Downtown Orlando, YMCA and concludes at the Winter Springs, Tijuana Flats at 9pm.


Gary will complete the following:
 Swimming (5hrs & 20mins);

 Cycling (5hrs & 20mins); and

 Running (5hrs & 20mins).

Gary will complete most the activities solo except the running portion where he will be joined by his brother, Steve Koski, who has graciously, offered to accompany him. Gary is the Activities Director at Eastbrooke Gardens and has witnessed the effects this disease has on the elderly population. As the Activity Director Gary and his staff work to engage the residents with their cognitive functions and ensure they are continuously entertained to minimize distress or frustration brought on by this progressive disease. The staff at Eastbrooke Gardens is incredibly proud that Gary has opted to take on this event and will be cheering him along with his wife, Catharine Koski. We invite all to come and congratulate him at Tijuana Flats on the Monday, June 20 th between 8-10PM. If you mention his name or Eastbrooke Gardens upon your order a portion of your receipt will be donated to the Alzheimer’s Association.

Support Gary

Uncovering the Truth About Alzheimer’s Confronts Damaging Myths About the Disease

The Alzheimer’s Association Offers More Information for Alzheimer’s & Brain Awareness Month this June. 

June 1, 2016, Daytona Beach, FL – June 1 begins Alzheimer’s & Brain Awareness Month (ABAM), as the Alzheimer’s Association confronts damaging myths about the disease.  It is now common knowledge that Alzheimer’s robs people of their ability to remember, but we now know that it is a fatal disease with symptoms that extend past memory loss and can affect anyone, at any age.

6th cause of death

  • Truth: Alzheimer’s disease, the sixth-leading cause of death among Americans, leaves no survivors and is the only cause of death among the top 10 in America that cannot be prevented, slowed, or cured. Every 66 seconds, someone is diagnosed with Alzheimer’s disease.
  • Truth: Early diagnosis matters. A common misconception is that Alzheimer’s disease is normal aging. With an estimated half a million Floridians and nearly 16,000 Volusia County residents living with Alzheimer’s disease, studies show less than half have been diagnosed. Early diagnosis means families living with the disease can plan and build a solid support system.
  • Truth: Risks are higher among some more than others. African-Americans are about twice as likely as Caucasians to have Alzheimer’s or another dementia. Hispanics are about one and a half times as likely; and
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    Cullen Peele advocates on Capitol Hill.

    more than two-thirds of Americans with Alzheimer’s disease are women – making women nearly two times as likely to get Alzheimer’s as men.

  • Myth: Alzheimer’s is an older person’s disease. The truth is one in nine people age 65 and older will be diagnosed; and one in three seniors will die with Alzheimer’s disease. Although age is the biggest risk factor, Alzheimer’s disease can affect anyone with a brain.  “My father was diagnosed at age 59 when I was a junior in high school.  It blindsided our family and devastated our future plans,” says Cullen Peele, Alzheimer’s Association Young Advocate.  “Now, I work with the Alzheimer’s Association so there is a chance others can avoid our tragic loss.”

  • Myth: Alzheimer’s disease is just memory loss. The truth is Alzheimer’s is a fatal disease there are no survivors. From 2000-2013, the number of Alzheimer’s deaths increased 71 percent, while deaths from other major diseases decreased.

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  • Myth: There is no way to reduce your risk of Alzheimer’s disease. The truth is staying mentally active, engaging in regular physical activity and eating a healthy diet benefits your body and your brain. There is also some evidence people may benefit from staying socially engaged with friends, family and the community. The Alzheimer’s Association is sharing steps to reduce your risk of cognitive decline with 10 Ways to Love Your Brain.

 

 

“Our Central and North Florida Chapter provides education programs, support services and resources to all of our local families in need,” says chapter CEO Kay Redington. “During Alzheimer’s & Brain Awareness Month, we encourage everyone to show their support by participating in the Longest Day on June 20th and wearing purple during the month of June.”

To get involved: Longest Day Kayaking

Participate in The Longest Day® on June 20, a sunrise-to-sunset event to honor those facing  Alzheimer’s disease with strength, heart and endurance.

             longest day picture gardening team

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Local businesses and organizations are encouraged to shine a light on Alzheimer’s by lighting their buildings purple this month to show their support and raise awareness. Visit alz.org/cnfl or call 800-272-3900.

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Join the Alzheimer’s Association in wearing purple throughout the month, especially on June 20. Share photos of yourself, family, friends and co-workers wearing the movement’s signature color via Twitter, Facebook, Instagram, etc. with the hashtag #ENDALZ and #IGoPurpleFor. At alz.org/gopurple, find out who else is going purple for Alzheimer’s.

 

Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.

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