Nov 182015
 

Laura HanniganIt’s a lot easier to say change isn’t easy than it is to experience change yourself.  I recently found this out firsthand when I said goodbye to friends, residents and coworkers at Brookdale Hillsborough, where I served as the Clare Bridge program manager for two years. In becoming the new executive director at Brookdale Hamilton, I wouldn’t be far away geographically, but away from the “family” I had grown to love.

Clare Bridge is Brookdale’s individualized and person-centered program designed to meet the specific needs of those living with Alzheimer’s and dementia. We celebrated many daily moments of success at Hillsborough, including the success of our Hillsborough Walk Team’s efforts and fundraisers.

Brookdale Hillsborough WalkOver the past three years, the Hillsborough Walk Team picked up momentum and grew from raising $600 the first year, $1,800 the next year, to $6,000 with matching gifts in 2014.

Brookdale working TogetherWalk to End Alzheimer’s is an energizing event that we all look forward to all year long. It was a chilly day this year, but our hearts were warmed by the incredible crowds and inspirational speeches, as people proudly carried team banners. We were all so honored to be part of this impressive turnout supporting the Alzheimer’s Association. Words cannot express the warm feeling we all shared and carried home in our hearts from hearing the speeches, receiving the flowers, and for sharing such a special day with so many people.

After this year’s Walk, we asked residents, their families and each other for additional fundraising ideas. Boy, did we get some good ones! Our tireless team entertained guests, prepared and served great food, decorated the building and made these events a wonderful time for all. A silent auction was our biggest hit.

Brookdale Taking in the Autction Bids

The silent auction really was a family affair.  Residents, their families and Brookdale associates donated all types of items to be auctioned off.  From hand knitted afghans to new appliances and Waterford crystal, the spirit of giving filled the community.  It was lots of fun and, at times, seriously competitive.  Our assisted living resident Roz and a Clare Bridge resident’s family helped man the silent auction, challenging others to outbid each other, and thus encouraging families to donate more to this great cause.

Brookdale Families Enjoying Silent Auction

Between our Walk and our other fundraising events, I couldn’t help but feel an overwhelming sense of pride in the Brookdale Hillsborough family. I, like so many others, have had family members who have had Alzheimer’s. I was touched by my grandmother’s experience and by the rough time my fun-loving uncle had with the disease.  When I play a tiny part in helping someone live at the highest level they can, I am so touched by the moment, and know I’m getting far more than I give.

Laura Hannigan and her Brookdale team of community associates, residents and resident families exceeded their wildest fundraising dreams for the 2015 Walk to End Alzheimer’s.

Nov 052015
 

I don’t have Alzheimer’s, and I’m not a caregiver for someone who does. I have no family members suffering from Alzheimer’s. In fact, my family has no history of Alzheimer’s disease.

My name is Wes, I’m 36 years old, and the Alzheimer’s Association has been my charity of choice for more than 10 years.wes1

“What?” “Why?”

It’s true; I’m not your “typical” advocate. But the truth is that this disease has made a lasting impression on me and in my life.

While working as a journalist in 2004, I was asked to write a story about Alzheimer’s. I didn’t know much about the disease. After completing some initial research, I felt the best way to tell the story was to interview people who were suffering from Alzheimer’s and their caregivers and care partners.

I’m not going to sugarcoat it; the interviews were heart-wrenching. At times, I cried. A grandmother was forgetting her granddaughter; a father his daughter. These wonderful and kind people were forgetting their most cherished memories and everything they once were as each day went by. The toll on their caregivers, I learned, was immense too.

Since then, the Alzheimer’s Association has been my charity of choice. Currently, I’m the marketing chair for the Miami Walk to End Alzheimer’s, and no matter where I’ve lived (Lafayette, St. Louis, Memphis and Miami), I’ve raised funds and have walked to end Alzheimer’s.

This year I had the opportunity to fly before I Walk. On July 30, as the 18th recipient of the JetBlue “Flying It Forward” ticket, I flew from Ft. Lauderdale to Chicago to visit the Alzheimer’s Association National Office. My goal was to meet the leaders who are fighting this disease and take their best practices back to the Southeast Florida chapter.

I learned about the programs the Association offers, its research efforts, and Walk to End Alzheimer’s marketing and fundraising tips. I also visited the National Contact Center, where the 24/7 free, helpline is answered.  Did you know the National Contact Center handles an average of 3,750 calls a week?! I learned a lot during my visit and I will cherish the trip for the rest of my life.

wes2Here are a few of the things I learned:

  1. Wear your Walk shirt – Walk to End Alzheimer’s shirts are not just for Walks. Wear them throughout the year, especially in high-traffic areas such as airports, sporting events and shopping malls. People will approach you and ask about your involvement and the cause and may even share their personal stories.
  2. Memorize the 24/7 Helpline – If someone approaches you with interest in or needs help from the Alzheimer’s Association, offer the 800.272.3900 24/7 Helpline! You can also print business cards with the helpline info on it so you can easily hand it out.
  3. Tell your story – Storytelling allows you to make a connection with people. Share your story to increase your Walk fundraising and raise awareness of this disease. My personal fundraising spiked when WGN TV featured my trip after I had asked people to share my story through their social networks (Facebook, Twitter, LinkedIn, etc.).
  4. Get creative – I have friends who always want me to join Facebook even though I’ve opposed it for years. But then I saw an opportunity: I told them that if I raised $10,000 to end Alzheimer’s, I would join, and many of them have donated!

Just as Alzheimer’s has made a lasting impression on me, I hope to make a lasting impression by continuing to join Walk every year. It’s important to note that JetBlue did not select me for the program that resulted in my visit to the Alzheimer’s Association National Office. Amy, the past recipient of the “Flying It Forward” ticket, chose me because she has two uncles who are suffering from Alzheimer’s.

So when I walk in Miami in November, I’m now Walking for them too.

About the Author: Wes Milligan is a communications advisor at FedEx Express, Latin America & Caribbean Division, where he is responsible for internal and external communications. Wes lives and works in Miami. You can visit his Walk page here.

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Sep 282015
 

Four years ago, Mom quit her job so that she could come help me with my twin boys after they were born. I was an exhausted first-time mom who had no clue what I was doing. It was a huge relief to have her by my side during that time.

I started to notice little things about Mom that were different; rather than read too much into anything, I figured that we were both just exhausted. Then the little things started to happen more often. After many doctor’s appointments and tests, my parents visited the Mayo Clinic. It was there, in September of 2011, that my mom was diagnosed with early-onset Alzheimer’s disease at the age of 59.mb1

I was stunned, paralyzed with fear. People that young didn’t get Alzheimer’s, did they? Would she wake up and just not know me? What is Alzheimer’s, really?  Now what? What do we do?

These were all questions that went through my head. To be honest, they still do. I lived in denial for a long time, doing more research than I knew what to do with. The doctors were wrong, I thought. Some days she seems fine!

It took me a long time to accept the “new version” of Mom. I would get so frustrated, not knowing how to comprehend the disease. I finally sat down with her one day after we put the boys down for a nap, and I asked her what it was like. I wanted to know. I wanted to understand.

mb3She tried as best as she could to explain her thoughts and feelings to me. We cried a lot; we still cry a lot. My mom is my best friend, and her diagnosis has been a long slow process for me. I knew then that I needed to do something to fight for Mom, and fight so I don’t have to live with this disease myself.  I needed to find a way to deal with what was happening and to surround myself with people that understood.

Since I can’t change Mom’s diagnosis, I decided to fight like crazy to change it for someone else.

This last weekend was my second time walking in the Walk to End Alzheimer’s in St. Cloud, Minnesota. Joining Walk to End Alzheimer’s is about more than just raising money for me. While it’s so important to fund research that leads to a cure, my biggest mission is to spread awareness. I want to educate people about what Alzheimer’s really is, and how the ability to complete daily tasks that so many people – including me –take for granted are a huge struggle for my mom and so many others with the disease.  Connecting with others in our community at Walk who understand what we are going through is so comforting, and uniting to make a difference is such a great mb2feeling! Being involved with Walk to End Alzheimer’s has been very therapeutic for me, because I know I am working hard to make a difference. I also know my mom is proud and grateful for what I am doing.

mb4

Our family has always been very close-knit; while it’s not always easy, we try to maintain traditions and create new memories, because we are in this together. We understand how each other feels. We are going to fight endlessly so that others don’t have to slowly lose their mother the way I am. This is not a disease that should be hidden or kept quiet. Alzheimer’s is taking over our population, and people need to know what’s happening. We need to talk about this disease. We need to help educate people. We need to Walk.

 

About the Author: Meghan Blenker, 30, is a mother of three. She Walks as Team Captain of Grammy’s Gang

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Sep 112015
 

Of the 5 million people in this country living with Alzheimer’s, about 200,000 have younger-onset/early-onset Alzheimer’s. It is not an “old person’s” disease. Some people are diagnosed in their 30s, 40s or 50s. One of them was my wife – my sweet Melinda.

Melinda is the reason I Walk to End Alzheimer’s.

Melinda was once a trial lawyer, a scratch baker, an excellent cook, needlepointer, crafter and seamstress. These talents, along with her incredible intellect, engaging smile, laughter and her love for her family made her a wonderful mother and wife.

bruce3

In 2010, Melinda was diagnosed with younger-onset Alzheimer’s at the age of 54. We were shocked and frightened.  For whatever reason – which I cannot explain but am thankful for – Melinda did not seem to dwell on her diagnosis. She remained cheerful in the face of the disease.

Melinda was in an adult day center four days per week between April and August of 2014 so that I could continue to work to support our family and retain our health insurance coverage. On September 2, 2014, I made the hardest decision of my life, determining that she needed to be placed in a long-term memory care facility.

Younger-onset Alzheimer’s is life-shattering. Younger families have children who see the progression of the disease, and therefore experience the ongoing loss of a parent. Breadwinners in the prime of their careers struck with the disease become unable to work, and if they haven’t worked long enough, they won’t be entitled to disability benefits. Families in the prime of their lives are destroyed by a disease that never takes a day off.

bruce2I Walk with the hope that other families will not have this fate.

The impact on our sons Matt and Ben is impossible to measure. Despite the loss of the mother they once knew, they adapted, rallying to help both her and I deal with the day-to-day challenges we faced.  Thankfully, this has not impacted their education. Matt graduated with the highest honors and found employment with a Big Four CPA firm.  Ben is succeeding at the School of Engineering at Mizzou.  I hope they are able to take away from this journey the love, patience and devotion I have tried to give to their mom and that their experiences will make them better people, as I know mine has made me a better husband, father and person.

I Walk in memory of Melinda.

My sweet Melinda passed away on January 14, 2015. I miss her terribly. I believe she is free from this insidious disease that shows no mercy, and that she is now at peace.

Since Melinda’s diagnosis in 2010, I have immersed myself in Alzheimer’s science and research, attending symposia featuring eminent scientists and physicians whose mission is to find the cause and, ultimately, the cure for this dreaded disease.

Melinda’s Memory Warriors Walk to raise money for research and a cure.

There is an oncoming avalanche facing our society. Of the top 10 causes of death in this country, only Alzheimer’s cannot be prevented, cured or slowed. The thought of losing one’s memory and ultimately one’s dignity is frightening. By participating in the Walk to End Alzheimer’s, we are letting the world know that now is the time to increase the awareness of a disease that will cost our government trillions of dollars in the coming decades if a bruce1treatment or cure is not found.

This is a real crisis for our nation and for the world as a whole. The avalanche is out there, and it will be here before we realize it. Join me today by lending your voice and your legs to the cause in the Walk to End Alzheimer’s – for me, my sweet Melinda, and all of those who live with this devastating disease.

 

About the Author:  Bruce Friedman Walks on team Melinda’s Memory Warriors. He was a featured speaker at the Alzheimer’s Association St. Louis Chapter’s 2015 annual “An Affair to Remember” gala fundraiser and was recently nominated for a position on the National Advisory Council on Alzheimer’s Research, Care and Services. Bruce was selected in 2014 as the Best Lawyers’ Lawyer of the Year in St. Louis in the area Family Law.

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Aug 202015
 

My mother told me, when I was rather young, that no one’s soul ever dies. I imagine that each memory is a small flame, burning amidst so many others. They eventually create a swirling, shimmering glow, illuminated by love, flying up, up, up, until they light the sky with a brilliant glow.

As we walked through the halls of the clinic, I spotted a ninety-year-old woman on her bed, eyes wide, mouth open as if trying to scream. No sound came out. Her breath came in heavy gasps. A shriek, as a patient slumped over in his wheelchair. His orange juice splattered across his white t-shirt. A moan, as patients cast slow, lingering glances at random objects, their tennis-balled walkers gliding slowly across the cold, tile ground. A yell. A patient’s flare of anger at an invisible phantom, lurking behind the humming refrigerator. A groan. Patients forget, their old minds giving way beneath the weight of their disease. A cry. Another memory casually fizzled into the air. Wearing a red uniform, a nurse guided us into another depressing room, then another, and it seemed like the corridors and rooms were endless. Dark beige walls and dim lamps created a somber, gloomy effect, which is probably an understatement. Finally, we reached the hallway which led to where my grandmother was. Maliha, my grandmother.haris2

Silently, we walked to the television room, where there was a large group of elderly, white haired men and women, each focusing on the TV, although it was clear to me that they had no idea where they were or what was playing on that strange, small sound omitting box. Scanning the room, I finally located my grandmother in the crowd, sitting and chatting with another patient in her native language, Farsi. Because she was the only one in the entire room who was saying anything, we walked over towards her. Once she looked up at us, my mother and father bent down and kissed her on the cheek, and, as usual, there was not a significant sign of recognition radiating from her. However, she did say hello and converse with us; some friendly habits die hard. My sister gave me the usual quizzical looks whenever my grandmother would address her, due to my grandmother’s no longer sensical or straightforward phrases. Then, she looked me in the eyes, an unfamiliar look on her face. Studying her very closely, I noticed a food stain her collar. Her hair was turning gray. Her eyes, though, were the same as ever. She said to me, “What is your name, honey?” Each word came out with a struggle; she was slowly losing her English. I remember the precise way she said those four words: Long, drawn out syllables and consonants fighting, clawing their way out of her quivering lips. This question was common. I usually simply replied and told her my name over and over. However, it was as if suddenly, I could not speak; my whole body went rigid. Tears welled up in my eyes, and my throat constricted. Slowly, my palms went damp, and, in a long, reluctant, moment, I quietly mumbled my name to her. Distractedly, she nodded and smiled, clearly having no clue as to who I was. She continued to speak nonsensically, but I could not take it anymore. Feeling suffocated, I excused myself, and I burst out of the room and went to the bathroom.

Perhaps I should not admit it. Maybe I should hide it out of fear of being judged, but I will not. I will tell everyone: I cried.

harisNever again would my grandmother recognize me. It is not fair that someone who was once a kindergarten teacher, who had done so much for me and my mother, was now robbed of what was so rightfully hers, her memory. Nothing belongs to one person more than their own thoughts and memories, but hers were taken from her. I could not, perhaps still cannot, understand why she was chosen, why she was the one to lose her own beliefs, theories. It is one of the questions I would ask God, or whoever or whatever took my grandmother from me.

When I felt more relaxed and slightly less distraught, I walked back out. Quietly strolling down the hall, I stopped at her room. No one was there because my parents, sister, and grandmother were in the television room. So, slowly, I crept inside and sat on the bed. Reaching under her bedside table, I brought out a box my mother made for her, filled with pictures of my grandma, mother, uncles, aunts, cousins, and friends. As I looked, I suddenly stopped. In front of me was a picture of my grandmother. Standing in front of a tree, she looked to be in her mid thirties, with long black hair. All my life, I had been told that my grandmother was a beauty, so I was not surprised by her striking appearance. Instead, I was transfixed by the depth of her calm, knowing gaze, and the picture revealed a profoundly subtle side of her that I had never seen in other pictures. Her smile showed no teeth, just a small upward curve of her thin lips, and there was, somewhere, a shimmering inward beauty radiating from her. That image woke something, it illuminated something, a rare acceptance that I had not experienced since before my grandmother was diagnosed.

Out of nowhere, I remembered a quotation from her favorite poet, Hafiz, that she would always recite: “Even after all this time The sun never says to the earth, “You owe Me.” Look what happens with A love like that, It lights the Whole Sky.”

Looking at the picture of my grandmother, a flood of memories of how she was before the disease rushed back to me. How her eyes twinkled when telling a story, how she would hum when music was playing, how delicious her cooking was, how much she loved me and my sister and my mother, and not once did she ever say, “You owe me”. Not when she raised and cared for my mother, nor did she say it when she watched and gave advice to me and my sister. Now, she was the vulnerable, weak one, who needed our love more than anything in the world. So, we gave our love, as freely and plentily as she had given her love to us. Hiding the picture in my back pocket, I carefully closed the lid of the picture box. Stowing it beneath the table once more, I walked out to the television room.

Everyone was preparing to leave, so I followed them. When we left, I looked behind me, and for just a brief second, I saw that familiar look of understanding, that twinkle in her eye, the calm smile. It was like old times, when she would tell stories and throw her head back and laugh with me. In an instant, she was Maliha again. But, as all things do, it left.

I am glad, if not relieved, that the last image I can conjure of that day is of my grandmother’s eyes. They are sincere, genuine, and tender, welcoming me into her warm, loving embrace. They are not from a picture, or any clear memory I have of her. Just a figment of my imagination. Sunlight brightens the right side of her face, and I can tell she is outside.  I can almost smell the Earth around her and hear the grass rustle with the soft breeze as the sun slowly sets. I cannot say the image is clear. In fact, it is almost a blur in my memory, like an unsteady camera took the picture, only seen through an unclear, perfect haze. A slight glare from the sunlight taints the view. My grandmother’s deep, brown eyes are wrinkled at the edges, hinting to a smile somewhere else. The image just cuts off abruptly, so I cannot see her thin lips, her smile.

But I am not sad. No, no, all is well. No sadness or grief burdens me. She is there, my grandmother, still there, somewhere. That image makes me happy, not sad, because I know, even though I cannot see it, that she is smiling at me, a majestic, radiant smile.

About the Author: Haris Hosseini, 14, won a top prize in the National Council of Teachers of English Promising Young Writers Program with this essay. He and his family participate in Walk to End Alzheimer’s on Team Kayoumy. They walk in support of his grandmother Maliha Kayoumy, as well as countless others living with Alzheimer’s disease.

Haris’s father is New York Times best-selling author Khaled Hosseini, author of The Kite RunnerA Thousand Splendid Suns and And the Mountains Echoed.


Learn more:
Walk to End Alzheimer’s
Alzheimer’s Information for Kids & Teens
Inside the Brain: An Interactive Brain Tour

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