Jun 202014
 

Playing video games for 16 hours is normal for a teenager on summer vacation, but if a bunch of adults were doing it, they would be said to be wasting their day. Not when those adults are defending castles from dragons or hunting zombies to participate in The Longest Day. For 16 hours today, a group of gamers — my fellow coworkers at Geektriumvirate.com, my girlfriend and I — are playing video games to honor those with Alzheimer’s.vg1

I love playing video games. But more than that, I love my grandmother, who is afflicted with Alzheimer’s.

When I first saw the idea for The Longest Day in one of the Alzheimer’s Association emails, I knew immediately video games would be a great media to get friends and family involved. Video games now are rich with online gameplay and cooperative interaction that, for some of my friends, is the only way we are able to share each other’s time. I wanted to give my friends the sense of achievement you get from actually taking part in a charitable endeavor. But more importantly, I wanted to show my family how much I care about what my grandmother is going through.

vg2Today, we are playing a variety of games — Borderlands 2, World of Warcraft, Assassin’s Creed 4: Black Flag — all while sharing the experience with friends via Google Hangout and live streaming the event on our YouTube channel. The morning hours are starting great as teammates Andrew and Amanda are playing World of Warcraft with their guild. Their online guild consists of 250 members from all over the world. Just knowing this event is involving so many people makes me appreciate why I set out to create this event.

Many hours already into The Longest Day, and my thumbs are sore but my spirits are up. Friends and family have been checking in on us via Google Hangout to say hi and watch us. Tonight, we will cap off this important day by visiting the opening party for The Art of Video Games exhibit at the Toledo Museum of Art.

Today has been truly fulfilling as we used the leisurely fun of video games to help an important and serious cause.  I don’t want anyone else to endure what my grandmother endured with this disease. My hope is, there will be an end to Alzheimer’s.

About the Author: When Nathan Dean, 33, isn’t playing video games, he works as a logistics analyst for a marketing agency and is cofounder of the blog GeekTriumvirate.com in Grand Rapids, Mich. This is his first year participating in Alzheimer’s Association’s The Longest Day®Click here to follow Nathan and his team during the event.

Jun 202014
 
nancy hiking

Today, I began the second half of my thru-hike of the Appalachian Trail as part of The Longest Day, an event to fight Alzheimer’s. A thru-hike is a long-distance journey from trail beginning to end. I am dedicating this hike to my mother, Debbie, who at the age of 52, was diagnosed with younger-onset Alzheimer’s.

My mother is the most caring, loving, kind-hearted, independent woman who has ever graced this earth. From the moment I was born she has encouraged me to always fight for my dreams, regardless of the trials I may encounter. This has been burned on my heart, and I have carried that with me every day.

My dream of thru-hiking the Appalachian Trail began back in 2009. I roped my best friend into joining me. The journey was to begin after our college graduation.  Little didnancy harrington and mother I know, the next year my mother would be diagnosed with younger-onset Alzheimer’s at age 52 — and everything would change.

We began our hike in April 2013, but 850 miles in, I noticed my mother’s Alzheimer’s was making her fade quicker than when I had left. The pain in my father’s voice was more evident. In late June, I pulled off of the trail. I could not justify missing a few more good months with her. Since then, my mother has progressed quite rapidly. The pain this disease has caused my mother and her loved ones is unbearable, and it is a pain felt by more than 5 million Americans who also are living with this disease.

For four years, I have fought alongside my father and brothers to make my mother’s life as comfortable as possible. No longer can I sit back and watch this disease hurt more people. This is why today, I continue to hike and extend my fight further. I want to raise money to change the future of this disease.

Researchers have set the goal of finding a cure for this wretched disease by 2025. It is a lofty goal, but one that can be obtained if we all join together.

So far, I have raised $Nancy harrington 25,969 for the Alzheimer’s Association. This fundraiser has been a huge support group for my family and me. By simply telling people my mother’s story, they have immediately wanted to g ive what they could to the cause, and also spread the word. Some donations have been small, a couple of dollars. Others have been larger, and even entailed sports teams joining together to raise thousands of dollars. To me, this is the most beautiful thing. Knowing how much support is out there has helped me immensely in coping with my mother’s condition.

Today, I am asking everyone to join me in honoring my mother and her legacy as I walk toward Mt. Katahdin. I will be in motion throughout The Longest Day, keeping hope for a future where fewer families feel the pain of this disease.

About the Author: Nancy Harringon just completed an internship at the Sierra Outdoor School. Today, she is participating in The Longest Day®, a sunrise to sunset event to honor the strength, passion and endurance of those facing Alzheimer’s. Follow her team, Debbie Harrington

Jun 182014
 

My mom has Alzheimer’s.  And it’s not easy.

Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong.

I was born when my mom was 37 and my dad was 41.  They had already “finished” their family – my sisters were 17, 15 and 13 – but welcomed the surprise.  My mom was involved in everything in our little town, from Rotary Club and the school board to attending college while working full time.  As the matriarch of the family, everyone in town knows her.  The entire family, including Dad, look to her in order to be in the know.



Thanks to you and your votes, the Alzheimer’s Association won a $75K donation in the DSW Leave Your Mark contest.View video

So we weren’t expecting it when we noticed she was not quite on her game.  She was forgetting things. As many tend to do, we attributed it to old age at first.  Because I wasn’t seeing her weekly or even monthly and now lived two hours away, I noticed more dramatic changes than my father and sisters did. We realized that mom should see a specialist, and once she did, we learned what we had feared – mom had Alzheimer’s.

For a while, Mom didn’t want anyone to know.  She was a well-respected community leader still serving on the school board.  As a family, however, we needed support as much as mom did. My sisters and I began researching and reading whatever we could to learn more about the disease; what we should expect, how we should begin planning.Mom n me laughing

I came across the Alzheimer’s Association’s website and started looking for local meetings that I could attend in order to educate myself and my family. I registered for the Walk to End Alzheimer’s and got my family involved.  Mom finally became open to sharing her diagnosis and began “letting go” of some of the things she had always done and accepting help.  This was not easy for her to do, but my mom is strong.

I get my strength from her. We aren’t victims of this disease. We are fighters.

Each of us girls has our strong suit when it comes to taking care of our parents.  From daily home maintenance like mowing the lawn and keeping track of medications to legal planning, paperwork and research, we all have our role.  My dad continues to be my mom’s primary care giver, but as he is not in good health, this wears on him.  But he would never complain, because that’s not what he does.

For me, connecting with the Central Ohio Chapter of the Alzheimer’s Association has provided the support and education I need to face this disease. When I attended my first monthly “happy hour” meeting, I met others like me – moms with young children who care for a parent with Alzheimer’s.  Two of those women continue to be part of my personal support system.  We are all in very different stages now, but when I have a bad day, I can message or text them, and they understand what I am going through like no one else in my life.

Me and Mom St JOne of these women invited me to go to some classes with her that would help me understand what my mom was going through using role play.  At first it seemed kind of silly, but boy did I learn a lot about how I was making things worse when I interacted with my mom! Now I try not to correct her, and I try to understand the frustration she must feel when she recognizes that she is forgetting things.

Knowing about what resources are available has helped me in other ways, such as researching financial advice in order to hold onto the childhood property that has been in my family since our grandparents came to America from Czechoslovakia.  For me, planning and understanding how to have these difficult conversations with our family as a whole has been vital.

And as for mom? She benefits from talking to others with the disease at awareness meetings. Seeing friends in her community decline due to Alzheimer’s is difficult, but it helps her prepare for the future.  Meeting with people who are so driven and determined to defeat this disease gives us hope. Advocates with no personal connection to the disease who speak in local meeting provide assistance and news. Everyone plays an important role.

I’m a doer. And as a woman, the daughter of someone with Alzheimer’s and a mother, I know something needs to be done. I don’t back down. I am not embarrassed to ask for help. I’ve developed control so that I don’t allow this disease to make me a victim. I am never a victim… I get that from mom.

About the author: Patti Gilligan, a director of change management at DSW Designer Shoe Warehouse, nominated the Alzheimer’s Association as one of seven charities competing to win a $75,000 donation in DSW’s Leave Your Mark program. 

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Jun 172014
 
longest day1

In the Fall of 2010, my family and I received the worst news we had ever had—my 57-year-old mom had dementia.  It’s been four years since we received that initial diagnosis, and the reality and complexity of the disease is only getting more and more difficult to comprehend.

I’ve spent the last year watching my mom’s motor skills and memory decline and it truly breaks my heart.  I can’t imagine my life without her, and I don’t want another daughter to go through this with their own mom.  That hope—that there will be a day when no one watches their mother go through this—is why I am participating in The Longest Day, a sunrise-to-sunset event to fight Alzheimer’s, for the second time.

Last year, when I first heard about this event, I struggled with my decision to participate because very few people in my life knew about my mom’s diagnosis.  I was worried about letting the whole world in on our not-so-secret secret.  Thankfully, I got over those fears and together with my team, the Cape Cod Alzstars, went on to raise more than $45,000 for the Alzheimer’s Association.  This year it wasn’t even a question of whether or not I would participate.  So far this year we’ve raised more than $35,000 and we’re on track to beat last year’s total!mollywme and mom1

My Dad, My Hero

The Longest Day isn’t just about raising money to end this disease, it’s about spreading awareness, spending time with our loved ones who are living with Alzheimer’s, and supporting our caregivers—the true unsung heroes.

My dad is the strongest person I know. I am so proud of him every day.  As my mother’s caregiver, there is no vacation from Alzheimer’s, from the first shower in the morning to “sundowning” in the evening. Caregivers spend every ounce of their attention and energy on keeping those with Alzheimer’s safe, content and engaged. Our family is also very grateful for the caring and compassionate people who spend time with my mom throughout the week; they are extensions of our family now.

How I Became an Advocate

It’s interesting—while it took me a long time to accept my mom’s illness, and overcome my reluctance to shine a light on our personal struggles—after I participated in The Longest Day last year, I was inspired to become more involved with the Alzheimer’s Association and do whatever I can to help. The experience made me look at my life differently, and now my focus is on giving back and making a difference in everyday life. If anyone reading this is looking for a way to get involved, the alz.org website is a really helpful tool, providing so much information about the disease and many suggestions on how anyone can make a difference.

longest day1On The Longest Day, my team will be putting on a fishing tournament. We live by the marina, and fishing has always been a favorite family activity. We will be rising early to catch striped bass and tuna. After spending the day near the water, family and friends will gather to enjoy a BBQ (from Nauset Farms!), and a silent auction and raffle with some really great items.  We have experienced so much support from family, friends and local businesses.  Feeling such a sense of community as we have dealt with this disease has been amazing.  It was so great to see everyone come together last year, and I’m sure our day this year will be even better!

I encourage every one of you to join in on The Longest Day and help us put an end to Alzheimer’s!

About the Author: Molly Waugh, 27, is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2014, to raise funds and awareness for Alzheimer’s care, support and research. Click here to follow Molly and her team, “Cape Cod Alzstars,” during this event.

 

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Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

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May 052014
 

In a record year for the Alzheimer’s Association Advocacy Forum, nearly 900 advocates gathered on Capitol Hill, compelling Congress to make Alzheimer’s disease a national priority. With representatives present from all 50 states, this event once again brought together those affected by Alzheimer’s and allowed them to share their stories, their passion and their personal challenges living with the disease. Chuck Warner was one of the 900 strong.

From April 7-9, my wife Lisa and I had the opportunity to attend the 2014 Alzheimer’s Association Advocacy Forum in Washington, D.C. This was my first experience as a Forum attendee. I was looking forward to meeting other advocates living with the disease and the opportunity to connect with my peers from the Alzheimer’s Association National Early-Stage Advisory Group.

National Early-Stage Advisors represent individuals living with Alzheimer’s and related dementias and use their voice to educate state and federal officials about the need for improved research funding, care and support programs to support individuals and families affected by Alzheimer’s disease. In this role, advisors advocated for people with Alzheimer’s so that they may receive expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) through the Compassionate Allowance Initiative. They also advocated for the inclusion of an individual living with dementia to serve on the Advisory Council on Alzheimer’s Research, Care, and Services to the National Plan to Address Alzheimer’s Disease.

My experience at the Forum was even more impactful than I could have imagined. This year, a record-breaking 40 individuals living with Alzheimer’s or related dementias registered to attend the Advocacy Forum. Twenty of those individuals were either current or former National Early-Stage Advisors. These numbers represent the largest contingency of individuals living with dementia in the 26-year history of Forum.warner_hill

It was a pleasure meeting fellow advocates living with the disease and I was overcome by the emotional bonding that occurred among this group. The opportunity to spend time with other individuals using their voice and sharing their stories to raise awareness of the unique needs of individuals and families living with Alzheimer’s disease was a powerful experience.

Along with staff from our local Association chapter and other advocates from California, we brought our message to Capitol Hill where we met with Congressman Sam Farr. I have known Congressman Farr for many decades and enjoyed our conversation. Our message – that Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead – was heard. But there is more work to be done. The number of Americans with Alzheimer’s disease is growing and at some point the federal government will have to face the financial and economic impact of Alzheimer’s disease on this country.

My experience in Washington, D.C. heightened my resolve to educate others about Alzheimer’s disease and the growing crisis which stands before us. As an advocate, I think it is time for policymakers to get on board and pledge to support the fight to end Alzheimer’s.

Since my return home – and recovery from jet lag – I feel more determined than ever to raise awareness about Alzheimer’s and the consequences for others like me living with the disease, our families and the millions of others who will eventually be impacted. The Forum inspired me to try and do something each day to politely educate those who do not know (or perhaps do not want to know) about Alzheimer’s and the consequences of this disease.

You can join the cause by becoming one of the thousands of Alzheimer’s advocates who are making a difference. At the Alzheimer’s Association, we are working toward a time when we will have effective treatments, preventive strategies and gold-standard care for all people affected by Alzheimer’s disease. To learn more about how you can become an integral part of this movement, visit the Advocacy homepage to become an advocate today.

About the Author: Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Apr 212014
 

The greatest enemy of any one of our truths may be the rest of our truths. ~William James

My father doesn’t know that my sister, Alice, is dead. He doesn’t know that she had cancer, that she suffered, or that she, in a pain-pills-slur, asked to be buried in a red dress with no shoes.

My father doesn’t know that I am his daughter, Elizabeth Emily, the girl he nicknamed “E.E.” for brevity and affection. He thinks I’m my other sister, Valerie, because in his mind I am still twenty years old, not thirty. I am fifty pounds lighter, with a ponytail and headphones. In his mind, I have never changed his diaper.

My father doesn’t know he has Alzheimer’s disease. He thinks it is 1964 and that he has just signed up for another tour in Vietnam. He’s leaving tomorrow, so can we please stop worrying and press his uniform?

Some days, my father is not a man who needs Medicaid to share a nursing home room that barely fits three beds. He believes he is a California millalzheimers_association_pionaire with so many servants and staff members he can’t keep track of them.

There was a time I felt a naïve ethical duty to correct him.

You see, my father never lied to me. Not about Santa Claus or floating goldfish. Growing up, if I got caught in a fib, he’d gently warn: “Our Heavenly Father hates a liar.” I knew from his steady example that my earthly father did, too.

So, when the most honest person I’d ever met started losing his grip on the truth I panicked.

I remember the first time his reality didn’t match mine. He looked up from his hospital bed and asked, “Where’s Tippi?” I froze. I couldn’t remind him that he’d asked the vet to put his dog down three years ago. I couldn’t lie, not to him, but I knew the truth would be painful, confusing, and cruel. Luckily, my husband piped up, “Tippi’s in Texas.” Technically, this was true.

Several times I tried to tell my father the “real” truth about things he’d say. “We sold the house in Tennessee ten years ago, remember?” I quickly found myself unintentionally hurting him.

I needed help learning how to give him back the very thing my “truth” and his Alzheimer’s disease were taking—his dignity. In the worst moments of seeing him succumb to the disease, I prayed. My prayers were answered by a few heroic nurses who showed me the tools for maintaining dignity: patience, creativity, consideration, and love.

The first nurse, an unlikely baritone, harmonized “Que Sera, Sera” with my dad when he started belting out the song at 2 a.m. The nurse could have demanded that my dad quiet down, or worse, he could have medicated him. Instead, he sang a few choruses like they really were listening to old records, and his reassuring voice lulled my dad to sleep.

Another aide with a soft pink sweater taught me that sometimes a shrug, a warm smile, and a Hershey’s Kiss provide more reassurance than anything we could say.

The best nurses taught me that when a loved one’s mind deteriorates, you must talk to his or her heart. Though they taught me, they never told me. Their actions spoke to my heart and changed it as I witnessed the kindnesses they shared with all the residents.

I remember watching a favorite nurse ask one reluctant woman if she was ready to come downstairs for brunch. This puzzled me because the nursing home stood one-story high and it was 5 p.m. But it made sense to the woman. I later found out why she grinned and hurried toward the dining room. Her mother had called her “downstairs for brunch” every day in her youth and her mind had returned to those happy days.

Another tired afternoon I heard a different elderly woman cursing and screaming. A flustered new aide, in a rush to get everyone to supper on time, had wheeled her out of her room against her will. She fully believed that she’d been kidnapped. She scooted to the edge of her wheelchair seat and thrust both feet at the floor, slamming an imaginary brake. Her hands clutched a plastic baby doll with no shirt and wild hair. She shouted for the police, for a gun, for Jesus.

A wise older nurse ran up to her, smiling an authentic smile, and put some sugar in her voice, too: “Mama, the baby’s hungry. Shall I take you to the kitchen and get her some milk?” The patient relaxed, nodded, and picked up her feet. She cradled her baby doll tightly and off they went with purpose, with dignity, with choice.

I once saw a beautiful young nurse let a gentleman believe she was his late wife. She blew him a kiss before she turned out his light.

Sometimes, my father thinks one of his nurses is one of us. He says, “Be good, honey. I love you.” She replies, “I’ll try. I love you, too!”



Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

Now, when my father tells me he’s a millionaire or that a dead loved one has stopped by for a pleasant chat, I am happy for him. I relax and smile. He relaxes and smiles back. Our hearts connect the same way they always have. His reality is every bit as real to him as mine is to me, and it is okay for me not to shatter the truths of his world.

Alzheimer’s disease has tripped my father and sent him spiraling down a rabbit hole. His nurses have shown me that if I appear in a tree and tell him that this way is this and that way is that, he will simply lose his head. I have given up hope that, like Alice in Wonderland, he’ll wake up from his surreal dream and come back to us. The nurses who have loved and cared for our entire family have helped me make peace with the fact that he is headed to the same place the other Alice, my sister, has gone. These heroic nurses have rushed around in scrubs and coats like White Rabbits. They have hurried between our world and the equally “real” places and times in their patients’ minds.

I am grateful to these nurses for showing me the way through the darkness and chaos of my dad’s dementia. I will be forever grateful to them for showing me my father’s truth where it lies.

Author: Elizabeth Parker Garcia

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Apr 182014
 
Blog-Jim-and-Karen-Forum-2014

When my husband Jim, who just turned 53, was first diagnosed with younger-onset Alzheimer’s disease, I wasn’t quite sure what was going on. The doctor didn’t tell us Alzheimer’s is fatal. He didn’t tell us there is no cure or that we should get our affairs in order. He didn’t tell us how long Jim might have left. He simply said, “See you back in six months.” If you are lucky, your doctor might refer you to the Alzheimer’s Association. I had to find it on my own.

We couldn’t tell anyone. Jim didn’t want to. He had a top security clearance job. He had a mother that had passed away from this very same disease. He knew more than I did. He kept up with his normal routine. He kept living as if there were a million tomorrows.

At the same time, I was starting to live as if there was no tomorrow. I grasped for anything I could that might keep Jim with me—seizing every opportunity to discuss plans and outcomes and new treatments and experiments and research. I was clutching every snippet of time, trying to create lasting memories for us and our two children (who were 5 and 8 at the time).

It was all so hard to take in. He seemed so healthy and fine 95 percent of the time. He was handsome and athletic and smart and rarely got sick. How could it be that in just a few years, he would be taken from me? From his children? From everyone who loves and cares for him?

For a few very long and stressful years, we kept this secret. Maybe the doctor is wrong. Maybe it is a tumor. Maybe it is mini strokes or a thyroid problem or high blood pressure. Couldn’t it be something as simple as lack of sleep or depression? Then Jim’s brother was diagnosed with Alzheimer’s and subsequently passed away at the very young age of 52. It became apparent to me—to us—that this does indeed run in Jim’s family.

That is when it dawned on me; our children are susceptible to this disease. This nightmare could return to our family again and again unless something is done.

Breaking Our Silence

We had long discussions about our future, our options, our finances, how to tell the kids.

Then Jim lost his job.

We had more long discussions. Jim started having more and more symptoms. Then we decided it was time: time to be part of the solution; time to join the cause; time to make sure the whole world understands what a horrible and heartbreaking story we have along with MILLIONS of others.

Three years ago this month, we joined hundreds of advocates from around the country in Washington D.C. for the annual Alzheimer’s Association Advocacy Forum.

We weren’t quite sure what to expect. I was nervous. Although we had been to D.C. numerous times, we had never tried to speak to a member of Congress before. We had never gone through security to enter a building on Capitol Hill, or walked the marble halls. We listened to the echo of our footsteps as we marched closer and closer to the offices of elected officials who can help change the future of this disease—the future that awaits our children.

I was encouraged to share our story. And so I did. And I cried. And Jim cried. Others in our group cried. It was a relief—a relief to be heard; a relief to be doing SOMETHING to make a difference; a relief to get it behind us.

But we hadn’t really gotten it behind us. Jim was still diagnosed, there still was no cure or real treatments or preventions. Which is why last year, we marched ourselves right back to D.C. again. We weren’t as nervous. We knew the routine. We were prepared.

Now, another year has gone by and there is still no cure, no treatments to slow its progression and no prevention. More federal money has been given for research, but not nearly enough (BILLIONS short) and absolutely no new programs and financial help for those of us struggling each day to pay bills and to take care of loved ones afflicted.

So, last week, Jim and I once again descended upon our elected officials to ask for help as part of the Advocacy Forum. We met with Sen. Mark Warner (D-Va.), Rep. Scott Rigell (R-Va) and asked them to support an additional $200 million dollars for Alzheimer’s research and to co-sponsor the Alzheimer’s Accountability Act.blog forum

Both of the Congressmen we met with have supported this cause in the past by signing on to co-sponsor the Hope for Alzheimer’s Act. One is a democrat and one is a republican. They are both businessmen. They understand the damage this disease is doing to our country and our Medicaid system. They understand the dire straits we will all be in if a change doesn’t happen. They both agreed to continue to support us and to be champions for Alzheimer’s families.

The Alzheimer’s Association Advocacy Forum is a great way to be part of something so much bigger than ourselves. It is a way to connect with other families from around the country who face the same struggles and the same loneliness and the same frustrations. We have made friends whom we now keep in contact with and support year round. And each year we meet new friends and are able to rally around them and show them the ropes (so to speak).

Believe it or not, there are even advocates that fly to D.C. to participate who have no connection to Alzheimer’s or other form of dementia. They may work with the elderly or be a student who hopes to become a researcher. For other advocates, the connection may not be direct—they heard a friend of a friend suffered through this disease and decided to support the cause. Each year, the awesomeness of the human race amazes me. It is sometimes hard to remember this when you watch the news or get mired in one bad luck scenario after another. But there are good people in this world who care and who are giving of themselves unselfishly to help others, even for people they don’t know and may never know.

I am proud to be part of this and I know Jim is, too.

The three days we were in D.C. were the liveliest and most energetic I have seen him in months. He was joking and talking and enjoying himself. It makes him feel like he is helping his children. He is helping humanity. He is stopping the very thing that is taking him away from everything he holds so dear.

There is power when we work together. I encourage everyone to contact their representative. Let your voice be heard. Let them know we demand a change. We demand a cure. We demand a different future where families are not suffering from Alzheimer’s disease.

About the blog author: Karen Garner, mother of two, works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

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Apr 072014
 

I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me.

After my diagnosis I found it difficult to locate services and education for people with dementia; everything seemed to be for the caregivers. I started to advocate for more support, and with the help of the Alzheimer’s Association I started a local support group for those affected with Early Stage & Younger Onset Dementias and their caregivers. My involvement with the local chapter of the Alzheimer’s Association led to more advocacy opportunities. I was empowered to share my personal story about this disease, raise awareness and needed funds, while also helping to reduce the stigma associated with dementia.

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As an advocate, I have chosen to use my voice while I still can. It gives me a sense of purpose, and a reason not to give up. I encourage others living with Alzheimer’s and related dementias to consider advocacy as a way to feel empowered and engaged in their own lives.

Last year I attended the Alzheimer’s Association Advocacy Forum for the first time. My experience was an extremely stimulating and overall rewarding opportunity. I felt inspired and motivated by my encounters with other advocates living with dementia. They encouraged me to become more involved. I wanted to contribute by using my insight as a person living with dementia, so I submitted my nomination for the National Early-Stage Advisory Group and I was selected to join the 2013 cohort. Over the past year, I have shared my personal story at the National Alzheimer’s Project Act’s (NAPA) Advisory Council on Alzheimer’s Research Care and Services meeting, attended a Senate hearing for the Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies and met with my state legislators.

It is such a great feeling to connect with others living with dementia and reminds me that I am not alone. With my expectations fulfilled from the last year’s Forum I look forward to continuing to encourage Congress to address the needs of individuals and families affected by Alzheimer’s and related dementias through legislative action. As advocates, we have strength in numbers.

Since devoting my time to advocacy, it has given me a renewed purpose in life.

My hope for the future of Alzheimer’s and other dementias is that this disease will get the recognition that is necessary to find a treatment, and ultimately a cure. Although I know that I will not see the day when a cure is discovered, it is my hope that my grandchildren will know a world without Alzheimer’s and dementia. For us to reach this goal, we will have to work together.

Last week the Alzheimer’s Accountability Act was passed. Experts at the National Institutes of Health will now have an annual opportunity to provide Congress with budget recommendations reflecting the current state of Alzheimer’s research and emphasizing the most promising research opportunities.

Your voice is powerful and needed – and you don’t have to travel to Washington to have it heard. All it takes is a minute and a click of your mouse. Join me in asking Congress to fund the research necessary to reach the goal of the National Alzheimer’s Project Act to prevent and treat Alzheimer’s by 2025 by clicking here.

Thank you!

About the blog author: Terry is living with younger-onset dementia and is a proud member of the national Alzheimer’s Association Early-Stage Advisory Group. In 2013, Terry received the Inspiring Champions Award from the National Capital Area Chapter for her contributions to the local chapter. According to Terry, “A diagnosis of Alzheimer’s or other dementia is not the end of the journey.” Terry lives in Manassas, Virginia. She has three daughters and eight grandchildren.

 

Learn More:

Write Congress
Become an Advocate
I Have Alzheimer’s Website
Find a Support Group
Alzheimer’s Association Early-Stage Advisory Group

Mar 112014
 

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting the woman know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You’ve gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so that I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals at all levels make an effort to better understand what Alzheimer’s disease “looks like.” I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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