Sep 052014
 

A teacher affects eternity; he can never tell where his influence stops. ~Henry Brooks Adams

We had known for a little more than a month before we decided to let others in on the burden our family had been carrying. On the last day of school before Thanksgiving break, my husband, at age forty-six, stood before his beloved high school students and told them our horrific secret.

We taught at the same high school, so I was able to be with him as his words first began to spill out during homeroom that morning. “I won’t be returning to school after Thanksgiving break, I am taking a medical leave,” he began. “I have an incurable brain disease and I am no longer able to continue in this job I love.” He never spoke the words “Alzheimer’s disease” that day, but he didn’t need to. The students knew what he was talking about.1864451education

It was painful to stand beside him and watch as my husband of more than twenty years spoke to each of his six social studies classes that day. I could see the chins start to quiver and the tears begin to fall. There was a stunned silence. During that first class, after he told the students, a young lady came up and asked him so meekly, “I know you are my teacher, but for today is it okay if I give you a hug?” And thus began the long line of embraces from students. Some clung to their favorite teacher and sobbed—some of the toughest guys gave some of the most emotional hugs that day.

Makeshift cards from students began to appear as the day went on, and alumni began to show up at his door.


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.

One sweet girl said she wanted to help him and offered to wash his chalkboards. We were out of the classroom when she started and when we returned this is what was written on the chalkboard:

We love you! You are the best teacher EVER! We will miss you sooooooooo much and pray for your family. Love, Your Awesome Students

And so began our journey into the uncharted waters of living with Alzheimer’s at age forty-six. The day my sweet husband stood so bravely before his students to explain the onslaught of Alzheimer’s will always be a lasting memory to me of his strength, character, and resolve to do what was best for his students and family. I know he wanted to honor God with his honesty and integrity that day—and he did.

Author: Sandy Morris

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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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.

Learn More:

Become an Advocate
Take Action: Tell Elected Officials to Invest in Alzheimer’s Research
Alzheimer’s & Brain Awareness Month

Dec 062013
 

early onset alzheimer's“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.”

With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6.

I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. Words and phrases kept jumping off the page….”no cure,” “death,” “progressively worse,” “dependent,” “no treatments.”

I started to separate myself from Jim and the disease to the point that I became almost businesslike. Researching, interviewing doctors, contacting the Alzheimer’s Association – I was just trying to figure out what was happening and what kind of timeline we were on. I soon found out that there is no timeline. In fact, no two patients have the same symptoms at the same time, in the same order or on the same schedule. It makes for an isolating and desperate feeling.

With two young children at home, I was unable to wallow in my self-pity. I am no longer afforded the luxury of thinking too far ahead, dreaming of a life enchanted. Luckily we are an active family with hectic schedules; this helps me focus on my to-do list and not on our plight.

I have slowly developed an awareness of the new Karen. The old Karen liked to think of herself as a giver, and she was to a certain point. But the new Karen must constantly be giving to Jim, the kids, to others. And it feels good.

Lifting my head off my pillow, pushing away the covers and facing the day ahead of me takes every ounce of self-motivation I can muster. But if I don’t, I won’t get paid, the kids won’t have breakfast, their lunches won’t get made and they won’t make it to school. It is a cycle, and everyone lives it.

Slowly – very slowly – I have pulled myself out of the fog, out of the darkness. Don’t get me wrong; I still have moments of sheer terror and obliterating pain. But I have found my life again. I thought I found my life when I met Jim. Then I thought I found my life when I had each of my children. But I think I was always trying to figure out what my true calling was. I felt I had a purpose, but it eluded me until this past year.

I started by doing advocacy work with the Alzheimer’s Association in Washington D.C. That led to some interviews about the disease. Then, with encouragement from friends, I started writing a blog chronicling our path through younger-onset Alzheimer’s. Emails started pouring in, then more speaking engagements and interviews. Suddenly I realized I had found what I was looking for. I was looking for my life’s calling and this was it. It wasn’t what I would have ever expected or guessed or hoped for, but it is my calling all the same.

Jim’s mother and brother died of Alzheimer’s disease, so it doesn’t take a genius to realize our children have a high probability of also succumbing to this hideous malady. There is my motivation. There is where my strength starts and ends. I don’t feel as if I am going through a mid-life crisis as much as I am going through a mid-life awakening.

Life is so much different since our world became engulfed with all things Alzheimer’s. I feel like a small pilot light inside of me has now been ignited and is ready to spread like a wildfire.

No day is the same and no day is easy. There are days when Jim barely acknowledges me or our kids. He is in his own world. It is hurtful. It is lonely. It is heartbreaking. And I know it’s only going to get worse.

Luckily, I know I am not alone. I think of what I am going to do to help others. By helping others, I will help us. It is a continual shifting back and forth, like water in an eddy.

There is a sense of duty and a sense of awareness that I have never felt before. It empowers me to not only get out of bed and make it through my day, but to do it with a sense of purpose, with an understanding of pain, and the ability to feel powerless against a force I have no control over. There is no way of knowing when it will be felt or when it will strike a new low, but if I were to let myself lose focus of the bigger picture, I would be crushed under the weight of uncertainty that is equaled out by a certainty of what is to come.

I am strong. I am weak. I am a caregiver for a man with younger-onset Alzheimer’s disease.

I will survive. It may not be pretty. It may not be quick. It may cost me everything I cherish, but I will survive with the help of friends, family, strangers and myself. I must survive for my children and for other caregivers that are struggling just as I am. We will all survive together, knowing that we are not alone. Feel the love and the power of others rooting for you to endure.

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She 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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Nov 142013
 

lehmann

Next month, Mary Margaret and I will have been together 50 years.

She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way.

In 2009, I was diagnosed with Alzheimer’s.

After I received the diagnosis our lives changed. At the time, Mary Margaret and I were living in California, but this news caused a great sense of stress, so we relocated to Minnesota to be closer to family. Moving wasn’t difficult – it actually took a weight off our shoulders. Then one of my wife’s friends said “Why don’t you call the Alzheimer’s Association’s 24-hour helpline?” That really changed our lives. Not only have I become very involved in the Association, but so has Mary. During our career years, we really did very little together – now we do everything together. Our connection to the Alzheimer’s Association and shared commitment to raising awareness of the disease has brought us closer together as a couple.

Before I received the diagnosis, Mary and I were absorbed in our separate professional lives: She had her activities, and I had mine. If we got together on a Sunday, it was a big deal. It’s almost like we are dating all over again. She has turned me on to subjects I wouldn’t normally be interested in, and we have immersed ourselves in an eclectic series of programs. She is an avid reader and I’m not; however, through themed book presentations I have been able to learn something new with Mary, and that was a different experience for me. In turn, I have turned Mary on to the arts and now we are both passionate about visiting museums. There isn’t a local museum we haven’t been to!

We support each other.  The experience for caregivers and care partners is unique to the relationship. Mary and I support each other on a daily basis; we have to. She is the social contact, the “hostess with the mostess”, and I am her assistant, you might say, helping in the ways I can. I’m not a terribly patient person, so I am trying to be more patient, which is the least I can do.

The biggest thing that I notice is her relationship with other caregivers. I have a deep respect for the sacrifices that caregivers make every day to support individuals like me who are living with the disease. Today, there are more than 15 million unpaid caregivers of people with Alzheimer’s and other dementias in the United States. The role is demanding; they are our lifeblood.

Mary Margaret’s compassion extends beyond our relationship. She spends much of her free time talking with other caregivers; learning from others and offering support. She has hundreds of followers from all over the U.S. on Twitter, and she will refer articles to them to get feedback and exchange ideas. Compassion is in her genes! During National Caregiver Month, I want Mary Margaret and other caregivers to know that I am grateful. THANK YOU!

What makes a caregiver in your life special? Leave a comment here on the blog, or leave a tribute for a caregiver or care partner at the Caregiver Center.

About the blog authorKen Lehmann is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG), and he pays tribute to his wife and very special care partner Mary Margaret during National Alzheimer’s Disease Awareness Month. As an Advisor, Ken encourages others living with the disease to avoid worrying about the past, but to “live in the moment.” 

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Apr 172013
 
The Longest Day: Fighting Alzheimer's

“This Is Our Life” is the final line of a production entitled “Resurrection” that my husband Steve and I have been a part of with our church singing group for the past 17 years. During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But Alzheimer's Charity Event: The Longest Daybeing part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

Oct 012012
 

Girls on the Gridiron – Taking the Fight Against Alzheimer’s to the Field

People who work together will win, whether it be against complex football defenses, or the problems of modern society. – Vince Lombardi

 

Blondes vs. Brunettes® creator, Sara Allen Abbott (second from right) at the Washington, D.C. game

It is officially fall and fall means football season – fans, cheerleaders, Friday night lights, afternoon tailgaters, Monday Night Football.  When we think of football – we think of the gladiators of the gridiron.  However, one of the best football games this season is being played by women across the country – and they are playing to win the battle against Alzheimer’s disease.

Two Sisters, One Dad and a Diagnosis of Alzheimer’s

Sara Allen Abbott and her sister, Kate Allen Stukenberg, are two beautiful brunettes born and bred in Texas.  Their love of football is both geographically influenced (what Texan doesn’t love football?) but also a family affair.  Their mother started the Powder Puff football game at the girls’ high school that helped raise funds for an after-prom program.  Their father, Joe, had always been a football fan cheering on his favorite team, the Houston Oilers and taking both daughters to games at the Astrodome from a young age.  Both sisters also recall fond memories of how their dad indoctrinated his daughters into “game day” by taking his girls to University of Texas games to cheer on the Longhorns, where both women are now alumnae.

Sara on her wedding day with her dad Joe who had already been diagnosed with Alzheimer’s disease.

In 2005, Sara and Kate’s dad was diagnosed with younger-onset Alzheimer’s disease.  He was only 63 years old, although Kate remembers that there were small signs of the disease several years earlier.

The Alzheimer’s Association estimates that more than 5 million Americans are diagnosed with Alzheimer’s disease today – in fact, every 68 seconds someone develops this disease.  What is perhaps a larger concern is that studies also show that 50 percent of those living with Alzheimer’s are undiagnosed.   The Alzheimer’s Association believes that early detection of Alzheimer’s disease can help families plan ahead for what can be a long caregiving journey.  They know that families, like the Allens, can be impacted emotionally and financially, so they have created an education campaign focused on early detection titled “Know  the 10 Signs: Early Detection Matters.”  

 And, although it was Sara and Kate’s dad who developed the disease, The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s released last year from the Alzheimer’s Association shows that 10 million American women are touched by Alzheimer’s disease and other dementias.  Of the more than 5 million Americans diagnosed with Alzheimer’s disease, two-thirds are women.  In addition, 6.7 million women represent 60 percent of the family caregivers of those living with the disease.

After his diagnosis, Kate moved back to Texas from New York City and did not work for eight months so she could just hang out with her dad.  She feels this period of her life truly taught her about patience.  Although he was physically in good shape, Kate felt so much of him was missing – although she said “the core of him was still there.”

She told me, “People need to understand that being a caregiver doesn’t necessarily mean you’re changing diapers or feeding someone.  It can just be sharing time and for someone with Alzheimer’s, maybe listening to a story they feel they’re telling for the first time but you’ve heard quite a few times already.”

During this period, Sara was living in Washington, D.C. and felt the typical helplessness of being a long-distance caregiver, something that 8 million Americans are doing today.  At one point she said she was thinking of moving home but her dad said, “You can come back, but you being here is not going to cure me.  Stay in Washington and do your best.”

It was that conversation that she believes inspired her to do something to fight Alzheimer’s disease.

Blondes v. Brunettes® – Let the Games Begin

Kate Allen Stukenberg (second from right) brings Blondes vs. Brunettes® to Houston.

The age-old hair color competition (blonde or brunette?) helped fuel Sara’s idea to raise funds for the Alzheimer’s Association through a very non-traditional event.  In 2005, Sara approached the Alzheimer’s Association with the idea of tackling Alzheimer’s in a new venue – on the football field with all female players.  The first flag football game, Blondes vs. Brunettes®, was played in Washington, D.C. and a winning event was born.

It took Sara’s sister, Kate, only six months to take a page out of Sara’s playbook and host her own Blondes vs. Brunettes® game in her Houston community.  In its seven-year history, the Blondes vs Brunettes® games have raised over $3 million for Alzheimer’s research and programs.  The events now span from coast-to-coast, with more than 25 cities set to host a game in 2013. To find local events this fall, visit the Alzheimer’s Association Website (www.alz.org).

And, to prove they are democratic, Sara and Kate have invited men to serve as coaches, umpires, announcers and even cheerleaders.

Caregiving Game Changers

When I asked the sisters about their motivation for starting their fabulous female football games, Sara said, “There were three reasons.  First, my dad and I had a great love of football and wonderful memories attending games together.  Second, the fitness aspects promote health and wellness and are another way to ‘maintain your brain.’  Third, we knew in order to be successful it needed to be fun and football is a game you can enjoy on the field or from the sidelines.”

Kate believes you don’t have to love football to love the game, “I still have NO idea what a flag means.  I understand touchdowns but that’s about it.  I definitely know how to enjoy the social aspects of the game.  When Sara started it in D.C., I said ‘We have to do this in Texas.’”

When I asked the sisters what they felt their dad would say about their fund-raising and awareness-raising success, they both replied he would be proud but then they shine the spotlight back on their beloved dad.

Sara said, “He was constantly telling us we could and would do amazing things.”

Kate replied that she runs into people all the time who tell her how much he wanted to help people, what a character he was and what a difference he made.

Now it’s the sisters making a difference.  And, what a beautiful legacy of their dad that his girls are doing “amazing things” by honoring his love for the game.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

 

 

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Jun 012012
 
Lee and Val

In 2008, at the age of 62, I was diagnosed with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Not long after, I retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County. While I thought I was functioning well, there were ample signs a few years before, indicating not all was necessarily right with my health.

Part of me recognized this, while another part of me chalked it up to work overload. In fact, I knew I was having a problem with my own self-confidence — and my 15 employees saw it more clearly, and earlier, than I did; if we are not careful, we tend to forget how intuitive employees truly are. Fortunately, we all came to a point of understanding that I needed help, and the Board of Directors and staff were ready to seek ways to retain me and keep me functioning, while also making sure we were all honest with one another, henceforth.

I was recognizing changes in my own behavior: I was losing my ability to juggle multiple projects. It took more effort to decide which projects had highest priority — and, worst of all, I realized that my self-confidence as an executive was rapidly eroding. I could not find any solutions to turn that around; I didn’t know how to fix it. This was brought home directly, on a couple of business trips (by auto), when I found myself overlooking familiar freeway exits and driving well down the road before realizing I was way off course.

All of this led my wife and I to visit the Mayo Clinic twice in Scottsdale, Arizona, in 2006 and 2007; we also participated in a battery of testing at U.C. San Francisco. I was finally diagnosed with Early-Onset Alzheimer’s on that visit (also known as Younger-Onset Alzheimer’s), with evidence of “Executive Dysfunction.” Several medical doctors, staff and students participated in that discussion, and they video-taped the discussion.  It was an eye-opening experience.

Back home in San Luis Obispo, we also took the time, on two occasions for me to be tested for sleep apnea, in a local lab located in our community. Outcome: “Positive.” Thanks to the technology of this remarkable invention, I now sleep better than I ever have in my life. While I am no expert in this technology, I am convinced there is a direct (negative) relationship between sleep apnea and potential damage to the brain, over time.

Several months later, when this all sunk in, I resigned myself to accept this fate — over which I would have zero control. But, I also have been able to put a face on Alzheimer’s in our local community, by being an advocate and local voice. I have written several “Viewpoints” and “Commentaries” in our local Tribune newspaper. I have formed a close relationship with our local Alzheimer’s Association Chapter Office and its staff, secured a seat on the three-county Chapter Board of Directors, and also accepted an appointment to the Alzheimer’s Association Early-Stage Advisory Group (ESAG) for the 2011-2012 year. This participation, in turn, has opened more new doors with the National Office of the Alzheimer’s Association in very positive ways.

I am well aware there is no known cure for Alzheimer’s. It’s a given, for now, and I refuse to spend much time worrying about it. I prefer to be matter of fact with regard to my diagnosis and I spend more time out in the community and working with the Alzheimer’s office to support them in their work. If there is anything I worry about, it is my family. Family and friends are the best medicine that any of us will have, in a journey such as this one.

Read about Val’s experience as Lee’s care partner.

Blog author Lee Ferrero is a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group. He is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure.  Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

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