May 142015
 

When I presented Mom with her birthday present, I couldn’t get my phone to record her reaction. The present was a big frame with eight photos of our family, and she loved it. So, what did I do? I took back the present, waited about 10 minutes, and gave it to her again. This time I filmed it—the same, wondrous reaction to seeing all her loved ones is now recorded.

I’m both amused and horrified by my use of Mom’s Alzheimer’s to get what I wanted.

What I really want is my mom back. I don’t want the child-like adult who needs constant watching, who can’t remember how to get dressed or brush her teeth, who thinks washing dishes is running them under a stream of water, who is inactive unless someone engages her in conversation, who does whatever I tell her because she trusts me.

If I could only eliminate her confusion, repair her dying brain functions.

We say goodbye a little at a time to the people we love. Mom is there in body but not in mind. And as she slips away from us, her memories, her life force, her very existence, become hollow. I shower her with love because my feelings towards her have not changed. We are bound by the inexplicable bonds that exist between a parent and a child. She is still my mom.

We’re in a hard transition. She is both present and absent, herself and someone else. It is painful to make the best of it, put on a happy face and care for Mom as if it were not a difficult burden. Sometimes I wish she were more compliant, less ornery, and less needy. Then I feel remorse. The alternative is too awful to contemplate. But it’s coming whether I like it or not. I need to accept and appreciate where she is now for soon she will only be absent.

squirrelThis week, in order to distract myself and raise my spirits, I made sugar cookies. What’s fun about these cookies is the cookie cutters I found—all fun animal shapes, including a moose! Yes, Boris Badenov’s nemeses, “Moose and Squirrel.”

Sugar Cookies
There are many variations of sugar cookies, each with a slightly different set of ingredients. I like this recipe with the added colored sprinkles. You can also decorate the cookies with sugar granules on top.

¾ cup oil
2 eggs
1 cup sugar
1 tsp vanilla
2¼ cup flour
½ tsp baking powder
½ tsp salt

Directions:
Pre-heat oven to 350°. In a bowl, whisk together oil and eggs. Whisk in sugar and vanilla. Add remaining dry ingredients until a soft dough forms. Using a rolling pin, roll dough on a flat, floured surface until about ¼ inch thick. To add sprinkles, place sprinkles on dough and gently roll them into the dough. Press cookie cutters into dough and wiggle slightly so that the shape detaches from the dough. Lift and place on a cookie sheet. When you cannot make any more cookie shapes, gather remaining dough and roll out again on a floured surface. Repeat process. Bake cookies for 10 minutes at 350°.

About the Author: Miriam Green writes a weekly blog at thelostkichen.org that chronicles through prose, poetry and recipes her mother’s battle with Alzheimer’s.  Her unpublished cookbook, “The Lost Kitchen: An Alzheimer’s Memoir and Cookbook” is filled with advice for the novice cook, easy and elegant recipes and home-spun caregiver advice. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. Miriam is a 20-year resident of Beer Sheva, Israel, and a mother of three.

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May 072015
 

The purpose of life is a life of purpose. ~Attributed to both Ludwig Wittgenstein and Robert Byrne

I was a nurse for thirty years. Near the end of my career, I began to notice that I was struggling to complete daily tasks. There was always an excuse; I was tired or had worked too many hours. I began having trouble with my knee and took time off work to have surgery. It was during this time that I started to take note of my problems.

I had days that I called “lights on” or “lights off.” When the lights were off I didn’t know when or what I ate, I had no idea if I slept or how long I had slept. Verbal and written information was hard for me to understand, and I got lost in familiar places. If I only lost my keys on any given day that was a good day.

cynthiaGWhen the lights were “on” I had to clean the mess I had made while the lights were “off.” Once, I went to wash clothes and there were no dirty clothes. I had been wearing dirty clothes for days, unaware of how long this had been going on.

In 2011, I found myself at a stop sign and I didn’t know where I was or how I got there. In that moment I decided to make an appointment to see my doctor. I had an eight-year relationship with my primary care physician and felt she knew me really well. During my office visit, I cried while talking with the nurse, and my physician agreed that the changes I was experiencing were not like me.

dinner

My doctor referred me to a neurologist and on my sixty-third birthday, with my son at my side, I underwent testing and was diagnosed with Alzheimer’s disease. My son asked questions, but I didn’t. I was happy to know there was a word for my problem, and although I know how this disease will end, every day I wake up and accept who I am that day.

pam

In May 2012, at the urging of my son and son-in-law, I moved into a residential community they both felt would be a good fit for me. I would be close to my family, my care team, and the specialists who conduct the clinical trial in which I am a participant. Yet, the most important part of my care team is my supportive children, and I was grateful to be closer to my son.

Shortly after moving, he spent Mother’s Day with me and afterward he wrote me a letter. I cherish this part:

Mom, I don’t want you to worry or be afraid. Let’s enjoy every single day and not think too much about whether you can remember as well as you could in the past. I will watch over you and won’t let anything bad happen to you. If the time comes when we need to do more for you, I will make sure you have everything you need to have a great quality of life. I wish I could change things. I wish I could take your illness for you and I can’t. All I can do is be there for you and love you.

Yes, I have a loving and supportive family. I am a very positive person and if something starts to bother me I ask myself, “Does this really matter?”


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.

I accept my disease and am proud to be a National Early-Stage Advisor for the Alzheimer’s Association. I have made it my goal to inform the public that I live a great life with support from my family. I am very active, and I want to work to change the stigma associated with the word Alzheimer’s. I have met so many wonderful professionals who have allowed me to share my story in an effort to educate others who are dealing with the effects of this disease. With the support of the Alzheimer’s Association, I have advocated for the needs and rights of others with the disease.

I may be just one voice, but together with other advocates, we are unified.

To put an end to this fatal disease, we need to advocate for more research and clinical study participants. As a participant myself, I know I may not benefit from the studies, but someone else will—and thinking about that makes me smile.

As a legacy to my family, I want to be a part of a movement that educates others and helps advocate for people with Alzheimer’s and their families. As this disease progresses, I won’t remember anyone, but I want to live my life so that people will remember me.

 Author: Cynthia A. Guzman

 

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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Feb 132015
 

Mark’s basketball career has spanned the entirety of our 20-year marriage. We have moved a lot – experiencing an ever-changing landscape of varying cities, schools, friends and basketball seasons, with invariable ups and downs. My role in Mark’s career has always been to find stability in these times of change, drawing from my relationship with my family. Some changes, however, are harder to face than others.

Nearly nine years ago, my father died of younger-onset (early-onset) Alzheimer’s disease; he was 68 years old. Mark and I were living in Wichita, Kansas with our three young children – Will, 7; Ella, 4; and Leo, 1. I was devastated not only by my own loss, but the thought that my children would not grow up around my father.

Both Mark and I are extremely close with our families and derive much of our identities and strength of character from the foundations of our childhood, specifically from our parents. I grew up in a close family – the kind that sat round the dinner table together and did family chores together. My dad was a huge influence on me and my siblings. I had a lot in common with him; we shared a love of cooking and wine, and enjoyed exercising our creativity. I credit my work ethic, loyalty and family-first mentality to him.

Both my parents had always enjoyed sports, but it wasn’t until I fell in love with Mark that they fell in love with basketball. I was still in college when Mark and I began dating, so Mark met my dad when he was still himself, still the man who raised me, the ever-consummate business man. He and Mark forged their own relationship right away. There was a lot of mutual respect and admiration, a lot of overlapping drive for success despite odds and obstacles in both of their respective careers.

Mark still remembers my dad that way. I am so grateful that he calls upon those memories when sometimes I struggle to remember the man he was before Alzheimer’s. I think of his state during the final years when he and my mother lived in Wichita, when I took on a major role in his caretaking and decision-making. While difficult, mine and my father’s bond was solidified during this time.

When assisting my mother in his caretaking, my biggest challenge was not being able to help him when he was scared. Sometimes I would lose patience with him because you can’t “see” the effects of Alzheimer’s at first. He would look perfectly healthy and like his old self but wouldn’t be able to carry out a simple task like putting his coat on and getting in the car. I wanted to protect him and tell people he had Alzheimer’s because his behavior was so different from when he was healthy. He had always been this big, strong, brilliant, charismatic man and the disease took that away. My mom would always tell me that I had a way with him; he trusted and listened to me. I made him feel safe. That is by far the biggest reward – to give something back to the man who gave me everything.

turgeon-family

Mark and I feel fortunate that, as the basketball coach for the University of Maryland, he can bring awareness and support to a disease set to escalate rapidly as the baby boom generation ages. We feel that we have been given this platform to help make a difference in the fight against Alzheimer’s. No one should have to watch their father or other loved ones suffer from this devastating disease.

About the Author: Ann Turgeon, wife of University of Maryland Basketball Coach Mark Turgeon, assisted her mother in caring for her father, who had younger-onset (early-onset) Alzheimer’s. She shares her story here to let other families know they are not alone—and in hopes of inspiring more people to take action in the fight against Alzheimer’s.

Nov 212014
 

Grandma always made you feel she had been waiting to see just you all day and now the day was complete. ~Marcy DeMaree

My grandmother was diagnosed with the early stages of Alzheimer’s disease when I was in fifth grade. At that point in my life, I was a kid. I was selfish as all kids are, so I didn’t think twice about it. I had no idea how it would eventually affect my life, as well as my family, in such a large way.

I have a very tight-knit family, and my grammy is the glue that holds us together. I remember going to my grandparents’ farmhouse every moment I could when I was a kid. My grammy would always make me chocolate milk and a peanut butter and Fluff sandwich. We would watch Winnie the Pooh movies and color—my grammy and I both love the smell of a new box of crayons. Sometimes, if I were lucky, she would take me to the barn to feed the calves or to see the new kittens. Little did I know, these would be the memories of my childhood that I would miss the most.hands

As I grew up, I noticed my grammy changing. At first, it was just little things. She would forget where she set her book, or she couldn’t find her purse. Once again, I didn’t think it was serious. I could never have guessed how it would progress, transforming my grammy into someone I could hardly recognize.

There was one incident in particular that was my wake-up call. I remember thinking, “This isn’t a joke, and my grammy isn’t my grammy anymore. This is a serious disease.”

About three years ago, a tornado went through our town. Although it was heading straight for my grandparents’ farmhouse, it died down before destroying my childhood sanctuary. My father and I went to visit my grandparents the day after the storm, just to make sure they were okay. I went inside to find Grammy. I gave her a hug and took my regular seat on the couch across from her. We passed the time by talking for hours on end, about anything and everything that was on our minds. The power was out, and it got dark in what seemed like a matter of minutes.

Then, Grammy turned to me, and with empty eyes that stared right past me, asked, “Now you’re graduating this year, aren’t you?” I was a freshman, so I was confused why she was asking me about graduation. Grammy was the type of person who could tell you the exact date and time when every one of her grandchildren came into this world. Her innocent question caught me off guard. I assured her that no, I was not yet a senior; I still had a few years until graduation, and casually moved the conversation along.

Soon, my father asked if I was ready to go home. I silently nodded my head yes, and we headed out. As soon as I got into the car, I started to cry. My father asked me what was wrong, and all I could manage to blurt out was, “Is Grammy going to be at my graduation?”

It took him a long time to come up with a response, and when he finally did, I heard the sadness in his voice. “Yes. She may not know where she is, but she will be there, no matter what.” I looked at my father, and I saw a tear running down his cheek. I had never seen him cry. The rest of the car ride home was silent. When we finally arrived home, I went straight to my room. I locked my door and I cried for hours. That night made me realize that things were going to start changing fast.

Ever since that talk with my grammy, I have matured and stepped up. Her Alzheimer’s has progressed to about stage 3 now. She is at the point that she can’t see what is directly in front of her. When I see her get that look that says, “I don’t know where I am or what I am doing,” it’s my automatic response to help her by getting her a plate of food or easing her into a chair.

At first, I didn’t notice the strange looks I got from the other members of my family. Then, last summer, when I was cutting Grammy’s food at a family picnic, I looked up and saw all my aunts, uncles and cousins looking at me. I just ignored them for the moment and went back to helping Grammy. Later on, I asked my mother why they looked at me like that. She explained that they still picture my grandmother as the one who takes care of everyone else. They had not yet realized that the roles had switched; after years of being the sole caregiver of the family, she was the one who needed their help.


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, at sixteen, I have a better understanding of Alzheimer’s disease. My grammy’s deterioration has had a huge impact on my family and has put a lot of stress on us all. It greatly upsets me to know that one day Grammy will no longer be able to look at me and say, “That is my granddaughter, Kayla.”

At my graduation, when I am sitting on the stage waiting to receive my diploma, I will look out over the crowded gym and see Grammy there, sitting with the rest of my family. She may not understand what is going on, but she will be there. After the ceremony, I will find Grammy in the huge swarm of people, and I will hug her. I know she will forget me someday, but I am not dwelling on that fact. For now, I try to cherish the good days and to get through the bad days as best I can. She will always be my grammy and I will always be her granddaughter.

 

Author: K. Thorp

Author’s note: Since the original version of this story was written in 2011, I graduated from high school. I am happy to report that I was able to give my grammy a hug as I walked out of the gym. As my father promised, she made it to my graduation.

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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Oct 302014
 

In April 2013, Vern Gillmore was diagnosed with early-stage Alzheimer’s disease. When Vern first started to experience the warning signs, he was not prepared to hear the words “Alzheimer’s disease.” Today Vern and his wife and care partner Karen are working together to educate others about the disease while facing their daily challenges head-on. They are just one couple whose story shows the power of love and teamwork during National Alzheimer’s Disease Awareness Month.vk1

In Vern’s Words

I have been athletic all my life. I couldn’t accept not having a healthy body. I’ve always prided myself on physical fitness and staying in good health, and suddenly I had anxiety and double vision and difficulty using familiar devices like the home computer.

I was a volunteer in disaster response, and when you work in those situations, you have to be able to make quick decisions. I volunteered during Hurricane Sandy in New York and realized when I returned home that I wasn’t as quick or alert as I should have been. I didn’t want to hurt people who were suffering by making a bad decision – that would have torn my heart out. I realized something was wrong with me. My mother and brother had Alzheimer’s, but I was in denial that the cause of my symptoms could be the same.

I have accepted that I have Alzheimer’s. I handle my frustrations by keeping busy. I love taking my dog outside, running her hard for an hour and see her enjoy the exercise as much as I do. Her happy wagging tail makes me happy.

At first I didn’t want to share my diagnosis with others.  I was embarrassed and ashamed. But then I realized that I didn’t do anything wrong to cause this diagnosis. Things have changed since my diagnosis. I now look forward to being able to talk openly about my Alzheimer’s. I now speak at churches, city centers and hospitals in my area because I know that many people are uninformed and that the general population needs to understand and learn more about Alzheimer’s disease.

My wife Karen is my care partner. She is observant and sharp. She doesn’t miss a beat.  She is why I was able to get back to what matters: I volunteer, participate in the Walk to End Alzheimer’s, and stay involved in whatever capacity I can.

In Karen’s Words

Vern and I met through a newspaper advertisement in the San Francisco Chronicle during the ’90s. We were married for 20 years before the Alzheimer’s diagnosis.

I am the worrier in the family, vigilant 24/7. On a typical day, I manage our schedules and instill safe habits. Vern sets up his medications and I double-check them. I ask him the important questions before he goes out: do you have your wallet? Keys? Phone? GPS? We keep a list of phone numbers available should he become confused or need help when he goes out.

I have found the Alzheimer’s Association website alz.org to be a gold mine. It is simple – there is so much information on Alzheimer’s disease and it’s easy to read and understand. I chip away at the website, read books, and subscribe to neurology journals.

I think it is important for care partners and caregivers to know that it doesn’t make you a bad person when you experience frustrations. One of the biggest challenges I have come across is the changed communication style between Vern and I. It takes a lot of energy and never-ending patience to not take things he says or does personally.

When we went to a support group, it was the first time I didn’t feel all alone anymore. Everything I had been thinking and feeling was validated. Other people were experiencing the same emotions I was. I talked to people who were at the same place I was as a care partner and it gave me a renewed sense of energy.

Vern has renewed energy as well; he is now very interested in educating people about the disease as an Alzheimer’s Association National Early-Stage Advisor. He never really had a hobby other than running, and volunteering; but he has one now. His hobby remains volunteering, but he has added talking about Alzheimer’s and educating the public about how this disease impacts individuals and families.vk2

Vern and Karen’s story continues. And they are not alone.

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion. More than 60 percent of those Alzheimer’s and dementia caregivers and care partners are women. Karen is just one of millions who found resources that have helped her on her journey as a care partner.

Vern Gillmore is a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG) and is actively involved with the Utah Chapter of the Alzheimer’s Association. As an Advisor, Vern shares his story to raise awareness about Alzheimer’s and help reduce the stigma attached to the disease.

 

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Sep 182014
 

Everyone has a reason to end Alzheimer’s, including four-year-old Lilly Myers of Latrobe, Pennsylvania. Her great-grandmother or “Nanny,” Patty Lewis, 82, is one of the more than 5 million Americans living with the disease.blog42

To honor Nanny, Lilly is participating in the Alzheimer’s Association Walk to End Alzheimer’s® — the world’s largest event to raise funds and awareness for Alzheimer’s disease — in Carmichaels, Pennsylvania. But the preschooler isn’t just walking; she’s the top fundraiser for the 80-plus-person Nanny’s Team, made up of Lewis’s family and friends.

In 2013, the inaugural season for Nanny’s Team, the then-three-year-old Lilly raised $250. “She would get excited each time we logged in [to her online participant center] and the status bar denoting her level of money had been colored in more,” said Lilly’s mother, Amy Myers.

Lilly went door to door asking for donations. Her solicitation was simple: “My name is Lilly and I am doing a charity walk for Alzheimer’s, would you like to sponsor me?”

This year, Lilly has raised more than $2,900 and set a goal of receiving a donation from every state. As the funds came in from around the country, she colored in the corresponding states on a United States map. On Aug. 16, Lilly excitedly shaded in her last state, Vermont. She also listed her international donations — those from Canada, Germany and Australia — on the side of her map.blog4

“When asked what the money is for, Lilly will tell you that it’s for people who are sick with Alzheimer’s disease. She will tell you that sometimes Nanny forgets her name or that she already gave her hugs and kisses, but she knows that Nanny never forgets that she loves her,” Myers said. “As Nanny slips away from us, it’s heartwarming to know that Lilly is old enough that she’ll always have a memory of her time with Nanny.”

To supplement their fundraising efforts, Lilly and her cousins held a lemonade stand at festivals and farmers markets in their community. The children split more than $1,000 in proceeds, each applying a share to their individual fundraising total.

At $30,000 and counting, Nanny’s Team is the top fundraising team for the Carmichaels Walk to End Alzheimer’s, which took place on Sept. 6. All funds will help advance the care, support and research efforts of the Alzheimer’s Association. Each year, with the help of more than 400,000 participants at events in over 600 communities nationwide, the Association moves closer to realizing its vision of a world without Alzheimer’s disease.

 

To learn more about Alzheimer’s disease or to get involved with the cause, visit alz.org or call 800.272.3900.

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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 212014
 

On The Longest Day, I will be fundraising for the Alzheimer’s Association doing something I love, baton twirling. I have worked hard to get the word out by making announcements at schools, handing out flyers and posting advertisements in my local newspaper, encouraging boys and girls age 6 and older to participate. Alzheimer’s disease is a rapidly-growing epidemic, and I think that kids need to understand what Alzheimer’s really is.Sophia_River_Bandits (1)

Nearly 11 years ago, my great-grandmother was diagnosed with Alzheimer’s. Years ago, my great-grandma burned herself in a cooking fire, and that was when my family decided to move her closer to home where she would have her medication supervised and meals made for her every day. Over the course of 11 years, we have slowly seen her go from knowing exactly who we are to having no idea whatsoever. If I tell her who I am, it seems to register for a few seconds, but then she forgets again.

Like many families living with Alzheimer’s, we have to look at the lighthearted side of things. My great-grandma will still laugh and make jokes. More recently, I reminded her that I was her great-granddaughter. She responded by saying “Well, aren’t you lucky.” She sure hasn’t lost her sense of humor.

Good moments come with the bad. She asks the same questions over and over again. Since I was about 10, she has been asking me the same questions, like if I was dating yet, or when I’m going to have kids. I listen and I spend time with her even when I can’t answer those questions for her.  I twirl baton for her and the other residents at nursing home and my younger sister plays piano. We will eat a meal with her and give her attention, and it makes us happy to see that she enjoys communicating with us, even if it’s over a simple meal. I like to think that when we leave the nursing home and say goodbye by name that maybe, just maybe she remembers us. She probably doesn’t, but that I love that she says “I love you” back.

A few years back, we wrapped up an ottoman as a gift for her with a big bow, but she never took it off. Every day she looked at that ottoman with the bow still on, it was like she was getting a brand new gift. It was funny and sweet, just like her. Every day with her is still a gift.

About the Author: Sophia Aguirre has worked closely with the East Central Iowa chapter of the Alzheimer’s Association. She is Miss River City’s Outstanding Teen 2014 and serves as a hostess at chapter events in crown and sash, speaking about young advocacy and how she has been affected by Alzheimer’s disease. She will be competing for the title of Miss Iowa’s Outstanding Teen 2014 with the help of her platform, “Remember Me: Raising Awareness of Alzheimer’s Disease.” 

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Resources for Kids and Teens
Donate
Alzheimer’s, Nana and Me

 

 

 

Jun 212014
 

My family and I have set out for a great day of scavenger hunting, in the form of letterboxing, as our way of participating in The Longest Day, a summer solstice event where people around the world do activities  they love as a way to raise awareness and funds for the Alzheimer’s Association. I was diagnosed with younger-onset Alzheimer’s and chorea, a movement disorder, around the age of 40. I also have two siblings and parents who have or had Alzheimer’s. And this year, we found out that my daughter, who is only 21, shows the very early stages of this devastating disease.

letterboxingThe past several years have been really tough on me physically and mentally. With time and emotional healing, determination has become my focus to help change the horrible process I am going through. I want my story to be heard to help spread awareness, push for more research and, the most importantly, for people to realize that anyone, regardless of age, can have this disease.

Letterboxing

Letterboxing, which started in England in 1854, has been a hobby and passion of mine for the last five years. Letterboxing is an exchange of your own handcrafted rubber stamp image with the one you find, recorded into your own logbook and into the guest log of the one you find. I have found more than 400 letterboxes all along the East Coast.

At sunrise, my family and I set out in our cars to find the first letterbox of the day. We reached the beginning of a trail located in a nearby park. The clues led us down a few different paths until we found a perfectly hidden box, tucked into a tree trunk. Letterboxing requires a lot of stealth because you cannot let “Muggles” (people that do not letterbox) find what you seek. Unfortunately, some will take the precious stamp or just toss it away. But once we find a box, we all log in and start out again to find our next box.

We drove a bit to a beautiful library in a city close to us. It has underground tunnels, as well as old and unique elevators that take a person up and down to many hidden stacks. We parked and headed in. We went left, right, up, down until we finally came to a very old book that the clues led us to. We opened the book and inside was one of the most amazing hand-carved stamps I have ever found. Pages within had been carved out to hide this precious stamp and logbook. We again log in, exchange stamps and re-hide this book to its place on the shelf. Then off we go to our next one.

Lake Ontario

After a wonderful day of letterboxing, we plan to finish our day in a place that I have been drawn to since I was a little girl — the bluffs. It’s a beautiful spot on the shores of Lake Ontario. The calming water still takes my mind away from all the daily frustrations and my own declining condition caused by this disease.

In the beginning, I was told I was forgetting things due to stress from my job as a corrections officer. My husband then started noticing I couldn’t remember how to do everyday tasks like laundry. From there, I began forgetting how to drive home and how to leave a store and slowly began losing motion on my left side while a noticeable tremor developed. Several months went by, which turned into years, of more referrals to different neurologists, unending testing, blood work, misdiagnoses, and emotional and physical stress.
SeanandMom4
Finally, I was told I could never work or drive again. More recently, I now require 24-hour care in my home. My entire independence was taken away from me, which led to a deep depression.

The different degrees of pain I went through is unacceptable. There needs to be a proper and easier process to help those who are suffering. All of my own frustration and devastation have become my passion to fight back. I hope the disbelief of some doctors and the feelings of helplessness I felt don’t happen to anyone else. I want everyone in the world to know about this devastating condition and advocate for more funding to find a cure.

These are only a few reasons that I am involved with The Longest Day.

About the Author: Melanie Wagner, 44, is participating in Alzheimer’s Association The Longest Day®. Melanie lives in Webster, N.Y. Married to husband Sean and mother to Gage and Mercedes, she was previously working as a corrections officer at her time of diagnosis.  Click here to make a donation. 

Jun 202014
 

Today, just after the sunrise, a group of motorcycle riders met at a truck stop in West Monroe, La., to ride our Harley Davidson bikes down to New Roads, La., a historic district just outside of Baton Rouge, about three and a half hours away. Across the bridge in Monroe, a group of ladies gathered to play bridge from morning to night. You might be wondering what these two seemingly unrelated events have to do with each other.DSC_0724

It all started with an unexpected phone call I received two months ago from Martha Young. She is from the Bridge Club in Monroe, La., and she was calling me because I’m the director of the Bleu Bayou Harley Owners Group, which is our local chapter of Harley Davidson motorcycle enthusiasts. Now, there’s a bridge that connects the town of Monroe to West Monroe, where I live, so I thought Martha was saying that she belonged to another motorcycle club in Monroe. Turns out, she is with the Monroe Duplicate Bridge Club, which is a group of women and men who actually play bridge.

I’m thinking, why is this lady from the bridge club calling me? Martha said the ladies in her bridge club wanted to challenge the members of my motorcycle club to participate in The Longest Day. Now, before I got this call, I had never heard of The Longest Day and didn’t even know about the Alzheimer’s Association. But I felt like this call happened for a reason.

You see, my mother had multi-infarct dementia, which is dementia brought on by a series of mini-strokes. She suffered from this condition for 11 years before she died from complications of the disease in 2008.

So when Martha called to ask us to participate in The Longest Day to help raise awareness and money for the Alzheimer’s Association, it wasn’t hard for me to say yes.

We carefully mapped out the route, avoiding the interstate highways and taking the back roads so that we could make a successful ride for a good cause. And we did just that! The ride down here today, although hot with temperatures approaching the 90s, was very nice. We had the bayous on one side of us and the cedar and cypress trees with Spanish moss hanging from them on the other side. This is what we in the South like to call true country living, with the good smells of the trees and grass with the occasional bad smells of the chicken houses.DSC_0790

My wife, Teresa, and I are both wearing our purple Alzheimer’s Association T-shirts today that the bridge ladies gave us. I hope their all-day bridge marathon is just as enjoyable as this charity ride has been for us. Martha is already talking about getting many more groups of people involved from the Twin Cities in The Longest Day next year.

Who knows? Maybe if we make this event big enough in the years to come, West Monroe will be known for being more than the home of Willie Robertson and his A&E reality TV show “Duck Dynasty”!


About the Author: Chuck Adams, 54, is the owner of Tempco Insulation Inc., a commercial and residential insulation company in West Monroe, La.  He is participating in Alzheimer’s Association The Longest Day® for the first time.

 

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