Jun 022015

My name is Grace, and I am 15 years old. For nearly 10 years of my life, my mother was a caregiver for her two aging parents. My grandmother was broken physically, but my grandfather Jim slowly deteriorated due to Alzheimer’s disease, passing in February of 2014. Watching my grandfather lose his identity was one of the hardest situations my family has ever had to cope with. I live with images of how this incurable disease changed him; dealing with the grief of his passing was not easy.grace2

Ever since my grandfather’s death, I have wanted to do something to raise awareness and funds to combat Alzheimer’s. My opportunity came this year in my English class.

For my 10th grade service project, I had to choose a charity or foundation to volunteer for. Naturally I chose the Alzheimer’s Association. I raised $200 and made phone calls to people who had started their Longest Day teams to encourage them in their activities. After that, I took the next step. I set up my own team for The Longest Day, where I committed to use my passion, swimming, as a tribute to my grandfather and all people who have lost their life to Alzheimer’s. On The Longest Day, I will swim 16 miles to “Swim for Jim” as a symbolic tribute to those caregivers who work from sunrise to sunset to care for their loved ones.

People recognized my passion right away and so many were excited to donate generously to the cause. I have nearly reached the three thousand dollar-mark on my Longest Day Web page, and I can’t thank my donors enough for their tremendous support!grace3

This opportunity to raise awareness and funds for Alzheimer’s is much more than a school project. It’s personal. It is a fight for those who have their memories and identity stolen from them. It is a call for others to support the caregivers, researchers and those who have fought this battle. It is a commitment to remember for people who no longer can. It is also a pledge to honor lost loved ones so their agonizing fight will not be in vain.

I hope you will join me on The Longest Day. I can wholeheartedly say that this experience became part of the healing process for me and my whole family. We now have a sense of closure. The donations given and awareness raised will be instrumental in decreasing the number of people who live the longest day every day. Cherish your memories – support the fight to end Alzheimer’s.grace1

About the Author: Grace Arredondo is from Charleston, South Carolina. She swims for her high school swimming team, the Shadowmoss Sharks summer league team and The City of Charleston’s Southern Marlins Racing Team. She has chosen to use her competitive swimming skills to honor her grandfather, Jim Whaley, by participating in The Longest Day. You can visit her team page here.



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

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.


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.


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.


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.

Feb 052015

A French writer once said that “a recipe has a hidden side, like the moon.” In every recipe there’s a little something that makes it special, and, hopefully, better. – Paula Wolfert

The symptoms of dementia can vary greatly from person to person. In Paula’s case, it was her response to a simple request that acted as an early warning sign. One day her husband Bill asked her to make an omelet and her reply was: “I don’t remember how to make an omelet.”

For Paula Wolfert, 76, a woman who spent decades mastering the art of cooking cassoulets, stews and Moroccan dishes  – as evidenced by her nine Mediterranean cookbooks and five James Beard awards – this was more than unsettling. “Of all things – an omelet!”


Studying baking in Paris, 1980.

Not long after that exchange, before her last book was released in 2011, Paula conducted interviews with industry professionals who had received advance copies of her cookbook. During interviews, she struggled to remember the questions asked and had a difficult time responding appropriately. During a visit with her physician, Paula shared her concerns, but the cause of her symptoms was still undetermined. In 2013, after getting a second opinion, it was confirmed that Paula had an atypical variant of Alzheimer’s called Benson’s syndrome.image7

Paula has always been untraditional. “One year on Christmas I made my daughter couscous and my son stuffed pig’s foot! I have always been a bit unorthodox.” Her children were born in France in early 1960s and grew up in Morocco. “Our family had a daily shared mealtime. Those meals helped create a sense of belonging, and I still enjoy preparing food for my children. When my daughter visits, she always asks for a tagine. I have to run back to my book and look at the recipes, but as I cook –sometimes, somehow – memories come back. They may not be memories from that exact day, but memories do come flooding back when I make certain dishes.”


Working on her first book in 1971.

Despite her professional background, Paula grew up in a household where food memories were rare. “My mother didn’t like to cook during the holidays or otherwise and wasn’t adventurous. Her idea of cooking was melon, cooked beans, cottage cheese and iceberg lettuce. I truly have no recollection of sitting around a table with my family. The family I created with my children was different. We had meals together that created powerful memories.”

Today, in addition to her husband, Bill, Paula cooks alongside her son and care partner, Nick. “When I see my children, we live in the now.  I still get pleasure out of talking about food and showing them how to coax and make food come alive. I just can’t get in front of a stove and do it alone anymore. I can still laugh, and my wit hasn’t left me. I don’t think it will. I can’t write anymore; the letters jump around. You can’t dictate a cookbook. That part of my life is over. I can’t turn back the clock, but I also can’t walk away from my friends and family.”


Paula’s husband Bill.

“I may not write cookbooks anymore, but I have a different kind of job now. I have always been a researcher. I researched cultures and food and that part of me has not changed. Today I research ways I can live better. I can’t cure my disease, but I can make living with it easier. I may have to read something five times or more to finally remember some of it, but I do remember some of it if I keep at it.”

According to Bill, the recipe that Paula likes to make most is oxtail ragu, which is conveniently also Bill’s favorite dish. For the first time in a year, Paula cooked for guests – a French family that came to visit – this past holiday season. Her husband helped her plan the menu, which included a spin on his favorite: ragu of duck with prunes and onions, a French favorite from the southwestern region.

Everyday meals aren’t cuisine of the ragu sort. Cooking is very different than it was before Paula’s diagnosis. She cooks three times per week, primarily vegetables that she can freeze and store for later use. She enjoys using Vital Choice wild Alaskan king and sockeye salmon as a protein and incorporates a variety of ingredients into her diet, including Brussels sprouts, olives, pomegranates, fennel, red pepper and coconut oil.

Paula has simplified her cooking due to changes in her sense of taste and smell.

“Some things I can still smell, like rosemary. I can’t smell roses. I can’t smell smoke. But I am still so focused. When I wrote my books, I would learn the language of the country I visited. When I went to Sicily, I hired someone to teach me Sicilian. I learned enough to charm people so that they would show me things they never showed anyone else. I did this for decades. Now I have to put the focus on taking care of myself.”

Paula at her desk.

Paula at her desk.

“The reason I contacted the Alzheimer’s Association is because I could not take care of myself alone,” she says. “I needed guidance.”

Today she puts a focus on clean living and staying social with family and friends. She has lost 25 pounds due to frequent treadmill and yoga exercise. She drinks a smoothie every day chock full of greens and vitamins. She dines with a group of women her age who are still in the workforce (the “Lunch Bunch”) once a week. “I consider what I am doing to take care of myself to be working”, she says.

“The thing that’s most important to me is that I live in the now. I am not the professional person I once was, and I can’t turn back the clock, but I do what I can now to live my best life. After my diagnosis, I felt sorry for myself for about 15 minutes. I am very proud of what I have accomplished in my life; I feel very lucky to have the life I have had. I have lost some things but not others.”

One of the first warning signs of Paula’s disease was that she would watch favorite shows like “Mad Men” and couldn’t remember what she had watched the following day. What did stay with her is a quote from the show’s main character Don Draper. “This quote struck me because it made me remember a time of my life where I had the feeling of love. I live in the now, but I also want to live for the then and the future:”

Nostalgia – it’s delicate, but potent. Teddy told me that in Greek, “nostalgia” literally means “the pain from an old wound.” It’s a twinge in your heart far more powerful than memory alone. This device isn’t a spaceship, it’s a time machine. It goes backwards, and forwards… it takes us to a place where we ache to go again. It’s not called the wheel, it’s called the carousel. It lets us travel the way a child travels – around and around, and back home again, to a place where we know are loved. – Don Draper, “Mad Men”


About Paula: Paula is a member of the 2014 National Early-Stage Advisor Group. She is an advocate, wife, mother, and chef whose career spanned more than 40 years. For more than 20 years, she authored a column in Food & Wine magazine and was featured in numerous publications including Gourmet and Bon Appetite. She helped start a Memory Cafe to encourage social engagement with others living with the disease. She lives in Sonoma, California with her husband Bill.

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Dec 222014

When my mother Naomi was diagnosed with Alzheimer’s in 2010 at the age of 70, my father, Jack, actually started cooking for the first time in his life. Through the painful realization that we were losing our beloved mom and wife, we found humor in the situation. My father had actually entered the kitchen! This post is an excerpt from The Lost Kitchen: An Alzheimer’s Memoir and Cookbookwhich chronicles the story of how my family struggled to maintain balance—and laughter—in the face of a devastating diagnosis.

Here’s something you many not know. Loss of smell may be an early warning sign for Alzheimer’s and cognitive impairment.

When I go on line to learn more, I discover that much of what we experience in the context of the disease is uniquely personal.Apple Sauce and Potato Fritters

Smell is not the only sense that is affected by the disease. Alzheimer’s sufferers are often sensitive to noise. I’ve noticed this with Mom. When we sit in an overly noisy restaurant where lots of conversations vie with ours, Mom experiences an overload and becomes quiet; it’s too much for her to take in. If we are sitting in a quiet place, Mom is distracted by background noises—a passing motorcycle or voices in the street—that the rest of us manage to filter out without difficulty. The websites tell me noises can affect individuals differently, from mild frustration to an exaggerated response. Reactions include anger, uncertainty, confusion, yelling, pacing, and other repetitive behaviors.

Mom’s vision is doing surprisingly well. Her most recent eye exam, after four years with the same prescription, showed no sign of deterioration. That doesn’t mean she isn’t experiencing problems. Although there may be nothing physically wrong with their eyes, people with Alzheimer’s may no longer be able to interpret accurately what they see because of brain changes. Their sense of depth and perception may be altered and can cause safety concerns.

The sense of taste also changes or fails. This Shabbat, my parents and my brother Simon came for a visit. It seemed that everyone enjoyed the delicious food except for Mom. “It’s tasteless,” she said of the sweet doughy challah, rich onion soup, and even the amazing mousse dessert. Perhaps it was the noise at the table, but Mom seemed distant and unhappy during the meal. I know she was confused about where she was. She wanted to know who lived here, and when she could go home.

We had some joyful moments, too. We went to synagogue together, and Mom sang the prayers in her lovely soprano. At home, Mom sang torch songs with my daughter, who seems to have inherited her grandmother’s voice. And we enjoyed looking at our photo albums, including my oldest son’s wedding album.

Mom was also in top form.

“Did you know that Miriam turned 50 this summer?” Simon asked.

“Shhh, don’t tell her,” Mom whispered conspiratorially.

I was right next to her, and we all laughed at Mom’s clever response.

Simon’s goal in visiting Mom was to spend as much time with her as he could. In this respect, his visit was a success. He left yesterday, after a week of interactions and outings that they both enjoyed tremendously. Simon will keep those memories safe for her because Mom can’t remember that he was ever here.

I know how Simon feels. Sometimes we wonder if the visits are more for Mom or for us. Will there be a time where we’ll decide it’s not worth visiting if Mom doesn’t know us or can’t respond to us? Right now, we’re far from that scenario. I’ve mentioned previously how fulfilled I am to spend time with Mom. It gives shape and meaning to my life on a daily and weekly basis.

In honor of the start of Chanukah this week, here’s a simple, tasty applesauce recipe. Use it to sweeten your potato latkes.



For the record, I used three types of apples: Jonathan, Pink Lady and Golden Delicious. If you don’t want to make so much applesauce, halve the recipe. I’ve played around with amounts and varieties of apples, and I am always happy with the results.

20 apples peeled, cored and chopped (approx. 5 lbs or 2 kilo)

3-4 Tbsp lemon juice

¼ cup date honey

½ tsp salt

½ to 1 cup water

3 cinnamon sticks



Place peeled chopped apples, honey, salt, water, lemon juice and cinnamon sticks in a large pot. Bring to a boil then simmer on low heat for up to an hour. When apples are cooked through, remove cinnamon sticks. Use a potato masher to mash the apples so that it becomes a slightly chunky sauce. Serve hot (or cold) with a sprinkle of cinnamon.


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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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.


Learn More:

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 112014

MVShowTelevision talk show host and journalist Meredith Vieira launched “The Meredith Vieira Show” earlier this month. On the second episode of her nationally syndicated daytime show, Meredith committed to bringing awareness to Alzheimer’s disease and the cause by welcoming actor Seth Rogen and his wife Lauren Miller. They spoke about how the Alzheimer’s diagnosis of Lauren’s mom affected their lives and how they have created awareness for the cause through their fundraising event Hilarity for Charity. Other notable guests were Ken Dobson and his wife Nikki, who explained how the diagnosis of Ken’s early-onset Alzheimer’s at age 29 has affected their lives. In addition, there was a huge surprise at the end of the show. Watch the videos to hear the stories and to see the surprise ending of the episode that even Meredith didn’t know about!


Watch Lauren Miller and husband Seth Rogen talk about how Lauren’s mother’s Alzheimer’s affected their relationship in the video below.

Lauren Miller talks about how her wedding day three years ago was the last time she really connected with her mom:

Ken and Nikki Dodson of Adrian, Michigan talk about Ken’s Alzheimer’s diagnosis at age 29 in the video below.

Watch the generous surprise for Meredith, a donation made to the Alzheimer’s Association in honor of her late brother Steve:


Thank you to everyone who donated to the Alzheimer’s Association and also to those who participated in this important TV episode to raise awareness of the disease.

You can make a difference, too. Donate to the Alzheimer’s Association or raise funds by participating in the Walk to End Alzheimer’s, which is happening in more than 600 communities nationwide this fall.

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