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My mother was diagnosed with early-onset Alzheimer’s at age 63. She just turned 80 on July 28, 2019 and is now in the late stage of the disease. She has lived with my family for about 14 years and for the last three years she’s needed around the clock care. My husband, God bless his soul, is able to stay home and take care of my mother while I work. I could not ask for someone better to help her through each day. We plan our day around my mom not the time with my mom around our day. The Walk to End Alzheimer’s is important to me because my mom, her sister, her brother and her mother were all diagnosed with Alzheimer’s. I am walking for them, for my sisters, for my children, my grandchildren and for me. I do not want my kids to have to go through what we’ve been going through with my mother. We need to find a cure. This disease is heartbreaking. When your mother does not know you and know how much you love her, it is awful. I am walking in the Peoria Metro Walk to End Alzheimer’s on October 12th and I even have family members flying in from other states to walk with us. Everyone probably knows someone with Alzheimer’s or someone that knows someone with Alzheimer’s. It amazes me just mentioning the word how it will bring up conversations between total strangers that are going a similar situation. If you do not know someone who has the disease, you will sometime in your lifetime. You have good days and bad days —PLEASE enjoy every good day, because they get farther and farther apart. – Dianna Price

By: Emily Wisner In 2010, Kerri Leo’s mother was diagnosed with Alzheimer’s disease at age 63. The family quickly abandoned them, and Kerri was left to single-handedly care for her mother. “Overnight it seemed I had to manage her finances, do all the cooking, drive her everywhere, manage her medications, and arrange care for her,” she said. From the beginning, Kerri had to make many sacrifices for her mother’s care. “All of my vacation time had to be used to take my mom to the doctors,” she said. “I gave up running marathons because training for them took me away from my mom too much. I had to quit graduate school because I couldn’t spend enough time on school work and work full-time and take care of my mom. My life really started to revolve around my mom.” Meanwhile, Kerri’s sisters were unsupportive and uninvolved. “Both of my sisters wanted to put my mom in a nursing home as soon as she was diagnosed, but I knew that was the worst thing for my mom, so I refused to do it,” Kerri said. “My sister Kris said that there was nothing wrong with my mom, and she was just acting out for attention. She refused to accept my mom’s diagnosis and refused to have anything to do with our family when my mom was diagnosed. My sister Kim still visited for a while, but hasn’t made an attempt to see or talk to my mom since Christmas 2013.” Kerri’s relationship with her sisters is now nonexistent. Her mother’s brothers have also withdrawn themselves. A couple of them visit on occasion, but two of them cut Kerri and her mother out of their lives completely. “Alzheimer’s is a very isolating disease, which is hard on both the patient and caregiver,” Kerri said. Luckily, Kerri found a great support system in her friends. “My friends have been amazing,” she said. “Most of them are incredibly supportive and always there for me, but it’s hard that I often have to cancel plans because something happens with my mom, or I couldn’t go out when we couldn’t get a caregiver. It’s a lot like being a single parent, only it’s not as well understood.” In 2014, her mother’s disease starting to progress more rapidly, and consequently, the financial burden increased. “I was being called home from work on a weekly basis because of some emergency with my mom,” Kerri said. “My boss told me I needed to ‘do something, like put her in a home.’” She decided to quit her job so she could take care of her mother full time. “I didn’t work for a year, which of course did affect me financially,” Kerri said. “When I did return to working full-time, I purposefully took a job that was a step down from my previous position because I needed to make sure I could be available more for my mom.” That same year, Kerri made the difficult decision to move her mother into an assisted living facility. “It was no longer safe for my mom to live at home,” she said. “I had to baby proof the house. I couldn’t take a shower without her wandering away. She had to be watched at all times.” Even though this was the right choice for her mother, it was still extremely hard on Kerri. “It was the hardest decision I’ve ever had to make,” she said. “I felt like a failure and I constantly wondered if I was doing what was best for my mom, or just being selfish. I felt like I was letting her down.” To get through such a difficult time, Kerri relied on the support of her friends. “They took turns ‘babysitting’ me,” she said. “Every night I had someone different to go out with, so I wouldn’t be left home alone feeling guilty. I couldn’t have survived that time without them.” At this point in her mother’s journey, the financial burden is overwhelming. “My mom has spent her entire savings on her care,” Kerri said. “We had in-home caregivers for four years before it got too dangerous for her to continue to live at home. She’s now in a nursing home that costs about $98,000 a year just for her care. Since her diagnosis, we’ve spent over $700,000 just on her care, which doesn’t include doctor visits, medication, or hospice.” Throughout her mother’s journey, Kerri has found support through the Alzheimer’s Association. She worked for the Association early in her career, and she feels that it helped her to be more prepared. “As soon as my mom was diagnosed, I went on the Alzheimer’s Association website and read through what steps we needed to take to make sure she had the proper legal paperwork in order,” Kerri said. “I routinely would check back on the website and look at the seven stages of Alzheimer’s disease, trying to determine where my mom was.” In addition, she found the 24/7 hotline to be helpful. “When I needed advice on how to handle certain behaviors, or needed to know how to tell when my mom needed to be in a secure facility, I called the 24/7 hotline,” she said. “I was so grateful to have that resource available. It makes a difference just to know it’s there.” Kerri wants other caregivers to know that although Alzheimer’s is incredibly isolating and misunderstood, they are never alone. “Most people don’t know that the patient will experience behavioral changes in addition to memory lapses, which are harder to manage,” she said. “No matter what, I think it’s important for caregivers to know there are resources available to help them. They don’t have to do everything alone.”

The Bank of America Chicago Marathon is not just about ONE story – it’s thousands of stories. Read Stephen Farr’s ALZ Stars marathon runner spotlight below! Where do you live? Right now, I live in Berrien Springs, Michigan. I am a Masters student at Andrews University studying for a Masters of Divinity with an Emphasis in Youth and Young Adult Ministry. Is this your first marathon? This is not my first Marathon. This will be my fifth Marathon. I ran my first Marathon in Portland in 2016. I had been in a car accident only nine months before the race. My doctor told me that I would never run again. I had just completed my first ever half-marathon only three months before the accident and had already signed up to run Portland. I decided to get a second opinion. I went through physical therapy, chiropractic, massage and I ran that Marathon in three hours and 20 minutes. I ran the race wearing a shirt with my motto on it. I am the Running Man and I am running for Jesus. What do you do when you are not training for a marathon? I am a Pastor. When I am not running marathons, I spend my time encouraging others to chase their dreams. I believe that helping others achieve their dreams is the most rewarding thing a person can ever do. I am most happy when I get to be part of helping people become the best version of themselves they have ever been.  Why are you running the Bank of America Chicago Marathon for the Alzheimer’s Association ALZ Stars team? I signed up to run for ALZ Stars with one goal in mind: I wanted to raise money to fight the disease that took my Grandfather Jack Farr’s life. I wanted to raise enough money so that I could get a chance to run this race for him and tell his story. I am not just The Running Man who is running for Jesus but in Chicago, I am also the Running Man who is “Running to Remember.” We don’t know how precious our memories are until we have to witness a loved one forget all of theirs. This October 13th, I am running the Bank of America Chicago Marathon in order to celebrate and remember a man who believed in me even when no one else did. He took me in off the streets 14 years ago when I was homeless. I am now a college graduate and going back to get my Masters Degree, all because Jack Farr took a chance on me. Thank you, grandpa. I am running this race for you. What’s on your playlist? Is there a “go-to” song that gets you moving? I love running while listening to Lauren Daigle sing. Nothing gets my heart beating like her singing does. Do you have great fundraising tips you can share? For me, the thing that makes my fundraiser go is taking time every single day to share my passion for ending Alzheimer’s with every person who will listen. Share your heart, your story and your passion. Passion is contagious. If you believe that you can make a difference then you will! You will inspire people to join you in the battle. I may not be able to End Alzheimer’s all on my own but I believe that together we can. What’s your pre-race meal or snack? I love to eat a cliff bar and about a half of a banana before a race. And when the race is over, I like to eat everything in sight.

I work with a not-for-profit organization that provides research funding to advance treatments for diseases such as Alzheimer’s at three Chicago area universities. Funding discoveries to prevent and treat Alzheimer’s is important to me because I saw the negative effects the disease had on my husband’s uncle and law partner, Ross Tyrrell, and, in turn, on Ross’ dedicated wife and daughters. Last Spring, IWCA invited me to attend one of their events. I stopped in to learn about the organization and was astounded at the warm welcome I received and about how the meeting was so well done! The event was held in a beautiful room and kicked off with a networking reception, including delicious hors d’oeuvres and wine, during which I met one amazing woman after another. Many had personal stories about how Alzheimer’s had affected their lives and how IWCA provided them with a way to connect to others who shared a similar story while raising awareness and taking action through fundraising events, education and advocacy initiatives. Aimee Nolan, Chair, IWCA, reached out to welcome me to attend another event. I was flattered to be invited and was delighted to join a meeting focused on caregivers. The educational content combined with the fellowship of women members provided a wonderful combination. I was hooked. I wanted to become an official part of this wonderful organization. When my family asked me what they could give me to celebrate Mother’s Day, I asked for the gift of an IWCA membership. I feel like that gift is one that continues to give. Through the IWCA membership, I am blessed to have met many remarkable women and proud to be associated with IWCA’s mission.

The Bank of America Chicago Marathon is not just about ONE story – it’s thousands of stories. Read Melisa Holman’s ALZ Stars marathon runner spotlight below! Where do you live? Asheville, North Carolina Is this your first marathon? This will be my second marathon. What do you do when you are NOT training for a marathon? I work for The Nature Conservancy as a Donor Communications Specialist. I work to inspire donors to give to The Nature Conservancy and to help them understand how their support is helping to bring about a future where nature and people thrive. Why are you running the Bank of America Chicago Marathon for the Alzheimer’s Association ALZ Stars team? In May 2017, I lost my dad to dementia. He struggled for years to maintain his dignity and demeanor–his very self–through this disease. I struggled to understand how I could support him. After he died, I felt the intense void of losing him, the insidious sense that I could have done more to help him, and the tangible weight of life’s impermanence. And I felt fear at what my future might hold. I became determined to go the extra mile to prevent a similar fate. I have accepted the reality that there is no guarantee that my brain will stay healthy through old age, but I am also buoyed by research that suggests a healthy lifestyle can help. According to the Harvard Medical School, “The most convincing evidence is that physical exercise helps prevent the development of Alzheimer’s.” It was then that I decided to run the Chicago marathon to raise money for the Alzheimer’s Association. I needed a monumental challenge to honor Dad’s life–and to demonstrate my desire to help myself and others avoid dementia. So, this October I will run 26.2 miles through the streets of Chicago, near where my dad (Douglas Holman) grew up. I will run to remember my incredibly supportive, kind father who went the distance for those he loved and to recognize his strength living through this terrible disease. I will run to honor my brother, Andy, who was Dad’s caretaker for more than five years and went above and beyond to keep him happy and safe. I will run to honor my personal commitment to live a healthy, full life with the time I have left. What’s on your playlist? Is there a “go-to” song that gets you moving? I am continually adding to my running playlist—it’s already 24 hours long! But I’m also starting a 4-hour Chicago playlist with super-catchy, up-tempo songs that also have a motivating message. I think currently the song that gets me going best is “Go” by The Chemical Brothers. A close second (and obviously quite relevant) is “Marathon Runner” by Yellow Ostrich.

By: Emily Wisner For Destiny, her father’s diagnosis of Alzheimer’s wasn’t a shock. Both of her grandparents and her uncle had passed away from Alzheimer’s. “My brother and I grew up knowing it was always a good chance that my father was next in line, and therefore, it’s been on our radar since I can remember,” Destiny said. “Over the years, my brother and I would fly in, check in on him and look for any signs of dementia. Roughly 10 years ago, we started to notice small signs, and thus our process began.” In her late 20s, Destiny found herself as her father’s Power of Attorney. “As you can imagine, I grew up quickly given the responsibility and the conversations we were having,” she said. While her father was still self-aware, they worked together to update his will, organize his financial accounts, and develop a care plan. “Throughout the next few years, I served as his advocate with finding the right doctor, getting a diagnosis, observing his behaviors, making sure he was eating the right foods, cleaning the house, filling his refrigerator with food, making sure bills were paid, and checking in frequently,” she said. However, with Destiny in Illinois and her brother in New Jersey, it was hard to keep an eye on their father in Arizona. After a few years, Destiny and her brother had growing concerns. “Little by little I noticed the house was a mess, there was moldy food in the fridge, his bathing was lacking, he walked in circles at night, and he wouldn’t know where he was,” she said. “Within 72 hours my brother and I packed up my dad’s belongings, put his house up for sale and had him on a plane to his next stage of his life.” “We laughed, we cried and had a lot of breakdowns during that short trip, but together we got through it and got Dad to an assisted living facility where he could not be hurt or hurt someone else,” Destiny said. “As Power of Attorney, I was asked to sign him over to the facility, essentially waiving his rights, which was the hardest thing I have ever done.” At 36 years old, Destiny had made the most difficult decision of her life, but it was the safest option for her father. “That was the day he fully lost his independence and when my grieving really kicked in,” Destiny said. “I knew this would be his forever home. I had always pictured it differently, and I know he always saw himself in Arizona, retired, and living his fullest life.” At such a young age, Destiny didn’t have any friends who understood what she was going through. To help cope, she started a blog called Conversations with my Father . “My blog first started out by capturing memories of my father’s childhood and upbringing so that I could document them before his mind was completely gone,” Destiny said. “As I continued writing, it turned into more of an outlet for me in dealing with his disease.” As an English major, Destiny found writing to be therapeutic. “Instead of holding onto the pain, it provides a release for me to get it out on paper and to share it with others,” she said. “It is part of my grieving process that gives me permission to feel sad or angry in what the disease is doing to my father and my family.” Destiny has found numerous other ways to help herself through this journey. She learned to ask her family and friends for support, knowing she wouldn’t be able to go through this alone. “If I needed alone time to process, I made time for myself to do that,” she said. “If I needed to be around friends or family to stay occupied, I asked for that. The hardest thing was being able to ask for what I needed when I needed it, which was not natural for me.” Destiny also created one rule for herself to balance her father’s needs with her own. “When my father calls me from the facility, no matter where I am or what I am doing, I take that call,” she said. “I know one day I will stop getting those calls, and it’s important to me and for my emotional state to take them. I also know for his wellbeing, hearing my voice even for 5 minutes makes him forget his disease. That makes me smile.” Destiny also talks with her brother and the nurses regularly, and she visits as often as she can. “It’s hard being in a different state, and I get down on myself for that,” she said. “But I know I can provide him support on the phone and through my quarterly visits in other ways.” In addition, Destiny is naturally organized and logical, which has helped her, her brother, and her father prepare for what’s ahead. “From having copies of his will and understanding his financial situation to checking out assisted living centers and figuring out how Medicare/Medicaid worked, it allowed me to plan, which gave me comfort that I had a direction as things started to shift from bad to worse with my father’s disease,” she said. Destiny also learned everything she could about the disease. “During my planning stages, the reading materials that the Alzheimer’s Association provided by calling the hotline was great. It armed me with information about the disease, and I used numerous checklists to start project planning my dad’s move.” One of the resources that Destiny has found most helpful are support groups, although she was scared to go at first. “I was afraid I would not fit in and that I would end up sitting in the pain for the hour that I was in there,” she said. “For a while I had all intentions to go to a local support group but always ended up deciding to do something else at the last minute. I would even order the Uber and then cancel.” After a particularly bad week with her father, she decided to take a chance and go. “In an odd way, I felt more normal in there than I did in the outside world,” she said. “People could relate to what I was going through, and I didn’t feel alone anymore. I felt perfectly comfortable and understood in a room full of strangers.” Destiny found a great network of support, and they are able to learn from each other’s experiences. “It’s been a blessing,” she said. Although Destiny has found many helpful coping mechanisms, that doesn’t mean the journey isn’t difficult. “The hardest thing for me is watching my father disappear as the man I once knew,” she said. “The sad part about this disease that is very different from others is that although your loved one is still alive, they are not fully there. My father was one of the smartest and most independent men in my life who has now transitioned into someone who can’t shave himself, who can’t bathe himself, who can’t remember his grandchildren or what state he is in.” As Destiny continues through her journey, she wants to share the resources that have helped her with others going through similar experiences. On the home page of her blog, she wrote that in addition to being an outlet for her, “I also am hoping to encourage others to have conversations with their loved ones and to enjoy the time they have with them while they are present.” She also attends events hosted by the Alzheimer’s Association to further be involved with the cause. “Since placing my dad in an assisted living facility, I attend the local Alzheimer’s Association gala and Walk to End Alzheimer’s to give back and connect with others whose families are affected by this disease,” said Destiny. “This organization has created a community for me.” For others in similar situations with their loved ones, Destiny has some advice to offer. She says that the disease is not always diagnosed and is often managed poorly. “You must be your loved one’s advocate at all stages of this disease and throughout their care,” she said. “Trust your gut. Make sure you get them to the right doctors that understand Alzheimer’s, ask questions to understand medication choices, understand your loved ones financial and legal obligations and rights, and personally inspect and review assisted living facilities. Never stop asking, questioning and checking in throughout the process.” Destiny also encourages others to find the same support that has helped her so much. “Whether that’s family, friends, local support groups, a therapist, whatever works best for you, make sure you know who those people are,” she said. “They will be pivotal to your self-care both emotionally and mentally. As a caregiver we are used to taking care of others, but if you are not taking care of yourself, you are also doing a disservice to the loved one you are caring for.”

By: Emily Wisner “Mom’s diagnosis of Alzheimer’s was not a surprise because her mother had it, but it was scary because we knew what the progression and end result would be,” said Mary Stallings. Mary’s mother lived for 12 years with Alzheimer’s with plenty of challenges along the way including a cancer diagnosis, pneumonia, hospice care, as well as the memory loss that is the defining symptom of Alzheimer’s. Through all of this, Mary was able to maintain a very positive mindset and find joy during every visit with her mother. “It was sad, but Mom didn’t sign up for this rodeo,” she said. “It was what she was dealt, and we would all cope with it together.” In the beginning, Mary’s parents were living in Arizona. “I think Dad knew [her memory was lapsing], but he didn’t want to admit that something was wrong,” she said. They decided it was best to move her parents to Chicago to be near Mary and her siblings. Her parents moved into an assisted living facility, and her mother was very independent at first. “We would visit Mom and play games with her, take her out and have dinner, and enjoy our time together,” Mary said. “She loved the entertainment that would come in [to the facility] and the dances they would have. Mom was always one to enjoy a good party and dancing.”  Her mother’s ability to live independently soon started to decline, as was expected. “She was falling, she had left her electric stove on, and simple games that we played with her became a challenge,” Mary said. The assisted living community didn’t offer Medicaid subsidized beds, so they moved her to a memory care facility. The new facility had three neighborhoods, A, B, and C. She started in the C neighborhood, but eventually moved to B and then A. “She would be tested on her memory ability and we would hope that she would have all the ‘right’ answers so they wouldn’t mark her as digressing, but that was wishful thinking,” said Mary. Her mother’s memory continued to change, but Mary always adapted. “At one point, she said that she didn’t want us to visit because we would ask her questions, and she didn’t have the words to answer them,” said Mary. “I realized I had to change my way of speaking. Instead of ‘How are you today Mom?’ I would say ‘I heard you are having a great day.’ It is a hard thing to retrain yourself to not ask questions, but things had to be on Mom’s terms. We wanted positive visits, not frustrating ones.” “As we were preparing to take her out one night, she asked me if I was her relative⁠—that hit me hard,” Mary said. “I knew at that point, she would not remember my name, and I had to make another adjustment. As sad as it was, I knew it was the disease and not Mom.” Mary and her family adjusted their visits accordingly. Instead of having regular conversation, they sang, recited nursery rhymes, went through old photos, and said prayers together. They were simple activities that she would be familiar with. “She still loved when the entertainers would come in,” Mary said. “She definitely loved her music.” Although Mary was adapting to her mother’s needs, the visits were still frustrating as she watched the Alzheimer’s progress. “When I took a step back and looked at the frustrations, I realized they were more on my end, and I knew I could change my line of thinking and presenting my thoughts, and Mom couldn’t,” she said. “A positive mental attitude had to be first and foremost.” To make this change, Mary changed her perspective on her visits with her mother. “I decided instead of being frustrated, I was going to begin living in her world because she was no longer living in mine,” she said. “If we talked about family parties, and she wanted to make cookies for it, instead of telling her she couldn’t, I would ask what kind she was making knowing full well it wasn’t going to happen. There is not a need to be right nor argue.” Still, there were difficult days as the nurses and aids told Mary all of the abilities her mother was losing. “It was like getting a negative school report on your kids at conference time,” she said. “You want to scream and tell them they are wrong, that she is fine, but in the back of your mind, you know it is true.” At one point, her mother was in the hospital, and the nurses kept asking her where her pain was and how she was feeling. “She was becoming non-verbal at that point,” said Mary. “It was frustrating telling them that she could not describe what hurt because she couldn’t speak. One by one, they would come in and ask her the same question.” After Mary’s mother fell ill with pneumonia, she was unable to walk. “It was a very hard reality but we chose to make the best of it,” said Mary. “We asked that Mom be brought out for the entertainers even though she wouldn’t participate much. Having the music surround her was soothing for her and us.” Mary and her family found support within the other families around them. They would share memories and have meals together. “We would enjoy the time we had, and we made the best of our visits,” she said. “Every day was a gift. There are things you never realized you would do if not for the Alzheimer’s—holding Mom’s hand and praying, feeding her, stroking her face in comfort, combing her hair, wiping her face, singing to her—simple things that meant the most at that time.” Her mother’s journey ended on Christmas Eve 2017. “How appropriate she passed away on Christmas Eve as that was her favorite holiday, and she was strong in her faith,” Mary said. “Jesus got the best birthday gift that year. The gift of Mom.” Her mother retained her upbeat personality throughout her journey. “She brought joy and happiness despite the Alzheimer’s,” Mary said. “Mom’s journey strengthened our faith, taught us patience and understanding, and taught us the true meaning of unconditional love.” Although her mother’s journey has ended, Alzheimer’s is still a big part of Mary’s life. She volunteers as a community educator to teach people more about Alzheimer’s and share her mother’s story. Mary said, “I volunteer to help educate people on the disease, so they better understand it and are not afraid of it, and so they know that the person they love is still there but in a different way.” Education is what helped Mary through her mother’s journey, and she wants to share that with others. “I went to various Alzheimer’s presentations and conferences to educate myself,” she said. “Getting educated on the disease and talking with people who had the disease really helped.” In addition, Mary participates in the Walk to End Alzheimer’s every year. “The Alzheimer’s Association helped educate me and let me know I have a place and people to turn to when I need them,” she said. “I walk for Mom, Grandma and all others affected with Alzheimer’s in the hopes of raising enough funding to find a cure. I cry every time I walk, knowing I am not alone on this journey.” Mary took many important lessons from her mother’s journey that she hopes will help others who have a loved one living with Alzheimer’s: “Don’t get angry with the person affected—it is the disease talking not them.” “Don’t abandon the one you love because you don’t like seeing them like they are. They did not chose Alzheimer’s, it chose them, and they still have the same heart, soul, and unconditional love.” “Find support in others, and the biggest thing is remember you are not alone.” “Do not talk ‘around’ your loved one, include them in conversations. Talk with them, not about them or at them.” “Understand that their behavior and forgetfulness is the disease, not the person.” “Take care of you, too. Don’t feel guilty for taking time out for you.” “Don’t be afraid to talk about the disease. It is real, and the more you talk about it, the better you will feel.” Mary’s last piece of advice is, “Sing, sing, and sing some more. Music is powerful and can bring much joy.” Mary’s visits with her mother were always filled with music. It was a simple way to stay connected and bring happiness to them both. “Despite the negative news, we didn’t stop our visits or the music,” Mary said. “It only made us stronger in wanting to make Mom’s days the best that they could be.”

By: Emily Wisner Last month, Maureen Murphy hosted a Longest Day event in Fairbury, Illinois called “Purple Lemonade.” She said, “The color purple for Alzheimer’s awareness made me think I could color our lemonade purple to make more of a statement.” One of her coworkers proposed a bake sale to go with the lemonade, and another coworker suggested selling t-shirts. They combined their three ideas into one event and began preparing for The Longest Day. Purple Lemonade raised just over $2,000 with donations from well over 100 people. Of the money they raised, $1880 went directly to the Alzheimer’s Association, and the remainder, which was raised from the t-shirt sales, will be donated for the Walk to End Alzheimer’s in September. “I was hoping we would have a big impact in making more people aware of Alzheimer’s and dementia—and we did!” said Maureen. “With a handful of girls helping at the event and many behind the scenes supporting us, we had an awesome day.” Not only does Maureen host dementia fundraisers in her spare time, but she also works as a licensed practical nurse at a dementia care facility. “My motivation in dedicating so much of my life to this cause is that I am hoping someday there will be a cure for this devastating disease,” Maureen said. “I have witnessed so many family and friends that have suffered from some form of dementia. Without people like me willing to contribute love, caring, time, and money, there would be no hope for a cure.” Maureen has worked at Fairview Haven, a skilled nursing facility, for five years. Last August, they opened Serenity Villa specifically for residents living with dementia, which is where Maureen works now as an LPN. “My favorite part of the job is interacting with my residents, learning about them and from them,” she said. “I love to hear their stories, meet their families, and learn about their histories. We are a small, family orientated facility with a family style dining arrangement. Every day when I come to work I love to smell what is being cooked for breakfast, lunch, and supper, and help our residents to eat and engage in conversation.” Maureen believes that education is critical when caring for people with Alzheimer’s or other dementias. “The more I learn about this disease, the more I am able to help my residents, their families, myself, and other caregivers to be able to manage all aspects of this disease while caring for those afflicted with it,” she said. “The Alzheimer’s Association has played a big role in my involvement with Alzheimer’s disease through the education I have received through the care training resources and other education programs. I am learning more each day about care and support, communication, behaviors, and dealing with caregiver stress in caring for those affected by Alzheimer’s and dementia. The more I learn, the more I can and want to make a difference.”

By: Emily Wisner Adam Baiers’s father and role model passed away on November 11, 2018. “I vividly recall the day I learned of my father’s diagnosis,” Adam said. “ It was May of 2008, and I was sitting on the couch when I received a call from my mother. As I hung up the phone, questions began to circulate. What does this mean?  How much time do we have? There was a lot of uncertainty, but I ultimately knew things would never be the same again for our family.” In the beginning, the most difficult part was not knowing how long it would take for things to get worse. Adam looked up to his father from an early age. His father was a successful businessman and eventually became president of a manufacturing company in Grand Rapids, Michigan. Sometimes he even let Adam sit in on his meetings. “I was probably fifteen years old and remember flying with him to Minneapolis for a lunch meeting,” Adam reminisced. “I got to see him in action. He was the best at what he did. He could talk to anyone and make them feel comfortable. And he could negotiate a business deal like no other.” Seeing his father lose this identity as the disease progressed was what Adam struggled with most. Although Adam and his brothers would frequently travel to Grand Rapids to see their father, their mother was his primary caregiver. “Our mom was our hero,” Adam said. “The role of caregiver is a full-time job, and my mother took on that title without hesitation. She made it possible for my father to stay at home long after he should have been able to.” When his father eventually had to be moved to a memory care facility, Adam said, “She dedicated herself to him and made sure he received the dignity and respect he deserved up until the end.” “My parents had a loving marriage and were role models in so many ways,” said Adam. “It was definitely hard to see my mother losing her husband over the years. However, as the disease progressed and he became more confused, there was a calm about him when my mother was around.” Adam’s father lived with Alzheimer’s for more than 10 years. “Like many coping with a family member with Alzheimer’s, the journey was full of unknowns,” Adam said. From his father’s journey, Adam gained a new outlook on life: “I always had the reminder of time; what if we don’t have tomorrow, next week, next month, or next year? Over the years of living with my Dad’s diagnosis, it has made me realize how important each day is.” This realization led him down a path he never imagined. “Six years ago, I couldn’t run a mile. I physically couldn’t do it,” said Adam. “I wouldn’t say that my father’s diagnosis with Alzheimer’s was the reason I decided to get into shape. What I would say is that his progression made me realize how important each day is.” Since then, Adam has competed in dozens of triathlons including two full-distance races (2.4 mile swim, 112 mile bike, 26.2 mile run), one of which was the Ironman Wisconsin. Recently, he completed the Grand Rapids Triathlon for which he proudly wore his father’s initials, “RAB,” on his arm. “He was able to come to the events I competed in early on, and I know he would be proud to know I’ve kept it up,” he said. “Each journey is different, and I’m sure the experience my family had is different from what others will go through,” Adam said. “In the end, I was fortunate to have a family where everyone did what they could to support one another. It’s a journey no one should have to take on alone. While he wasn’t the person I knew during those last years, I had someone to see, someone to talk to, and I still had my father. For me, I find great peace in that nothing was left unsaid. Nothing was left undone.” “My father’s favorite phrase was ‘Onward and Upward,’” said Adam. “He’d always tell us this when we were going through a difficult or challenging time in life. I don’t think anything could be more fitting in dealing with a loved one with Alzheimer’s.”

By: Emily Wisner In 2016, Anna Cianciolo held her first Longest Day fundraiser. At the time, her father had late-stage Alzheimer’s, and he has since passed on. Her experience with her father made her realize how much is still unknown about Alzheimer’s in the medical community, which is why she is so passionate about fundraising. Anna participated in the Longest Day again because, “The Alzheimer’s Association provided helpful resources and services for non-medical care, and I wanted to do what I could to support its continued availability to others.” In addition, she said that, “Being a researcher, I know the importance of grants to making scientific breakthroughs, so I also wanted to help fund the investigations that may one day lead to treatment and prevention.” This year, Anna hosted another Longest Day event, “Meatballs for Memory.” On June 15, Anna turned her home in Springfield into a carryout restaurant and spent the day fulfilling people’s meatball orders. For months beforehand, she worked on spreading the word about her event and collecting orders. She created a Facebook event in March, posted a flyer at her gym, CrossFit Instinct, and emailed her colleagues at Southern Illinois University School of Medicine where she researches medical education. “On the day of the event, I woke up at sunrise and started rolling and baking at 6:30 a.m.,” Anna said. “My husband and son filled orders while I cooked.” They opened their house at 10:30 a.m. and people stopped by all day until 8 p.m. to pick up their orders. People could order meatballs in sets of 3 for a $5 minimum, and all of the proceeds went to the Alzheimer’s Association. The timing of the event was perfect as it was right before Father’s Day, and many people used the meatballs for their celebrations. “It was such a fun day!” Anna said. “The highlight for me was hearing from people who ate the meatballs, in particular their stories for how they used them to make a special meal. I know Dad would have been thrilled.” Many people made donations outside of the event as well. One of Anna’s colleagues, Larry Hurtubise, helped her fundraise by selling t-shirts at a local conference, the CGEA. He donated $5 for each shirt he sold. “I was so touched by the generosity of his spirit,” she said. In addition, her local grocery store, HyVee, gave a donation to help pay for meatball ingredients, and her gym featured the event in their app. Many of her friends helped out as well by lending her cooking equipment and taking her shopping at Sam’s Club. “I am fortunate to have such good people in my life,” she said. “Many of them had loved ones who’d suffered with Alzheimer’s too.” Overall, Anna raised $3, 560 from 187 meatball orders as well as donations from more than 20 other people. “I hope my event helped others realize the value of the Alzheimer’s Association to all people living with the disease: patients, caregivers, and families alike.” Anna said. “I hope they will turn to it in their time of need, but I also hope that talking about Alzheimer’s will help them understand how serious this disease is and inspire them to do everything they can to delay the onset of symptoms.” Anna recommends that others participate in Longest Day events, especially caregivers. “If you’ve lived through caregiving for someone with Alzheimer’s, I think hosting a Longest Day event can give you a sense of empowerment over the narrative of your involvement with the disease,” she said. “It’s a way to influence in a positive way the story of how the disease shaped your life.” While she said that she can’t redo things she wishes she had done differently with her father, she can contribute to a better future for Alzheimer’s by participating in events like these. Anna said she chooses to fundraise for the Alzheimer’s Association because “I have come to see the Alzheimer’s Association as the leading resource for learning about and coping with Alzheimer’s disease. In the event that another loved one develops Alzheimer’s, it will be the first place I turn to for ideas on how to ensure the best quality, most humane care possible, including care for myself.” Anna had a great time at her “Meatballs for Memory” event, and she’ll be doing other events in the future. “I am just staggered by the generosity of all who donated to my event,” she said. “I am so grateful and looking forward to doing this again.”

While some extra safety precautions are necessary to enjoy the summer weather, don’t let that stop you from getting your loved one outside to enjoy the season. Below are some tips to help keep a loved one with Alzheimer’s safe this summer. • Limit sun exposure. Place lawn chairs in shaded areas. Stay indoors between 10 a.m. and 2 p.m. when the sun’s rays are the strongest. Encourage your loved one to wear a hat and sunglasses. • Apply sunscreen regularly. An individual with Alzheimer’s may not remember to put on sunscreen, so be sure to remind your loved to apply and reapply sunscreen when outside for long periods of time.  • Stay hydrated. During the summer it is especially important to drink lots of fluids. Keep a cool glass of water within arm’s reach as a reminder. Add a flavor to the water to make is more interesting and tasty. Provide non-alcoholic beer or lemonade for backyard BBQs.  • Dress appropriately. Decision making may be increasingly difficult so dressing for hot days can be hard. Put away winter clothes, boots, gloves and hats, and replace them with just one or two choices of shirts, pants or shorts/skirts, a hat with a large brim and a light jacket or sweater. • Avoid loud noises and crowds. Both loud noises and crowds can be overwhelming for someone with dementia. Consider watching fireworks from your home or in the quiet of the car and parades on television; picnic on a weekday or early in the day on a weekend when crowds are lighter. • Be watchful around fire and water. It’s best to have any home pools protected by a fence but keep a watchful eye on any seniors who may wander to prevent an accident. Do not allow an individual with Alzheimer’s disease to swim unsupervised. Also, never allow unsupervised access to fire pits, and the hot surfaces of BBQ grills or campfires. • Plan Ahead. Consider simplifying travel plans or traveling to a familiar destination. Most airlines offer companion programs for those traveling with special needs. That way you can be assured a loved one has arrived safely or made a connection without any problems. Alert the Medic Alert + Safe Return registration phone line of your travel plans and provide them with contact information for your destination. Alzheimer’s Association’s Tips to Prevent Wandering: Carry out daily activities: Having a routine can provide structure. Consider creating a daily plan. Avoid busy places: Shopping malls and grocery stores can be confusing causing disorientation. Night wandering: Restrict fluids two hours before bedtime and ensure the person has gone to the bathroom just before bed. Also, use night lights throughout the home or facility. Locks: Place out of sight. Install slide bolts at the top or bottom of doors. Doors and door knobs: Camouflage doors by painting them the same colors as the walls. Cover them with removable curtains or screens. Cover knobs with cloth in the color of the door or use childproof knobs. Monitoring devices: Try devices that signal when a door or window is opened. Place a pressure-sensitive mat at the door or bedside to alert of movement. Secure trigger items: Some people will not go out without a coat, hat, pocketbook, keys, wallet, etc. Making these items unavailable can prevent wandering. Safe Summer Activities for Loved Ones with Alzheimer’s or Dementia Attend a baseball game or another sporting event Attend an outdoor concert Go for a bike ride Plan a family reunion Go for a walk Plant flowers Have a picnic Travel Go to the beach Have a yard sale Visit a local farmer’s market Go to a an outdoor movie Create art outside Build a lemonade stand Make a bird feeder

Celebrations like the Fourth of July bring family and friends together for backyard BBQs, pool parties and firework displays. For the person caring for a loved one with Alzheimer’s disease, the holiday can also bring additional safety challenges. By taking a few minutes to review the following safety tips, families can safely enjoy Fourth of July festivities. Limit your loved one’s exposure to the sun. Place lawn chairs in shaded areas and stay indoors between 10 a.m. and 2 p.m. when the sun’s rays are the strongest. Encourage your loved one to wear a hat and sunglasses. Remind your loved one with Alzheimer’s disease to apply and reapply sunscreen when outside for long periods of time. During the summer, it is especially important to drink lots of fluids. Keep a cool glass of water within arm’s reach as a reminder. Add a flavor to the water to make is more interesting and tasty. Provide non-alcoholic beer or lemonade for backyard BBQs. Loud noises and crowds can increase anxiety. Consider watching fireworks from your home or in the quiet of the car and parades on television. Never allow unsupervised access to fire pits, and the hot surfaces of BBQ grills or campfires. Do not allow an individual with Alzheimer’s disease to swim unsupervised, and do not leave children in the pool under the supervision of the person with Alzheimer’s disease, even for a short period of time. Family and friend reunions can be overwhelming to the person with Alzheimer’s disease and may rely greatly on their ability to recall names and faces. Consider limiting the amount of visitors and prepare both the guests and the person with Alzheimer’s disease in advance for the visit. Try using fun name tags and get everyone involved to reduce embarrassment for the person struggling with names. Have a back-up plan that will allow for a quiet place to rest if things become overwhelming or confusing. While our Alzheimer’s Association Illinois Chapter offices are closed for the Fourth of July holiday, you can always reach us for support at our 24/7 Helpline: 800.272.390.