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Many people are impacted by Alzheimer’s and dementia; my story is not much different. I have seen many aspects of this disease. Like cancer, every individual’s case is different and unique. I am honored to be part of an organization where proceeds go towards research to find a cure for a disease that takes so much. It takes moments from people that we love and the memories from the ones they love most. My grandfather, Peter, was diagnosed six years ago with Alzheimer’s. Whenever I ask him how’s he doing, I get the same response “Am I still here.” He always had the best sense of humor, an arsenal of jokes, and one-liners. He is also my inspiration for playing the bagpipes. While his health has declined steadily, it has become highly noticeable lately that his dementia is prevalent. He is starting to forget everyone he once knew, and I am terrified for the day he won’t remember me. My brother’s grandmother, Arleen, was never formally diagnosed with Alzheimer’s but had all the signs and symptoms. She was once one of the most incredible people who could light any room. Now, she can no longer recall who people are and can barely speak. My husband’s grandmother, Patricia, was diagnosed with vascular dementia last year. She recently moved in with us last year, and we are now her full-time caregivers. She used to be on top of everything and was highly organized. Now, she is confused, repeats herself often, and gets extremely frustrated with others. We have our good and bad days, but we take each day at a time. To watch these three-amazing people turn into a shell of their former selves is the worst thing imaginable, and I wouldn’t wish this pain on anyone. The fight to defeat Alzheimer’s and all forms of dementia is an uphill battle that I am ready to take on. I want to inspire others that there is hope and that you are not alone. It feels like, at times, you are, but thanks to this, the Alzheimer’s Association support brings comfort. I haven’t utilized all the services, such as the hotline, enough, but knowing it is there means the world. I joined the committee and the walk to give my support in many ways. Raising funds is one way, but giving a voice to those that have lost theirs is just as important. Many loved ones are lost in the fog, and I want to be their voice. Ensure they get the care and support they need during their time of need. It includes the caregivers and family members that sacrifice their time to help their loved ones. Caregivers are on the front line and need the most support. I am walking to end Alzheimer’s. The walk is an incredible event where you feel positive energy, and everyone is there to support each other. We are all in the fight together to find a cure. There is such powerful healing and hope behind the walk event. Everything I do is to fight for a world without Alzheimer’s and dementia. My mission is for future generations to only know stories and be spared the pain of watching their loved ones slowly fade away.

“The Support Goes On and On” By: Pastor Jeanette Jordan This story originally appeared in our blog in 2020. Dr. Jordan is currently volunteering for the Alzheimer’s Association as a support group facilitator for the Women and Men of Faith Support Group, a community educator, and a NEW IDEAS Champion for the NEW IDEAS Study. I married the love of my life, Robert Andrew Jordan, on July 29, 1962. He was twenty and I was seventeen. Fifty-five years later our story of love and happiness, good times and bad, ups and downs, twists and turns, from poverty to prosperity had enough guiding light that it was turned into a published book “From Suspenders to Stethoscope…The Dr. Jordan Story.” This story was released on June 30, 2017, the day which was the last day of work for my husband, Robert A. Jordan, M.D., the pediatrician, a graduate of Rush Medical College, the first African American Chief Resident at Rush Presbyterian St. Luke’s Hospital, a well known and respected physician who was known for the quality of patient care he gave to thousands of children during his time in practice. He believed that no matter what one’s socioeconomic orientation may be, ethnicity or gender, or religious affiliation – everyone deserved the best of healthcare. Yet this dedicated clinician had been diagnosed with dementia. It was in January 2014 that I finally came out of denial and came to terms with what was going on with my husband. I shared with our five children as well as Bob’s mother and sisters my fear of what was later confirmed – he had dementia. I became more observant of the changes in his behavior. He would call me from his office two or three times a day to ask how my day was going and I would share with him what I was doing or had done but a few minutes later he would call again, and ask the exact same question. When I would say you just called me and asked me that, he would laugh and say, ‘“Oh I was just kidding.” He was an avid golfer and would golf at least two to three times per week with his buddies or on his off days and special occasions. However, I began to notice his buddies stopped calling to include him in their golf outings. I eventually realized it was probably because he would interrupt the game when he couldn’t find his phone or misplaced his keys, everyone would have to go on the hunt only to find that his keys were in his pocket and/or his phone in the compartment of the golf cart. He stopped being excited about our golfing together. His interest in reading the bible, which he loved to do, diminished. We were a physician-pastor team and our dialogue with one another about our passions was slowly coming to a halt. I would ask him to stop by the store on his way home from the office to get a loaf of bread, or pick salad fixings and would come with everything but. Around late 2015 his staff started calling me to ask if Dr. Jordan had come home for lunch because it was way past his lunch hour and he had not returned. He once called me to say he had gone to pick up lunch for the staff but he was confused and couldn’t find his way back to the office. He seemed scared and panicky, but I was able to direct him home using landmarks and street signs after about 30 minutes. I was taking care of my 86-year-old sister who was a double amputee, and he would ask the same questions about her condition over and over. In early 2016 I finally convinced him to let me make him an appointment to see our Primary Care Physician be evaluated for possible memory loss- he wasn’t happy with the suggestion and went hesitantly. My husband was so crafty that he convinced our doctor that nothing was wrong with him, but rather he was preoccupied. When the doctor suggested that he could do a memory loss assessment just to rule out what we suspected, Bob refused. I can remember leaving the office in dismay, frustrated not knowing what to do. I began to watch his behavior even more closely. His routine of getting up at 7 a.m., showering, getting dressed, making and drinking a cup of coffee, and stopping by McDonald’s to get some oatmeal before going to the office began to change. He started sleeping later and later. His impeccable dress was a little off and it would take him forever to complete the dressing task; he was constantly misplacing his wallet or his phone or his keys. Every morning was a search for something that he had misplaced. When I located the item he would fuss and say “who put it there?”. I notice that his demeanor was changing and he would get irritated often. He started to get up earlier to get ready for work, sometimes as early as 6 a.m. when office hours weren’t until 9 a.m., leaving him to pace back and forth until it was time to leave. He stopped calling his mother, I would have to remind him. He forgot that our daughter’s fiance had flown in from California to ask him for our daughter’s hand in marriage. They had a long wonderful conversation and he gave his blessing. When the day came that she called to say they were on their way to get married, he became angry and claimed he’d never met the man. He began to take longer and longer to come home. As things got progressively worse, my children and I started preparing for Dr. Jordan’s retirement. We found a psychiatrist who convinced him to do a memory loss test and diagnosed him with Alzheimer’s. A second opinion confirmed this diagnosis. He was placed on medication, which he initially refused to take. We reduced his hours at his office, and my oldest daughter immediately pitched in by becoming the office administrator to help prepare for his retirement. He was resistant to retiring but we finally convinced him it was time to enjoy life outside of medicine, he was now 75 years old and God had given him the ability to practice 10 years beyond retirement age. July 3, 2017, was the first day of retirement for Dr. Jordan. On that day he got up early, got dressed in his suit and tie, put on his lab jacket, and began searching high and low for his stethoscope and car keys. On that day my duties as a caregiver began. Trying to get him to understand that he no longer had to go to work was a daily struggle. He was concerned with how we were going to survive, eat, and pay bills. This question went on all day practically every day. I eventually had to go write out our income sources and put them in his wallet so that he could visually see the numbers and understand for a short period of time that we were going to be alright. We had to move from our home which was now much too big for me to handle and seemed to be a trigger for his unhappiness. Not being able to drive the car that sat in the garage made him angry, and not being able to go to the office to care for the children confused him. I was becoming frustrated, angry, and confused. I hadn’t experienced or known anyone suffering from this disease and had no point of reference. I cried daily. My children insisted that I connect with a support group, so I started with the support group at South Suburban Hospital in Hazelcrest, IL, I then reached out to the Alzheimer’s Association of Illinois. After having attended an Alzheimer’s Association forum at Palos Hospital in Palos, Illinois where I shared my story I was asked if I would be interested in volunteering as a caregiver speaker for the Association and I gladly did so. I also- signed up to become a participant in the Emory University Tele-Savvy Caregiver Program which is a training program for caregivers. I needed to know all there was to know about being an informed caregiver, I knew how to be a wife but now I needed to know as a wife how to be a good caregiver for my husband. I’ve learned that I’m more than a caregiver, I am a clinician for my husband. This journey has touched my heart so deeply that I now have a need and calling to be an advocate, not just for my husband, but for all who are affected by this disease. My husband as well as all who suffer deserve to be cared for with respect, dignity, honor, and a deeper kind of love. Even though my plans were to care for him at home till death would separate us, my children and I had to make the dreaded decision in October 2019 to place Dr. Robert A. Jordan in a long-term care facility. He had begun to wander off, once having to be found by the police and brought back home. That was the most frightening day of my life. Then he was becoming aggressive toward me, my daughter, and my nephew; he was extremely agitated and depressed. In his new community, he has become very calm and more social with the other residents. I find solace in sharing what I’m learning and experiencing every day. One key I have learned is that self-care is most important. If I’m not healthy, I can’t see to it that my husband is cared for properly. During the time I was caring for my husband at home, I was anxious, tired, short-fused, crying daily, and suffering sleepless nights. I needed to share my feelings with someone who wouldn’t judge or criticize how I was feeling, so my children encouraged me to see a therapist. This was the best decision I could have made because she help me to work through my feelings of fear and frustration by focusing on self-care. I gave myself permission to enjoy my life through spiritual disciplines, outings with friends, or enjoying free time with recreational activities. I have been blessed with an awesome support team, my daughters, my church family, my Nephew, my God’s Son together with his daughter, and Dr. Jordan’s colleagues who visit him often. My two children who live out of state come to surprise their Dad and me as often as they can, but with today’s technology we FaceTime them when we visit. This support team allows me the flexibility to take trips to see my children and grandchildren who live out of state or to just do a getaway! I’m thankful for my support groups, the friends who have not abandoned us, my children who are the best, my colleagues, Bob’s colleagues, Bob’s agency caregiver, who still visits him, my church family, and the support goes on and on. The vows we took 57 years ago have even more meaning to me now, “for better or worse, for richer or poorer, in sickness and in health we’ll be one till death parts us!”

In honor of Black History Month, we spotlight those making a difference in our cause. This week we feature, Lisa Barnes, Ph.D. Dr. Barnes is the new deputy editor of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association. This newly-created role is designed to reflect and adjust to the rapidly changing field of Alzheimer’s and dementia research by expanding the topics covered in the journal. Alzheimer’s and Dementia: Journal of the Alzheimer’s Association emphasizes interdisciplinary investigations related to the causes of the disease, risk factors, early detection, treatment interventions, prevention of dementia, and the application of new technologies in health services. “We will strive to improve diversity and end bias in research while maintaining the high levels of rigor and quality that Alzheimer’s & Dementia is known for,” said Barnes, a cognitive neuropsychologist and Alla V. and Solomon Jesmer professor of Gerontology and Geriatric Medicine at the RUSH Alzheimer’s Disease Center at RUSH University Medical Center in Chicago. She is the associate director of the RUSH Alzheimer’s Disease Research Center. “We plan to build an outstanding group of advisors who will ensure that Alzheimer’s & Dementia remains at the forefront of scientific integrity and groundbreaking Alzheimer’s research,” Barnes added. The new deputy editor will provide editorial support, guidance, and counsel to the editor-in-chief and the editorial board. She will also work with the editor-in-chief to enhance and guide the editorial staff. “The Alzheimer’s and dementia field is evolving, and the changes to the journal reflect that growth and expansion,” said Donna Wilcock, Ph.D., editor-in-chief, Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association. “Dr. Barnes’ clinical expertise complements the translational research focus of the current editorial staff. Her accomplishments in the epidemiology of aging and Alzheimer’s disease will help to expand the focus of the full suite of journals.” Barnes received her Ph.D. from the University of Michigan in biopsychology and completed a postdoctoral fellowship in cognitive neuroscience at the University of California, Davis. She joined the faculty of RUSH as an assistant professor in 1999. She has received many NIH grants and has published close to 300 manuscripts. Her research interests include disparities in chronic diseases of aging, cognitive decline, and risk factors for Alzheimer’s disease. She is the principal investigator of two longitudinal community-based studies of older African Americans, including the Minority Aging Research Study (MARS), which has been funded by NIA since 2004. She advocates for the recruitment of under-represented groups into clinical studies and has received many awards and fellowships. About Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association Since its inception in 2005, Alzheimer’s and Dementia has sought to rapidly disseminate new findings and serve as a platform for clinical investigations and articles covering basic, social, and behavioral research.

Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer’s Champions. The grandson of a slave, Dr. Fuller worked alongside Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor. To find our special programs featuring Dr. Fuller’s legacy go to  alz.org/CRF

An interview with Ray Willis, Illinois Chapter Board Member How has Alzheimer’s disease/dementia impacted your life? I became aware of Alzheimer’s disease/dementia about 20 years ago and began using the term in place of senile/senility when observing individuals experiencing difficulty in remembering things. About 12 years ago (2010), my oldest sister and husband visited me in Chicago while in the hospital recovering from “sudden death-cardiac arrest.” As I lay in my hospital bed, my sister wandered off and was later found on the first floor near the exit doors. When hospital staff queried her about who she was and where she was going, her response was that her husband had admitted her to the hospital and that she was leaving to go home; keep in mind, she was visiting me having traveled from her home in Oklahoma. Upon my release from the hospital, I learned that her memory challenge had been diagnosed as Alzheimer’s disease. From this point onward, I observed a steady decline in my sister’s cognitive functions – from memory loss to not remembering my name, to babbling, to slow walking gait, to wheelchair assistance, to irregular eating, to not talking at all, to eventual bed-ridden, and finally making her transition in July of 2022. Although I was not present in her daily life over the past 15 years, I maintained constant contact with weekly calls and personal visits each year. I miss her more today than ever before when I reflect on the time and attention she gave me regarding family matters and assisting me in starting a Bereavement Ministry in my church. Years earlier, my sister had established a “Grief Ministry” at her church in Oklahoma City. I took my sister’s ideas and resource materials and transplanted them into my church. The “Bereavement Ministry”, some 13 years later, is still operating at my church. Thus, Alzheimer’s disease took away my sister, my friend, and my mentor! Why did you join the Board? I joined the Alzheimer’s Board thinking that I would be able to gain insight into treatment and daily living practices that I would be able to pass on to my sister’s husband that makes a difference, although she was in the latter stages of the disease. In addition, I felt I would be able to pass on these insights and knowledge to other family members, loved ones, and friends. What Alzheimer’s Association programs and services have benefited you and your loved one(s)? Since joining the Board, I have been trained as a volunteer “Community Educator” and have made a presentation on the “Ten Early Warning Signs” of Alzheimer’s. In addition, I have engaged in many conversations with family, and friends regarding Alzheimer’s disease, the Alzheimer’s Association, and its resources. Further, I am currently pursuing partnership opportunities with organizations and communities of color with the intent of increasing awareness and education about this terrible disease, which will ultimately lead to aligning this population with early diagnosis and treatment. I believe awareness and education are the foundation for increasing volunteers that will lead to increased donations, and last but not least, increased diversity in research and clinical trials! Combined, this is the absolute recipe for finding a cure for this beast of a disease. Why do you believe others should raise funds and awareness for Alzheimer’s disease? As we progress in finding new FDA-approved drugs and treatment regiments for Alzheimer’s disease, we cannot remain silent but must take on a “drum-major” mentality and align all affected people to resources that will make a positive difference in the lives of our loved ones, especially communities of color. I believe this “drum-major” attitude will witness a corresponding increase in individual donations and government funding. What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand? Alzheimer’s disease affects all people and has a disproportionate effect on people of color! Therefore, it is imperative that research and clinical trials become inclusive of all people. Although there are those that have not experienced Alzheimer’s disease/dementia first-hand, just live long enough and you will be it a loved one or a friend! Alzheimer’s is a disease and we must treat people with it with respect and dignity! What do you hope to accomplish through the Board in the New Year? I want to continue developing partnerships with organizations and communities of color. In addition, I am hoping to solidify a couple of pending partnership proposals with a faith-based and academic institution. Last but not least, I seek to get more Board involvement in identifying and offering up community and organization engagement opportunities. What would you say to someone wanting to get more involved? Find your niche and go for it! Be intentional about what you want to do; bounce it off a peer, receive feedback, good or bad, tweak it and see what happens. And, by all means, be proactive!

An interview with Jordan Kavanaugh, Illinois Chapter Junior Board My mom and Dad both passed away from Alzheimer’s disease. My mom was diagnosed at the very young age of 64 and progressed rather quickly. She passed away just 4 short years later and in that time it stripped her of everything and made her both a figurative and literal skeleton of who she was. She had to retire early because she could no longer do her job. They got a new computer system at work and she couldn’t learn it and didn’t understand why. Accommodations weren’t made at work because she didn’t want anyone to know she was sick. She had to stop driving because she would get lost. She went from being the social planner of her friends to not wanting to go many places. She was always friendly and outgoing, but as she got worse she developed a fear of sounding stupid and not being able to understand or follow a conversation. She became quieter and just observed rather than participating in social situations. My Dad, her partner, became her caregiver and took on a much different role than he ever had before. My mom always handled the cooking, bills, shopping, etc. and those routine tasks became overwhelming, confusing, and hard to accomplish. Rather quickly, she stopped recognizing her own home, not liking the same foods or any foods at all some days, couldn’t be alone for more than a few minutes, and then not at all. In a matter of a few years, we watched her slip further and further away… there wasn’t anything we could do except try to make the time she had as peaceful as we could. As hard as it is on the family, it is much scarier not recognizing your home, family, friends, and being confused and disoriented all the time. When I would leave my parent’s house to go home, I would sit in my car and cry and wonder how this awful disease could destroy someone’s brain and whole life so quickly. The last few weeks were some of the hardest days of my life. She completely stopped eating, walked around like a zombie, and then would collapse because she was tired. Alzheimer’s robbed her of so many things until she had nothing left. Five years later it still brings tears to my eyes. My mom lost her battle with Alzheimer’s on October 14, 2017. Just a year later in 2018, my Dad started having some difficulties, but the symptoms were different than my mom’s early symptoms so we initially assumed it was grief or anxiety from losing his wife, living alone, and having the life he knew for nearly 40 years flipped upside down. Sadly, that was not the case. We went to a few doctors, ran the usual tests, and were hoping for some answers. Never in a million years did I expect the neurologist to tell us that my Dad too had Alzheimer’s. With my mom, I was confident in what was going on and pushed for the diagnosis so we would finally have answers, but with my Dad, I was blindsided. How could my Dad, my only parent left, have the very same disease I had just lost my mom to? His diagnosis hit hard; I was totally unprepared for it. I couldn’t watch another parent fade away. I couldn’t lose my Dad. This time it was totally different. My Mom had my Dad to care for her, she wasn’t alone. Now my Dad was living alone and my sister and I were the only ones left to care for him. Initially, we managed, going there for meals, calling a few times throughout the day, doing grocery shopping, and taking over the bills, but very quickly, that changed. We needed caretakers to help, adding more and more hours to their schedule to cover the day, and asking friends to help. We got by, but barely. It was a full-time job while still working full-time and managing our own lives. My Dad seemed to go downhill more quickly than my mom in some ways, but he always knew who we were and somehow kept it together for us even when he was having hallucinations and was confused about his surroundings. He knew he was sick; he wasn’t shy about telling anyone about his condition. He knew that he was struggling and that things didn’t make sense. Maybe it was because he watched my mom go through the very same thing or maybe because Alzheimer’s impacts everyone a little differently. My Dad passed away on December 2, 2020, just two short years after he was diagnosed. Alzheimer’s not only robbed my parents of so many years but also stole precious time with them from my sister and me. Holidays, birthdays, special occasions, and even normal days aren’t the same anymore. Seemingly overnight everything started to change. There was a total role reversal and the people who raised and took care of us now needed us for everything. It was very difficult to see routine tasks and activities become such a struggle for my Mom and Dad, especially at such a young age. What Alzheimer’s Association programs and services have benefited you and your loved one(s)? The support groups. My Dad, sister, and I went to quite a few support group meetings when my mom was first diagnosed. We didn’t know what to expect, how to best handle things, and what was coming in the future. We wanted to be as prepared as we could. They gave us so many good tips and helpful advice to help us navigate our “new normal.” One of the most helpful tips was to get my parents’ affairs in order before my mom got to a point where she wasn’t of sound mind to sign documents. While this isn’t a fun task, it made things much easier to deal with in the end and to know we were honoring her wishes. Why did you join the Junior Board? I joined the junior board in 2015 in honor of my mom. I wanted to do something to fight against this terrible disease. My friends were always supportive but having peers who understood first-hand what I was going through was invaluable. Meeting a network of people who were experiencing or who had previously experienced the devastating effects of Alzheimer’s helped me navigate. They offered so much advice and support. The friends I have made on this board will be lifelong friends. The Junior Board is a solid group of young professionals that I am incredibly lucky and thankful to be a part of. Now that I am no longer caring for parents with Alzheimer’s I am fighting harder than ever before…we have to find a cure. I will continue to fight, advocate, and raise awareness until no one else has to battle or watch a loved one suffer from Alzheimer’s. And hopefully one day we have our first survivor. Why do you believe others should raise funds and awareness for Alzheimer’s disease? Just because you aren’t currently impacted by Alzheimer’s doesn’t mean you won’t be someday. I never thought my mom and then my Dad would be. I may even be one day. Of the top 10 causes of death globally, Alzheimer’s is the only one without a cure… yet. It’s scary to be handed a diagnosis for a disease with little to no treatment available. I believe the cure is out there but in order to get there we have to keep raising awareness, fundraising, and fighting. What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand? Alzheimer’s is more than just forgetting where your keys are or a person’s name. Alzheimer’s changes everything; your personality, your taste buds, the ability to have a conversation, shower, get dressed and even recognize your own home. It can make you agitated, anxious, scared, or wander away from home. It is nearly impossible to reason with a person with Alzheimer’s and they can get upset very easily if you try. My mom used to ask to go home (when she was already home). I could have shown her 10 examples to prove to her that she was home, but it didn’t matter, she still wanted to go home. There was nowhere I could take her that would have made her feel at home because everywhere was now unfamiliar. White lies become your best solution. I struggled with that for a long time as I didn’t want to lie to my parents. However, it preserves their peace as well as yours. Trying to prove something that you will never succeed in doing only frustrates you and the person living with Alzheimer’s. Their short-term memory will go first, but their long-term memory usually stays intact much longer. My parents couldn’t have told you what they had for breakfast or who came to visit the day before but if you asked questions or had a conversation about their childhood or early adulthood, those memories were as clear as could be and for those brief moments things feel normal. I always tried to focus on talking to them about things they would know rather than things they didn’t. What do you hope to accomplish through the Junior Board in the new year? I have been on the board for 7 years but for nearly 5 years I was dealing with the disease firsthand and grieving the losses of my parents. Now I have more time to devote to advocacy, fundraising, and volunteering. I hope to take a more active role to help make this our biggest fundraising year yet, inspire others to join and fight Alzheimer’s with me and get us one step closer to finding a cure. What would you say to someone you were inviting to Paint the Night Purple? Paint the Night Purple is one of my favorite nights of the year. An amazing group of young professionals and our friends and family get dressed up and come out to support a cause near and dear to my heart. We will have a DJ, The Boy Band Night, food, an open bar, silent auctions, and raffles all benefiting the Alzheimer’s Association. Get dressed up, bring your friends and come out for a fun night you won’t forget! Paint the Night Purple will happen on Friday, February 3 from 8 – 11 p.m. at Morgan MFG. Tickets are still available at ptnp23.givesmart.com

Written by Amy Sunshine It was July of 2017 when I stopped receiving emails from my father, which was somewhat unusual as we communicated in that manner somewhat frequently. I never thought anything of it until looking back. That summer we were with my family visiting my niece at her last year of camp. My dad came because it was special not just to Ella, but to my mom as well as she and her mother and sister all attended the same camp. We were staying close to Denmark, Maine where she was in camp. On our return to the hotel late one day my dad asked what state we were in. I immediately felt sick to my stomach. My dad knew everything and didn’t miss a beat. He was the smartest person I had ever known. When I mentioned it to my siblings they brushed it off, but I could not. When I saw my mom back at the hotel alone in her room, I asked her if she had noticed anything strange about my dad. Her response was alarming as she mentioned noticing it also. We were leaving for home in a few days and my mom said she was going to make a doctor’s appointment for my dad to see if anything was going on. Perhaps a brain: tumor, which was the very worst thing that I could imagine. Looking back I should have noticed signs. Many years prior he had lost all sense of smell and the doctors said they couldn’t find anything and it was nothing. We joked about it for years. In retrospect, it was one of several signs we were overlooking. My dad started misplacing things and asking questions like, “who took my drink?” That too was something we would joke about but we still were missing the fact that he, who had never lost a thing, started missing checks and other things. There was no brain tumor, thank god, as that was my biggest fear but we eventually were told that he had mild cognitive impairment which could last indefinitely and not get any worse. His scores would go up and they would go down but not in relation to the progression of the disease. We were scared and sad but according to the doctors, we had time. Immediately I began looking for sources that I could get in touch with for all my questions, and to speak to others who understood what I was dealing with. I contacted the Alzheimer’s Association Illinois Chapter and was put through on the phone to trained counselors who were fantastic and of great help. 24/7 there was someone there including trained volunteers who were also great sources of information. That year I decided to sign up for Walk to End Alzheimer’s which was when I became more involved with the organization and participated in other fundraising and awareness programs. By becoming more involved and learning more than I could on my own was of comfort, I was able to ask about home care services and other options. With more than 6 million+ people in the United States living with this disease at this time, the numbers are going to grow exponentially. Raising awareness and fundraising will help us get to the first survivor of Alzheimer’s. For those people who have not yet been affected in one form or another, it is devastating. On the patient, the loved ones who are usually the caregivers, and the 57% of employees having to go in late, leave early, or take time off. Over the course of days, months and years I watched my father rapidly deteriorate. I lost him over and over again. I’d like to think he knew who I was to the end. I promised I’d never leave him and I was with him for the final goodbye, in October of 2021.

It’s hard to imagine what it must be like for my father, Dennis, to lose the ability to communicate and connect with the people he loves. He would talk to anybody, he had a great sense of humor and was someone people went to for advice and guidance. I have two kids, but because Alzheimer’s has taken away my dad’s ability to talk, I have never had a chance to have a real father-to-father conversation with him. Without his verbal guidance, however, the lessons he instilled in me as a boy continue to guide me in my life. He taught me the importance of hard work, compassion, and honesty, and those lessons have stayed with me even as his memory has faded. I’m grateful for the time I had with him and the memories we made together. It has been a difficult and trying period since his diagnosis for my family, especially for my mom, who was my dad’s primary caregiver for more than 10 years. When he moved into long-term care in August of 2020, the pandemic removed our ability to be with him in person. Visits had to be done through a double-paned window, year-round and in all kinds of weather. Despite this, my mom has remained a constant presence in his life. She has been an incredible source of strength and support for my dad, sacrificing so much to ensure that he receives the care and attention he needs. He is always happiest when she’s nearby. As someone who has been so personally impacted by Alzheimer’s disease, I know firsthand the devastating effects it can have on individuals and their families. That’s why I have decided to get involved with the Alzheimer’s Association’s Longest Day program, which raises funds and awareness for a cure for Alzheimer’s. I am proud to say that through our Longest Day events called the “DEW 5000”, we have directly raised over $13,000 in honor of my dad and all those affected by Alzheimer’s disease. The Longest Day typically falls on or around Father’s Day, which always makes it special for me. In fact, the first time I saw my dad in person after moving into long-term care during the pandemic was on the Longest Day, on Father’s Day in 2021. I will never forget his response after telling him how much we raised – “You did all that??” with a big smile. I could sense his pride. I have used social media to engage with my network and encourage them to share my posts and my fundraiser with their own followers. This helped to exponentially increase the reach of my campaign and ultimately led to more donations. It’s been an incredible show of support from our family, friends, and community, and I am grateful for every donation. But our work is not done yet. We still have a long way to go in the fight against Alzheimer’s, and I hope you will consider contributing to our cause. Any amount big or small will make a difference and help us get a step closer to finding a cure for this devastating disease. Thank you for your generosity and support. We will find a cure, together. – Nate Wicks To register for The Longest Day go to: www.alz.org/TLD

“The waters are deep and wide and murky,” shares Barrington resident Justine Gregoire on the challenges of caregiving. Her father was diagnosed with Alzheimer’s disease in 2018 and passed away this spring. Justine faced unique challenges as an Alzheimer’s caregiver. She found valuable support through the Alzheimer’s Association, and today she fights for a cure by fundraising with The Longest Day . Justine became a caregiver to her father in 2020, two years after his initial diagnosis. She began caregiving fulltime during a global pandemic. “My father and mother moved in with us during the pandemic so we could help care for my dad with my mom,” Justine shares. “It was one of the hardest times in my life.” After progressing through the disease, Justine’s father passed away on Mother’s Day in 2022. She remained committed to raising awareness for Alzheimer’s disease even after her caregiving responsibilities ended. The Longest Day , a signature event from the Alzheimer’s Association, let her get involved on her own terms. Named after the day with the most light — the summer solstice — The Longest Day asks participants to use their creativity and passion to join the fight for a cure. Justine and her husband Joel chose to host a golf outing on the summer solstice in 2022. However, her fundraising began months before on the darkest day of the year. On December 21, 2021, the winter solstice, Justine shared an unfiltered look at a night in the life of a dementia caregiver on her social media pages. “People have no idea how hard the nights are. I thought telling that story on the longest night of the year was appropriate,” Justine shares. “I have never shared anything so personal on social media before.” Her candor was met with an outpouring of support. Justine expected to raise $500 when she posted her story to LinkedIn and Facebook. She raised over $4,000 in the span of a few days. “It was amazing,” says Justine. Between her winter solstice fundraiser and her summer golf outing, she raised $12,000 for Alzheimer’s care, support and research. She hopes that her honest story motivates others to join the fight for a cure. “If you know or love anyone who is or will be 65, then the chance of them getting Alzheimer’s is [high],” Justine says. She’s referring to the fact that 1 in 3 seniors dies with Alzheimer’s or another dementia. “Those are high odds and there are zero effective treatments. “[The disease is] not just simply forgetting something you said or did or a person’s name,” she shares. “Someone with Alzheimer’s forgets everything about who they are: what they liked to eat, how to sign their name, how to fix things.” As the disease progresses, intensive, around-the-clock care is usually required for a person living with the disease. Late-stage challenges include trouble walking, showering and breathing. “It is devastating to watch, especially knowing there is no hope, no respite,” Justine confides. The burden of caregiving can be emotional, physical, and financial. “It is not peaceful,” Justine says of the disease. “I don’t want one more person to watch their loved one die like that. And it hurts me to know it’s still happening every day.” There is no guidebook for caregiving; but the Alzheimer’s Association provides resources for every step in the journey. Justine found the free, 24/7 Helpline (800.272.3900) particularly useful in choosing the appropriate care options for her dad and tackling the financial challenges of caregiving. “I used the helpline and received the best information and help I received from anyone during the course of the disease,” she says. Every call to the 24/7 Helpline reaches a master’s-level clinician offering confidential support to people living with dementia, caregivers, families and the public. “You need to speak to someone who knows what they are talking about,” assures Justine. Individuals looking to fight the darkness of Alzheimer’s disease are invited to register for The Longest Day . While some participants choose to do their fundraiser around the summer solstice, winter is an ideal time to start fundraising. Consider hosting a hot chocolate stand to raise funds for the Alzheimer’s Association; host a sledding competition with a donation entry fee; or share holiday pies in exchange for a donation to your fundraising page. Register for The Longest Day and raise $200 by December 21, the winter solstice, to earn a free thermos. Get started now: https://alz.org/tld

Alzheimer’s runs deep in Alyssa Johanson’s family: her great-aunt and grandmother both passed away from the disease, and her father was diagnosed with early-onset Alzheimer’s nearly four years ago. An athlete her whole life, Alyssa joined the 2022 Bank of America Chicago Marathon ALZ Stars team to raise awareness and funds for a cure.  Alyssa began long-distance running after college. “I remember watching a friend run a marathon back in 2019 and was so moved by her run that I woke up the next day and signed up for my first marathon,” she says. For her second marathon, Alyssa wanted to make her miles matter beyond the personal achievement. She discovered the Alzheimer’s Association charity team, ALZ Stars.  “Raising money for a cause so close to one’s heart helps to lessen the burden and grind of marathon training,” shares Alyssa. “I signed up to run with the official 2020 ALZ Stars team and unfortunately due to COVID, we couldn’t run in-person in Chicago.” However, the pandemic didn’t stop Alyssa from making a tremendous impact. “I still chose to run it on my own at home in California after raising over $6,000 for the Alzheimer’s Association,” says Alyssa. Her entire family – including her father – celebrated with her at the finish line. Currently our highest ALZ Star fundraiser with over $12,900 raised for Alzheimer’s care, support and research, Alyssa is traveling to Chicago to conquer the Bank of America Chicago Marathon. She joins hundreds of ALZ Star athletes who have been impacted by Alzheimer’s and dementia.  “It’s hard to put into words the amount of gratitude I have towards every individual who has helped me along the way — those who have donated to my fundraisers, trained with me, sent me a motivational text message. Doing something outside of your comfort zone with the support of an entire army of supporters is one of the most rewarding feelings that life has to offer.” Alyssa’s fundraising has had a huge impact for individuals and caregivers facing Alzheimer’s – a responsibility she is well-acquainted with. “I moved home in August of 2020 to help my mom with caregiving duties, which lasted for about a year and half,” Alyssa shared. Her father’s disease eventually progressed, causing them to place him in a long-term memory care home this past March.  “ Grieving a loved one with advancing Alzheimer’s disease doesn’t happen in a straight line. Some days I wake up hopeful, energized by the reminder that life can be so fragile so we must all make the most of it while we’re here, and other days I wake up deeply depressed, missing my father, knowing that while he is still alive, he is no longer the man that he used to be, stuck inside of a body and brain that are failing him.”  Alyssa’s father won’t be in Grant Park to celebrate Alyssa when she crosses the finish line, but he will be on her mind as she runs. “My dad won’t be there this time around, but I’ll have him, my grandma, and my great aunt in my thoughts along every mile of the race as my motivation!” Learn more about ALZ Stars and join the 2023 Bank of America Chicago Marathon team at act.alz.org/ALZStars2023

Written by Monica Vest Wheeler When I wrote a book on coping with the emotional and everyday challenges of Alzheimer’s, dementia and memory loss in 2008, I had no idea how much I’d rely on my own words two years later. In spring 2009, I noticed something peculiar about my father-in-law. A couple of family members agreed, but what was it. Hmm, I wondered if it could be dementia of some kind…. Worry about his behavior escalated a year later. My husband Roger, oldest of five, and I offered to move him from Florida to Peoria at age 83 where we could find assistance, as we were the ones with the most flexibility. We didn’t have a diagnosis yet, but he had slipped considerably in a year. By this time, I had become involved in assisting Alzheimer’s Association support group meetings as a co-facilitator and engaged with many families. I knew we needed a thorough examination by a doctor familiar with dementia. Families must venture down that terrifying road first, because the longer you wait, the harder it gets….Denial will dig its vicious claws into everyone and disrupt families like nothing they’ve ever seen. Within two weeks, we got that diagnosis: mid-stage Alzheimer’s. I stopped at the Alzheimer’s Association office in Peoria to fill out paperwork for a Safe Return bracelet. The staff member who I worked with saw my tears and gave me an extra big hug that day, commending me for doing the right thing by protecting my dad-in-law with that bracelet. Over time, people would say, “What are you going to do? You wrote THE book.” Yes, I had collected the experiences of families coping with the disease, and it was all raw, real and relevant. As my own caregiving journey commenced, I found that when I took my own advice generously served in my writing, it helped tremendously. But my heart often got in the way. Love can set up emotional roadblocks that seem impossible to conquer, especially as his abilities seemed to slip daily and his behavior became more erratic as we tried two different assisted living facilities. We attempted medicines and different dosages to even out his moods, but the day his angry fist came within inches of my face, I knew drastic measures had to be put into place immediately. This was a little over two months of moving him to Peoria. Roger and I searched for Alzheimer’s care facilities , and one of my sisters-in-law was able to visit and help as she was also shocked by the change in her dad. I put him on waiting lists at five units, with no idea when an opening would give us the relief we needed. My husband and I endured the most stressful stretch of our 31-year marriage as we waited and made daily visits to pacify his dad and try to address this obsession he had developed about money and accusing us of stealing from him. We could not lock him in his room or inside the building, and he would occasionally toss lit cigarette butts into bushes, once leave the microwave running for 40 minutes, and often scare fellow residents with warnings of God’s wrath to be leveled against the evil people of Illinois. Other than that, he was a nice, lovable guy. Hindsight tells me maybe we should have brought him into our home while waiting for that magic opening. We were so emotionally exhausted by the stress that we honestly didn’t think of that option. The assisted living staff were beyond patient and supportive, understanding our predicament…but all of us knowing we had to place him in a locked facility for his and everyone else’s safety. We no longer had a choice. The August day I drove him to the Alzheimer’s unit with an opening nearly an hour and a half away from Peoria…one of the hardest moments of my life, tricking him into checking out this nice place with me…moving his stuff in while a staff member kept him occupied…and walking away as he banged on the door to let him out. It still hurts my heart. But we could and had to sleep that night…for our own health and sanity. I had already told many caregivers, “I don’t want to read on your tombstone what a great caregiver you were.” Our rollercoaster ride was not over as we had to deal with more medications to calm him, diffuse his anger, survive two stints in a mental health ward…to keep him vital but not doped up. It took a while but he found calm and an outlet by endlessly “walking the rails” down the hallways. That’s where I’d find him when I visited. Sometimes he’d nicely ask me to get him out, but with simple redirection, there were no more outbursts. He was home now, where the staff came to love him, his smile, gentle nature and trail of candy wrappers. These folks became part of my family, as we united to keep him safe and comfortable…until he passed away peacefully May 12, 2011. I lived at the Alzheimer’s unit at his bedside the last 11 days of his life. We designated the Alzheimer’s Association for memorial contributions because I could not have survived those difficult early days without the skilled and kind souls I found there…a classroom of life I continue to attend because they recognize that everybody and every body is different. Families share the same emotions of fear and grief, but their experiences are unique. Here’s the rest of our unique story: We made the difficult decision to donate his brain for Alzheimer’s research in hopes of helping other families avoid our heartache. To our surprise, he had no sign of Alzheimer’s, but vascular dementia , likely brought on by the brain injury he had suffered 30 years earlier after a fall. It all made more sense…and eased our worries about Alzheimer’s in the family. The most valuable lesson? No matter how strong you think you are emotionally and physically, you can’t survive this alone. Thank goodness I learned that before my own journey began.

The Alzheimer’s Association Illinois Chapter is thrilled to welcome seven new members of our Board of Directors for fiscal year 2023. Our new board members commit their talents, passion, time and connections to strengthen the fight against Alzheimer’s. We thank them for their commitment to our vision of a world without Alzheimer’s and all other dementia, and we look forward to accomplishing incredible things together in the year ahead. Scott Burnsmier – Operations Manager, University of Illinois Hillary DeGroff – Associate Principal, Perkins Eastman Jeremy Kruidenier – Executive Director and General Counsel, Wine and Spirits Distributors of Illinois Osvaldo Montelongo – CEO, ConnectCareHero Carol Shaw Burns, Ph.D. – Corporate Director of Resident Service, Vi Living James Sherwood – SVP and Counsel, McGuireWoods Consulting and LLP Ajay Sood, MD, Ph.D. – Assistant Professor, Rush University Medical Center Scott Burnsmier Hillary DeGroff Jeremy Kruidenier Osvaldo Montelongo Carol Shaw Burns, Ph.D. James Sherwood Ajay Sood, MD, Ph.D.