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Candy has been a caregiver since her husband was diagnosed in 2008. She has had quite a difficult journey with Alzheimer’s as many people in her life have been diagnosed. Her grandma had it, her step grandparents and both her mother and father had the disease. When her husband was first diagnosed, she stepped into the caregiver role. Candy first noticed that he needed help with little things and then it progressively got worse. This is when she did research and found out about the Alzheimer’s Association. She discovered all the great resources they offered that really helped prepare her for what she was about to endure with her husband. Caregivers have a very difficult job that only they can understand. There is really no one they can go to, to just vent. It is especially hard adjusting to the new lifestyle when you witness your spouse start to forget all the things they once loved. Candy’s husband loved to cook. As his condition worsened, he began to forget the little things like his recipes and how to use the stove. He needed her help. Her husband has always been a very proud man, so at first it was difficult for him to accept that he needed help. It was painful seeing her husband deteriorate every day. This is when she turned to the Alzheimer’s Association for support. The Alzheimer’s Association has helped her so much throughout her journey being a caregiver. The support groups and 24/7 helpline are lifesavers for caregivers. Candy became a support group facilitator in hopes of helping others that are going through the same thing as her. It gives her joy to know she can help someone. Being that she lives out in the middle of nowhere, some resources are limited. She regularly attends a weekly Wednesday Coffee & Conversation group to stay in touch with local friends for support. Several of her support group members also attend these meetings and they stay in touch more often than just their monthly scheduled meetings. Caregiving is a very difficult role to take on, especially if it is for a loved one. Candy emphasized the importance of just being there for everyone she can whether it be with this small group or just a quick phone call to know that someone is always there for you. They have even started Zoom meetings for caregiver support in the midst of COVID. For Candy, being a facilitator has helped her to relieve a lot of stress. It is nice having someone to talk to who understands what you are going through. She wants others to understand that that you are not alone, and the weight is not all on you. You are going to screw up and it is okay. Sometimes it is very stressful being a caregiver and hard to watch someone you love become someone totally foreign to you. It is hard to watch them slip away every day. Do not be afraid to go to support groups, it is reassuring to be understood by people going through the same thing. There is help and there is hope! To learn more about becoming a support group facilitator with the Alzheimer’s Association Illinois Chapter, click here.

Mother-daughter bonds are often described as a connection like no other. This is especially true for my mom (Terri Mitchell) and me. I am an only child who was raised in a, now rare, two-parent household. My dad (Brad Mitchell) often worked long overtime hours to help support our small family and to ensure we never went without. My father’s long hours at work naturally provided more quality time between my mom and me, and this helped further develop and strengthen our bond. Like it may happen with many younger mothers, mom and I have been compared more often as sisters. I have also at times been asked if I was more the parent than she was. While growing up, little did I know that this may have been a premonition of what was to come. My relationship with my mother continued to strengthen as I graduated high school, college, and then through a move to Texas, far away from all my friends and family to complete a graduate degree. To my surprise, my parents’ social lives seemingly flourished after I moved away (insert the shock and awe of an only child here). But the distance over the past 20 years has in no way hindered our relationship and probably further encouraged increased communication via calls, texts, now FaceTime, and visits back and forth for special occasions…or just because we miss each other. Approximately around 2014, after my dad had already been retired for several years, my parents bought a house in the next town. The goal was for mom to commute while she continued to work two more years until her own retirement. Suddenly, and seemingly out of nowhere, we were notified that she was making mistakes in her job on tasks that she could have done with her eyes closed after so many years at the same company in the same job–such as forgetting how to make copies on the printer, make coffee, etc. Unfortunately, it took nearly two years to find the correct diagnosis: Dementia! She was too young—only 58! She had already lost her job and began going to multiple doctor appointments, testing, and getting evaluations to try to rule things out and narrow it down to something that is meant for “old people.” My grandparents were nearing their 80s at that time, and they were in better mental health than their youngest daughter. I am a social worker in the medical field and have a baseline understanding and experience with Dementia and Alzheimer’s. But this is my mom. My best friend in the world. She was only 58 years old. I have not been blessed with children, and even with medical experience, irrationally questioned whether these lacking extended familial connections, support, and incentive to help her “stay young” had impacted the potential progression of this ugly disease. It made me question everything. What could we have done differently? Could we have helped her do anything differently? Could we have prevented or changed this in any way? As things progressed with mom, my dad stepped up and stepped into the role of caregiver. He graciously credits both the education and emotional support provided by the Alzheimer’s Association throughout this unexpected journey. My parents have been together since Junior High School. October 2020 marks their 45th wedding anniversary. It does not take a medical study to prove men are not normally caregivers by nature, but my dad did it. He did it for about six years—becoming more of a parent, caretaker, and babysitter than a husband. He did it with minimal assistance from me or anyone else. As an only child, and female child…I struggled for years with the fact that I could not be there on a regular daily basis to help care for my parents who sacrificed so much for me and our little family. For years, we discussed them moving closer to me to be in San Antonio, Texas, a sprawling metropolis with more resources at hand than their small rural town in Litchfield, Illinois. But they were born and raised in Carlinville. It is what they know. It is where everyone they know is. Caregiving takes a toll that no one other than other caregivers can understand. Even maintaining daily contact (sometimes talking even several times per day) with my mom and dad is just not the same as being there–providing extra relief, supervision, and support. Mom was finally admitted into a memory care facility this Valentine’s Day. Call it women’s intuition, but I knew dad was at a breaking point and I could hear the fear in his voice. I flew home immediately. There is something about that mother-daughter bond that provides a sense of comfort and love without requiring words. Just each other’s presence is enough. Dad and I worked with mom to help her pick out new furniture and decorations for her “new apartment,” which is luckily only one mile from their house. The facility kindly let me sleep with her those first few nights to help her adjust with me there, slumber party style. Only it wasn’t the fun kind of slumber party that both starts and ends on a good note. I flew back home devastated because this is what it had come to but I knew and understood that neither dad nor I could safely care for her at home without constant help or support. What loving child can put a parent “away?!?” But I was reassured by the fact that dad is practically next door, and he has not wavered in his constant devotion and caregiving for mom. I also knew that mom has always been a friendly, fun loving, outgoing presence in any room, so she is loved by so many–I knew she would continue to have visitors and ongoing support from friends and extended family. But this is 2020.  Barely one month later, the COVID-19 lockdown hit as the pandemic spread.  As I write this, it has been 8 months since mom was admitted into the memory care facility.  Any other year, I would have flown home several times to visit.  Now, Thanksgiving is canceled and probably Christmas, as she will not be allowed in/out until there is a vaccine.  Mom forgets things, such as how to turn on her TV, change the channel, charge her cell phone, how to shower, what clothes to wear…but I am very grateful she still has the ability at this time to call and FaceTime (with some assistance).  But to get those calls any hour of the day or night of her crying, feeling alone and trapped are unbearable.  I want to fly home, walk her out, and bring her home with me to live happily ever after.  But this disease will not allow it.  There is no fairy tale ending with this disease.  But all challenges aside, my family and I discuss our blessings constantly.  At this time, we are lucky to be able to have her at Copper Creek Cottages in Litchfield, where they provide specialized memory care for those with Alzheimer’s & Dementia.  But even in good hands, we don’t have my mom.  “They are wasting our time!” My mom said this about us losing time together because of the COVID-19 increase.  Even she realizes how vital it is for people to wear a mask, wash their hands, and social distance. She doesn’t understand why it is so hard for so many to do such simple things. She is my best friend on earth and I am literally being robbed of the precious, limited time I have with her.  This is not just time we will not get back, but it is time that we are missing of her…with her…her personality, her memories she has, making new memories (for us!), etc.  I miss my mom.  For now, we will continue to talk on the phone at every possible opportunity, see each other on FaceTime (because it is better than nothing), and hopefully (praying as I type this) we will not only be able to simply see each other again in person—but be able to hug, go shopping, spend time with our family, or even just sit and watch TV together.  Time with my mom is time with my mom.  So, I will continue grasping onto whatever I can as long as I can.  And God bless my dad, extended family, her caregivers, and all our guardian angels (her parents included).

Six years ago, my wife was diagnosed with Early Onset Alzheimer’s. Like everyone else who is faced with a family crisis, we had no choice but to embrace the news and figure out how to deal with it. My wife, Eva, and I have two children. At the time of her diagnosis our son, Jonathan, was a sophomore in college and our daughter, Leda, was a senior in high school. While we are a strong family, the truth is that everyone needed to process the diagnosis themselves, in their own way. And the ways in which we did this were not only surprising, but inspirational. We all went through the many stages of grief, but as we each came through the final stage, we responded in different ways. After a few months of reluctantly coming to grips with Eva’s illness, we finally accepted it and started looking for ways to help and support each other while we figured out how best to deal with the situation. I adopted the motto “Today is the best day of our life” because I knew we needed to celebrate everyday while never losing sight of the reckless abandon and relentless impact the disease would have on my wife. My daughter was living at home when my wife was first diagnosed and I think the situation was particularly hard on her. When she left for college, she knew that I was being left alone to care for my wife and that she could only provide support from a thousand miles away. I am fortunate to have smart, industrious children and my daughter put her energy at school toward finding a way to provide “support from afar.” This ultimately led her to apply to a program on entrepreneurship at her school, Colgate University. She was accepted into the program, which turned out to be a turning point in her life. Leda saw the challenges that I was having as a caregiver and she started thinking about new ways she could help. Ultimately, she identified that there was a significant amount of technology in the marketplace that could help a caregiver, but it was not easy to find. So, she embarked on a journey to create a company to help caregivers find technological solutions that allowed them to be better caregivers; and her company Alz You Need was born. Over the next five years, my daughter took this simple concept and turned it into a viable company that helped caregivers identify their biggest challenges, and then make them aware of technology-based solutions that could help them. These solutions included readily available items like Key Finders, to new technology like Bluetooth driven prescription bottles that remind you when it is time to give medication, to online meditation apps and virtual companions. Along the way, because of her youthful approach to problem solving for senior care issues, she became recognized as an opinion leader within the assisted living community and was regularly asked to speak at national conferences. And in 2018 she was voted as one of the top people under the age of 40 who were making revolutionary contributions to the senior care industry Aside from the pride that I felt as a parent watching their child excel, I had the opportunity to serve as a testing site for many of the products. Some of the products worked well for me, and others didn’t, but through trial and error I found the right mix of products to help me become a better caregiver; providing better care to both my wife and myself as a caregiver. My son, Jonathan, on the other hand became my sounding board and the voice of reason on my shoulder who held me accountable to accept the reality of our situation. I believe that as a caregiver for a loved one, we slowly become accustomed to the unthinkable as we normalize and deal with the reality of day-to-day care. Jonathan took on the responsibility of getting me to accept reality and internalize what my wife needed from an outside perspective. Fast forward six years and we are still caring for my wife. It has gotten harder, and we are at a point where Eva needs more support than I am capable of providing her. But while her situation is nothing short of awful, it has been rewarding to see how my kids have responded to their mother’s condition and how they have embraced a bad situation and risen above it to create opportunity and grow as individuals. No one promises us that life will be fair, but as with any negative situation a significant amount of “good” shines through the bad and I personally believe we have an obligation to our loved ones to get past the pain and focus on these positive outcomes. Laughing at a time of ultimate sadness can be a first step to honoring the life, love and sacrifices of our loved one and honoring ourselves for the sacrifices we have made. Through this journey I have learned that “caregiving” is not just about physical care, but it is also about moral support for me, my wife and my family. And it is about making sure that the legacy of my wife and her boundless optimism don’t get lost in the day-to-day events forced upon us as we travel on this journey with her. So our situation is clearly a sad story, although it is far from unique, but it is also a positive story that demonstrates that the whole (our family, friends and organizations like the Alzheimer’s Association) is stronger than each of us individually. And this is so important because caring for a loved one is a sad and, more importantly, a lonely journey no matter how much help you have. My kids have shown me that even with all the sadness we have the ability to not just make a bad situation tolerable, but to turn it into a springboard to create positive change and positive memories. My wife and my kids are my heroes and for that I am so very lucky.

My relationship with the Alzheimer’s Association began in 2010. I was invited to attend the very first Reason to Hope luncheon in Chicago, honoring WGN Radio legend, Wally Phillips and his family. At the time, I was the General Manager of WGN-TV and attended as both a representative of the WGN/Tribune family and my own family – as my Dad, Cliff had already been diagnosed with Alzheimer’s. This Reason to Hope luncheon was where I first learned of the critical mission of the Alzheimer’s Association and how they were working to provide resources, education and hope to families affected by Alzheimer’s and dementia. I left that very first Reason to Hope luncheon newly inspired and hopeful for the future, for families like mine. I was also impressed by the overall effectiveness and efficiency of the luncheon – in just one hour, Reason to Hope had changed my view of Alzheimer’s and inspired me to become a bigger part of the mission. I knew immediately that Reason To Hope was an event and an experience that I wanted to share with others in order to do my part to help raise awareness for Alzheimer’s. In 2011, I became a Reason to Hope Table Host and invited friends and family to join me. The following year, 2012, I chaired the Reason to Hope Chicago luncheon and shared my Dad’s story with the Reason to Hope community. I have and will continue to support Reason to Hope through the years as a Table Host. Last year in 2019 and now again in 2020, I am proud to be Co-Chair of the Reason to Hope Chicago luncheon. The first time I attended Reason to Hope it was clear that I was now a part of a bigger community through the Alzheimer’s Association. Through the years I have seen Reason to Hope grow through the dedication and expanding roster of Reason to Hope Table Hosts. When our Table Hosts invite their friends, family, co-workers, colleagues – they help create and grow this community within Reason To Hope – a community that shares the common goal of a world without Alzheimer’s. In addition to Reason to Hope, I have embarked on several other endeavors as a part of my fight against Alzheimer’s. I have participated in the Walk to End Alzheimer’s in Chicago with my family in honor of my Dad and his caregivers. I also participated in the Alzheimer’s Association family forum education program, and caregiver support groups. As a representative of the Illinois Broadcasters Association I have partnered with the Alzheimer’s Association to promote the Silver Search program to protect endangered missing persons through a state wide awareness campaign. I currently serve on the Silver Search Task Force and have most recently joined Illinois Women Conquer ALZ. What gives me a reason to hope is the mission and strategy of the Alzheimer’s Association. As the world’s leading voluntary health organization, funding Alzheimer’s care, support, advocacy and research gives me HOPE! I have benefited from the Alzheimer’s Association mission, I have embraced the mission, and will continue to participate in the mission by raising awareness and funds to help achieve the goal of a world without Alzheimer’s! If you want to become a part of the fight against Alzheimer’s, join us at our virtual Reason to Hope event on Tuesday, November 10 at 12 p.m. CT! Learn about the mission of the Alzheimer’s Association and embrace the Reason to Hope community.  Or if you cannot join us this year, go online and  donate  to the Alzheimer’s Association Reason to Hope. Register for Reason to Hope #events #reasontohope #volunteer

My name is Deanne Alexander and I am an advocate for the Alzheimer’s Association. My fight to help find a cure started when my mother Jane was formally diagnosed with Alzheimer’s dementia in 2011. This was when my journey through advocacy to help find a cure for Alzheimer’s began. Volunteering as an advocate gave me the support from others who were navigating through the same difficulties as a result of the disease and the resources to help find solutions. The camaraderie between all of us was so comforting and helped me and my family get through such difficult times. The Alzheimer’s Association was a Godsend! Fundraising has always played an important part in my role in the advocacy program. Experiencing the satisfaction of hands-on activities, gives me a tangible connection to the Alzheimer’s Association. Over the years, I have hosted many fundraising events, they fuel my purpose and passion as an advocate. This year I was frustrated with the Covid-19 pandemic restricting the association’s fundraising efforts. So when my son, an EM doctor, suggested a fundraiser making masks that represented the cause, I was ecstatic! Not only would it be a service to offer these masks for fundraising, but to help protect the surrounding vulnerable population. He has worked non-stop with the horror of Covid-19 pandemic. He cares for the elderly demented population, so sick, confused and frightened, often just dumped into the ER with no outside support. Realizing the importance of the special needs of these patients, his Emergency Room is now in the process of getting Geriatric ED Accreditation. Now, getting back to the masks, I wholeheartedly jumped in! I custom ordered purple ribbon fabric, and my friend, who was already making masks, kindly offered to sew them. I wanted to add a bit of personal shine to each one, so I hand painting some of the ribbons with a splash of shiny washable purple glaze. I also had to figure out the best way to arrange for easy payment through an e-commence site. Hence, the fundraiser ‘Hope Shines On’ was conceived. The price of each mask is $15.00, this includes free shipping. There are two different purple ribbon designs and all the profits will go to the Alzheimer’s Association. ‘HOPE for the Cure’ is the light in all of us, it keeps us going when we feel helpless against this horrific disease. You would be amazed at how many people stop me when I am wearing my mask and tell me about how they are personally affected by Alzheimer’s, or asks a question about where they can find help. So, I truly HOPE you will support this fundraiser. Let’s wear our masks proudly, because every day our loved ones are suffering and we should shine bright with the HOPE that #EndAlz will become a reality. Check it out here: https://www.hopeshineson.net

Keefer Schoon began his love for music when he first picked up a guitar, about ten years ago. He was inspired by many rock artists like Jimmy Page, of Led Zeppelin and Richard Wright, of Pink Floyd. Keefer loved the sounds these artists were able to create and immediately wanted to do the same. Page is still an inspiration for him and that is noticeable throughout his album. In the past four years, Keefer became invested in composing and writing progressions on the guitar where he studies music composition at Columbia College in Chicago. Wright is who inspired him to strive for uniqueness in everything he writes and creates. Keefer and his grandmother It was around seven years ago when Keefer’s grandmother was diagnosed with Alzheimer’s. As her condition progressed, he learned more about what may occur. He was fascinated by the hallucinations part of the disease and thought about how he could express that through music. It was not until about last year that Keefer began to construct an album that would fit around the theme of hallucinations caused by Alzheimer’s. He began writing poems that expressed what a senior may go through as their condition with Alzheimer’s progresses. As Keefer educated himself more about Alzheimer’s, it inspired him to make a full-on tribute to his grandmother, Diane Keefer Stith. This album expresses the overall theme of imbalance that goes on in one’s life with Alzheimer’s. Growing up, His grandmother played the piano for him. This is where he got the inspiration for his song, “For You,” so that he is now playing for her instead. Keefer’s grandmother passed while he was finishing up the album on August 15th. His album, titled “Entropy,” is available to listen to on all platforms under the alias “DZ Riley.” This album follows the steady decline of a senior experiencing the various stages of Alzheimer’s disease. It is described to be a heart wrenching and equally beautiful experience that explores the psychological and emotional toll the disease has on those affected by it. All proceeds made from this album go towards the Alzheimer’s Association. “Entropy” album cover Follow DZ Riley on Facebook, Instagram and Twitter. Find ‘Entropy’ on Amazon Music, YouTube, iTunes, and Spotify.

On December 12, 2013, my family received the news my 59 year old mother had been diagnosed with frontotemporal dementia (FTD). It didn’t take long to search the internet and figure out how terrible this disease was and how our lives were going to change very quickly. Numbers of people, even the most educated doctors, have not heard of FTD and are not familiar with the signs and symptoms. Much like Alzheimer’s it is difficult to diagnose and can be mistaken for other illnesses or disorders. While the Alzheimer’s Association is easily identified as a resource for those living with and caring for individuals with Alzheimer’s disease (the most common form of dementia), many people do not realize their services are available to caregivers and those diagnosed with other forms of dementia. Having experienced being a caregiver firsthand, (although my dad did tenfold what I did) most people don’t realize or understand the profound impact the disease has on the person, family, caregivers and even society as a whole. Alzheimer’s and dementia are grossly understudied, under-researched, underrepresented and dare I say undervalued. For the past 5 years, that is why I’ve been Walking to End Alzheimer’s and the 46.8 million people around the world living with it and other forms of dementia. 2015 was my first year participating in the Walk to End Alzheimer’s and it won’t be the last. I’ve been walking and raising awareness ever since! This year, the walk was virtual but my sister and a few of our friends, who are the biggest supporters, walked laps in the cold rain around the courthouse in Pittsfield. While there is no cure for dementia, and it is ultimately fatal, I hope with the work the Alzheimer’s Association is doing and the awareness walk participants are bringing to the disease, there one day will be. By calling attention to the disease, I hope others become familiar with the signs, symptoms and overwhelming statistics. The company I work for, Dot Foods, became a National sponsor in 2015. The founder of Dot Foods was stricken with Alzheimer’s so it hits close to home for many employees. Each year the partnership has grown, as well as the dollars contributed by employees, at a rate of almost 30% year-over-year. Since the campaign began, Dot has been able to contribute over three quarters of a million dollars to the Alzheimer’s Association! I am proud to Walk to End Alzheimer’s.

I have been involved with the fight against Alzheimer’s Disease for a long time. Years ago when I heard there was going to be a local Alzheimer’s Association Board of Directors established in Quincy, I joined immediately. I had reason to do so. I really never shared that reason until now. It was the summer of 1983 when my world was upended with a phone call from my mother in Kansas City saying that my father was diagnosed with Alzheimer’s. It was my first encounter with the disease. Having your father’s memory fade away and living four hours away made for a difficult period in my life. My Dad’s physical status affected my mother’s well-being as well. My mother never drove a car and was completely dependent on my father. In the early stages, he would forget how to drive back home from the grocery store, a trip he made weekly for years. One day he drove the wrong way on a one-way street, and he had to discontinue driving. For several weeks after that, I would drive the four hours to Kansas City to take them to the store and help out wherever I could. I even offered to quit my job and move back home to assist, but my Mother would have no part of it. After 18 months of being his caregiver, my mother made the brave and bold decision to put him in a nursing home nearby.  She would call a cab to visit him daily. This went on until he died in 1985. It was only two years after he was diagnosed and less than 6 months since he’d moved out of the house, but it seemed like 20 years. The constant concern for his well-being took a toll on my mother, brother (who was in the Air Force) and me, as well as our families. Now, some 35 years later, one of my best friends and a former co-worker Dennis Oliver is dealing with Alzheimer’s. Having joined the Alzheimer’s Association Board in Quincy years ago and after going through what I did with my father, I could see the same symptoms in Dennis at the age of 59. I suggested that he see a doctor, but he fought the idea for the next 18 months. His quality of work began suffering from his forgetfulness and his frustration was increasing each and every day. I discussed the issue with him and his wife Lori again and he finally saw a doctor who diagnosed him with Alzheimer’s Disease. Lori, like my Mom, was dealing with his safety concerns at home and I took on the caregiver role for him at work. Eventually, he could no longer continue working as his memory was fading. As his boss, the conversations with him about ending his radio career were gut- wrenching. As his friend, they were nothing short of ripping my heart out! He really wanted to continue, but despite his fighting the idea, he knew he couldn’t. It is a burden to live with Alzheimer’s, but the real burden falls in the lap of the caregiver. The constant concern for the loved one’s well-being can have negative effects on the caregiver’s health.  They need more help than anyone realizes – unless you have been there yourself. This is why I walk to End Alzheimer’s. This is why we need everyone to help where they can to end this dreaded disease. This is why we need to assist those with the disease as well as their caregivers.  I was a part of this year’s Walk to End Alzheimer’s on September 12th in Quincy. For those who also participated that day and secured funds for the cause, Dennis Oliver and I would like to thank you for helping the hundreds of others dealing with Alzheimer’s. We can only pray that this was our final Walk to End Alzheimer’s Disease.

Walking Sticks I started walking 10 years ago. My new daughter -in-law put together a team of church members to walk since she had lost a family member to Alzheimer ’s disease and our new church was looking for some outreach areas to donate funds. Kristin was actually selected as a spokesperson to address the crowd before the walk began. As a group, our church team had met several times at our home to make walking sticks from cedar branches that my wife and I had cut. It was a good bonding experience and made for a nice presentation at the walk as ours was the team with the walking sticks. But my passion didn’t truly begin until I saw a program at my Rotary club about Alzheimer’s. Until then I just viewed it as another of those diseases that affect people in a disruptive way. But I learned that day that Alzheimer’s kills. The video we saw showed how the disease randomly ‘scrambles’ one’s brain, affecting speech and cognitive skills as we all experience. But it was startling to me to learn that it finally scrambles the autonomic nervous system that control heart and breathing which makes Alzheimer’s a killer. This brought home to me the seriousness of this disease. At that point in time, I had not had a close family member suffer from Alzheimer’s, but I started to look at those I knew and it was life changing. I’m a funeral director, so I should have better understood the disease. Oh, I most certainly understood the chaos and heartache it brought to families. I consoled many a survivor who suffered the guilt of having felt that they lost their loved one years ago, although the death was just recent. But I never knew that the disease was the actual thing that caused the death. More recently, my mother-in-law was diagnosed with Alzheimer’s. For years her husband was able to take care of her and shield her from the life altering changes that would ultimately occur. Finally, he had to put her in an excellent Alzheimer’s unit. The Coronavirus pandemic has wrought havoc on patients and families alike. My wife has not had physical contact with her mother since early March. Before that she cut her hair, painted her nails, gave her back rubs, and generally was a hands on caregiver. That has been replaced with phone calls while looking through a glass door since no physical contact is allowed. So I walk hoping there might one day be a cure that someone suffering from this disease might survive and return to a normal life. I walk to help the local chapter have funds to get the word out to inform others (like me) about what the disease actually does. And I walk because of the people I know that suffered from Alzheimer’s when I didn’t realize it was killing them. I always think especially of Allen Echternkamp, the sexton of a small rural cemetery with a steel trap mind who could tell you where a grave was or who owned a section without ever looking at a plot map. To see this great mind reduced because of this awful disease was a tragedy. We all need to do what it takes to find a cure, and that’s why I walk.

By Jeanne Rivera “You are not too tall , you are just statuesque!” This was Dad consoling me in middle school, as I shot several inches above the boys in my class. My father always knew the right thing to say, even if I wasn’t sure I wanted to be statuesque. He made me feel special and deserving, and he was always in my corner. Dad left my sister, brother, and me with so many happy memories. Growing up we went on numerous driving trips, and Dad always pretended he had a CB. He’d make the squelching noise and then speak into his cupped hand, “Breaker One Nine, Breaker One Nine, this is Batty Daddy, Over.” We would laugh, and sometimes groan. He was such a joker. And he was an avid reader. Dad read aloud to us all the time. We listened to many novels, but I most remember collections of short stories. Dad would make funny voices for the lines we loved: Mrs. Piggle Wiggle ’s Radish Cure with, “Ing e a ink of ater, Addy,” Penrod and Sam ’s, “Excuse me, but I must ‘a’ got your bumpus!” and the always popular Elephant’s Child’s, “This is too butch for be!” from Just So Stories. Dad was also very artistic. He painted pictures, made furniture, and carved wood. One of his favorite creative outlets was playing guitar. Dad taught himself to play when he was young, and he loved all types of music. He played Beatles’ songs as we kids did the dishes in the kitchen, and we sang along. He played Country & Western ballads for friends and family. As we got older, Dad played guitar with my brother, and eventually with my son. Dad wrote his own songs for different occasions, including one that celebrated my son’s favorite TV show at the time, “Alex Mack.” Over the years, Dad amassed quite a guitar collection, which he enjoyed displaying. He just always loved music! Dad started showing signs of Alzheimer’s in his mid-sixties. Mom noticed it first. Dad was always so outgoing and gregarious, the rest of us didn’t catch on right away, and Dad did not want anyone to know. But eventually it was apparent. Mom did everything she could to keep life as normal as possible. She and Dad took a couple more long driving trips over the next few years. When that was no longer feasible, Mom made sure they took walks outside, saw friends and family, and listened to lots of music. I live in Illinois, and my parents lived in Florida, where I was raised. Being so far away from my parents during this time was hard. My husband and I took our normal annual trips down to visit, but that was definitely not enough. So, with my husband’s support, I left my job and started traveling down to stay with my parents every month or so. My first thought was to use these trips to support my mother. The caretaker’s role is just incredibly hard, with so much stress and worry about doing the right thing and making the right choices. It can also be lonely. I wanted to help Mom out in any way I could by visiting her frequently. I believe my trips did help my mother. But what I didn’t expect was the absolute joy I derived from spending time with my father. I will forever cherish the memory of those visits. I stayed close, and I am incredibly grateful that I did. Even as Dad progressed through the disease, I tried to engage with him as he had always engaged with us. I took him on walks. I read him the stories we enjoyed when I was a child. I made the funny voices for Mrs. Piggle Wiggle and Penrod and Sam and Just So Stories , and Dad laughed. We listened to lots of music, and Dad snapped his fingers and tapped his toes. I sat very close and rubbed his arm and held his hand. And Dad would smile. He smiled a lot. And I did, too. Dad passed away a few years ago. I miss him very much – we all do. Mom, with some help in the house, had been able to keep Dad at home. Mom is truly incredible. She still worries if she made all the right choices, but I know Dad’s life was happy and comfortable until the very end. My hope in telling my story is that everyone will stay close to an affected loved one. It can be scary when this happens to someone you care so much about. You may subconsciously start to pull away. Don’t. Instead, get closer. Your loved one still enjoys all the activities they did prior to this happening to them, and I encourage you to continue as many of those activities as you can. You will positively impact your life just as much as the life of your loved one. Youngsters should stay close as well. Children may not understand what is happening to their loved one, and there can be a tendency to shelter our children from seeing their loved one decline. But children can help and children want to be helpful. I wrote a children’s book to share this message with as many youngsters as possible. “Grandpa Doesn’t Remember My Name” is available on Amazon. I hope my book opens dialogues about how children can help loved ones suffering from dementia. Remember, stay close!

Alzheimer’s is something we never thought would affect our family. My mother-in-law Gerry was diagnosed in 2010. While it took her memory and elements of her personality with it, her spirit remained until the very end of her life. Gerry, though my mother in law was more than that to my wife and I. When I am speaking about Gerry, our feelings for my father in law Fritzie were similar. They were our parents, friends and supporters throughout our lives. We all read articles that purport this and we say to ourselves “yeah right”, well you could ask many people and they will agree, they were special; loving, non-judgmental and fun loving. It was so easy to be with both of my wife’s parents. Respect and love was how we always interacted. When I married my wife, I gained 2 more loving and beautiful parents. They always put us first and supported all of our life’s decisions without judgement. Fritizie passed in April 2016 as a result of long term heart disease and COPD. One of the ways we believed Gerry dealt with his passing after over 50 years of marriage was to live in the past and sadly, but fortunately Alzeihmers facilitated that. The disease progressed to the point she didn’t remember she was married or at times who we were. However most of the time she kept her fun loving spirit and sense of humor. We have no regrets, we were able to care for both Fritize and Gerry in their home with the aid of a caregiver and in our home with the love and patience they showed us for over 30 years. We moved Gerry to a local facility when her disease could not be managed safely in our home. She passed in hospice, in our living room in October 2017. We are learning so much about the etiology of Alzheimer’s and so many other diseases. I am now a Food For Life instructor, have my own teaching company (www.letseatgreat.com) and am licensed by PCRM (www.pcrm.org). I teach people the benefits of a whole food plant-based diet. A vegan diet shows promising outcomes in reducing the development of Alzheimer’s according to studies published in journals such as the American Journal of Clinical Nutrition and The Journal of Nutrition, Health & Aging. My hope is that I can help some people and their families and spare them from the ravages of this disease.

I have written some variation of this story several times over the past 5 years. I feel that I have written this with a diminishing sense of naivete with each iteration. I so desperately wish that were not the case. Joining the Walk was my sister Karen’s idea. She was the original Team Captain for team FourFran. It consists of Karen, myself, my younger sister Susan, and my brother Patrick at its core. Our mother, Frances Brower was diagnosed with Alzheimer’s back in 2011. I think. We had been trying to get her to see a neurologist for a few years, so I am not exactly sure on the start of this timeline. We just knew that Mom’s decline had become very noticeable. Frances Brower was then center of her family’s universe. She had a very strong sense of family that had us all around on any excuse to gather. We were always to be at her house. Birthdays holidays, Sundays. Whatever. She would cook and we would show up and eat. She came from a large Italian family, and that is what you did. We never thought about what we were doing for any holiday. We were going to mom & dads. No discussion. You just knew you had to be there. But now, we had to start taking parts of these gatherings from her. She would become confused, forget what she was doing, or what she had done, and then just go to sleep. She would wake up with very little recollection of what had transpired before she slept. We pushed for her to see someone. She resisted. When she finally relented, she lied to us about what was discovered. Then forgetting that she didn’t want to know, she told some of us, and got mad when she then “discovered” we knew. This was the new reality with which we would now prepare to live out with her. In January of 2013, our father suffered a major stroke. He came through, but not at 100% of where he used to be. He can still drive and get around, but it became clear to us that the house was too much for them both and he could no longer look after her as he had planned. We had to sell the house and move them into an assisted living facility. Our world had shifted again. We would still go see them every Sunday, but by 2015 mom was in a memory care facility and dad was on his own for the first time in forever. The center of our universe was fractured. Not really understanding how to support mom anymore, Karen saw a sign for the Walk to End Alzheimer’s in mom’s building and thought we should sign up for it. As a whole, we hate fundraising. We are not comfortable putting our hands out and asking for money. But this was for mom. We decide that the Naperville Walk was the best location (we live in Bolingbrook, Westmont, Crestwood and Chicago). We found ourselves doing things we never thought we would do, to get money. We also started educating ourselves more on the disease. The more we learned how badly this would end, the more determined we were to get as much money as we could. We told everyone this would be a one-time thing. It was emotionally draining. We were uncomfortable learning about what awaited mom (and us). We were uncomfortable trying to raise more money. But we did it. We ended up being the top fund-raising team that year. The following year, true to our word, we did not return to the walk. We were also busy trying to get mom into a facility that excepted Medicaid and then find housing assistance for dad, because we had burned through all their savings at private pay facilities over the past 3 years (ask me sometime about having to move them several times – it’s too much to go into here). We got mom into a nursing home and spent 19 months getting her approved for Medicaid (that is also too much to get into here). It was during this time that I decided I needed to do more. Not just for mom, but everyone’s “mom.” I cannot adequately express my anger at how Alzheimer’s takes away someone’s life while they are still living it. We watched mom get further away while she was right in front of us. So, I told my brother and sisters that I was joining the walk again. Even though we told family and friends we would not keep asking them for money, I didn’t know anything else as effective as fundraising, so I broke my promise and signed up. My family followed. And they have followed every year since. Last year I volunteered on the Walk Committee. I worked outside my comfort zone. Again, this was not just for our mom. We knew that nothing we would do could bring her back from where she had progressed in this disease. We hated how this made us feel. We were saddened by the vacant look in mom’s eyes when we called her mom. After a while she stopped responding to “mom” and would only turn our way if we called her Frances. Still, we sat with her every Sunday like always. But now she couldn’t talk. Worse, she could not sing. She had loved to sing. We would play music and sometimes it seemed like she didn’t even know that anymore. She could not walk or function on her own anymore. She just sat there, staring at the TV. And we kept raising money. Year after year. Because we cannot bear to see other families go through this. It hurts. And then it hurt worse. This year I was serving as the Co-Chair for the Naperville Walk to End Alzheimer’s. In mid-March, the world shut down. We were cut off from our mother. No more Sunday visits. The infection rate at her nursing home kept rising. Then the death rate. But mom was hanging in. Updates were sporadic, but all were positive. I got a call around 5PM on Friday May 29th. We could come and see mom. I was elated. We were being allowed to visit again. That joy was short lived. I misunderstood the nature of the call. They were telling me to gather the family and they would let us in for a short visit to say goodbye. She had taken a turn and there was no telling how much time she had left. I had not seen my mother in 10 weeks. My siblings and our father gathered in her room. We were temperature checked, masked, gowned and gloved. We were not supposed to have more than two in at a time, but you could not keep us out. If this was it, we would meet it the same way we met every obstacle this journey threw at us, as a family. We were able to visit for two hours and once we left, that was it. We would not be allowed back in. Shortly before noon on May 30th, all alone in a room, mom gave up her fight against Alzheimer’s. Now our fight continues. This was as terrible an ending to her life that I could have imagined. We still have not been able to have a full memorial service for her. I feel like I have failed in giving my mom the closure she deserved. I cannot allow this failure to happen to others. My anger had taken a back seat to sadness, but the anger did not go away. Mom deserved better. Everyone afflicted with Alzheimer’s and dementia deserves better. We thought we had prepared for where this disease would bring us. We had not counted on it happening during a pandemic. It just seems so unnecessarily mean to have this hurt so many people so much more. My family has represented the yellow flower for four walks. Now we hold the purple flower. We want to be here when someone finally raises that white flower. Then we will know that not everyone has to go down this same path. Then we can show others that we do not just offer kindness, caring and understanding. We want to be there when we can offer hope. These walks raise awareness in our communities. More awareness helps us raise more money. More money provides for more care, for those afflicted and help for those who care for the afflicted. More money funds education for caregivers and the general public. Education brings understanding. Understanding aids research for a cure, which requires more fundraising. That research will bring us to the day that the white flower goes from dream to reality. This is why we walk. – George W Brower 2020 Naperville Walk to End Alzheimer’s Co-Chair FourFran Team Captain