Granddaughter runs to fight Alzheimer’s

By Rachel Ford, Attorney at Law, Alz Stars Team member

Alzheimer’s Disease didn’t burst its way into my life. It didn’t cause a huge scene when I was first impacted by it. It walked, slowly. But, as we all know, even the slow and steady turtle can make it miles and miles down the road.

My grandad, my mom’s father, was diagnosed with Alzheimer’s in 2012. Alzheimer’s took him slowly. At first, he would mix up people’s names (but what 80-year-old doesn’t?). Then, he walked into the wrong house while visiting my family and me. He then forgot people with whom I’d been friends 20-plus years. Finally, he forgot me and my family. Alzheimer’s took him in March of 2022, and he was the same easygoing gentleman he had always been until the very end.

My gran, my mom’s mother, was diagnosed with Alzheimer’s in 2021. She had taken care of her husband with Alzheimer’s for almost 10 years prior to her diagnosis, so it seemed incredibly unfair she had to deal with this terrible disease, too. The isolation of the COVID-19 pandemic seemed to speed up her memory loss compared to my grandad. She still remembers my family and me on our weekly Zoom call, but she already forgets my friends she has known for decades. She isn’t as easy to deal with as my grandad was; she calls her banks so many times they think she’s fraudulent and freeze her accounts. My mom, her power of attorney, has spent hours on the phone with my gran’s banks, unfreezing her accounts.

My family lives 12 hours away from my grandparents; we live near St. Louis, Missouri, and my grandparents live near Hamilton, Ontario, Canada. Even with the distance, my grandparents were a constant in my life. Up until 2015, my grandparents made the 12-hour drive to visit my family at least twice a year for around a month per visit. From around 2015 to the start of
the COVID-19 pandemic, my gran would come by herself. My grandparents didn’t miss my brother’s or my high school graduations. My gran was able to come for both my brother’s and my college graduations. I graduated law school in May 2022, and my gran wasn’t able to make the trip. It was my first graduation without either of my grandparents. I know both she and my grandad would have been there if they could have, beaming with pride in the stands. The distance between us makes it hard, but even now we make it up to visit my gran at least twice a year.

Alzheimer’s Disease takes those moments away. It slowly creeps along, stealing memories from us and its victims as time passes on. I have dedicated running my first marathon to funding research for a cure to Alzheimer’s disease. I may be slow and steady, like the way Alzheimer’s took my grandad, or I may be unexpectedly fast, like the way Alzheimer’s is taking my gran. Either way, I am grateful to be able to run and make a small difference in our hopes to find a cure.

If you would like to support Rachel in her marathon, go to: http://act.alz.org/goto/RachRuns4ALZ

Black History Month Spotlight: Jeanette Jordan

“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!”

Black History Month: Dr. Lisa Barnes

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.

Black History Month Spotlight: Ray Willis

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!

From grief to action: one daughter’s path to Paint the Night Purple

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

A daughter reflects on the missed signs of her father’s Alzheimer’s

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.

Alzheimer’s steals opportunity for “fatherhood” conversations with dad

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