Month: January 2023

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