National Family Caregivers Month: Verda’s Story

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. We want to honor the 15 million family and friends currently providing care for someone living with Alzheimer’s disease in the United States, including the nearly 590,000 Alzheimer’s caregivers right here in Illinois. In this article, we feature Verda Gochee, who is a caregiver for her husband who was recently diagnosed with the disease. 

“I am a caregiver for my 59-year-old husband, Darren, who was diagnosed with Alzheimer’s Disease two years ago.  I retired from my office job at that time because the neuropsychologist that diagnosed his condition felt he needed 24/7 care. The closest “adult day care” facility to our house was 15 miles away, and in the opposite direction of my job.  I didn’t feel leaving him home alone as viable as we were getting scam phone calls from the “IRS” on a regular basis. I could not be sure he would not give our credit card or bank information to a scammer or let a “bad” person into our house.  I had originally planned to work until at least age 70, but ended up retiring at 65.

We live with our 25-year-old son in rural DeKalb County in a century-old farmhouse that my husband’s family has owned for more than 100 years.  Our son is the 6th generation to live in that house.  We added a first-floor bedroom, bathroom with a shower, laundry and attached garage with an inside ramp to the house last year with the hopes of keeping my husband at home, where he would like to stay as long as possible. 

Darren is usually awake by 2 a.m. every day and wanting to see if the newspaper had been delivered yet.  He still looks at the paper but does not really comprehend as much of the information as he used to.  He is able to dress and shower by himself but, I can see him getting more anxious about these activities.  His day revolves around getting the newspaper, which is delivered at about 4:00 a.m. and the mail, which is delivered about 2:00 p.m. He has lost most of his concept of time, so he is frequently asking if it is time to get the newspaper or the mail.

We have an elderly dog that we frequently take for walks, sometimes both of us and sometimes by ourselves.  We generally shop for groceries once a week and sometimes just go for a drive. We play “Sequence” most evenings.  Sequence is a board game played with two decks of playing cards. He usually matches the correct number and color, black or red, but often mixes up the suits, club for spade or heart for diamond.  Darren does fairly well when playing Mexican Train dominos with a small group of family. The Mexican Train dominos not only have spots but the spots are color coded to make it easier to match the number.  We play dominos with all train lines open. I try to do Suduko and Celebrity Decipher from the newspaper daily.  I read magazines but have found I fall asleep too easily to read novels anymore.

Currently, I am managing the caregiving responsibilities without hired help.  When help becomes necessary, I’m afraid it is going to be difficult to keep paid help, especially in the wintertime because of our rural location.  The probability of being able to keep him at home through the course of this disease now seems very slim.  It will cost several thousand dollars a month to place him in a long-term care facility plus maintain our home. Our savings, which seemed like an adequate nest egg a few years ago, now seems to be waving goodbye as it will disappear quickly when Darren has to be placed in a care facility.”

Music Uplifts in the Fight Against Alzheimer’s

17-year old Hinsdale Central High School Senior Arya Chawla tells us why she participates in Team Up.

“I wanted to collaborate with my peers and other student leaders to create more awareness for Alzheimer’s disease, and also help in the Association’s fundraising initiatives. It was important for me to make a difference in our communities. My grandfather has been suffering from Alzheimer’s disease for the past 5 years. I was very close to him, as he lived with us throughout my childhood. Now my grandfather lives in India and does not even recognize me or my family when we visit him. His condition has been very devastating for my family. I led a fundraising event called Music Uplifts. This was a music concert where I solicited over 10 professional musicians to perform music to benefit the Alzheimer’s Association. I also worked with the Association to present an education session about Alzheimer’s Association during the concert. It was a well-attended event, and we raised over $3,000 for the Alzheimer’s Association. It is important for our youth to get involved in their communities, and to share their own experiences about Alzheimer’s disease.

Alzheimer’s is not just an “old people’s” disease. It affects the entire family in significant ways. Organizing the fundraising event definitely required time, effort, planning, organization, confidence, and leadership. I learned a lot throughout the process and gained valuable experience. Working with Team Up has been an amazing, positive experience for me. I learned so much about Alzheimer’s and the Association’s efforts to create more awareness for this disease, and solicit more support for its families. It was also great to collaborate with other students from the Chicagoland area to discuss everyone’s ideas for raising awareness in our communities, and for hosting fundraising activities. Finally, I also learned more about the costs associated with Alzheimer’s on our healthcare infrastructure. The Association was very helpful in providing many resources for me to learn about these costs. I also enjoyed learning about Alzheimer’s-related policy initiatives when I met with Congressman Roskam. All of this is a great experience as I aspire to study Public Policy in college next year. “

Team Up is a student-focused fundraiser designed to promote brain health, spread awareness and raise funds through student-coordinated events or activities. It is flexible enough to be an on-going effort or a one-time occurrence and aims to motivate young people to get involved in the fight against Alzheimer’s disease.

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For more on Arya’s Music Uplifts program:

TEAMing UP for a Cure

The Alzheimer’s Association® Illinois Chapter invites you to Team Up Against Alzheimer’s. This is a student-focused fundraiser designed to promote brain health, spread awareness and raise funds through student-coordinated events or activities. It is flexible enough to be an ongoing effort or a one-time occurrence and aims to motivate young people to get involved in the fight against Alzheimer’s disease.

Fenwick High School Senior Jamie McCarthy shares her story.

“Team Up is a small group of like-minded teens that put together their own annual fundraisers and volunteer within the association. We are all driven, innovative kids with the common goal of ending Alzheimer’s.

When I was a freshman, my mom was diagnosed with early-onset Alzheimer’s. Though it has been painful, this has pushed me to do as much as I can to raise money for a cure.

I host an annual fundraiser with my hockey team called “Shoot Down Alzheimer’s.’ We do a bake sale, raffle, and play a charity game with all benefits going to the Alzheimer’s Association. We have been very successful, raising nearly $20,000 in just two years.

Starting this fundraiser and spearheading the operation as a teenager has put me at an advantage against others my age. I have learned so much about myself and management, and I feel very prepared for a career. This benefits both the Team Up members ourselves and the cure to Alzheimer’s.

It takes dedication, intellect, and passion to start your own fundraiser. While it requires a lot of work to hold a successful event, people are always willing to help. With the appropriate qualities and support, starting a Team Up event is something any teen can do.

Overall, I think that Team Up has provided me with invaluable life skills and opportunities. Knowing that I am making a difference in people’s lives leaves a good taste in my mouth after each year of the fundraiser. My life would not be the same without it.”

                                                            –  Jamie McCarthy, Fenwick High School

To create your own Team Up Fundraiser,


Alzheimer’s Association National Early-Stage Advisor: Tom Doyle

Tom Doyle was diagnosed with Alzheimer’s disease and secondary Parkinsonism in 2016 at age 63.

Tom completed degrees in education and counseling from Concordia University and the State University of New York at Brockport, and later received his Doctorate from Northern Illinois University while he worked as a principal of a Lutheran school in the Chicago area.

After receiving his Doctorate, Tom moved to California where he served as a professor of education at Concordia University Irvine and National University Los Angeles until the disease prompted his early retirement. Tom has three children from a previous marriage and four grandchildren. Fourteen years ago he met and married his husband, Levi.

During his final years as a college professor, Tom began experiencing challenges preparing and delivering the coursework to his students. Despite teaching the same courses for decades, Tom was forgetting details, struggling to find words, and losing his train of thought during lectures. His student evaluations reflected a change; after years of high marks, his feedback began to suffer.

Tom began to remove himself from university committees and workgroups, due to feelings of anxiety and inadequacy. During this time Tom was seeing a psychologist, who eventually raised his own concerns about Tom’s repetition and word loss. The psychologist suggested that Tom may have a “cognitive impairment,” and encouraged him to see a specialist.

At home, Levi observed that Tom was forgetting items around the house and would frequently repeat the same stories or questions. Initially, Levi thought that Tom was just becoming more forgetful, but assumed if Tom was still working he must be OK. Only later, did Levi discover the extent of Tom’s difficulties at work.

In 2015, Tom was diagnosed with Parkinson’s and dementia. A year later after further cognitive testing and spinal tap his diagnosis was changed to Lewy body dementia, and eventually to Alzheimer’s.

Following his diagnosis, Tom says he entered a state of “extreme anxiety and depression, a downward spiral” which was exacerbated by the sudden loss of his job. On the very same day Tom disclosed his diagnosis to school administrators, he was told he did not have to come in again. He remembers: “One day I was employed and the next day I was retired and on disability.”

Tom credits ongoing therapy and strong support from his family and neurologist as critical coping mechanisms in the months following his diagnosis. His neurologist referred him to the Alzheimer’s Association, and Tom began attending a younger-onset support group. Soon, he was invited by his local chapter to share his story through media interviews and speeches.

Today, Tom and Levi are navigating the disease together. They have moved to a smaller apartment to be closer to Tom’s doctor. Tom has recently relinquished cooking duties and mourns the loss of life-long hobbies such as reading and researching. He still enjoys dinners with friends, church events, and work around the house. He and Levi recently welcomed a third member of the family — a therapy Basset Hound named Ellie May. “We take care of each other,” Tom says.

As a member of the Alzheimer’s Association 2018-2019 National Early-Stage Advisory Group, Tom wants to be seen as “an individual who has the disease but is not defined by the disease.” He hopes to raise awareness that that people living with Alzheimer’s and other dementias are productive and vibrant, with full lives. He also wants to stress the benefit of early detection and diagnosis.

“It’s important when you’re facing cognitive issues that you keep pushing for answers, so you know what you are dealing with,” Tom says.

Tom and his husband Levi live in Schaumburg, IL.

Why I Run with ALZ Stars

For as long as I have known Allison, her mother has had Alzheimer’s. When Allison and I first started dating, talking about her mother’s struggle with Alzheimer’s was a challenge. Accepting that your relationship with your mother and your best friend will never be the same because of this disease is an incredibly difficult thing to do, let alone talk about. What I have heard are countless stories about a mother who did everything she possibly could for her children, and I wish I could have known my mother-in-law in the way she has been described to me over the years.

After a few years of learning more about the disease and attending the Alzheimer’s Walks in Chicago, I began to realize that so many other families are impacted in a similar way. Allison, her siblings and her father are not the only ones struggling to articulate what they feel every single day. Inspired by so many others showing strength, Allison decided to write the story of her family’s battle with the hope of increasing awareness of others. So many people may not understand the struggles ahead when they first hear the news, and I can only hope they can find a similarly incredible support system.

This year, I am running the Chicago Marathon for my mother-in-law Pam, my wife Allison, my father-in-law Ted, Pam’s siblings, and the rest of Allison’s family. The strength and support the family shows each and every day is certainly more impressive than any marathon. I would like to support the family by running to raise money for the foundation determined to find a cure. Below is the story Allison wrote about her and her family’s experience with Alzheimer’s – it is a powerful story that we can only hope brings awareness to those that will, unfortunately, have similar challenges ahead.

– Tony DiLiberto


To preface this, I’ve avoided putting “my story” into writing for a while. It is very difficult to look back on the last decade starting with the days when we first noticed minor changes in my mom all the way to today when she cannot even articulate what she is thinking or how she is feeling. The last decade has been filled with so many emotions – joy, pain, guilt, and grief. Alzheimer’s elicits so many emotions in those affected by the disease, and I found it arduous to express those emotions here.

My mom and I were always very close. She was my best friend. I told her everything, which I thought was unique for a mother-daughter relationship, especially throughout high school and college. We spent so much time together, including many high school and college weekend nights at home watching old Harrison Ford movies and consuming copious amounts of ice cream. I felt fortunate that we had such a strong bond and that we had the opportunity to enjoy each other’s company as often as we did. While I was away at college, we talked on the phone constantly, averaging three times a day (thank goodness for mobile to mobile minutes). Illinois was only a quick 90-minute drive from Springfield, so she would come over for lunch or dinner and I’d come home frequently.

I remember vividly the moment I found out she had Alzheimer’s, which I just recently learned was quite a while after she was diagnosed. Apparently, our parents thought it was best not to burden us with the diagnosis until they received a second opinion.

I was a junior at the University of Illinois, and my parents and Julia were coming to Champaign for a late fall football game. Genevieve was a freshman at Illinois, so we were all going to spend the day together. Mom had been occasionally forgetting things for a little while at this point, but I had chalked it up to trying to keep up with six adult children and their chaotic lives while balancing her and my dad’s life together. Mom was also struggling with her parents’ declining health, which I know can certainly be distracting. Like I said before, we talked often, but I don’t remember ever thinking something was actually wrong with her. I figured the forgetfulness and confusion was just stress. She was seeing doctors to try and diagnose the cause of the memory issues, but at the time, it just didn’t seem serious. Just before they came to Champaign that day, I remember calling my mom and asking her for an update on her doctor appointments, and she said something along the lines of “Oh I’m fine! There’s nothing wrong with me!”

So back to that fall day in Champaign in 2009. My mom went to meet her uncle who happened to be in town, so dad, G, J and I went to Atlanta Bread for lunch. I remember exactly which table we sat at and where each of us were sitting like it was yesterday. He asked if we had talked to mom recently. I said that I had and she said she was fine, nothing was wrong. His face dropped. He looked at us all with his eyes full of sadness and said “she’s not fine. She has Alzheimer’s.”

To be honest, I was shocked but I had no idea what was coming. I had heard of Alzheimer’s in older people, including my mom’s mom and my mom’s grandmother, but I had never heard of anyone getting the disease so early in life. My mom was 54. I had no sense of how it would change her life, my dad’s life or my life. I naively thought if she had Alzheimer’s right now and she could still be my best friend, how much could things change?

Over the next few years, I took every chance I could to spend time with her. I went home often, and she traveled with me to golf tournaments where we would spend hours walking around the course together. I finished my college classes in December of 2010 and spent the following six months studying and sitting for the CPA exam. Because I was done with classes, I was able to go back to Springfield for weeks at a time to study and spend time with my parents. I’ll never forget being holed up in my childhood bedroom studying for hours on end and having my mom come in to make sure I was still alive and to bring me Swedish Fish study snacks. She was so good to me.

I had accepted a job with PwC in West Palm Beach in early 2010, soon after I found out my mom had been diagnosed. At the time it seemed completely reasonable that she would fly down to see me often. Unfortunately, that wasn’t the case when it came time for me to make the move in June of 2011. She was getting confused much more often, lost in Springfield where she had lived for over 20 years, and struggling with tasks like reading and writing. It was so hard to leave her, my best friend and my rock, at such a difficult time in her life.

We continued to talk on the phone frequently and FaceTime while I lived in Florida, but it wasn’t the same as being so far from her. I felt helpless and frustrated that she was declining while I was so far away. I wanted things to stay the same, so I grasped at memories and traditions. One very special tradition was Christmas shopping in Chicago. I remember taking the train up from Springfield as a child with my mom, aunt, sisters and cousin Caroline on a Saturday in December to check out the Marshall Field’s windows and the decorations in the Walnut Room. After a few months in Florida, I was really struggling with the distance between us, so I asked if she and my aunt would meet me in Chicago that Christmas season to revive the tradition. They graciously agreed, and we rendezvoused at the Walnut Room in Chicago in December of 2011. I had done a lot of thinking about my mom leading up to that visit, and when I saw how much she had changed during that trip, I realized I needed to come back to the Midwest to be closer to her.

I moved back to the Midwest in April of 2012, and she was no longer able to do many of the things that she could before I left. She couldn’t write and she couldn’t drive, but she still had a great sense of humor and she could live in the moment while we were together. She and my dad came to Chicago to help me move into my first apartment, but I quickly learned how different she was. She was losing her motor skills, and she kept forgetting the tasks we asked her to do. I will never forget asking her to put the shower curtain on the shower hooks, what I thought to be a very simple task. It was painful watching her struggle as she tried, failed and finally gave up feeling very defeated.

I am so grateful for the time I have had with my mom since I moved back. Being within driving distance has made seeing her so much easier logistically but admittedly no visit is ever actually easy. As much as I want to just sit and enjoy time with my mother, the visits are often filled with anxiety and sadness. Not only have I lost the relationship with my best friend but I struggle to even communicate with her on the most basic level. I want to talk to her about her day when I call, but now she cannot even form a coherent sentence. Occasionally she’ll say words but mostly she just says syllables and gibberish. It is so upsetting to call, but I know that even though she may not be able to say it, she is glad we do.

My family and I are so fortunate and thankful to have our father caring for our mother. He is patient, kind and truly the most genuine person I have ever met. He honors the vow he made to my mother to stand by her side in sickness and in health. We are able to see her as often as we do because he makes the effort to bring her to every event, however, challenging it may be. I cannot articulate how much I admire my father’s strength over the last eight years. As hard as it has been to slowly and painfully lose a parent, I cannot fathom how horrible it is to not only watch the love of your life slowly deteriorate but to provide the care for that person day in and day out. It is heartbreaking that my parents spent the last 30 years together raising their children, and rather than enjoying their time just the two of them now, they are both dealing with the effects of this terrible disease.

As thankful as I am for the time my mother and I have had together, I am angry that I have been robbed of my relationship with her and future mother-daughter experiences. I am so happy my mom was at my wedding, but I know she will not remember it. She looked absolutely stunning, but I could see the agony in her eyes throughout the day. I am sad that my husband never knew her as I knew her and that my future children will never get to know their Nanabelle. It pains me to know that my younger sisters had even less time with our mother and that she will miss some of the most memorable moments of their lives. It hurts to watch my older siblings explain to their kids why their Nanabelle doesn’t make sense when she speaks and why she isn’t like their other grandmas. This disease has affected us all differently, but it has brought us all so much closer together.

I find it challenging to put words together to accurately illustrate what a vibrant, loyal, caring and fun loving woman my mom was. I worry I’m forgetting happy memories of her and how she used to be. I struggle to articulate how the last eight years have unfolded – I think in part because I have subconsciously blocked out painful memories so that I don’t have to keep reliving them. Unfortunately, even if I try to suppress sad memories, my family and I are forced to relive this nightmare every time we see our mom, talk to our dad or spend time all together. We cannot get away from this degenerative disease – it permeates through every aspect of our lives and we are constantly reminded of how hard daily life is for both our mother and our father.

I have spent so much time thinking about what I can do to help my mom and this fight, but I constantly feel like I come up short. This Walk provides a special opportunity to share my story to encourage support of those living with or caring for someone with Alzheimer’s. Every dollar raised and every person informed incrementally increases the possibility of a cure.

My story is just one of so many, but I hope this has given you some insight into how Alzheimer’s has affected my family and has inspired you to join our fight.

Why I Walk… Joe’s Story

By: Joe Dulin

Answering the question, “Why I Walk” is easy.  I walk because I miss my dad and lost him way too soon.  This is my experience.  I miss my dad.  I miss him a lot.  I can’t really recall the exact time that he left us, but I would guess it was a year or two ago.  It was very slow and painful to watch.  It started with just general confusion, grew to forget the right words, and ended with almost an inability to communicate.  The real painful part is that it was his mind that slowly left us, not his body.  His body is still with us.  If you saw him today, you would accuse me of being insensitive or over exaggerating his condition.  He appears to be a fairly healthy 62-year-old but that is only the appearance.  You see, my dad was diagnosed with Early Onset-Alzheimer’s in his early 50’s and his brain has deteriorated to the point he can barely form sentences. Now, his personality hardly exists, and the father I once adored is gone.  His story is a tragic one but needs to be shared to raise awareness for the disease in hopes of finding a cure one day.

My dad was a tremendous athlete.  He played high school football, basketball and ran track.  He went on to play college football at William Penn which is a small NAIA School in Iowa.  He had an incredibly successful career at William Penn.  He was all-conference for two seasons and in 1976, he was named an All American.  In 2009, he was inducted into William Penn’s Hall of Fame.  He married my mom in 1976.  After college, he went on to become a very successful teacher and coach.  He coached football, track and cross country for many years.  In addition, he taught Driver’s Education, Physical Education and Health.  He also went back to school and got his Master’s Degree.

Everything was going great for my mom and dad.  They generously put my brother and me through college, and couldn’t wait for the day that where they could retire and spend the rest of their lives enjoying each other and the things they loved to do.  Unfortunately, their love story does not have a happy ending.  The love they had for each other actually makes it that more tragic, yet incredibly beautiful.  It was sometime in 2009 when we started to notice something was just not right with my dad.  He would misplace his keys or forget plans.  These were small things, but they were noticeable.  He seemed very stressed and depressed about teaching.  This was shocking as teaching and coaching had always been his passion.  At first, we thought it was depression.  Some of his best friends and colleagues had retired and he still had two full years to go.  He went and saw a doctor and at first, they thought it had something to do with depression or a lack of some vitamin in his system.  Things kept getting worst.  I remember going down to his classroom and it was unorganized and chaotic.  That was when I realized how serious it was.  I recall telling my mom that she needed to approach the school and have a discussion.  Something was seriously wrong with him.

She contacted the school and explained the situation.  They put him on administrative leave and referred him to a specialist.  (One of the few things they did right.)  We went and saw the neurologist and that was when our world came crumbling down.  It started with a diagnosis of Mild Cognitive Impairment.  That was their way of sugar coating the actual diagnosis, Early-Onset Alzheimer’s Disease.  We asked ourselves how that could possibly be true; He was only 54 years old.  The doctor was very nice and explained everything to us and what this meant for the future.  From not being able to ever work again to the harsh reality that there is no cure for Alzheimer’s disease.  Looking back, we had no idea what we were in store for.  So we get a slow death sentence diagnosis and my mom and dad delivered the news to the school.  They had very little compassion for a man who devoted his life to helping students and had always made the school a priority.  They thought we were trying to scam the system and to this day it breaks my heart how they treated him and my mother.  It shows a complete lack of understanding of the disease and human resource skills.  His bosses whom he had spent many years working for and grew to be close friends with now distanced themselves from him.   He was essentially accused of him of faking his memory problems.  The school was the one who chose that doctor in the first place and then had the nerve to question the diagnosis.  They wanted a second opinion.  We were fine with that because we would have sought one regardless.  They choose another doctor who gave us the same unfortunate, terrible news.  Comically, the school still didn’t believe my dad or two neurologists and wanted us to see another doctor.  We did.  Same conclusion.  Same devastation.

Not only did we get terrible news, but we were also treated like we were scam artists.  He was not allowed to return to work.  We had no calls from the school seeing how he was doing.  No one checked with my mom to see how she was coping with this all.  He taught there for over 25 years and he was sent home one day and they acted like he was an inconvenience.  When someone gets diagnosed with cancer, the school rallies around them.  They throw a benefit, they pray for them, they show compassion.  As it turns out, a diagnosis of Alzheimer’s disease doesn’t quite get the same treatment.

Let me paint you the full picture of the person they thought was trying to scam the system to get out of work:  My dad was a great a man and an incredible father.  He loved teaching my brother and me how to play sports, was patient with us when we failed and always encouraged us to do what made us happy.  I never felt pressured to do this or that, it was just unconditional love and support.  He taught me to work hard but always have a positive attitude.  He instilled in me a level of confidence that I carry inside myself to this day.  There is no limit to my potential.  That is what he believed in and that is the legacy I work for every day.

It is very easy for me to identify his very best quality and what I admired the most about my father.  It was the love he had for my mom.  They met when they were very little.  They attended first communion class in the second grade together.  In high school, they began dating and by college, they were married.  A few months ago I came across a card my dad gave my mom years prior, he wrote:  “Karen, I love you with all my heart.  Each day I thank God for you and the boys.  There is a reason our paths crossed, it was for you to make me a better person and father.  I don’t tell you enough what a wonderful person and a great wife you have been.  I love you each and every day with all of my soul.  Thank you.  Love, Jim.”   The letter speaks perfectly to the love that he had for her.  I have never once in my life heard my dad yell at my mom or catch them fight about a single thing.  He would let her sleep in on Sundays, while he took my brother and me to church.  I am not sure how to even describe how happy she made him as words don’t do that sort of emotion proper justice.

The love my mom had for my dad is incredibly rare.  The only blessing to come out of this nightmare of a disease is to witness unconditional love at its very core.  My mom has been with my father every step of this terrible journey.  From the initial diagnosis to the late stages we are currently experiencing.  She has watched the man of her dreams turn into someone my dad would despise.  He can be mean, unforgiving, rude, nasty, stubborn and unloving.  Throughout it all though, she has never given up on him or lost her patience.  She takes care of all of his issues that I won’t detail as I think the man my father was, deserves that respect and dignity and also because I think it would break everyone’s heart.  Trust me when I say that my mom is an incredible person who has shown incredible strength and courage throughout this whole ordeal and the thing that keeps her going is her love for my dad and the bond they both share.  It speaks to how great of a man he was to see her stick by his side.  They truly meant it when they said: “to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, till death us do part.”  This year, on my parent’s anniversary, my mother posted a photo from her wedding with a simple caption, “I will remember for the both of us.”

Alzheimer’s disease is a nightmare.  It steals your mind before your body is ready to go.  It erases your memories and eliminates your ability to say goodbye to the ones you love.  It takes your personality and replaces it with someone who doesn’t understand empathy or love.  The only cure for Alzheimer’s disease is death.  There is no medicine to slow it down and at the present time, if you’re diagnosed with it, it isn’t if you will die, but when you will die and the hell you put your family and friends through while it happens.

I never could have imagined how hard it would be to be a caregiver.  Granted I (and my brother) do about half of what my mother does, but it is a constant struggle.  From continuous attention and care and lack of sleep to angry stubbornness on a daily basis; it takes a physical and mental toll on you.  Alzheimer’s disease adds an additional element, you slowly watch the person lose their mind, forget who you are, while they lose their complete identity.  You do what you can to help them maintain some dignity and you try to be patient, but it is something you struggle with every day.

It wasn’t hard writing about how great of man my father was or even acknowledging that the man I once knew is gone.  The hard part to type and admit is how embarrassed I am that I felt the need to keep it a secret for so long, I let pride keep me from admitting the struggle I was going through and asking for help.  I should have taken a stand long ago to advocate for a cure and raise awareness of the disease.

If I had worked to raise awareness nine years ago and worked to raise money, would we be closer to a cure?  Would the right medical research have been funded that may have found the needle in the haystack?  Could it have prolonged my father’s mental life or made the late stages easier?  Would more awareness of the disease have changed how my dad was treated?  All the questions I struggle with and ask myself every day.  I think a lot about how the school treated my father.  I struggle with forgiveness and letting it go.  I want to think their treatment of him wasn’t out of malice or spite, but rather an ignorance of the disease.

This is why awareness is so important.  It took me many years to finally figure that out.

My father was my biggest fan and was incredibly proud of the person I was and knew I would achieve great things.  My father taught me that I can do anything I set my mind to.  Well, my mind is now set on raising funds for Alzheimer’s awareness to help families and caregivers who struggle with this disease.  My mind is set to work with all of the other people who showed courage long before me to stand up to this disease.

My dad is leaving this world with a legacy of being a great man, a great teacher, a great husband, and a great father.  He taught me to work hard, be loyal, keep your head up, be positive, make a difference. Sometimes things don’t come easy but that doesn’t mean you give up or empower negativity.  I work to carry on his legacy and leave this world a better place.  I hope the sharing of my experience can shed some light on what being a caregiver is like and offer some comfort to others going through similar things. Life isn’t fair to anyone.  My dad taught me to be nice, respectful, forgiving and understanding.  That is how my dad lived his life and the legacy he left. I hope to carry on that legacy with how I live my life.  I know my dad would be proud of the person I am.

With the help of some great friends, we are participating in the “Walk to End Alzheimer’s” fundraiser on October 13th.  The Alzheimer’s Association raises money to provide care and support to all those facing the disease, drives research towards a treatment, prevention and a cure and speaks up for the rights and needs of people with the disease.  Our team name is “You’re killin me Alz.”  This is a play on a reference from a great sports movie, The Sandlot.  My dad was a huge fan of sports and also always had a sarcastic sense of humor.  He would have loved the team name.  As stated earlier, the disease is a death sentence and we hope the money we raise goes to help find a cure so the disease will no longer kill anyone else’s family members.

I walk to honor my father.  I walk to raise funds to support caregivers.  I walk to help find a cure so other families don’t have to experience what mine has.  I walk to find a cure so if this is my future as well, then I have hope.  Please visit the page my team has set up and make a donation to the Alzheimer’s Association.  After doing so, I would love for everyone to share this story or visit my Facebook page at and share the post I wrote in an attempt to raise more awareness.  Thank you for taking the time to read my experience.  Thank you to all my friends who have been on this roller coaster with me.  You know who you are and you know the stress that I can cause.  Your love and support are amazing.

I miss my dad and the wonderful man he used to be.

Racing Towards a Cure

By: Jodi Kane

This year will be my seventh Chicago Marathon in a row and my sixth Chicago Marathon with ALZ Stars. I’m hooked!

I’m running with ALZ Stars for many reasons. First and foremost, my beautiful mom was diagnosed at the young age of 60 (8 years ago, when I was 23). I watched the disease take everything from her and promised her I’d fight for her always. Even with the disease, my mom was the kindest, most upbeat, loving, strong, and loyal person I know and she was my best friend. She fought hard and wouldn’t let anything stop her. She never let the disease define her and made this world a happier place full of so much love.

On this most recent Christmas Eve, at the age of 68, Alzheimer’s unexpectedly took my mom from us and we lost her when we least expected it. We had no idea the time was coming and it shocked us, but it showed me how fragile life truly is. I promised I would always fight for her and never give up on helping find a cure, so here I am. My maternal grandparents died from Alzheimer’s along with many other relatives on my mom’s side and my uncle (mom’s brother) was diagnosed one year after her and continues to fight.

I hope we all live to see a cure for this disease and have lots of healthier days on earth to love one another. I’ve learned in the past 9 months without her that losing a parent is more difficult than I ever imagined and I miss her every single day.

Although I have no control over the situation or that I lost my mom to this cruel disease at the age of 32, I try to find control in things I can, such as fundraising for the Alzheimer’s Association and running for her. My mom was a determined person and I will follow in her footsteps that we will find a cure. My mom’s my hero and I will never stop fighting for her.

It’s such an amazing feeling to finish the marathon and I can’t wait to run. My ultimate goal is to run with my amazing mom in my heart and fight for all those who have this disease or know someone with this together. I truly think together we can really make an impact.

Local man raises money “For Grandma Allie and the hope that we will beat this disease.”

More than 400 Chicago residents will join together and rock out to raise funds for Alzheimer’s care, support and research. The 12th annual Memory Rock Chicago fundraiser will take place on Thursday, September 20, 2018 from 6 – 9 p.m. at the legendary Chicago concert venue, Joe’s on Weed Street. This rock concert benefit, which brings together Chicagoans for a night of live rock and roll, has raised more than half a million dollars for the Alzheimer’s Association since its inception in 2006.

One of those attendees is Andrew Wiedner. Wiedner now chairs the event and knows first-hand the devastating toll of this disease. His grandmother has been battling Alzheimer’s for more than 20 years–an unusually long time–and her family and caregivers work round the clock to care for her. “We first noticed it when she was forgetting small things in conversation. Over time it developed to be more frequent, which lead to other issues such as denial and irritability.  For the past 5-6 years she has been in a wheelchair without the ability to communicate or interact,” Wiedner said.

“She really never lost her tough Boston-Irish spirit, but things started to change for her as the disease got worse.  She would get confused as to where she was or overwhelmed by larger groups. Family parties could be great, or she might want to leave very quickly.  Things got tougher as the disease progressed and her mobility, communication, and cognitive function declined.”

Memory Rock is able to connect people together  “To see others that have been impacted and learn the stories of their families has been great, but it highlights the importance of finding a cure.  Being selfish for a moment, I worry that I may be in need of care or a cure down the road. I really believe we are working towards a cure and it’s great to read about new advancements, but we need to keep pressing.” Wiedner joined the Memory Rock planning committee its inaugural year in 2006 and begin chairing the event in 2016, “For Grandma Allie and the hope that we will beat this disease.”

As for the event, Weidner has been rocking out with Memory Rock Chicago for all 12 years,  “For me, it’s been talking with people about the event – it’s hard to find someone who doesn’t have a dear family member or friend that has been diagnosed or affected by the disease. We’ve grown our event because people see the impact of Alzheimer’s and recognize that we need a cure.”

Memory Rock features live performances by Liquidated Damages and The Square Feets – covering classic rock favorites that not only entertain but aim to “strike a chord” with music lovers and nostalgics alike. Guests also enjoy an open bar and access to a rockin’ raffle and auction stocked with tickets to favorite Chicago sporting events and shows, timeless memorabilia and incredible experiences in and around the city.

This year, Memory Rock Chicago is on track to raise $100,000, thanks to the overwhelming support of long-time sponsors, including Bill Barry, Dan Barry, The Zall Family, The Purcell Family, and Steve Monroe, newcomers, The Lewis & Jean Greenblatt Family Fund and the Nancy Vial Family, and so many more.

Tickets are $75 online and $80 at the door. Tickets include entry to the event, beer, wine and soft drink deals, and access to the silent auction and raffle. Visit for tickets or to donate and help rock n’ roll for a goal.

Why I Walk… Jennifer’s Story

By:  Jennifer Steck

Our family unknowingly began this journey about five years ago.  It started with memory loss –  repeating the same questions, forgetting how to use the microwave, and getting lost when driving to a friend’s house for book club – somewhere she’d been dozens of times before.  Over time, the losses became more profound – the inability to count money when it was time to pay for a haircut, her choice to stop driving altogether due to the fear of getting lost or hitting the wrong pedal, her inability to write even her own name, and her continued difficulties expressing herself with the right words.  By the late summer of 2016, it had become a challenge just to make it through each day as she battled a cycle of insomnia and terrifying nightmares, thoughts that we were trying to hurt her, and often didn’t recognize us at all.  We were faced with the terrifying realization that we were losing her – quickly.  In October of 2016, at 63 years old, Mom was placed in a nursing home, requiring 24-hour care for a rare type of frontotemporal dementia.

My husband, Shad, my two boys, Tyler and Easton, and several of my coworkers joined me in the Walk to End Alzheimer’s in September of 2016.  It was the first Walk for all of them – and only my second. Ironically, I participated in my first Walk alongside my mom many years ago in honor of her father, my Papa Ralph.

At the Walk, I felt overwhelmed listening to Chris Postin and others share their stories of caring for someone with Alzheimer’s disease.  I couldn’t fight back the tears as I watched so many others lift their yellow and orange and purple flowers in silent acknowledgment of their own personal battles.  For the first time since we began our journey, I didn’t feel quite so lost or alone.  Caring for someone with Alzheimer’s, or any dementia, can be very isolating– both by the nature of the experience and often self-imposed.  As with almost any situation, it’s difficult for anyone to truly understand what you’re going through if they haven’t been through it themselves.  And, it has been incredibly important to us that we protect Mom’s dignity and legacy.

Mom’s legacy isn’t her illness.  Hers is a legacy of love for family – as a devoted wife of 45 years, a mother to two children, a grandmother to four perfect grandchildren, and as a daughter and sister.  It’s a legacy of service to others – to her community as a volunteer for numerous organizations, to her church, and 18 years as a children’s librarian at the Galesburg Public Library.  It’s a legacy of friendship and putting the needs and interests of others ahead of her own.

While she will not be defined by her dementia, her illness and the experiences it has brought are certainly helping to shape our family.  We can’t control what’s happening, but we can control our response. We work hard to find the small blessings of each day – some days it’s harder than others.  But, we’re holding dear the little joys like a smile, a kiss, a funny face, feeding Mom one of her favorite foods, her strong grip on my hand or arm when she’s trying to tell me she’s not ready for me to leave, or just sitting quietly and watching her rest peacefully.  As virtually all language has been taken from her, a clear “I love you” or “Thank you” means so much.

There’s no cure yet that will save my mom.  But I’m hopeful that I live to see the day when the first survivor beats Alzheimer’s disease – and other similar dementias.  We have the opportunity to support the efforts of the Alzheimer’s Association and other causes by raising money for research and support services.  We can help further much-needed research by making arrangements for brain donation – as our family has already done through the Mayo Clinic, with the assistance of the Brain Support Network.  In the meantime, and maybe more important than all of this, we can share our stories and help support each other.  On Walk Day, we’re reminded that we don’t have to fight this battle alone.

Pawsitively Walking for Alzheimer’s

While some teams will be lacing up their walking shoes for the Walk to End Alzheimer’s in Macomb, one team will be grabbing their leashes. Western Illinois University’s mascot Colonel Rock (also known as Rocky) the English bulldog will be participating in the Walk to End Alzheimer’s in Macomb along with the University’s next mascot, Ray, who will eventually become Colonel Rock IV. This isn’t the first time Rocky has participated in the event.

Joseph Roselieb, Rocky and Ray’s handler, did bring Rocky to the Walk in 2016 and decided this year was the perfect year to introduce Ray to the Walk. “Earlier this year, we were once again asked to participate and with Ray joining the family this past May, it just seemed appropriate and a fun event for not only me, but the dogs as well.”

Once the duo announced they had registered as a Walk team on their “Colonel Rock” Facebook page, the fan base of more than 3,200 followers began to donate.

“I was overwhelmed by the number of donations that came forward so quickly as we announced our participation,” said Roselieb. “It was an incredible outpour from friends, family, and colleagues and a very cool feeling when you get to move your goal two times in one week. This type of support makes me feel proud to be in such a caring community.”

Within four days the team raised more than $700 to help #ENDALZ. “It means a lot to me to be able to raise money and have my two best buds Rocky and Ray (Colonel Rock III & IV) participate in the Walk, said Roselieb.

“We are extremely grateful to all of them for their continued support and hope that the Macomb area joins Rocky as he leads our Macomb Walk to End Alzheimer’s on Saturday, September 22, 2018 at Veterans Park in Macomb,” said Cheri Robertson, Manager of Special Events for the Alzheimer’s Association Illinois Chapter.

“I have to give a shout out to Cheri Robertson who is the Special Events Manager for the Macomb Walk.”  said Roselieb. “Cheri contacted me a couple of times over the last several months and really convinced me of the success a team led by Rocky and Ray would have, not only from a fundraising standpoint, but from the excitement we would bring to the event as well.”

Overall, Roselieb, Rocky and Ray are glad to help raise awareness for the cause, “For a disease that affects so many people, I want others to see that WIU supports them as well as the cause.  This is a great event to raise awareness and bring people together and we are very humbled to be able to participate as representatives from Western Illinois.”

If you are interested in registering for the Walk to End Alzheimer’s in Macomb, or any of the other 24 Walks across Illinois, visit to find a walk in your area and join us for a tail waggin’ good time!

Donate to Team page of WIU’S COLONEL ROCK III & IV MASCOTS: