The Poetry of Caregiving

By: Caroline Johnson 

It was a chilly winter day. I turned to write a homework assignment on the whiteboard for my English students. As I wrote the date, January 26, I froze: It was the one-year anniversary of my mother’s death. I thought about her funeral and how the soil was too frozen at the time to cover the casket. I wondered if it had thawed now. I wondered where she was.

As the family caregiver for both of my parents, I witnessed firsthand the traumatic effects of memory loss. My father’s dementia was the byproduct of a rare neurological disorder; my mother had full-blown Alzheimer’s. As a way to grieve their loss, I wrote poems over a 15-year period. These poems were published this past May in a book dedicated to caregiving, entitled The Caregiver (Holy Cow! Press), which contains poems about Alzheimer’s, Parkinson’s, hospice, and many other concerns I encountered on this roller coaster journey of care. The poems became a sort of calling for me, and I am including some excerpts from them in this article.

A mother of five, my mother was a very creative, resourceful and extroverted person who made friends wherever she went. Even with her Alzheimer’s, she remained gracious, despite the cruel nature of the disease. She would “wander into each guest’s memory, making friends with strangers, whistling a tune each day” (“Borders”). Despite Rheumatoid Arthritis and a shunt surgery, she remained strong.

It was a gradual progression. She could never remember the lines in a play she was acting in. This morphed into more forgetting, then delusions, then wandering. Her home became foreign to her, and we had to put a lock on the door:

“I’m going home,’ you say confidently, in a cloud of delusion, as you step over yesterday’s daffodils, and walk away from the moon.”  (“Wandering”)

It was about that time when she began thinking there was another Caroline, one that was perhaps both evil yet also generous. I describe this in my humorous poem, “Donut Holes”:

“Do you know someone has given me a whole closet of clothes? Caroline, did you do that? … Or was that the other Caroline?”

Towards the end, my mother needed to be spoon fed. I describe this spiritual act in the poem, “A Mother’s Love”:

            “The nurse sits her up in bed.

              She winks one eye open and I feed her

              A spoonful of stuffing and gravy.

              With brown eyes she smiles, and the smile

              Lasts me the whole day—more than 77 years,

              More than one week in a hospital bed,

              More than a generation,

              More than the love a mother can show.”

My mother was a hospice volunteer in her younger days. Both my mother and father were on hospice at the end, and we welcomed the support, though it is always difficult when you witness someone dying: “Seeing Mother as Raggedy Ann / in hospice clothes / shakes me up, rattles my bones” (“Conjuring”). I was holding her hand when she passed. Like so many mothers, she wanted to make sure everybody else was satisfied before she could let go.

During the last year of my mother’s life, my husband and I participated in a Walk to End Alzheimer’s. We also organized our own private bike-a-thon, “Ride for Gladys.” She passed away shortly afterward.

I don’t remember when I wrote the poem, “Alzheimer’s Dream,” but I’m sure it was during the middle of her illness when she was struggling with delusions and trying to stay sane. In the poem, I write about how she has become a stranger to me; nonetheless, I, like so many daughters of mothers with memory loss, craved her company:

            “Let’s sit down here and talk.

              Let’s look at the weather.

              Let’s do everything to be together.

              Let’s try not to remember,

              Have a drink to forget

              That we ever once met a lifetime ago

              When I called you mother

              And needed you so.”

I still miss her, but she instilled in me a love of creativity, art, music and people. I will always treasure her special gifts, and these came through even when she faced the most devastating challenges.

Caroline Johnson has two poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and more than 100 poems in print.  Nominated for the Pushcart Prize and Best of the Net, she won 1st place in the Chicago Tribune’s Printers Row 2012 Poetry Contest. She leads poetry workshops for veterans and others in the Chicago area. One of her favorite activities in the past was watching James Bond movies with her father. Visit her at www.caroline-johnson.com.

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 www.facebook.com/josephdulin 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 www.memoryrockchicago.com for tickets or to donate and help rock n’ roll for a goal.