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

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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.

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