Reason to Hope, Round 1

A few weeks ago, I went on a first date.  It was the kind of first date that is both simultaneously funny and cringe-inducing, the kind you see in movies. The other day I was sharing this story with my aunt and cousins (cause it’s definitely not a story for my brother and dad!), and they could barely contain their laughter.  In that moment, I felt so grateful to stand in my aunt’s kitchen with such wonderful family members and enjoy a good laugh, even if it was at my own expense.  Yet, something was missing.

As I drove home that night, I couldn’t help but wish I was sharing those stories with my mom, in our kitchen. I wish I could have called her that night to tell her, “Mom, you will never believe what happened on this date I went on."  If there is anything I remember about my mom, it’s that while she might not have been the best cook in the world (though she did make a mean burnt toast), she made sure our family spent every dinner together, laughing and enjoying the company of the people we love.

Allow me to explain further.  When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50. The once bold and fiercely independent woman I knew quickly became a stranger to me. My mom has always been known as a force to be reckoned with, and so it was very odd to watch her go through the initial stages of Alzheimer’s. At first it was the little things: she would forget to pick me up from school, or she would go to pick me up from school instead of work, and we once got lost on a drive home from the airport.

Then, when I was 16, one day my mom asked, “What’s your name again?” I don’t even remember what I said in response. As I think back to what my mom went through, there is much I feel I have forgotten, because Alzheimer’s just didn’t make sense to me at the time. I could process other diseases, but Alzheimer’s wreaked havoc on my family as we tried to figure out how to handle the loss of my mom in so many ways.

I do however distinctly remember the afternoon of my high school graduation. At this point, my mom had been battling Alzheimer’s for about 3 years. Just a few weeks before, my family and I had flown to North Carolina to see my brother graduate from college, and after my mom had made it through traveling and attending his graduation, it didn’t occur to us that much might change in a few weeks.

However, a few weeks of early-onset Alzheimer’s had a huge impact. The day of my graduation, my mom refused to get ready to go with us, insisting that the clothing my dad had laid out for her was for children and that he was trying to trick her. Just five minutes before my brother and I were about to leave to go by ourselves, my mom changed her mind and decided to join us. Fortunately, graduation was fairly uneventful, and on our way home, we decided to stop to get some dessert at Baker’s Square to celebrate that night. As we made our way to the table to sit down, my mom stopped and started yelling towards our table while looking at my dad: “I’m not going with him! He hits me! I am not going with him!”

A moment of uncomfortable silence followed as we decided what to do—I was ready to leave, but my aunt, my mom’s sister, kept insisting: “No, Alex, you deserve to be able to celebrate! We can have dessert! It’s okay!”
With Alzheimer’s and any life-threatening disease, there is this inclination to hold onto what is “normal.” When I was 19, I was diagnosed with cancer, and I remember trying to maintain normalcy as much as possible—so chemo would just be a blip in my life, not the definition of my life at the time. In the very same way, that night at graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” The night of graduation, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do.

However, there is nothing normal about what happened on the night of my graduation or what Alzheimer’s does to anyone. We didn’t have dessert that night—instead, I asserted that “This is my graduation, and I would really just love for us to go home,” because I hoped that that would calm my mom down. My family could feel the heat of the eyes of the restaurant guests on us as my mom continued to claim, “He hits me! He hits me!” and at the moment, all we could do was smile a little with tears in our eyes as we reassured my mom, “It’s okay. We’re going to home, and it will be okay.”

We went home. But, in just three years, Alzheimer’s had taken from my mom the ability to enjoy being with her family, to love life as she used to, and so it wasn’t okay. Instead, she feared the people who loved her the most. My parents would have celebrated their 43rd wedding anniversary this year, and my dad has always been head-over-heels in love with my mom. It might seem unthinkable that so many years of marriage and happiness can seemingly be erased, but for my mom, those memories were and instead she was very scared. She didn’t know what was going on—where she was, who she was with, and for about a year and a half, she actually was very angry, fighting back against the disease and as a result fighting back against those who took care of her.

In May of 2011 my mom was diagnosed with cancer, and just four months later, on September 29th, my dad called me and told me my mom had been having trouble breathing. The nurse from hospice said unless my mom were to take in more fluids, she would only be able to live for about 2.5 more weeks. Four days later, on October 3rd, at around 8 a.m., my mom passed away. After ten years battling, my mom finally got to rest.

My family, our friends, my dad, we all miss my mom immensely. As I wrote her eulogy and a speech to deliver at her memorial mass, I found myself reaching out to hear stories about my mom. I wish I could have known her better. However, as I said at the beginning, if there is anything I remember about my mom, it’s that she knew that life was best spent with the people you love and filled with laughter.

The Alzheimer’s Association makes it possible for those of us affected and impacted by this disease to have fun…to be with the people we love, to support them and show our love for them through events like the Walk and Blondes vs. Brunettes, and to get support ourselves through mentoring programs and support groups (and to laugh when it feels like all we want to do is cry). I am so grateful for the Association for that.

Being at these events is always extremely powerful and compelling to me. Not a day goes by that I don’t miss my mom or try to remember what it sounds like to hear her laugh. I still have moments when I want to call her and talk to her, and a week from today, I’ll celebrate her 64th birthday, wishing the circumstances were very very different, that my mom and I were swapping stories in the kitchen, instead of celebrating on my own.

No one should have to wonder, “When will he forget my name? When will she no longer be the person I know her to be? Will celebrating her birthday without her ever get any easier?” As my brother said, “Mom was an incredibly confident, smart, and talented woman who had all of that taken away from her without a chance to do anything about it.  I think if there's one thing that makes me feel like a fight against ALZ is important it is so that those that have those blessings like mom did don't lose them so easily.” I am sure everyone in this room can name more than one person whom life would be different without and not nearly as wonderful to enjoy without him/her by your side. 

By being here today, donating and supporting the Alzheimer’s Association, you are leading to a change for others diagnosed with Alzheimer's and driving towards raising the funding we need to find a cure, ensuring that the people who make our lives better, whom we’d like to do nothing more than sit, laugh, and enjoy life with are able to do so with us every day. There was no history of Alzheimer's in our family--we didn't know it was coming, and we couldn't do anything once it arrived. My brother and I know in the future it's possible we could hear the same diagnosis my mom did. However, we've committed to fighting against the same treatment plan and prognosis she had by donating and supporting the Alzheimer's Association, and I hope you’ll join us as well.