Fighting Alzheimer’s Disease: One Caregiver’s Story

Alzheimer's Association, The Longest Day: Joanne Wieckert and her daughter, Erica Kubena

Each year, thousands of people across the nation take part in The Longest Day, an event held annually on the summer solstice (June 21) and dedicated to those who have Alzheimer’s disease or other dementias. Participants create their own unique tributes by doing something they love, or something special to honor a loved one. These personal tributes rally others to the cause, and help raise awareness and funds for the Alzheimer’s Association. Last year, more than 10,000 people from nine countries participated in 3,200 Longest Day tributes and $3.8 million was raised for the Alzheimer’s care, support and research. The Longest Day bridges a gap of isolation and allows families to feel included in a supportive community.

Alzheimer's Association, The Longest Day: participants and staff
Group of The Longest Day Participants, Including Alzheimer’s Association Chapter Staff.

Elmwood Park native Erica Kubena is all too familiar with the loneliness of Alzheimer’s disease. She is the primary caregiver to her mother, Joanne, who was diagnosed with Alzheimer’s disease in 2010.

Erica has seen the effects of this disease first-hand and grappled with the changes this relentless disease placed on her family.

Despite all the challenges, Erica knows she is not alone in this fight and will stand with the other millions of Americans who are affected by this heartbreaking disease.

Erica shared her personal story with the Alzheimer’s Association and discussed how she became involved with The Longest Day.

My Journey With Alzheimer’s Disease

By Erica Kubena

I used to believe that the hardest thing to do was open myself up to other people. The reality of it is that the hardest thing to do is talk about someone you love to other people, especially when that other person is going through one of the hardest fights of their life. I have come to realize there’s a comfort in knowing you are not alone in a seemingly endless journey.

In October 2010, my beautiful mother, Joanne Wieckert, was diagnosed with Alzheimer’s disease at the age of 67. Although my mom had exhibited some warnings signs, it never crossed my mind that this fatal disease would be the outcome. I remember crying when I heard the news — more out of fear of the unknown than anything else. Surprisingly, the biggest comfort I experienced in that moment came from my dad when he said, “Growing old isn’t for sissies.” I was shocked, but in a sense that was his way of calming me down, telling me that it was time to toughen up. After my own journey I agree — this disease calls for the toughest people to step up.

My dad took on the responsibilities as my mother’s caregiver. He took care of everything. Whether it was doctor appointments or healthcare issues, he was her support system. I felt we could accomplish anything on this journey together.

In July 2011, three months before my wedding, my dad passed away and I was left on this unknown journey without him. I had no idea what I was facing. I knew I needed help and support, but I was not sure who to turn to. After weeks of researching, I almost gave up hope. Then, I found the Alzheimer’s Association.

I am truly grateful by the amount of support and information the Association offered during my time of need. Everything was just at the edge my of fingertips. I knew I wanted to increase my involvement in the organization; I just didn’t know how. That’s when I came across The Longest Day and Walk to End Alzheimer’s. While I dream of one day being strong enough emotionally to participate in the Walk (as my Aunt Wilma started last year), I absolutely fell in love with the idea of raising funds for a cause so close to my heart while doing different activities that I enjoy.

Alzheimer's Association, The-Longest-Day: Joanne Wieckert and Erica Kubena
(L to R): Joanne Wieckert and her daughter, Erica Kubena

Last year was my first year participating in The Longest Day. Some of my friends joined me and we formed “The Purple Winged Warriors.” We made paintings and sold mason jars decorated as baseball team jerseys. This year, we are planning on making purple “love” candles in mini mason jars and possibly adding other crafts as time allows.

Raising funds is so critical to the cause of ending this disease. I try to raise funds in honor of everyone who has earned their purple wings already and everyone who is still here, fighting every day. I continue to see on a daily basis what this disease does to families and to the individual. It needs to end. For future generations to not have to know what it’s like to be seen as a complete stranger by someone who raised you, for future generations to not be subjected to watching someone you love shut down physically, for future generations to remember who they are and what they’ve accomplished in their lives — I continue to fight, I continue to raise awareness and funds and I continue to love my sweet mother through this devastating disease. I find comfort in many things that I read over the years but will end on the one that sticks out the most: “Love is not a memory. It is a feeling that resides in your heart and your soul.”

I encourage everyone to join my team and all others in raising awareness and raising funds for The Longest Day 2017, because your love is worth it.


If you are interested in participating in The Longest Day, please click here.

Alzheimer's Association: The Longest Day

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