Maria Shriver

Young Onset Alzheimer's Disease: Meeting Maria

By Karen Henley

Back in 2004, three years after my husband’s diagnosis, I wanted to do something for my mom. She had been a tremendous help. With two children at home (ages 7 & 9) and a 36 year old husband with Alzheimer’s, I needed all the help I could get and she selflessly gave it to me.

I had been a huge Oprah fan and, one day while at work, I went on to her website and saw the category “Be on Our Show” -- so I clicked. They listed all the topics they were currently working on. While I scrolled down, anxiously searching for something I could find to describe my mom and the help she gave me, I came across another topic that took my breath away - “Do you know someone under the age of 55 with Alzheimer’s”.

Young Onset Alzheimer's is not often addressed so I knew that I could not ignore this. During my lunch hour, I submitted a quick description of my husband and our situation. I knew at the time, as soon as I hit the “enter” key, things would happen.

Soon afterward, an Oprah producer contacted me and asked to expand on our story. She had explained that Oprah’s dear friend, Maria Shriver, was going to be a guest on her show and they were looking for other families who were living with this disease. Maria’s dad had been diagnosed with Alzheimer’s and she was going to share her story as well as a book she had recently written on the subject. After a few e-mails and phone calls, the producer asked if we would want to share our story on The Oprah Show. I was thrilled. I knew her show was viewed my millions and I knew it would be a huge catalyst in raising awareness for Young Onset Alzheimer’s Disease.

As nervous as I was about being on national TV, I knew it would definitely get people to see that Alzheimer’s was not just an “old person’s disease”.

In April 2004, an Oprah producer and team showed up at our home to tape Mike and our family. The show aired in July of 2004 (ironically I watched it in a common room of the hospital where my husband was a patient for his anger/agitation).

Along with Maria Shriver, the show included Leeza Gibbons (who’s mom had Alzheimer’s), Julie Meisner Eagle, (a young woman who documented her mom’s decline via video. Her mom wanted people to see what the disease REALLY did) and my family. The entire process of being flown out to Chicago to be on The Oprah Show was quite surreal.

I just wished it had been for a better subject.

As I sat in the green room, getting my hair and make-up done, Leeza Gibbons popped in to say Hi to Ms. Meisner-Eagle. I had been trying to get my sister’s attention (she went with me since my husband was too ill to travel) and to tell my children who Leeza Gibbons was, when she introduced herself to me. She took a moment to talk to my children and myself and to ask about our experience with Alzheimer’s Disease. Soon after, my sister and I were escorted into the studio while my children were brought to another green room to watch the taping from there.

An entire show was taped before my sister and I realized that my story was not told. Maria Shriver and Oprah sat down to talk about her dad and before they knew it, an hour show was already complete. The producers decided they now wanted my son and daughter to be in the audience with us. The next thing we knew, my children (who had been waiting in Leeza Gibbon’s green room) were being ushered into the audience to join us and we were told that they would be taping a second show.

It was terribly emotional for all of us to see the video that had been shot at our home and how beautifully it was put together that we were all complete wrecks on national TV. The second taping went even faster than the first one and soon we were being rushed out of the studio so we could catch our flight back home. Waivers were being thrown at me for the children to appear on the show, when all of a sudden we hear someone running down the hall, security following close behind.

We turned to look and saw that Maria Shriver was running after us to talk to us. Her main concerns and questions were for my children and how they were dealing with their dad and the disease. She explained how her children were close in age, and they were losing their grandfather. She tried to understand the difficulty of living with a spouse with Young Onset, and also how our children were dealing with the reality that their dad was disappearing right before their eyes.

What Maria did that day twelve years ago, will never be forgotten. We proudly tell that story frequently. Maria Shriver went above and beyond to show us how much she cared. She left an indelible mark on me, my children and my sister that day and proved that one small act of compassion can make such a difference in another person’s life.

After the taping of the show, I realized we never received a copy of her book that had been given to each member of the studio audience. I felt bad because I would have loved to have that as my souvenir of that day.

I contacted Maria Shriver’s office and she sent a book out to each of us, and in mine, included a hand written note. With the exciting life that she leads, I’m sure she will not remember any of this, but this was something I will never forget.

Maria Shriver walks the walk and talks the talk. I am so honored to be contributing my personal experiences with her readers and I hope that maybe my reflections can one day help someone else along the way.

Follow Karen Henley's journey...read her past blogs here.

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Karen Henley is a legal assistant for a real estate attorney as well as a full time caregiver to her husband. She is an advocate for Alzheimer's disease research and awareness, especially for Young Onset Alzheimer's. She lives in Westbury NY with her husband and two children. She's the author of the blog, Follow You, Follow Me: A Young Family's Journey with Young-Onset Alzheimer's Disease.