Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
Tuesday, May 1, 2012
Alzheimer's Public Policy Forum in DC
This is the same post I wrote for mariashriver.com. I apologize to those who read both.
This past week Courtney and I attended the Alzheimer’s Association Public Policy Forum in Washington DC. Brandon wanted to go with us, but with Mike’s passing, the stomach virus, and the flu, he had missed too many classes. The trip was emotional from the beginning. The last time we attended was two years ago and Mike was still with us. Our goal is always to advocate and raise awareness - not only for funding and research - but also for Young Onset Alzheimer’s. Younger people with this disease are consistently forgotten, but I have vowed to change that.
As much as we were excited about attending, we were equally anxious. Mike’s passing was still fresh and I knew it would be an emotional journey. Before Mike passed, we weren’t sure we would be able to go, as his health was fragile and I didn’t want to leave him. A week or so after he passed, we decided we would go, in Mike’s memory, and fight even harder.
Attending the forum is also physically exhausting. Since we decided to go at the last minute, we couldn’t get a room in the hotel where the forum was being held, so we had to get up at the crack of dawn each day to allow us time to travel so we could get to the scheduled programs on time. Our days began at 6a.m. and ended at 11:30 p.m.
Monday evening's candle lighting ceremony, which usually takes place on the steps of the Lincoln Memorial, was moved inside due to inclement weather. Looking out at the sea of lights, listening to the performer sing “Imagine” was almost too much for me to bear. Getting upset didn’t embarrass me because I knew that each and every person in that room could feel my pain. Almost all who become advocates have done so because they have been personally touched by this disease, or because they have the disease themselves. Once you have experienced Alzheimer’s, there is an unmistakable bond that forms with others who have traveled the same road. If someone had seen my tears, they would have understood. “Imagining” what our life would have been like had Alzheimer’s not invited itself in is always emotional for me. Mike deserved more, my children deserved more, I deserved more.
The second day of the conference consisted mostly of “break out” sessions where we were instructed on what to ask of our Representatives and how to best reach out to them. Our group from New York didn’t have to work too hard because our Senators and Congressmen/women are all on board with our requests. Listening to other advocates talk as they explain how they are constantly dismissed by their Representatives and told they cannot support these bills made us angry.
At one of these sessions, we listened to former Senator Dennis Moore from Kansas. He had been one of those Senators who our advocates went to for help. He spoke about his recent diagnosis and what it meant to him and his family. No one is safe. Alzheimer’s does not discriminate and we see proof of that over and over again. It was also at one of these sessions that I met my new friends Matt and Elizabeth from California. Putting faces to people I’ve only known through e-mail is always a pleasure.
The second night was capped off by a dinner and this year we were told over 950 people attended. Meredith Vieira, Jane Seymour, Pat Summitt and Maria Shriver were all in attendance. What an honor it was to see these people take time out of their lives to participate in this conference.
Legendary Tennessee women’s basketball coach Pat Summitt and her son Tyler inspired all in attendance when she received the Sargent and Eunice Shriver Profiles in Dignity Award, presented to her by Maria Shriver. Another emotional moment for me was when I saw Jane Seymour. Mike was in love with her and she was his crush. When most young men had crushes on Farrah Fawcett, Mike loved Jane Seymour. There was always friendly teasing throughout our married life about this. When I saw her, I felt that Mike was with me, smiling down from above. I was also able to stop by Maria Shriver’s table and talk to her personally and thank her for all that she has done to help our cause, for her genuine concern for all who are dealing with, or have this disease, and for reaching out to me after my husband’s passing. She was correct that night when she told me that it’s often the small things that make a difference.
The last day was by far the hardest. We started out at the Capitol buildings at 8:00 a.m. and our meetings ended at 3:00 p.m. with six scheduled appointments throughout the day. I told our story over and over again. I kept it together until the part where I had to tell them that Mike passed away in February. Reliving our journey is emotionally exhausting, but it is a necessary evil in getting the point across as to the horrors of this disease. As previously mentioned, we have the full support from our Senators and Congressmen/women here in New York, and for that we are deeply grateful.
After visiting our Representatives, Courtney and I decided to walk even more (what were we thinking!) and head over to see The White House. It must have been 30 years ago since I was there last, yet standing there and realizing the history in that one building was still amazing. With extremely achy feet, we headed back to our hotel to change, then took a cab ride back to Union Station where we waited for our train home. We walked in our door that night at midnight. It was a long and emotional three days.
It is empowering to do what we did, but I pray for the day that I will never have to do it again. As the caregivers, patients, and all those who have lost loved ones yelled on Tuesday night, "THE END OF ALZHEIMER'S STARTS WITH ME".