05/12/2014 03:35 pm ET Updated Jul 11, 2014

Our Mothers' Long Goodbye

By Trish Vradenburg and Congresswoman Annie Kuster

On this Mother's Day, we honor our mothers, who suffered from a deadly and currently untreatable disease: Alzheimer's.

Trish Vradenburg (TV): My Mother was larger than life. She embraced life with style and grace and passion. She could capture a room just by entering it.

Congresswoman Annie Kuster (AK): My Mother was fiercely passionate, and she taught me to care about the issues that really matter -- protecting our environment, looking out for those who need help and treating everyone equally. As a New Hampshire Senator, she was a pioneer for women in politics, and she paved the way for young women to find the courage to run for public office.

TV: In 1987, when I was writing for the television show Designing Women, my Mother's life suddenly began to unravel. My Mother, this powerful, dynamic woman -- invited personally by JFK to his Inaugural as a thank-you for handing him New Jersey -- had suddenly become a confused, helpless person. We went from doctor to doctor, hoping for a quick fix. Alzheimer's, they diagnosed. I barely knew what the disease was; never mind that there was no cure. I watched helplessly as this elegant lioness was reduced to a glazed-eyed woman in a wheelchair. Her mind, her dignity, her soul and finally her body succumbed to this vicious killer. It didn't seem possible. My mom was invincible. But she was no match for Alzheimer's. Nobody is.

AK: I remember when my Mother first started to lose her memory. She became confused easily, and forgot plans we'd made. Over time, we realized this was more than absentmindedness, and my Mother was suffering from a serious disability that would change our lives completely. Many refer to Alzheimer's as "the long goodbye." With no treatment or cure, watching your loved one slowly deteriorate is heart-wrenching. Yet my Mother handled the changes with courage and grace; she never became frustrated or upset, but instead continued to live her life still full of love and laughter. While I was juggling work, raising two young boys and helping my father care for my Mother, my Mother and I wrote a book together. We hoped that by sharing our experience, we could help other families going through the same ordeal.

TV: My mom died 23 years ago. Surely, I thought, by now there will be a cure, or a way to manage it like HIV/AIDS. But I was wrong. So now it is my turn to do battle, but not with the disease. It will always win. I co-founded WomenAgainstAlzheimer's and with women across the country, we do battle with Congress to allot funding for research to defeat this killer. The numbers for women are sobering: 2/3rds of the 5.2 million victims are women; 2/3rds of the 15 million caretakers are women. I am blessed to have Congresswoman Annie Kuster, a passionate, determined advocate and founding member, by my side. We've seen promising developments in just the past year. Leading institutions and organizations like Brigham & Women's Hospital in Boston are working to bolster innovative sex-specific research to uncover male/female differences in major diseases, including Alzheimer's. But that's not nearly enough.

AK: My Mother died in 2005. In honor of her, my family vowed never to stop fighting this terrible disease. My father and I traveled around New Hampshire sharing our book, and I have continued to advocate on behalf of caregivers and their families, who are too often overlooked in the fight against Alzheimer's.

I've also continued this important work in Congress. Nancy Reagan once said that Alzheimer's is not a partisan issue -- and she couldn't be more right. Without treatment or a cure, the societal cost of caring for Alzheimer's patients impacts every American -- missed work days, unpaid leave, navigating the endless field of hospitals and nursing homes, making the right choices. Dealing with this disease has a huge impact on families of every socioeconomic and political background. Congress must support programs that help ease the burden on caregivers, and we must continue to invest in critical medical research that could end this disease once and for all - including, at long last, research on women. Scientists have begun to make huge strides in brain research, and I am hopeful that with the support of Congress, we can turn this research into a treatment and ultimate cure for this disease that has devastated so many American families.

TV and AK: So we're fighting for our Moms, for their memory, for their daughters, for their granddaughters and every generation to come -- so they can live the full lives they deserve and proudly carry forward the genes of the valiant women our Mothers were.

Happy Mother's Day, Mom.


Congresswoman Annie Kuster's (NH-2) Mother was first diagnosed with Alzheimer's in 2001, and Kuster spent the next four years caring for her alongside her family. Kuster and her Mother co-wrote a book entitled, "The Last Dance: Facing Alzheimer's with Love and Laughterto detail their experience with Alzheimer's. Kuster continues to advocate in Congress for increased research funding and programs to support Alzheimer's patients and their caregivers.

Trish Vradenburg is Vice-Chair of USAgainstAlzheimer's, which she co-founded in October 2010, and a founding member of WomenAgainstAlzheimer's. She wrote Surviving Grace, a quasi-autobiographical play about her mother, which has been performed across the country.