Essay: 'The Sad Goodbye,' by Former First Lady Laura Bush

Oct. 19, 2010 — -- When former first lady Laura Bush was campaigning with her husband for the governorship of Texas and raising her young twin girls, she was also taking care of her father, who had Alzheimer's disease. He died in 1995. As part of The Shriver Report on Alzheimer's, Bush shared the following essay about that struggle.

"For years I've been an advocate for health concerns like breast cancer and heart disease, because I believe lifelong good health begins with awareness. This truth has helped shape our fight against HIV/AIDS, heart disease and various cancers, but the same lesson can be applied to another leading cause of death in America -- Alzheimer's disease. Today it's estimated that 5.3 million Americans are living with Alzheimer's disease, and someone develops a new case every 70 seconds. And while nearly 11 million Americans serve as unpaid caregivers to those affected by Alzheimer's, their stories often go untold. They're on the frontlines of fighting a disease that shows no reverence for a life well-lived. They see the slow fade of a once vibrant life. Their experiences can help raise awareness and spur research to find a cure, so we can build a future in which Alzheimer's no longer exists.

In writing my memoir, "Spoken From the Heart," I reflected on my own family's experience with Alzheimer's. What my mother noticed first was that my father could no longer fill out bank deposit slips. He would stare at the lines on the forms, a look of confusion washing over his face. So Mother began to make the deposits for him. We never got a diagnosis of Alzheimer's or a specific form of cognitive failing. But we saw his mind erode. Once, he asked our daughter Barbara to get him some "B & Bs." He meant M&Ms, but he kept saying "B & Bs." In her 10-year-old way, she understood him and came out of the grocery store with the brown bag of the bright candy just the same. When my mother took Daddy to the doctor, one of the questions on the cognition test was "Who is the president?" And my father couldn't remember President Clinton's name. Then the doctor asked, "Who was the last president?" And Daddy had no idea, even though it was my father-in-law, George H. W. Bush.

Mother quickly learned that caring for someone suffering from Alzheimer's requires constant sacrifice. One day, my father walked in the house, set his car keys on the table, and announced that he was not going to drive again. He quit forever that afternoon, and all the driving fell to my mother. For years Daddy had been the driver, taking Mother on Sunday drives to bird-watch. Now it was her responsibility. If she did not take him out, he would not leave the house. She resigned from her ladies bridge club and began to ferry my father around. She drove him to Midland's indoor mall, where they could walk undisturbed. She drove him to see his friends. But then he began to fall, and she was afraid to take him too far from home. Friends visited. They came to Daddy when he could no longer come to them. That is one of the luxuries of living a long time in a small town. Still, their world shrunk as Daddy became more and more housebound.

Watching Mother look after Daddy, it was clear to me that caring for a loved one suffering from Alzheimer's is a burden that cannot be carried alone. My mother was fortunate she was able to hire help. Friends and acquaintances would call with the name of someone who had assisted one of their relatives, and so she found a man to come in each morning to help Daddy bathe and dress, and she had other people who came through during the day to help.

I always felt bad that I wasn't able to pitch in more, especially in the last months of Daddy's life, because they fell during George's campaign for Governor. Looking back now, I see other things I wish we had done. Daddy always loved music. He loved Glenn Miller, Glen Campbell and Jerry Jeff Walker's "London Homesick Blues." I wish we had played more music for him during those last few years. Brain researchers say that songs are imprinted in our memories longer than many other things.

It wasn't until after Daddy was gone that we realized what a weight his illness had been. About a year after Daddy died Mother told me that she felt well again. She said she realized then how the constant vigilance of caregiving had left her feeling almost physically ill. As the burden of caring for Daddy was lifted and her own sense of well-being returned, Mother was able to focus on parts of her life that had been on hold. She began to tend to the house Daddy had built for her -- reupholstering the chairs, replacing the drapes, and fixing the myriad of things that had gone unrepaired while Daddy was in decline.

Alzheimer's and dementia in general are often called "the long good-bye," but to me they are "the sad good-bye." So often, as with our family, we don't say good-bye when we can. We don't recognize that moment when the person we love still knows enough, still comprehends enough to hear our words and answer them. We miss that moment, and it never comes again.

I'm grateful for ongoing efforts to bring about a future in which our children and grandchildren will not have to worry about missing that moment. Without action, it's expected that Alzheimer's will claim the lives of more than 16 million Americans by 2050, and someone will develop a new case every 33 seconds -- twice as often as today.

We've seen so much progress in our battle against strokes, cancers and heart disease. The same can be true for treating and curing Alzheimer's. Greater dialogue will lead to greater awareness. Purposeful investments can stimulate successful research. And together, we can help bring an end to heartbreaks caused by the sad good-bye."