I Still Do

December 3, 2009

Talking about Alzheimer’s

Filed under: Alzheimer's Disease, alzheimer's, caregiver, Uncategorized — Judith Fox @ 9:48 am

While I was signing copies of “I Still Do” at my New York book launch, I was deeply touched by several people who tried to tell me their story but were so new at it, so raw, that they couldn’t complete their first sentence without crying. There were hugs, and Kleenex tissues passed, and then—slowly—the stories came. In two situations, young women were crying because their fathers—also young—had just been diagnosed. It’s very hard to witness such grief and know and others, about the gifts that we can receive when we care for someone with Alzheimer’s: we can (and must) learn patience; we can understand, viscerally, what it means to live in the moment; we learn to adapt and—yes—go with the flow. It was these kinds of warm and very human interactions that helped make my trip so memorable.

But there was also a situation that made me angry and disappointed, and reminded me that one of the reasons I wrote “I Still Do” was to help reduce the stigma and shame associated with Alzheimer’s. This is what happened: at a local Alzheimer’s Association event where I was a speaker, I overheard a physician tell someone that he and colleagues avoided the use of the word “Alzheimer’s” when talking to families and patients who were dealing with the disease. He thought the name was “wrong” and the word frightening. So I turned to him and explained that I had a different point of view, and that I thought it was important to use the words “Alzheimer’s Disease”. I believe that the only way we can take away from the word “Alzheimer’s” its negative power is to use it casually and often in conversation and to educate people about the illness. I don’t know if I changed, or even slightly opened, his mind—but I do know I had to say something. What do you think about his comment?

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2 Comments »

  1. I agree with you that it’s best to know the truth of what you are dealing with so you can take action and make choices…but AD is VERY frightening and will be until we can fix it. I’ve lost two grandparents to AD and I’m scared whenever my mom and papa can’t remember something.

    Comment by sara — December 5, 2009 @ 11:38 am

    • I know how frightening AD is, Sara, and I’m sorry it’s affected two of your grandparents; it’s only natural that you’d worry about your parents. But I really do believe that knowledge can be powerful; understanding the ways in which Alzheimer’s presents is important so that you know when it’s productive to worry about your parents, and when it’s not. I also think advocacy may be a helpful way to challenge the fear and anger that can accompany AD. We’re all facing an Alzheimer’s epidemic unless we collectively demand that our leaders put AD high on the health care agenda. We need to do everything we can as individuals and as a society to make sure that appropriate funding is available for expanded research, resources and support. You can really help—and that gives us a small element of control, but an important one.

      Nancy Brinker, Susan G. Komen’s sister, made a promise to her dying sister that she would do everything possible to help put an end to breast cancer. Look at the difference one person has made.

      Comment by judithfox — December 9, 2009 @ 8:22 pm


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