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October 05, 2006

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Patty Doherty

Years ago, I went to an Alzheimer's fair, similar to the one you describe. It was made worthwhile by one speaker who presented on an alternative nursing home for Alzheimer's patients. She was remarkable, so positive and strong. I can't remember who she was or what nursing home she represented, but she said something that has stuck with me to this day. "Advocate for your parent's care. Your voice is the only voice they have."

What I've learned is that it takes practice to speak for another. I wish these "fairs" would offer workshops in doing just that. How does one effectively fight for the basic human dignity of an ill parent who has no voice? I think this is a teachable skill, like any other, but I don't know of any place that teaches it. What are the basics of advocacy? How does one evaluate the care a nursing home is providing? Is there a way to effect change? What I've noticed in reading blogs about AD and the caregivers who write them, is they're so similar and yet all have different approaches to meeting the challenges of this disease. Under it all though, runs a current of exhaustion, frustration and anger. The available information and resources that exist today are inadequate at best and at times downright pathetic. I want to KNOW what to do. I want to KNOW where to turn. I want to KNOW who the experts are. I want to KNOW what my government is doing to help. I want to KNOW if my PARENTS ARE SAFE. And the way things are today, I really and truly do NOT know and a health fair doesn't cut it. What we need, in my opinion, is leadership. We need a government responsive to the snowballing needs of its elders. After caring for my father for the past eleven years, that's the one thing I DO know.

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