Public Figures Testify about Private Alzheimer's Ordeals

Sometimes I (try) put my pants on one leg at a time. Sometimes I try to get both legs in the same leg hole. Sometimes I don't recognize I can't get them both in the one leg hole until I have struggled for some time. Sometimes I forget to put on my pants! Sometimes I put on the wrong pants.

There was a panel with ONE person with dementia on it. Congrats to having Chuck Jackson there, but he was treated as the invisible or barely visible panel member. No one wanted to engage with him, to understand him, to listen to more than he had to say in his prepared statement.

Everyone wanted to hear, speak to, engage with the Justice and the former Speaker of the House. It's not that what these two intellignet human beings had to say wasn't important. But so did what Chuck have to say was important. He is more intelligent than either of the celebrities when it comes to tell others what it's like to live with the disease. He has a perspective others just don't and can't ever have.

Asking caregivers to define how to respond to the crisis of alzheimer's disease is like asking doctor's how to respond to war. They don't experience the disease or the war, they treat it, they do their best given their distance.

When will people get their priorities straight? The Congress, the leading Alzheierm'ers assocation's are certainly not leading, educating other about "it." Engage us, trust us, empower us, involve us!

Richard

Alzheimer's is the great equalizer. Intelligence, status, education--none of it matters when you're in a caregiving support group sharing your challenges, frustrations, hopes and fears with other families facing Alzheimer's just like you.

My mother battled this Alzheimer's, which meant I as her daughter and caregiver did as well, as did my husband and children and all who knew her knew her. Alzheimer's affects families and communities, and as insidious as it is, it ironically unites us.

We need each other. We need our families, communities, health care systems and government--each piece of the puzzle is crucial. We need support, research and resources to deal with Alzheimer's and I hope that all the voices, celebrities, politicians and everyone else gets a chance to be heard.

It is by by our voices, our stories, our challenges uplifted as "one" can we begin our battle cry--to find a cure for this disease--and to make sure that those who suffer with this disease and their loved ones get the support they desparately need and deserve.

~Carol D. O'Dell

Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir