hear our voices

“There I was squeezing my wife’s hand as the doctor shuffled through his papers. He made no eye contact. He stopped, without looking up, as if he was reading something of little interest and matter-of-factly said, ‘Yes. It seems definitive. You have Alzheimer’s disease.’”

This is what Henry shared with a group of health care providers. He was on a panel with three other people who had been diagnosed with Alzheimer’s within the last few years. They were presenting at the American Society on Aging’s annual conference in March 2023. Each relayed similar stories of physicians offering horrendous news with seemingly little compassion. Esther shared that after her doctor gave her the news, he said, “Go home and put your affairs in order, and I’ll see you in six months.”

Henry, Esther, Robert, and Gene are all living with Alzheimer’s disease. They wanted to speak up in their own voices, share their experiences, and advocate for themselves. It is hard for us to put ourselves in their shoes. The disease is complex as is the attitude towards it from professionals, friends and loved ones. Cancer patients, the mentally ill, disabled people, and others advocate for themselves. For some reason, those with Alzheimer’s Disease are rarely offered the chance.

“We are still quite able. We are the only ones who can best share what it is like to be dismissed, ignored, tossed away, and left for dead before the end.” Robert held his therapy dog close as he spoke. Gene nodded. “We are still very much here. The disease takes years for most of us. We ask that you don’t leave us as soon as you hear the diagnosis. We are still men and women, husbands and wives, fathers and mothers and more.”

I left the panel discussion with such admiration for these very courageous people. They deserve their platform with our undying support and our promise to treat them always with the respect and the dignity they deserve.

Article written by Maria Scaros, Executive Director at The Greens at Greenwich in Greenwich, CT.

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