A Seat at the Table

Earlier this month I had the honor of speaking at the annual Focus on Caregiving Conference hosted by Mount Sinai Hospital’s Wein Center on Miami Beach. It is always a great day and a true honor to be included in the lineup featuring leading physicians, social service professionals and local elder attorneys.

According to their website, “The Wien Center’s multidisciplinary approach incorporates neurology, psychiatry, geriatrics, diagnostic imaging, counseling, social support and referral to appropriate community resources to develop successful and effective treatment options for Alzheimer’s disease and other forms of dementia and memory disorders.” But I know it as the place that treated my grandfather with the utmost care, diligence, professionalism and kindness, led by his physician, the world-renowned neurologist, Dr. Ranjan Duara.

At the end of my speaking session, a nattily dressed middle aged gentleman shook my hand and thanked me for my words. I thought he was a physician sitting in on the event, but in fact he told me he was a person living with Alzheimer’s. He said that he was actively and directly involved with his own treatment utilizing all the best care options prescribed by Dr. Duara. He shared that the stress his diagnosis has put on his family is his greatest motivator to work hard on his treatments and therapies. In fact, he drove to the event himself (relaying the fact that the hospital validated parking!)

He reminded me of my friend, the late Dr. Richard Taylor, who wrote the book Alzheimer’s from the Inside Out. After his diagnosis, Richard helped form a special interest group of people living with Alzheimer’s for the Alzheimer’s Association, wrote a terrific weekly newsletter and traveled the world speaking to, for and about people living with Alzheimer’s disease.

I remembered seeing him about ten years ago, speaking before a packed house of a family caregivers, at the Leeza’s Place in Broward County. A caregiver asked Richard how she could stop her husband from repeatedly asking about their destination whenever they were to go someplace. The exasperation she felt when relaying how she constantly answered the same question over and over within a short time span was mirrored on her face as it grew reader and redder as she spoke.

Richard walked up to her and gently said “I do understand your frustration, but please remember that every single time you answered your husband's question was the very first time he remembered asking it. So instead of receiving a simple response to a rather benign question, he would only see your increasing frustration and anger and not understand why you were in such pain.”

Richard’s words to the caregiver which seemed to resonate with her was “Enjoy the fact that he is cognizant enough to talk with you, because his ability to communicate will someday disappear, and you will miss being able to talk with him.” She hugged and thanked Richard for his words.

To truly and effectively work together against this horrible disease, we all must be heard and all parties' voices respected.

Share your thoughts in the comments section below