Each of us is living our own story. Whether our stories inspire one another or cause us to be resistant it is important to hear the stories of others. Another’s story may open our hearts and minds to a new way of seeing the world or of seeing ourselves.
As Barry Lopez says,
“Everyone is held together with stories. That is all that is holding us together; stories and compassion.”
This website is intended to be a place where people living with dementia and those who are caring for them can share their stories. Others can come to the site to listen, read and watch what will be shared here – and, perhaps new understandings can unfold. My hope is that this site can be a bridge to greater awareness and compassion.
The heart of my work seems to have always been about building bridges – between people, between communities – over terrain that for whatever reason has been a divide. There seems to be no better way to build a bridge than to listen and when a thread of common concern, of shared humanity, of mutual interest emerges, build upon that thread.
My dad had dementia, which started in the mid-1990’s, when there wasn’t much information on how to manage the losses. I realized early in his illness that my responses to him were intuitively different from others. It was important to me that he be supported and companioned, not corrected as others tried to do.
As my interest in dementia grew an opportunity was offered to me to be the Major Gifts officer at Columbia University Medical School’s Taub Institute for Alzheimer’s Disease and the Aging Brain. I received an amazing gift in working closely with the faculty there, many of who were world-renowned, but it was from a donor/care partner that my own path in the work was made clear.
This donor who had been the senior executive in a major corporation with a huge staff was now the solo care partner for his wife. In a visit to their home I observed his treatment and care of her that was so filled with respect and tenderness that I knew I wanted to be directly involved with helping change the way people responded to those with a diagnosis of dementia.
The divide between those with a diagnosis and those who do not have a diagnosis is textured with fear, anxiety, lack of information, lack of interest and myriad other things. But those with a diagnosis need human connection as much as anyone, no matter where they are in the progression of their illness – so it is incumbent on us to find the threads of our common humanity on which to build bridges of connection.
It has been our experience that when those with the diagnosis can share their stories, either in short anecdotes, thru poetry or storytelling, it has been a kind of revelation for others – for those living with dementia, to hear another speak of what they are also experiencing as well as for those who do not have a diagnosis but had never heard first-hand what it is like to live with dementia.
Please join us here to listen, watch and read the stories and anecdotes of those who are living the journey of dementia – those who have a diagnosis, those who are care partners, those who work closely with both.