In Search of Lost Time
The images of Hurricanes Harvey, Irma and now Maria are so fresh in our minds. First victims expressing how appreciative they are for surviving, then moving on to talk about their loss. But its seldom in terms of monetary possessions. Tears flow when they recount the photographs, the birth announcements, the family bible-now gone. These are the things that hold our memories, key reminders of our identity. Memories tell us where we have been and who we are. That’s why Alzheimers, the robber of memories, is the cruelest of diseases.
Right now more than five million people in this country have Alzheimers. African Americans are twice as likely as whites to suffer from late stage Alzheimers. Because we are living longer experts say these numbers are going to climb. By 2050 more than 16 million people in this country could have Alzheimers. Worldwide it’s estimated 44 million people have this disease, while one in four people have not even been diagnosed. The economic costs are both catastrophic and unsustainable unless we take action.
Now obviously I am not a doctor or researcher so I can’t come up with a cure but I am a journalist- a storyteller. And I came across a fascinating program in London that is finding some application in the states. It's called a Life Story Book. Stories of people with Alzheimer's are written down. These “this is your life” vignettes tell of the person’s experiences growing up, the music they listened to, the foods they ate, the people they loved. The idea is to paint a more complete picture of this person who is now being robbed of the very thing which makes us human-our memories.
In essence these life stories help caregivers working in nursing facilities connect with their patients. It’s also believed it may help people in the early stages of the disease improve the quality of life and even provide possible clues to the disease. Family caregivers can benefit from these life stories-although bittersweet since it is a reminder of what’s been lost. Finally these shared stories could help remove Alzheimer’s stigma. And sharing these stories could help break down the walls of mistrust currently blocking the medical community. The mistrust is historical. It’s the legacy of a system that discriminated and worse. The Tuskegee Experiment which allowed syphilis exposure to unknowing African Americans is still fresh in the minds of many older citizens. Seen in this context distrust is understandable. But as long as it exists, it keeps us from being full participants in the health care system- specifically clinical trials. African Americans are woefully unrepresented in these trials which are in the vanguard of finding cures and treatments. Without the valuable information that comes from such trials,
we can not know how the disease impacts blacks differently from whites. And without that information we can’t come up with effective treatments or a cure.
When I started sharing my interest in this subject, everyone seemed to have a loved one who is either fighting Alzheimers or is a caregiver. Over the decades Alzheimers has claimed the heroes and sheroes of our community from Sugar Ray Robinson to Rosa Parks. Some of our brightest lights have been vanquished by this disease. In Philadelphia, beloved Lawyer and Civil Rights Activist Charles Bowser died from Alzheimers. Currently Harvard Professor Charles Ogletree and Businesswoman and Restauranteur B Smith are in various stages of Alzheimers. These stories need to be told as do their caregivers -unsung heroes who are daily dealing with unfathomable challenges. In the case of B Smith and Dan Gasby- the couple wrote a powerful book on the subject, Before I Forget. And Dan Gasby as caregiver, periodically makes facebook posts which are both uplifting and shattering. Like Life Story Books- these stories need to be shared.