A Great-Grandmother Who Listened

                             

I was born and raised in the Jim Crow racial segregation of the South. I sat behind the signs for white people on the public bus and stood when empty seats were not available for colored people. I drank clear water from the "colored" fountain and attended segregated schools that were not equal. I grew up experiencing America’s daily misery of racial injustice. Like many African Americans who remember being colored, Negro, and Black, my unimportance to the larger society was the norm.

But something special happened to me when I was very young. I bonded with my great-grandmother. I didn’t realize until I was much older that many children did not have or even know their great-grandmothers like I did. I knew a woman who smiled when I entered a room, a woman whose arms hugged me with soft wrinkled skin. I remember a vision crowned with gray hair that made her look like a queen. That was my Mama Lelia.

What really made Mama Lelia so special was that she listened to me, I mean really listened to whatever I had to say. I had plenty to say long before I started school. I think I was around four when I realized this wonder of a woman and I belonged exclusively to each other. I was much younger, and she was much older. We were two extremes creating a close partnership through casual conversations.

I shared everything I saw, heard, smelled, tasted and touched with her in words. She shared her patient power of paying attention. My words poured out from a place of knowing she was eager to hear me. Her gentle smile revealed enthusiastic acceptance that affirmed my worth when she responded with passionate praise such as “That’s so nice, baby” and “Just keep on doing your best!”  

In another world on this same Earth where I lived far away from Mama Lelia’s special haven-heaven, every day was a reminder of how insignificant I was to many people, mostly white people. Signs everywhere told me I was not welcome. Images of brown children were often not popular in a positive way. Because I was colored, I was unfairly denied many beneficial experiences white children enjoyed, including the use of a public library, a warehouse of words I craved, on the same block where I lived. 

Inside our little paradise where I was always appreciated, Mama Lelia listened to me with adoring attention that was far more powerful than either of us could have imagined then. Her loving listening when I yearned so much to be heard helped me know to this very day that my black life matters.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Frances Shani Parker's Website

Hospice Racial-Ethnic Outreach: African American Brochures (Research, Video 1:47)

Hospice services are underutilized nationally among racial-ethnic communities. While several barriers to utilization have been studied, solutions always include the necessity of more outreach to racial-ethnic groups by hospice organizations.

The Leonard Davis School of Gerontology at the University of Southern California researched the outreach possibilities of comprising a brochure of hospice patient role model stories aimed at improving attitudes and knowledge of hospice among older African Americans. They used community-based organizations that included senior centers, community exercise programs, churches, and senior care management services in the greater Los Angeles area. Participants were seventy-one African Americans aged 65 and older.

Hospice brochures with role model stories showcased African Americans who had experienced successful hospice programs. They shared their initial attitudes, beliefs, influences affecting their enrollment in the hospice programs, and outcomes resulting from their participation. The conclusion of this pre-post pilot study revealed that "exposure to a hospice brochure containing theoretically driven, culturally parallel, role model stories was effective in improving knowledge of and attitudes toward hospice as well as intentions to enroll a family member or self in hospice care.”

The hospice philosophy promotes the entitlement of quality end-of-life care for everyone. Culturally sensitive brochures are among many examples of what hospices organizations committed to that philosophy can do to enhance community outreach. In this video, Treasure Coast Hospice of Florida shares testimony from role model Marian about her positive hospice experience while caring for her sister Valerie.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Alzheimer's Disease: African American and Hispanic Survey Results

“The older I get, the less I remember.

She’s getting old and forgetful.

His mind goes blank since he turned seventy.

Do you hear comments like this a lot from senior citizens? I do. Many people equate old age with loss of memory. But a recent scientific survey concluded that almost 70% of African Americans and Hispanic families who have relatives with Alzheimer's disease dismiss their symptoms as part of aging, compared with about half of non-Hispanic whites.

This research information resulted from a survey released by the Alzheimer’s Foundation of America. The telephone survey included 655 adults. Another conclusion of the survey is that African Americans and Hispanics were less likely than non-Hispanic whites to place relatives with Alzheimer's disease in nursing homes or assisted living facilities and more likely to rely on support groups. I know these choices are often based on cultural reasons. No doubt, hospice placement also would have ranked low if it had been surveyed.

These survey results indicate the need for more information outreach about Alzheimer’s disease, particularly among communities of color. The results partially explain why African Americans and Hispanics are often diagnosed late. More corrective measures should take place to prevent further racial-ethnic health disparities regarding Alzheimer’s disease.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog

Hospice: AIDS Drug Too Late Again

Years ago, before I became a certified hospice volunteer, I found myself in the unexpected position of giving ongoing assistance to two men with AIDS. I was a hospice volunteer then and didn’t know it. The first man died. The second man, who was diagnosed with AIDS a year later, had the great fortune of living with AIDS during the same time that protease inhibitor drugs revolutionized treatment of the disease. The multi-drug "cocktail" changed AIDS from being an automatic death sentence to a chronic, but manageable, disease. The number of AIDS-related deaths decreased. Unfortunately, the prevalence of AIDS continued to increase. Infected people were living longer. New cases continued to develop, with particularly high rates among African Americans.

I thought the new drugs would be successful in helping everyone who had AIDS. But a January 2, 2007 news article by James Ricci titled “AIDS drug offers hope, but too late for one man” in the “Los Angeles Times” reports otherwise. Warren Ratcliffe and Mark McClelland are two men among an estimated 40,000 Americans whose illness could not be controlled by modern drugs. They'd developed resistance to them. Their only hope was to stall the virus by receiving “salvage therapy” to stay alive until a new drug was discovered that could help them.

That amazing new drug, an integrase inhibitor, was finally discovered in 2006. While it came in time to save McClelland, it came too late for Ratcliffe, who died at age 59 of AIDS-related cancer. Once again, a man and many others, died before they could benefit from a new drug discovery. So far, McClelland seems to be responding well to the drug. Dr. Steven Deeks, a UC San Francisco salvage therapy authority, hopes that during 2007, other surviving salvage therapy patients will develop immune systems that can rebuild themselves.
Note: See comments section to view AIDS videos.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog

Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present

A recently published book that stands out in my mind these days is Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (Doubleday) by Harriet A. Washington. This book struck me as profound and groundbreaking in the information it presents relative to America’s health care system and statements I made in a previous blog about hospice care and people of color.

Medical Apartheid goes far beyond the well known Tuskegee Institute Syphilis Experiment, in which the U.S. Public Health Service allowed almost 400 black men with the disease to go untreated, while pretending to treat them. Ultimately, the men died and unauthorized autopsies were done as part of the experiment.

This book reveals numerous documented atrocities of involuntary experimentation targeting black people, including those in military and prison environments. Some incidents occurred as late as the 1990’s, such as the injection of Fenfluramine into black children in New York. This drug made up half of the deadly, discontinued weight-loss drug Fen-Phen and was used by Columbia researchers investigating the genetic origins of violence. Further emphasizing racial and ethnic disparities, the author mentions experimental research in Africa, Asia, and Latin America.

So many abusive incidents are mentioned, including several even worse than the Tuskegee experiments, it is little wonder that many people of color still regard the health care system, including hospice programs, with deep distrust. I agree with the author’s intent to present this well researched information, particularly those previously unpublished incidents, so we can all be more informed, vigilant, and empowered in our dealings with researchers and health care institutions.

You can read more about cradle-to-grave African American healthcare disparities at this blog post I wrote: https://www.linkedin.com/pulse/african-american-pain-treatment-disparities-emergency-parker?trk=mp-author-card

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog