With the publication of my book, “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” I understand now why other authors refer to this occasion as giving birth. There was definitely a great deal of labor involved with many new people, experiences, and lessons learned along the way. As with any birth, this milestone represents a beginning that continues to evolve with time.
It is my hope that “Becoming Dead Right” will encourage more death conversations, empower the reluctant, and bring visions of overlooked death-related plans into reality. I want this offspring of mine to support caregivers, share perspectives of diverse people, and foster intergenerational partnerships. Most of all, I want my progeny to improve healthcare and nursing homes for everyone, especially the elderly and terminally ill. I want a lot. A parent should.
I thank everyone who supported me throughout this process. You were my standing ovations when I didn’t know when, where, or why you were clapping. Writing is such a solitary activity, it’s easy to get swept away by inner images and voices. But I know and honor who you are.
“Becoming Dead Right,” a guide to scenic routes leading to successful end-of-life journeys, can be purchased at my Web site, Amazon.com, Barnes and Noble bookstores, and other booksellers.
You can listen to a podcast interview with Jake D. Steele and me at www.AuthorsAudio.com.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Friday, September 28, 2007
Caregiver Stress Solutions (Video 1:40 mins.)
Caregiving and stress hug too much. While many caregivers welcome the opportunity to give of themselves to their loved ones, they still find the challenge overwhelming sometimes. Then there are caregivers who never wanted the job. Perhaps they were the only ones available who would step up and accept responsibility for a difficult problem. They need help the most. Stress can take a serious physical, mental, and emotional toll on caregivers. For that reason, caregivers must always be mindful of taking care of themselves.
Probably what caregivers need most is for others to be their caregivers in some ways. The Alliance for Aging and Research reports that surveyed caregivers expressed these concerns:
1) They want programs that save them time, give them a rest from caregiving, and make them feel that they are cared about.
2) Six in ten caregivers say they would be somewhat likely to use the services of an expert they could talk to about their stress. About the same percentage would use a mobile health service in their neighborhoods.
The average person can help a caregiver in several ways:
1) Offer to assist a caregiver by temporarily relieving some of their burden physically or financially.
2) Share an uplifting activity with them.
3) Keep them informed about services that can help them. Aid them in getting the services.
4) Be a good listener and offer encouragement.
This video shows the stress of caregivers and their need for support.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Probably what caregivers need most is for others to be their caregivers in some ways. The Alliance for Aging and Research reports that surveyed caregivers expressed these concerns:
1) They want programs that save them time, give them a rest from caregiving, and make them feel that they are cared about.
2) Six in ten caregivers say they would be somewhat likely to use the services of an expert they could talk to about their stress. About the same percentage would use a mobile health service in their neighborhoods.
The average person can help a caregiver in several ways:
1) Offer to assist a caregiver by temporarily relieving some of their burden physically or financially.
2) Share an uplifting activity with them.
3) Keep them informed about services that can help them. Aid them in getting the services.
4) Be a good listener and offer encouragement.
This video shows the stress of caregivers and their need for support.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Tuesday, September 18, 2007
Advance Directives Written and Sung ("My Advance Directive" Song 4:35 mins.)
Advance directives are important legal documents that guide medical professionals in how to treat patients in such situations as resuscitation. While some patients may want aggressive medical treatment, others may not. Patients can modify these directives at any time.
Healthcare providers are legally responsible for honoring advance directives, and they should be held accountable for implementing them. However, there is no guarantee that procedures patients request will always be followed. That’s why caregivers must be vigilant in keeping abreast of procedures involving patients and making patients’ written requests available.
Caregivers and others can contact local medical facilities for information on the appropriate documents for advance directives. They are not the same in every state. Forms can also be obtained from state health departments, legal offices, and on the Internet. Most states require that the documents be witnessed.
In addition to having written directives, people who want to make their death wishes even more emphatic can sing a song about how they want to die. A rousing song, written and sung by Vickie Hannah Lein, with music by Suzannah Doyle, “My Advance Directive” is a musical declaration celebrating death with dignity.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Healthcare providers are legally responsible for honoring advance directives, and they should be held accountable for implementing them. However, there is no guarantee that procedures patients request will always be followed. That’s why caregivers must be vigilant in keeping abreast of procedures involving patients and making patients’ written requests available.
Caregivers and others can contact local medical facilities for information on the appropriate documents for advance directives. They are not the same in every state. Forms can also be obtained from state health departments, legal offices, and on the Internet. Most states require that the documents be witnessed.
In addition to having written directives, people who want to make their death wishes even more emphatic can sing a song about how they want to die. A rousing song, written and sung by Vickie Hannah Lein, with music by Suzannah Doyle, “My Advance Directive” is a musical declaration celebrating death with dignity.
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Monday, September 10, 2007
Nursing Home Poem on Lonely Residents (Video 1:54 mins.)
As a hospice volunteer, I have seen too many lonely residents. More than once, I have been the only non-staff person regularly visiting a resident. Several of these residents had relatives and friends living in or near the city. One day, a woman at my resident's funeral thanked me for visiting her dying aunt. She said her aunt had been wonderful to her when she was growing up. She added that she didn’t visit her aunt during her years in the nursing home because she lived “on the other side of town.”
I’ve also heard relatives and friends excuse themselves from visiting by saying, “Mama doesn’t recognize me anymore, so she doesn’t know I rarely visit” and “I can’t bear to see my brother in this condition. I don't visit him because I want to remember him the way he was.” Unfortunately, for many residents, loneliness has become a way of life.
A study by Robert S. Wilson at Rush University Medical Center in Chicago concludes that lonely people may be twice as likely to develop dementia linked to Alzheimer's disease late in life than those who are not lonely. Research by University of Chicago psychologists Louise Hawkley and John Cacioppo concludes that lonely people go through life in a heightened state of arousal that becomes more apparent with aging. They also have a poorer quality of sleep, resulting in more daytime dysfunction.
The following poem speaks to the loneliness of residents everywhere, especially in nursing homes:
Missing
She waited,
hoping her years of caring
endured in grown-up minds,
rested in distant hearts,
conveyed how much she missed them.
She waited,
living real-time movies
of restless nights, anxious days
with inhaled hopes of fellowship,
exhaled sighs of deep despair.
She waited,
wishing nostalgic winds
flowed through cotton curtains,
brought relatives and friends
she cherished through the years.
She waited,
grasping like a New Year’s resolution,
like a second suspended in time
until her clock stopped ticking
for visitors who never came.
© Frances Shani Parker
This brief video demonstrates caregiving that helps prevent loneliness.
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Hospice and Nursing Homes Blog
Saturday, September 1, 2007
Detroit Hospice Volunteer Book Review By Dr. Naomi Long Madgett: Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Book Reviewer: Dr. Naomi Long Madgett - Teacher, Editor, Publisher, and Poet Laureate of Detroit, MI
Book: Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Author: Frances Shani Parker, www.francesshaniparker.com
Before I read this non-fiction book, I knew very little about hospice care. I thought a hospice was an establishment where patients with only a short time to live went to die. They were kept as comfortable as possible in pleasant surroundings where family members could spend unlimited time with them. I knew several people who were released from the hospital to hospice care at home during their last days. But I was not aware of any other hospice situations. My knowledge of hospice care has increased greatly.
This book is divided into two sections. The first is titled "Everybody’s Story, Ready for the Telling" and consists of nine chapters. The second section, "Footsteps to Caregiving, Death, and the Future of Hospice," consists of seven chapters. Each chapter ends with a related, well-crafted, original poem by the author.
In the first section, readers are introduced to true stories involving a series of unique individuals. They motivate Ms. Parker, a public school principal, to become a certified hospice volunteer and interact with her during her years of service in Detroit nursing homes. She brings these individuals vividly to life, like characters in a good novel, and makes readers feel that they are present during every situation. Topics such as nursing homes, dementia, pain management, and death are covered in an easily understood manner.
Hospice care, I learned, focuses on a holistic approach to caregiving and supports the dying and their families through high-quality patient care physically, emotionally, socially, and spiritually. The volunteer provides companionship, assistance with normal tasks, and advocacy for patients. Ms. Parker realizes that, although her specific assignments target hospice patients, her compassion extends to other patients. Interesting references to her upbringing in New Orleans, Louisiana enhance her storytelling. She is a dedicated volunteer with a deep understanding of human nature and an intuitive sense of what to do to make death as peaceful and satisfying as possible.
The second part of the book shares information that caregivers can use before, during, and after a loved one dies. Various death rituals and bereavement supports are mentioned. This guidance is helpful to all readers, even those who are young and in excellent health.
Improvements needed in hospice and nursing homes in general are examined. Recommendations include better implementation of the hospice philosophy, upgrading of nursing home conditions and procedures, and the elimination of racial and ethnic healthcare disparities. A significant and original comparison is made between schools and nursing homes. The similarities are remarkable in terms of patients’ and students’ needs, employees’ duties and accountability, and methods that promote success. Service-learning partnerships between schools and nursing homes are encouraged.
The final chapter, "Baby Boomer Haven," consists of an imaginary tour guide escorting readers through a wonderful nursing home. The environment and procedures described during the tour are based on best practices of nursing homes that actually exist today. These practices are lacking in many nursing homes in America. This tour provides a very appropriate conclusion to a fascinating book. A bibliography, resources, and an index follow.
Reading this book was extremely enlightening. Not like any other book I have ever read, it is so interesting and well written that I could hardly put it down. While maintaining universal appeal, perspectives of people of color are emphasized. I highly recommend this book for every individual who has ever experienced the illness and death of a loved one or who ever will. That includes everyone.
© Naomi Long Madgett, Ph.D.
______________________________________________________
Becoming Dead Right (Scary Hospice Volunteer Book Review)
Many people avoid talking, writing, or even reading about the
end of life. This reluctance to face death is reflected in this review of
Becoming Dead Right by a reader who thinks death is her enemy: https://www.linkedin.com/pulse/scary-hospice-volunteer-book-review-frances-shani-parker?trk=mp-reader-card
____________________________________________________
More Praise for Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes from Roger Woodruff, Director of Palliative Care, International Association for Hospice and Palliative Care, Austin Health, Melbourne, Australia____________________________________________________
"A school principal and hospice volunteer, Frances Shani Parker relates her experiences with dying people in nursing homes. The second part of the book is about what we as individuals and as a society must do to improve things for those who are dying. I particularly enjoyed the guided tour, conducted from a wheelchair, of Baby Boomer Haven."
_______________________________________________________
Book Endorsements:
Dr. Peter Lichtenberg - Director, Institute of Gerontology, Wayne State University, Detroit, MI
Alice Hedt - Director, National Citizens Coalition for Nursing Home Reform
Karyne Jones - President, National Caucus and Center on Black Aged
Dr. Naomi Long Madgett - Editor, Publisher, and Poet Laureate of Detroit, Michigan
Dr. James C. Kielsmeir - President, National Youth Leadership Council
Nelda Brown - Executive Director, National Service-Learning Partnership at the Academy for Educational Development
_________________________________________________________
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
Hospice and Nursing Homes Blog
Friday, August 24, 2007
Hurricane Katrina: Nursing Home Evacuation Lessons Learned
It’s been two years since Hurricane Katrina and broken levees caused catastrophic flooding in Louisiana. Most nursing homes did not evacuate residents. Those too ill to sustain the tragedy died as hours of waiting to be rescued turned into days and nights of horror. Nursing home administrative directors plan for future emergency disasters by learning from these experiences.
This 2007 research study, which included Louisiana nursing homes in parishes affected by Hurricanes Katrina and Rita, reports these results in the “Journal of the American Medical Directors Association.” The design included twenty in-depth telephone interviews followed by a focus group conducted in New Orleans, my hometown.
Nine of 20 nursing homes evacuated before the hurricanes, and 11 sheltered in place. Six additional nursing homes evacuated following the storms. The most common perceived consequences related to the evacuation process were resident morbidity or mortality (6 of 15), transportation issues (5 of 15), and staffing deficiencies (3 of 15). Common findings among the nursing homes that sheltered in place included supply shortages (8 of 11), facility damage (5 of 11), and staffing issues (4 of 11).
These were the conclusions, which centered around four general themes:
1) Directors felt abandoned by the state and federal emergency response apparatus during and after the hurricanes. They continue to feel that nursing homes are not a priority.
2) There is substantial physical and technical difficulty in evacuating frail nursing home residents.
3) Staff retention remains a critical problem, regardless of the evacuation decision.
4) There are key "lessons learned" that can be incorporated into future disaster planning.
You can listen to information at NPR.org.
regarding the negligent homicide trial of owners of St. Rita Nursing Home where 35 elderly residents drowned.
Frances Shani Parker
Hospice and Nursing Homes Blog
This 2007 research study, which included Louisiana nursing homes in parishes affected by Hurricanes Katrina and Rita, reports these results in the “Journal of the American Medical Directors Association.” The design included twenty in-depth telephone interviews followed by a focus group conducted in New Orleans, my hometown.
Nine of 20 nursing homes evacuated before the hurricanes, and 11 sheltered in place. Six additional nursing homes evacuated following the storms. The most common perceived consequences related to the evacuation process were resident morbidity or mortality (6 of 15), transportation issues (5 of 15), and staffing deficiencies (3 of 15). Common findings among the nursing homes that sheltered in place included supply shortages (8 of 11), facility damage (5 of 11), and staffing issues (4 of 11).
These were the conclusions, which centered around four general themes:
1) Directors felt abandoned by the state and federal emergency response apparatus during and after the hurricanes. They continue to feel that nursing homes are not a priority.
2) There is substantial physical and technical difficulty in evacuating frail nursing home residents.
3) Staff retention remains a critical problem, regardless of the evacuation decision.
4) There are key "lessons learned" that can be incorporated into future disaster planning.
You can listen to information at NPR.org.
regarding the negligent homicide trial of owners of St. Rita Nursing Home where 35 elderly residents drowned.
Frances Shani Parker
Hospice and Nursing Homes Blog
Sunday, August 19, 2007
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
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
Sunday, August 12, 2007
Hospice CNA/Nursing Assistant Story: “Little White Box” Video (5:13mins.)
Sometimes a nursing home patient needs someone to solve a special problem. The urgency becomes especially important when the patient is in hospice care, and death is imminent. “Little White Box” is a video story from “The Life and Times of Roger Dean Kiser.” A hospice volunteer, I was reminded of a hospice story in my own life when I read this story. In my story, I helped to locate a missing key for a beautiful music box owned by a patient who had never heard the box play before.
In “Little White Box,” Mrs. Mathers, a dying patient, keeps saying, “Before I die, my little white box, please.” But no one knows exactly what she means. To her rescue comes a caring and determined CNA/nursing assistant who successfully solves the mystery. With Celine Dion’s breathtaking singing in the background, this story will grab the handle of your heart and make you smile. Click here and enjoy "Little White Box."
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
In “Little White Box,” Mrs. Mathers, a dying patient, keeps saying, “Before I die, my little white box, please.” But no one knows exactly what she means. To her rescue comes a caring and determined CNA/nursing assistant who successfully solves the mystery. With Celine Dion’s breathtaking singing in the background, this story will grab the handle of your heart and make you smile. Click here and enjoy "Little White Box."
Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
Hospice and Nursing Homes Blog
Sunday, August 5, 2007
Hospice Spirit Sightings (Video: 3:47 mins.)
Sightings of spirits are not unusual for hospice patients. I have had several patients tell me about spirits coming to see them. Patients also spoke about visiting the spirit world, often referring to the place they visited as heaven. Discussions about these visits created opportunities for patients to express emotions openly about death, while reflecting on life. They enjoyed describing their visitors and their trips. Their detailed conversations explained to me, not only whom they saw, but also the scenery and what the spirits were wearing. Pets were included in these descriptions.
(Below is an excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. )
“What did you do today?” I asked Rose after feeding her.
“Me? I’ve been spending time with my people. I enjoyed myself a lot.”
“Hey, that’s great. Did your relatives drive in from Chicago?”
“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful scenery everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”
“Wow! I guess that’s a place you’ll want to visit again.”
“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”
“Thanks. I would really appreciate that.”
Some say these spirit sightings are chemical reactions in the brain or simply imaginary. Many say they are angels, while others say they are ghosts. What do you think about this mysterious phenomenon of spirit sightings? The following video addresses visions of Steve Jobs. He is widely recognized as a pioneer of the microcomputer revolution of the 1970s and 1980s.
-->
(Below is an excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. )
“What did you do today?” I asked Rose after feeding her.
“Me? I’ve been spending time with my people. I enjoyed myself a lot.”
“Hey, that’s great. Did your relatives drive in from Chicago?”
“No, I went to heaven. It’s the nicest place, all clean and bright with beautiful scenery everywhere. I saw my family and plenty of my friends. They all wore long white gowns.”
“Wow! I guess that’s a place you’ll want to visit again.”
“Oh, I’ll definitely be going back. I’m planning to go stay there when I die. I’ll see if I can help you get in, too.”
“Thanks. I would really appreciate that.”
Some say these spirit sightings are chemical reactions in the brain or simply imaginary. Many say they are angels, while others say they are ghosts. What do you think about this mysterious phenomenon of spirit sightings? The following video addresses visions of Steve Jobs. He is widely recognized as a pioneer of the microcomputer revolution of the 1970s and 1980s.
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
Monday, July 30, 2007
Service-Learning Intergenerational Partnerships: Schools and Nursing Homes (Students' Research Link Included)
What if I’m a student who needs mentoring, diverse experiences, and opportunities to share my skills with others? What if I’m a nursing home resident wishing I had some visitors, thinking I can still make positive contributions, looking forward to interacting with young people? If this sounds like a match between an itch and a scratch, you’ll understand why service-learning is so important.
Service-learning is a teaching and learning approach that connects learning with meeting community needs. It’s not the same as community service, although that’s another good service practice. Service-learning evolves from learning objectives in a school or community group setting. For example, after students learn how to write letters, service-learning would include writing letters to community people who would benefit from receiving their letters. Of course, service recipients might show their appreciation by writing students letters in response. The exchange is usually win-win.
Nursing homes are ideal places for students to visit and share what they are learning in school. Residents provide welcome audiences for students eager to perform their skits, songs, and poetry. Students can display and explain class projects and interview residents in supportive environments. Afterwards, they can mingle with residents and let the magic of intergenerational communication work to everyone’s mutual benefit.
Because teachers prepare students well before their nursing home visits, students know what to expect. If a resident falls asleep or cries, students understand why that’s okay. The word "dementia" can be added to their vocabulary with relevance and meaning. They are open to the experience of being with the elderly and the challenged. They take pride in the roles they play in enriching lives. After they return to school, students reflect on how the nursing home visit affected them, what they learned, and ways to share that information with others.
You can view our fourth graders' ageism research at the link below. This resulted from their partnership with nursing home residents:
https://www.linkedin.com/pulse/intergenerational-service-learning-student-nursing-home-parker?trk=mp-author-card
Note: Winner of the National Service-Learning Partnership Trailblazer Award, Frances Shani Parker, an eldercare consultant, hospice volunteer, blogger, and former schoolwide service-learning principal, has been instrumental in implementing service-learning in school districts across the country.
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
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