Hospice and Nursing Home Poem: Volunteer-Patient African American History

My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes concludes each chapter with an original poem. I was inspired to write this poem while watching my hospice patient sleep. I thought about our common history that bridged our communication beyond her dementia and enhanced my respect for all she represented.

Deeper Than Words

The outside world arrives
wearing my willing face.
Toothless, your smile widens
like a baby’s hungry for attention.
Almost ninety-eight years old,
your inner candle still glows.

A hospice volunteer, I lean closer,
talk into your listening left ear,
“Today is Sunday, Miss Loretta.”
My news drifts away like smoke.
You stare at me through dying coals.
Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms
while your hazed mind masters sleep.
Watching you, I dream generations
of women, black and strong, each one
a book of sustaining stories
about joy, pain, courage, survival.

Within your warm brown frame,
spirits from our common history linger.
Aides say you have dementia,
that you don’t know a word I say.
Our language goes deeper than words.
We speak to each other’s souls.

© Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Culture Change in Nursing Homes: What Works, What Doesn’t (Video: 1:59 mins.)

Most people agree that changes in the stereotypical, traditional nursing homes are long overdue. What makes a nursing home really feel like home? What needs to happen to make that a reality? What are some of the barriers that negatively impact progress? A University of Pennsylvania research study about culture change in nursing homes focused on these concerns. After staff interviews were done, three nursing homes reported these results:

Barriers to Change

1) Exclusion of nurses to culture change activity (While nursing assistants were not mentioned here, I’m inclined to believe they were also excluded.)

2) Perceived corporate emphasis on regulatory compliance and the "bottom line” (money)

3) High turnover of administrators and caregivers

Promoters of Change

1) A critical mass of "change champions"

2) Shared values and goals

3) Resident/family participation

4) Empowerment at the facility level

Clearly, changing nursing homes successfully involves input
from all levels of staff, residents, and community. Incentives encouraging achievement of new and shared goals are also effective.

You can read more details about this study here.

You can view this video on the importance of inclusiveness in culture change proceedings.

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

Healthcare Disparities: Do You Treat Patients Differently Based on Race or Culture? (Video 3:43 mins.)

During my healthcare research, I have repeatedly come across data revealing major disparities in America’s healthcare system. Overwhelming evidence indicates that these disparities negatively affect certain racial and ethnic groups. America’s long history of overt and covert racism, with all its stereotypes and discrimination, continues to pervade its institutions in ways underestimated by many people, including those who are victimized by it. In my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, I address this urgent matter:

“The responsibility for changing attitudes that cause disparities within the healthcare system rests with that system. This is not only a healthcare issue, but also a moral one. This system cannot continue to sit down in the middle of an unjust road, cause harm to others, and not be held accountable. Healthcare providers must own the fact that a large amount of research on disparities in racial and ethnic minority healthcare is true and make every effort to demonstrate equitable practices.

Better education in racial and ethnic cultural sensitivity, however, is not enough. Negative stereotypes are activated with and without intent, particularly in high-pressure work environments. Serious accountability from healthcare providers must include rewards and penalties. Incentives should be offered to encourage healthcare institutions to work diligently at lowering their incidents of disparities negatively impacting racial and ethnic minorities, as well as women and low economic groups. Solutions must be implemented with ongoing monitoring. Disparities of the magnitude that exists now will not be willed away.”

There is a tendency among some healthcare workers to assume that the solution to this problem rests with leaders of the “institution” when, in fact, it belongs to each person making up the institution. The question “Do you treat patients differently based on race or culture?” is one that every healthcare worker must explore at a personal level with honesty. In spite of overwhelming research to the contrary, most responders still say, ”Oh, I’m colorblind. I treat everybody the same.” Recognition of the problem is the first step toward improvement. Racial and ethnic disparities must be eliminated before America will ever realize true equality in healthcare among its diverse populations.

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

This video defines and addresses the need for healthcare cultural competency:

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

Rural and Urban Hospice Financial Comparisons

If I asked you which hospices, rural or urban, face the most financial disadvantages, which would you say? According to reported research in the “Journal of Pain Symptom Management,” rural hospices fare no worse financially than urban hospices, at least in California.

In the California study, 144 hospices were urban and 44 were rural. Adjustments were made in financial performance factors such as size, years of operation, profits, insured patients, etc. Compared with urban hospices, rural hospices were at least as profitable per patient-day, and they were determined to be “significantly” more profitable than urban hospices when charitable donations were excluded. This study concluded that rural hospices fared no worse financially than urban hospices. These results indicate a need to look further into comparisons of rural and urban hospices on a national level. If any of you have reasons to disagree with or support these results, please let me know.

You can read more details about this study here.

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

Hispanics: Caregiving and Diabetes Research (Video 1:49 mins.)

As a hospice volunteer in Detroit nursing homes, it was not unusual for me to have regular contact with patients who had dementia. One patient named Raynell (pseudonym) is particularly memorable because she had both dementia and diabetes. This excerpt from my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” describes how she attributes her diabetic symptoms of tingling and numbness in her legs to an imaginary man named Robert who was in love with her.

“Robert was an imaginary man who passionately loved Raynell, my eighty-year-old hospice patient. It could be said that he shared a room with Raynell and her three roommates. His presence demanded my attention many days when I went there to visit her. He stole sweetness from the moment by repeatedly pinching Raynell’s stout legs. He made her feet rise by pushing up her mattress. Strategically positioned near the foot of her bed, he escaped under it quite easily. That’s how Raynell explained the turmoil he caused her. I pulled up a chair in her world each week and made myself at home. While I respected her condition, often letting her take the lead in our discussions, I always remained mindful of my role as volunteer.“

© Frances Shani Parker

“Medical News Today” reports results of a study released by the United Health Group's Evercare® organization and the National Alliance for Caregiving (NAC) with these results:

1) In America, more than one third of Hispanic households (36 percent) have at least one family member caring for an older loved one. This is a larger percentage than other U.S. households.

2) More than four in 10 Hispanic caregivers (41 percent) have changed their work situation either by cutting back on hours, changing jobs, stopping work entirely, or taking a leave of absence. This is compared to 29 percent among non-Hispanic caregivers.

3) Most Hispanic caregivers are taking care of loved ones with diabetes, including 23 percent of loved ones with a form of dementia.
A 2007 Centers for Disease Control and Prevention national examination survey indicated that Mexican Americans are twice as likely as non-Hispanic whites to be diagnosed with diabetes and 50 percent more likely to die from diabetes as non-Hispanic whites

4) Reasons for Hispanic caregivng included family obligation (84%) and religion (93%).

This video titled “UMTV Latinos Living With Diabetes” showcases the Institute of Minority Health Education and Research founded by Patty Larraga.


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

Hospice Care: Can Miracles Save Lives? (Video 1:01 min.)

Do you believe in miracles? If so, you share company with many others. As a hospice volunteer, I noticed early on that many patients held strong religious and spiritual beliefs. These beliefs were important to them when making decisions about their medical care.

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), has a community outreach guide titled “It’s About How You LIVE – In Faith" to help hospice organizations engage faith communities with end-of-life issues. This guide, done in collaboration with the Duke Institute on Care at the End of Life, is available at the NHPCO website for free downloading.

In this Fox News video clip, viewers witness the miracle of Val Thomas, a woman who was technically dead for almost 18 hours after two heart attacks. Rigor mortis had even set in. Yet, she lives!

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

Delaying Dementia with Bilingual Ability

Can you speak more than one language? If you can, you may have a better chance at delaying the onset of dementia symptoms. Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Many conditions can cause dementia, but Alzheimer’s disease is the leading cause. Most people who have the disease are over sixty-five, with eighty being the average age of diagnosis.

Toronto researchers say that fluency in two or more languages may be able to stave off cognitive decline because of the mental agility required to juggle them in day-to-day life. Principal investigator Ellen Bialystok, an associate scientist at the Rotman Research Institute of the Baycrest Center for Geriatric Care, states, "How you learn the language probably doesn't make much difference; how good your grammar is probably doesn't matter. What matters is that you have to manage two complete language systems at once."

Among the unilingual people studied, dementia began to appear in men at an average age of 70.8 and in women at 71.9. Among those who knew two or more languages, dementia did not begin to appear in men until an average age of 76.1 and in women until 75.1.

You can read more about this research in this “Toronto Globe and Mail” news article.

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

Hospice Volunteer Memorial for Deceased Patients: Christmas Remembrance Tree (Video 2:57 mins.)

Hospice workers experience patients’ deaths on a regular basis. The frequency of these experiences can sometimes cause the individuality of each death to be overshadowed by the totality of them all. Al Poeppel, a hospice volunteer, has found a special way to honor each of his departed patients during the Christmas season.

The outdoor Christmas remembrance tree created by Poeppel is his labor of love. The decorated tree celebrates his deceased patients, supports their families, and encourages introspection among the general public admiring the impressive tree as they drive by. Each tree ornament bears a deceased patient’s name that helps Poeppel reflect on the times he shared with that person. Poeppel thinks families appreciate knowing that their loved ones are remembered. He also hopes that the tree reminds others of the importance of making the most of life.

In this video, you can view Poeppel’s amazing Christmas remembrance tree and hear his heartwarming story.



Season’s greetings to all of you who read my two-year-old blog. I hope the new year brings you many rainbow smiles.

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

"The Curious Case of Benjamin Button" – Intl. Trailer (2:35 mins.)

I’m a little partial to movies set in New Orleans, my hometown, and movies that deal with the elderly and mortality. This movie about a man named Benjamin Button (played by Brad Pitt), who is born in his eighties and ages backward, really grabbed me by the collar. His unusual story covers a time period from the end of World War I in 1918 to the 21st century.



Aging, a fascinating theme, is something none of us can stop, as much as we try to wrestle it to the ground. How extraordinary to live the highs and lows of life’s unpredictable journey, moving toward infancy while others become older! This movie, adapted from the classic 1920's story by F. Scott Fitzgerald, begins December 25, 2008.


Starring: Brad Pitt, Cate Blanchett, Taraji P. Henson, Julia Ormond, Jason Flemyng, Elias Koteas, Tilda Swinton

5 Golden Globe Nominations, including Best Picture



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

Bereavement Support: Holiday Grief (Video Poem 4:00 mins.)

The holidays can be a troubling time for many who are grieving the loss of loved ones. Through the years, people associate holiday traditions with familiar people and places. My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes includes these suggestions for dealing with grief during the holidays:

“Mourners have to decide the best ways they can adjust to the holidays. One option is to create new holiday traditions. If holidays were celebrated as a family, new traditions can be planned as a family, so everyone can have input. This will give family members an opportunity to discuss their feelings about the deceased loved one and possibly include something in the new tradition that commemorates that person in an uplifting manner. This could be a type of memorial that adds pleasure to holidays in the future, something that would have pleased the deceased.

Whether celebrating the holidays alone, with others, or not at all, people should always follow their hearts and do what feels best for them. There is no one way for everyone. There are different ways that work well for different people. Some people who found the holidays stressful, phony, or too commercial before their loved one died may want to redirect their holiday focus. They might choose to participate in an activity that is calmer and more meaningful to them such as volunteering at places where they can help others or sharing with others in another capacity. Others may want to celebrate alone or with a few friends, take a trip to another state or country, or just be involved with something they enjoy doing that may or may not have anything to do with the holidays, but everything to do with their own quality of life."

© Frances Shani Parker

This video by TheLightBeyond.com offers bereavement support based on the sympathy poem “Do Not Stand at My Grave and Weep.” The poem comforts with thoughts that the deceased loved one is reflected in nature.

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

Hospice and Nursing Home Christmas Story

Have you ever celebrated Christmas in May? A hospice volunteer in Detroit nursing homes, I shared a wonderful Christmas in May experience with one of my patients. Sometimes patients needed me to help them solve problems. One day, Inez and I had an especially great visit. I had been thinking about how to find a key for a music box her niece had given her for Christmas. She loved that music box and liked to have it on display, so she would have a good excuse to talk about it. She had never heard it play because the key was missing when she received it. She said her niece had tried to find a key, but with no success.

The music box was a lovely piece of handiwork. A wooden base supported a clear glass container. Inside the container lay a beautiful butterfly resting on a small floral bouquet. Underneath the box was a hidden switch that made the seasonal display enchant with spurts of brightness. Inez, my ninety-two year old patient, said that she often sat and watched the softly glowing scene blink on and off. One night, she and I quietly watched it together. That's when I realized how much this silent little music maker meant to her. Unfortunately, neither of us knew what song it was supposed to play. We imagined the Christmas song we thought it should play and hoped one day we could solve the mystery.

Getting the music box to play became my project, but I knew I would need some help. The next day, I explained the problem to Burton, a teacher at my school. He decided to become a part of the solution by checking out some stores that might have the missing key. It sounded like the search for Cinderella's shoe. After looking for two weeks, Burton finally found a matching key at a large toy store. The sales lady was so touched by his story about Inez's "musicless" box that she gave him the key free of charge. We couldn't believe our good fortune, which became Inez's thrill maker.

In the second week of May with spring showing off nature's fashion makeover from winter, Inez heard her cherished music box play for the very first time. She picked it up gently and carefully placed it near her hearing aid. The song we had wondered about for months, the song that had driven us to discover its name finally played the sweetest version of "Joy to the World." Just hearing the music box fulfill its purpose felt like a miracle. Inez grinned widely, thanked me, and told me to thank the nice man who found the missing key that made her music box come alive.

The mystery had been solved, and Inez was ecstatic. I thought nothing else that day could outdo the pleasure of hearing the music box play, but I was wrong. After Inez set her mechanical miracle on the window sill, so we could admire it playing and revolving, something wonderful occurred that surprised us both: The brightly colored butterfly started moving, slowing creeping up to the opening red flower. Inez and I gave each other eerie "Twilight Zone" looks. Then we shared rainbow smiles about the joy in our own little world.

© Frances Shani Parker (excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Home)

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 Care Perceptions of Nursing Home Staff

In my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” there is a chapter titled “Healthier Hospice.” This chapter gives detailed explanations, based on my research and experiences as a hospice volunteer, regarding ways to improve hospice services in general. Included are variables that can improve hospice implementation in nursing homes. Nursing home staff members who are focused on curing patients may not embrace the hospice philosophy of non-curative care. It is critical that they commit to enhancing and maintaining their expertise in certain hospice practices.

The quality of end-of-life care for any patient depends on the context in which the care is given. In the context of a nursing home, perceptions of staff members regarding the hospice philosophy and the implementation of that philosophy greatly impact a potential hospice patients’ experience. This includes the referral or non-referral of patients to hospice care and the timing of those referrals.

In a study at Southern Illinois University Edwardsville, an understanding of factors influencing hospice referrals, nonreferrals, and timing of referrals was researched. Cross sections of staff members from seven nursing homes and two hospices were interviewed with the following results:

1) Nursing home staff members’ recognition of terminal decline, beliefs about hospice, and the initiatives they took “significantly influenced” patients’ referrals to hospice care and the timing of their referrals.

2) When death was perceived as unexpected (familiar signs not recognized by staff members), hospice referrals were delayed.

3) When nursing home staff members believed that hospice care was only for a crisis at the end of life or that hospice care did not add to nursing home care, hospice referrals were delayed.

4) Patients received longer hospice care when staff members believed hospice care complemented nursing home care and when staff members took the initiative to raise the option of hospice care.

This study confirms how important ongoing hospice training is for nursing home staff members. I emphasize ongoing because, in my experience as a hospice volunteer, regular staff turnover demands this. Without ongoing training, the quality of end-of-life care for potential hospice patients is jeopardized.

You can read more details about this important study here.

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

An Alzheimer’s Disease Support Group for Caregivers (Video 1:48 mins.)

My first encounter with unofficial hospice volunteering took place many years ago when HIV/AIDS was viewed as an early death sentence. I remember my patient saying, “But when I’m with my support group, they don’t care how I look. They can see past the ugliness of my outside. It’s like I’m fighting a war with other people like me on my side. We tell each other any information we know that will make our lives better. Even when it looks like I’m losing the war, they give me hope for the future. I give them hope, too.”

I knew that no amount of reading would ever make me know his pain and suffering. The support group was where he garnered much of his strength and improved self-esteem for dealing with the disease. Many people have a need to share their challenges with someone who has experienced what they are going through. That’s why I have great respect for well-run support groups. Caregivers often need respite time away from patients, so they can share their experiences, gain information from others, and relieve stress.

Frances Cooper is 87 years old. After years of caring for her husband, who had Alzheimer’s (Alz-high-merz) disease, she has accumulated a wealth of advice that can benefit others. She leads a support group that helps caregivers learn strategies for coping with the disease of their loved ones. For example, when her husband insisted that he wanted to go home (meaning the home where he was raised), she simply drove him around the block and returned to the house where they currently lived. This simple solution satisfied him. She also speaks about having her husband sort eating utensils, an activity that some patients with dementia find enjoyable.

You can view a brief clip of Frances Cooper’s Alzheimer’s disease support group for caregivers. Frances Cooper’s caregiver stories have been a source of inspiration and support for many.

If you are a caregiver who would like to share your written caregiver story with others or read stories by other caregivers, visit the Care2tell.com website.

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

Wii Physical Therapy Technology for Senior Veterans in Hospitals (Video 1:29 mins.)

There’s a reason Nintendo Wii Sports sells in the millions worldwide. It attracts many age groups in lively sports activities and encourages intergenerational participation. Recently, however, Wii Sports has become a fun technology prescription for senior veterans to improve their health. Physical therapists all over America are recommending these games that use the Wii remote to mimic actions of real life sports. The “Pentagon Channel Report” informs that senior veterans have become enthusiastic fans.

Wii technology fans at Veterans Hospital in Washington, DC have made bowling, tennis, and boxing their favorites of the five Wii game simulations. The other two are golf and baseball. All the games are played with simplified rules. Wheelchair veterans say playing increases their heart rates. Therapists find that patients arrive on time more when the games are their designated activities. Gaming is serious business for these veterans. And improved health is always a winner.

This video shows older veterans demonstrating that they’ve still got game.

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

Culture Change in a Baby Boomer Nursing Home (Video 2:20 mins.)

In my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” Baby Boomer Haven refers to an imaginary nursing home based on best practices of some, but not nearly enough, nursing homes that exist today. In the last chapter, Ruth, a patient in a wheelchair, takes readers on a nursing home tour where residents and employees thrive in a culture where they feel empowered and respected. Many aspects of culture change are discussed and in evidence.

Roger Woodruff, Director of Palliative Care, International Association for Hospice and Palliative Care, Austin Health, Melbourne, Australia says of this book tour “I particularly enjoyed the guided tour, conducted from a wheelchair, of Baby Boomer Haven."

Book Excerpt:

“Management and staff have a great working relationship. Together they wrap us in a warm family quilt woven with reassurance. Everybody participates in decision-making and attends workshops, classes, and conferences to keep abreast of best practices in their fields. Various staff members are included in the hiring of new employees and, when appropriate, involved in their training. Periodic meetings are held with all shifts represented, so more in-depth information can be provided concerning patients. Employees take pride in their work and strive to continue our tradition of excellence. We’re all part of the same team, and we’re all cheerleaders.”

In this video, viewers are given an overview of how to implement resident-directed care.

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

Homeless People: Advance Directives and Hospice-Palliative Care (Video 1:26 mins.)

When you see homeless people, you might wonder how they came to that condition, why some refuse to leave the streets, if they really care about their health. What about their end-of-life preparations? They probably aren't concerned about completing Advance Directives. Right? Wrong.

There are few studies on the homeless and their preparation for end-of-life care. However, a study by the Center for Bioethics at the University of Minnesota has some convincing results that homeless people do care about completing Advance Directives. The research involved fifty-nine homeless people recruited from drop-in centers. Half were given written instructions to complete Advance Directives in a self-guided manner. Others were given the same directions with guidance in completing them.

The overall completion rate was 44%. A higher completion rate of 59% was earned by those who received guidance in completing the forms. The rate of completion for the self-guided group was 30%. Among all participants who completed their Advance Directive forms, there was a significant decrease in the frequency of worry about death from 50% to 12.5%. Those who filled out the Advance Directive forms increased their plans to write down their end-of-life wishes (56% to 100%) and plans to discuss their related wishes with someone (63% to 94%).

This research concludes that homeless people can appreciate being afforded the opportunity to complete Advance Directives. Although some will complete the forms without help, when time is taken to assist them, they can be especially successful in participating in their end-of-life preparations.

You can read more here about this research from the “Journal of General Internal Medicine.”

This video describes St. Michael’s Nazareth House, where hospice and palliative care are provided for terminally and seriously ill homeless patients.

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

Caregiving: Love, Hatred, Guilt, Joy, Resignation (Video 4:10 mins.)

A caregiver’s role can be a complicated potpourri of love, hatred, guilt, joy and resignation. During my years as a hospice volunteer, I have met caregivers who served in that role for a variety of reasons. These are three examples from my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.”

1) “We held a family meeting when Mom and Pops continued to deteriorate healthwise. They had reached the stage where they couldn’t live alone any longer. Mom almost burned the house down, and Pops started roaming all over the neighborhood asking people where he lived. At the meeting, everybody had reasons why they couldn’t be primary caregivers. They either lived out of town or had other obligations they said interfered. Several of them mentioned that I lived in town and didn’t have as many responsibilities as they did. I don’t know how they could make assumptions like that about what’s going on in my life. I don’t tell them most of my personal business. Anyway, I finally agreed to be the primary caregiver, but only if they would all make a written commitment with me. We made a list of what everybody would do to help on a regular basis. I can truthfully say they all are doing what they promised, including contributing money to our parents’ care. Knowing I can always count on them helps me a lot and makes my parents proud of the way we are handling things.”

2) “If you look at who’s taking care of my daddy now, you wouldn’t know he had three other children besides me. The others hardly do anything for him, and I’m always asking them to help out. Before you start thinking he was a bad father when we were growing up, let me tell you he wasn’t. If you want to know the truth, he was too good to us. My trifling sisters and brothers just took him for granted. Now, they know Daddy is confused with Alzheimer’s disease, so they use that as another excuse not to come see him. They figure he won’t miss them. My siblings are a disgrace. Everything is on me.”

3) “My mother was the kind of person who never should have had children. She was into drugs and the fast life for as long as I can remember. As a child, I prayed for her to change, but she never did. She left us alone a lot, even at night. Finally, my grandmother stepped up and raised my sisters and me. Bless her soul, she died six years ago. We made sure she didn’t want for anything. Now, my mother’s dying, and I’m the only one who will come see about her. My sisters say she’s getting what she deserves for all those years she chose dope over us. I don’t judge them because I know how they feel. I’m still angry with her myself, but I come see about her anyway. I guess I want to be a better person than she is.”

© Frances Shani Parker

Most people don’t set out to become caregivers. Some enjoy nurturing their patients and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out, except the death of persons in their care. For an encouraging visual reminder about caregiving, I refer you to this video “Remember Me,” which is from the perspective of a patient in need of care.

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


"Remember Me", Adult Siblings, Caregiving, Solutions, Video, 

Reading Levels of Hospice Bereavement Materials

The average reading level of most newspapers is 8th grade or below. This implies that most adult readers have a better comprehension of reading materials within that average range. With that in mind, what do you think the average reading level range is for hospice bereavement materials?

The “American Journal of Hospice and Palliative Care” reports this in results of a study by Morehead State University in Kentucky. Bereavement literature, including letters to families, as well as educational and resource materials available to families, caregivers, and the public, were rated in terms of reading levels. The Simplified Measure of Gobbledygook (yes, that’s the name), a readability process that is widely accepted by the literacy community, was used. Results of the study concluded that hospice bereavement materials are written at just above a 10th grade level. These results indicate a serious need for adjusting reading levels of hospice materials to levels more appropriate to those of the general public.

You can read more here about this study on reading levels and hospice bereavement materials.

As an educator, I want to emphasize the importance of having written materials at an appropriate reading level for the targeted audience. The Simplified Measure of Gobbledygook, which is also called SMOG, is a readability process that is widely accepted by the literacy community. It estimates the years of education a person needs to understand a piece of writing. You can read more about readability formulas and use a free SMOG text readability consensus calculator here:
http://www.readabilityformulas.com/smog-readability-formula.php


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

HIV/AIDS and Senior Citizens (Video 2:36 mins.)

Did you know that, according to the Centers for Disease Control, one-quarter of the one million HIV-positive people in the U.S. are older than age 50? Half are expected to be older than 50 by 2015. People tend not to think of HIV/AIDS as an illness of senior citizens, but it is. Compared to HIV negative seniors their age, this population is more likely to experience far more health challenges, including memory problems, depression, liver and kidney problems, and a bone disease linked to medications they take.

Any discussion of HIV/AIDS and seniors must include the importance of their using safe sex practices. Because many senior women are postmenopausal, they may not use condoms with the vigilance they would for preventing pregnancy. More sexual experimentation among seniors, including some increased by drugs like Viagra, also promote the likelihood of unprotected sex. Seniors must be committed to not taking sexual risks.

This video titled “Senior with HIV/AIDS” presents more information and insights on this critical topic.

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Ghost Bike Memorials Honor Killed and Injured Bikers, Raise Awareness (Video 1:05 mins.)

This post about impromptu memorials includes an excerpt from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.”

“Impromptu memorials, which have been around for many generations in this country, are increasing. Publicized terrorists' attacks, natural disasters, crimes, and accidents have united large numbers of people around common bonds of grief. These memorials often begin with a tragedy involving one or more deaths. For example, a child might be murdered or killed in a car accident. Within a short period of time, toys, such as stuffed animals, along with flowers, balloons, posters, cards, photographs, and other memorial displays begin to accumulate at the site where the crime or accident took place.

At some point, community members might come together at that same location or elsewhere for a candlelight vigil of prayers for the deceased as well as prayers for community healing and improvement. The shrines and altars resulting from impromptu memorials touch many people in a personal manner and serve as powerful reminders of the deceased and the cause represented.”

© Frances Shani Parker

“Ghost bikes” are more recent examples of community memorials that are believed to have started in St. Louis, Missouri in 2003. A ghost bike, usually a junk bike painted white and secured near the scene of a tragedy, is the memorial project of a worldwide movement for commemorating deceased or injured bikers struck down by motor vehicles. Appealing to both personal loss and moral sensibilities, ghost bike memorials are being displayed in a growing number of cities. A ghost bike is yet another example of a memorial personalized by loved ones and community members as they unfasten earthly connections with the deceased.

This video shows a" ghost bike memorial for Alice Swanson,” a bicyclist killed on July 8, 2008 in Washington, DC.

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

Hospice Workers and Death Rituals

This post includes an excerpt from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” In a chapter titled “Death Sentences,” I relate the fascinating end-of-life journey of my patient named Lelia. The afterlife is referred to as the Other Side of Through. Because Lelia had very little family support, the hospice chaplain organized her death ritual, which concluded in this manner:

“Our humble circle stood in the front yard of a Detroit nursing home to perform our final death ritual for Lelia. People riding by in cars on a busy street observed a lively group of ecstatic mourners looking upward, enthusiastically singing “Going to Shout All Over God’s Heaven.” Passionate voices resonated like rockets. We released our buoyant balls of bliss floating in a hurry to get somewhere. I imagined Lelia looking on, bobbing her head to the gospel beat. She grinned her toothless rainbow smile that colored our hearts with joy from the Other Side of Through when we all yelled, “Bye, Lelia! Have yourself a good time!”

© Frances Shani Parker

I have been present at several death rituals of hospice patients. As a hospice volunteer in a nursing home, I don’t often see many of my patients’ relatives and friends until the ritual is held. The closure that takes place is often viewed as a final expression of care for relatives and friends of the deceased. However, research by the Orvis School of Nursing at the University of Nevada shows that hospice workers also benefit from such rituals. Not only do the rituals provide closure and an outlet for their grief, they also decrease the risk of burnout and compassion fatigue that hospice workers can experience.

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

Teddy Bears: Companionship, Grief Support, Containers for Cremated Remains

Cuddly bears often have comfort appeal for both children and adults. In nursing homes, many patients with dementia cherish their dolls and bears, sometimes referred to as “babies.” Imagine all the interesting conversations these fuzzy companions share with their nurturing owners.

Hospices use bears for companionship with dying patients and for grief support with families after loved ones have died. Some hospices collect donations of new bears from the public. Others have volunteers that sew “memory bears” made from fabrics of deceased loved ones’ clothing.

Nowadays, people even use stuffed bears as containers for cremated remains (also called “cremains”) of the deceased. Not only for memorial displays, these personalized bears with hidden pouches often accompany their owners during their daily travels. Death seems easier to bear when the gentleness of a soft bear enfolds loving memories.

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

Life After Death: The Other Side of Through (Video: 5:53 mins.)

This post includes an excerpt from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” The book refers to life after death as the Other Side of Through.

Many people believe in life after death. For them, death is a comma, a pause proceeded by a dash into another dimension of life. Others say that life, as we know it while living, is all there is to existence. They consider death to be a period at the end of the final sentence in their life stories.

One day, my patient named Mabel (pseudonym) received a birthday card from her church members. This led to an interesting conversation about life after death.

“Were you active in your church?” I asked.

“Well, not too much. I helped out with a few fundraising activities like the annual church bazaar. I usually worked at the ticket booth. I didn’t want to be too active because I have my own personal views about religion. I don’t see religion the way most of my church people see it, so I stayed kind of low-key. Religion is fine, but I don’t believe in God. I only believe in Jesus.”

“Really? Why is that?”

“Jesus was a person in real life. People saw him and wrote down what he did and what he said as part of history. I know that Jesus existed. He was right there walking and talking in front of people. Nobody can deny that. But God is different. Nobody has really seen him. Nobody knows how he looks or even what he is. That’s why I don’t believe in God. But I definitely believe in my Jesus.”

“What about heaven, Mabel? What do you think of that?”

“If there is no God, then there is no heaven. It wouldn’t make sense to have a heaven without God. That’s how I see it.”

“What do you think happens after people die?”

“What do I think happens? Nothing. They get buried, and their problems are over. Their problems end, and ours continue.”

Mabel’s belief about life after death was one of numerous opinions that people have. Many have thought about the possibility of immortality. They connect it with a soul, reward, and punishment. Some have lived their lives according to those beliefs. For those who believe in an afterlife, there is often a spiritual motivation linked with nature’s cycles of birth and death. They embrace the mystery with faith and decide there is no spiritual death, only a change in their immortal soul’s experience.

Of course, a lot of people say they don’t know what to believe. Scientific research on near-death experiences and other death-related phenomena continues to accumulate data to shed new light on discussions about life after death. Ultimately, people have to decide for themselves what they want to believe.

© Frances Shani Parker

In this KVVU TV video, three individuals, who believe they traveled to heaven during near-death experiences, explain what happened. Did they really cross over to the Other Side of Through? Was it real or a hallucination caused by an oxygen-deprived brain? You be the judge.

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