Hospice Book Review by Dr. Peter A. Lichtenberg: Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

Hospice Book Review: Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
Author: Frances Shani Parker
Book Reviewer: Dr. Peter A. Lichtenberg, Director, Institute of Gerontology, Wayne State University, Detroit, Michigan

Frances Shani Parker makes death and the dying a vivid part of life in her book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Ms. Parker describes the beginning of her journey into the world of hospice in the early chapters, engaging us in stories about men she knew who had HIV/AIDS and were dying. Her writing is excellent, and we see these men as whole individuals and not just as people dying. Ms. Parker brings her extraordinary gift of being able to see the many aspects of a person even when often these are covered up by pain, disease, or dementia.

Part One of the book contains many stories of people and her experiences with them in nursing home settings. Ms. Parker astutely observes the challenges of nursing home staff as well and eloquently writes some of their stories. Ultimately, we are treated in this first section to Ms. Parker’s love and compassion for those she serves and her humility in serving them. Her writing is tinged with profound respect for the individuals she worked with and helped. Each chapter closes with her lessons learned and her own poetry, much of which is compelling.

In Part Two, Ms. Parker broadens her book and gives advice and resources for the problems of caregiving, funerals, bereavement, hospice, and her dream for the future: Baby Boomer Haven. This part of the book is full of useful guides and facts, which will benefit all people caring for a loved one.

Ms. Parker was a school principal by profession. That title conjures up images of authority and power. It is thus striking that this book brings the stories of urban elders to the fore. Poverty, which so often makes people invisible, is not ignored here, but the stories of the human struggle, fear, kindnesses, and hopes predominate. This may be Ms. Parker’s greatest gift to her readers: bringing to life people and events that are indeed so often invisible. This book is truly a gift. The writing is eloquent and powerful, and the stories are instructive and lasting. After finishing this book, I wanted to do more for other individuals who are dying, for as Ms. Parker so clearly imparts, the dying teach us so much about living well.
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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."

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"I have been working in the hospice industry full time for several years and I have not seen a better depiction of this topic. Ms. Parker's book gives the most descriptive and genuine look into the true nature of hospice. Most people don't truly know the many benefits of hospice. Ms. Parker's book is informative, straightforward, factual, and timely. I think her book should be used for training in hospice courses and within hospice organizations across the country."

Stephanie Bowden, Palliative Care Liaison

"Frances Shani Parker used to be a school principal. Then she became a hospice volunteer and has written about her experiences in nursing homes. I received a copy of her book and it is excellent. I recommend it to anyone who works in a hospice setting, and for all CNA’s as well. I will venture to ask that DON’s and Administrators have a look too. Sometimes people in higher places at nursing homes forget some of Frances’ important lessons."

Patti Green, Co-Writer of CNA Blog Titled Nursing Assistant Resources on the Web

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Endorsements:

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, Poet Laureate of Detroit, Michigan
Dr. James C. Kielsmeir - President, National Youth Leadership Council (Chapter on Intergenerational Partnerships)
Nelda Brown - Executive Director, National Service-Learning Partnership at the Academy for Educational Development (Chapter on Intergenerational Partnerships)

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You can view excerpts from Becoming Dead Right here, including a video poem with over 23,700 views.

You can read another review of the book here by Dr. Naomi Long Madgett - Editor, Publisher and Poet Laureate of Detroit, Michigan

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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

Nurses’ Perceptions of Hospice-Palliative Care Volunteers

What do you think surveyed nurses' perceptions would be about hospice-palliative care volunteers? The “American Journal of Hospice and Palliative Care” reports results of such a survey:

1) Nurses attitudes and what they know about hospice-palliative care volunteers

As a hospice volunteer myself, I have found nurses in general to have positive feelings toward volunteers. Like nursing assistants, many nurses feel volunteers make their jobs easier. Survey results confirm this. However, nurses rated the value of nurses, family members, doctors, and pharmacists significantly higher than volunteers.

Regarding the training of volunteers, 73% of the nurses indicated that they were not sure or did not know what topics were covered, indicating a lack of knowledge about what volunteers are taught.

2) Tasks nurses felt volunteers should perform

The surveys revealed that 53% of the nurses felt that volunteers should know patient medical information, and 77% thought that volunteers should have the opportunity to provide input regarding patient care. In addition, 56% felt that volunteers should be included in team meetings.

Did these results surprise you or did you expect them? You can read more here about this survey on nurses' perceptions of hospice-palliative care volunteers.

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

Children as Caregivers: A Hidden National Problem (Video 2:54 mins.)

Most of us are aware of the millions of unpaid adult caregivers in America. But did you know that 1.4 million children, some as young as eight years old, are also caregivers? Most of their disabled or sick patients, usually parents or grandparents, have Alzheimer’s disease or cancer. Because these young people take on complex responsibilities early in life, they often miss experiences that most children take for granted. Sleepovers and after-school activities can be difficult when an ill loved one needs caregivng available at home. This problem is particularly prevalent in minority communities and among low to mid-income families.

A government study based on two national surveys by Mathew Greenwald and Associates reports that caregiving for young people can include, not only feeding, dressing, and medicating, but also toileting, bathing, and changing adult diapers. It is not unusual for these children to miss school in order to perform their caregiving duties. The emotional stress they carry can be even more harmful to them than the physical burdens. They are also more likely to be anxious and depressed.

You can view this video that gives more information about this seldom discussed problem of children serving as caregivers with adult responsibilities.

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

Hospice and Nursing Homes: Loneliness and Being Remembered (Video 3:57 mins.)

The following includes an excerpt from my book, "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” This chapter titled “Love Food” explores the importance of being remembered and other nourishment patients need to feel whole.

“Everybody at the senior citizen center asks about you all the time,” I read aloud to Jeannine (pseudonym) from a letter she had received earlier that week. “We still meet every week to play bridge and gossip. It’s not the same without you. People say you were the best bridge player. These days, even I’m winning games. Last week, we had our annual spring party. The last time you came, the two of us ate most of the cookies and didn’t feel embarrassed at all (smile). We sure had some good times together.”

Jeannine stopped me to explain everything, just in case I hadn’t understood what I had read. “See, I learned how to play bridge a long time ago when hardly anybody I knew was playing. My friend Laura taught me because she needed a partner to play with her. I learned as a favor to her and to make new friends. I guess I caught on fast. Next thing I knew, I was teaching her a few things. I remember eating those cookies, too. And they were delicious. We played pranks all the time. We were just a bunch of overgrown kids having a ball cracking jokes whenever we got together.”

Jeannine had been going to the center for sixteen years. Now, she was in a nursing home away from the buffet of fun they had created. But none of that mattered today. What mattered was that they still cared about her, and she had this cherished letter to prove it. She experienced a mental feast of enjoyment. I smiled, knowing her satisfaction was caused by something she had eaten, something called love food.”

© Frances Shani Parker

This video explores a patient's loneliness and the importance of being remembered.

Frances Shani Parker
Hospice and Nursing Homes Blog

Terminal Illness: A Mother’s Day Tribute (Video 5:07 mins.)

This post is dedicated to mothers everywhere, especially those who are living with or have died from a terminal illness. The accompanying video is by raindancer808, whose hometown is New Orleans, Louisiana. Honoring her mother with this Mother’s Day tribute, she writes:

“My Mom is in end stage Alzheimer's, and I wanted to do something special for her on this Mother's Day. Even though she will never see this video, it is my way of honoring her, and spreading the message that Alzheimer's is a cruel and fatal disease. For more information, please go to this Alzheimer's Web site."

Click here to view a Mother’s Day tribute.

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

"Young@Heart" Movie Review: A Hospice Volunteer's Perspective (Video 2:12 mins.)

I had been waiting to view “Young@Heart” for several weeks. I heard it was an excellent documentary about a spirited chorus of music-loving senior citizens. Averaging eighty years in age, they thrill worldwide audiences everywhere they perform, including in prison. In the movie, viewers accompany them during a series of rehearsals in preparation for an upcoming show.

Unfamiliar with punk or rock and roll music, chorus members struggle to sing new songs, while dealing with personal challenges and the death of two members during one week. Somehow they squeeze sweetness from every moment with friendship and commitment. Songs like “Should I Stay or Should I Go,” “I Feel Good,” and “Fix You,” the hands-down tearjerker of the day, wrap us in nostalgia, strengthen us with wisdom, and warm us with the creative power of music.

Their bodies may be old, but their hearts are wrinkle-free. Should you stay or should you go? Go. Experience these seniors' moving transformation and your own. Be inspired and entertained by this amazing tribute to aging, life, and death. View the "Young@Heart” movie trailer here.

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

Hospice Volunteer and Nursing Home Poem: Staff Shortage ("Living Colors")

My book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” includes an original poem after each chapter (16).

A previous post dealt with the widespread vision problems of residents in nursing homes and the negative impact poor eyesight has in patients’ lives. Many of these vision problems could be corrected if residents regularly received basic eye care.

This poem was inspired by one of my elderly hospice patients who had dementia and poor eyesight. She needed assistance to eat, but there was a staff shortage at the nursing home that day. Using her fingers, she started feeding herself. I arrived to find her with food smeared around her mouth. After wondering what that experience might have been like for her, I wrote this poem:

Living Colors

A nursing home room
serves as your dining place.
Colors on a supper plate
charm century-old eyes.
Green, brown, white form
an aromatic rainbow
of bygone days that nourish,
thrill you with their stories.

When no one helps you eat,
you reach with forklike fingers.
Green tastes like memories
of grass tickling childhood toes.
Taste buds savor brownness
of a mahogany man who
hungered for your love.
Handfuls of August clouds
whisk you to a picnic,
hint at mashed potatoes.

A volunteer, I arrive to see
your smile smeared with dreams.
Each morsel of remembrance
has fed your starving mind.
Anchored in reality of meals
with special meanings,
your appetite is satisfied
with colors from the past.

© Frances Shani Parker


You can hear me read "Living Colors" with graphics on YouTube.

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

 

Hospice Volunteer and Nursing Home Story: Dying to Die (Video 4:28 mins.)

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

Are you ready to die? It’s something we all will do. Each person has a choice about how to respond to the inevitable. Many people assume that nobody really wants to die, but I have known several hospice patients who looked forward to death. Take Bella (pseudonym), for instance. She said she was all ready to go to heaven, but she kept putting it off because she wanted her death ritual and other plans to be just right.

“I won’t be here when you come next week. I’ll be in heaven. You can call ahead if you want to be sure I’m not here. That way you won’t make a trip for nothing,” she warned me.

“Thanks for telling me, Bella. I’ll just come anyway and see for myself,” I responded like it was the most normal thing in the world. In recent weeks, whenever I left from visiting her, Bella said it was the last time I would see her. She said she would be dead before I returned the following week.

When I returned and she was still alive, I’d say, “Well I guess you changed your mind about dying this week.” Bella always had a good excuse. Sometimes she didn’t want to miss some festive activity like the annual Christmas party at the nursing home. But most times, it was for practical reasons like getting funeral, burial, and other after-death plans in order. She wanted her children to clean her house thoroughly, so relatives and friends could go there to fellowship after her funeral. Cleaning entailed sorting and packing clothes for charity. There were several other tasks beyond actual dirt removal. Her various excuses for not dying continued for months.

Bella even invited me to join her on her death journey. She said it might be more fun if we went to heaven together. I declined this invitation by explaining it just wasn’t my time. Besides, she already had a bunch of people there waiting for her.

But one day, Bella’s warning came true. I received the hospice phone call saying she had died. I smiled to myself and said, “Good for you, Bella! You finally did it!"

What about you? Are you having death conversations that will help you and others prepare for death? Do you think about what death really means to you as a patient, a caregiving relative, or a healthcare professional? This video encourages us to have more of these conversations and prepare for our own and others’ deaths. Using the “D” word is long overdue.

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

Nursing Home Culture Change: The Green House Project (Video 7:33 mins.)

What makes a nursing home really feel like home? That’s a major theme for culture change in nursing homes. Think about how you live in your own homes, and it’s easy to figure out what most nursing home residents want. Cedars Nursing Home in Tupelo, Mississippi is a Green House Project alternative to traditional nursing home living that has put the “home” back in nursing home.

With the intention of developing Green House homes with long-term care organizations around the country, the Robert Wood Johnson Foundation provides grant funding for the Green House model on a national level. At the Green House Project, life in a traditional nursing home has been reinvented. Residents, living in cottages of ten, thrive as families in homes built to blend in with the neighborhood. They add their personal decorating touches, greet the day when they feel like it, plan menus, and eat with the staff. Mealtimes prepared in an open kitchen are unhurried and socially rewarding.

Each elder has a private room and bath with easy access to all areas of the home. Nursing assistants (CNA’s), referred to as “shahbazes” focus on nurturing, sustaining, and protecting residents. Assistance residents receive doesn’t interfere with their independence. View this video of a Green House Project home where home really is sweet.

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

Hospice and Palliative Care: Veterans and Post-Traumatic Stress Disorder – PTSD (Video 7:41 mins.)

The following conversation is from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. I am talking with Nat, my hospice patient who is a veteran of the Viet Nam war. We had many conversations about his life during my weekly visits with him. His story is typical of many veterans who suffer with post-traumatic stress disorder:

“Did you see my flag on the side of the bed?” Nat asked me one day.

I looked again at his small American flag taped to the bed railing and responded, “Yes, I noticed it the first day I came. It’s always there on your bed. I can tell you like it.”

“I fought in a war years ago. Gave the best I could give. I’ve seen and done things you couldn’t imagine. Some of them were horrible, I mean really horrible. Don’t ask me to tell you what they were, because I can’t talk about it. They say time heals all wounds, but it’s a lie. I left Viet Nam, but Viet Nam never left me. I carry it with me everywhere I go. All these years later, I still have nightmares like you wouldn’t believe. The doctor says it’s post-traumatic stress disorder or PTSD. I wake up shaking, gasping for breath with tears in my eyes. In my dreams, I’m always running hard, trying to escape. Sometimes my enemies are close enough for me to touch. I almost stop breathing to keep them from hearing me. I’m constantly thinking I’m not going to make it. Some nights they kill me before I wake up. My dreams are so raw, so real they turn my soul inside out. In real life, I came back alive. A lot of people who served, some of them my friends, didn’t come back. That’s why I keep that flag there all the time. It’s out of respect for those who came back in body bags; it’s for those still struggling with physical and mental injuries. It’s the least I can do for them.”

Nat is like many men and women who have served our country during World War II and wars in Korea, Viet Nam, and Iraq. He suffers with repressed fear and sadness resulting from his war experiences. Hospice and palliative care for veterans, like the Hospice of the Western Reserve in Cleveland, Ohio, includes healing opportunities for patients to express feelings they have stored inside for years. Veterans and their families receive post-traumatic stress disorder education and support. Patients are often paired with volunteers who are also veterans. Being able to “let go” of the horrific burdens of PTSD is important at any time, but especially for closure during the final phases of life.

In this video titled “Welcome Home,” veterans share some of their agonizing service memories, including burial at sea.

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Alzheimer’s Disease and Hospice Volunteering in Nursing Homes (Video 3:10 mins.)

The following includes an excerpt from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” This chapter titled “Mealtime Gathering” explores Alzheimer’s disease and patients’ mealtime interactions at an inner-city nursing home experiencing a staff shortage. I am seated at a table with several patients, most in varying stages of dementia. Alzheimer's disease is the most common form of dementia. Fictitious names are used.

“Some patients were confused about which utensils to use. They tried to eat soup with a fork if they were not guided to a spoon. For a few, the tray of food was more like a tray of colors that smelled like food. Sometimes with pureed food, they had no idea what they were eating, and neither did I. Fortunately, a menu came with each tray. At another nursing home, I had observed a nurse aide telling a blind patient everything on his plate when she sat his tray in front of him. He grinned with delight the whole time she went down the list of foods. That’s why I started telling my hospice patients what was on their plates. Even those who could see didn’t always know what was there.

I continued talking to Naomi, my hospice patient, and assisting her while monitoring others at the table. I noticed that Petra had not touched anything. Petra was not a very independent eater, but I knew she was physically capable of feeding herself.
“Petra, your food is just sitting there getting cold. You have a whole tray of delicious things to eat. You should eat some and see how good it is. You’re a good eater. Eat your food.”
“Food? What food? I don’t have none.”
“The food on this tray is all for you, Petra. This is your food tray right in front of you. Watch me point to each item. You have coffee, juice, milk, mashed potatoes, fish, broccoli, bread, and fruit. That’s your name spelled P-e-t-r-a.”
“That’s not my name. My name is Petra. That’s somebody else’s name. That’s not my name. I know my name.”
“Well, that is still your food on the tray. You should eat before it gets cold. Go ahead and eat. Give it a try.”
“Eat? Eat what?”
“Your food, Petra, your fish, potatoes, and everything else.”
“Fish? What fish? I don’t have none. Do you see a fish here? I don’t see a fish. I don’t have none.”

From previous experience, I knew that Petra and I could go on roaming forever around this same circle. Luckily, she was sitting next to me. I gave her a taste of the fish because I knew she liked it. Then I placed her fork in her hand and started her off eating. I did this in steps by steering her hand and giving her directions on putting food into her mouth, chewing, and swallowing. Patients with dementia needed tasks broken into simple steps. Usually, she ate for a while by herself, even with her hands, once somebody started her off. Without any help, she sat and looked at the food she said was not there. My other hand continued to assist Naomi.”

© Frances Shani Parker

This video explores stages of Alzheimer’s disease.

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

Wii Rehab in Nursing Homes: Physical Therapy Technology for Seniors (Audio: 3:32 mins.)

The popularity of Nintendo Wii games continues to grow in senior citizen communities. Some physical therapists have finally decided to ride that winning Wii horse, too. Wii is being used to help patients recovering from stroke or closed-head injuries. Patients can have energetic fun while going through the motions of actually playing a variety of sports that will help them heal.

At Stratford Village in Midland, MI, residents with wheelchairs and walkers can participate in various Wii challenges. The handheld “Wii-mote” is used to simulate body movements of actual sports. One 87 year old, who was working on her upper body strength, beat her own son after three rounds in a virtual boxing ring. When no human partners are around, residents can play Wii by competing against the computer.

Where is all this enthusiasm for Wii going? Nobody knows. The American Physical Therapy Association wants more research to prove just how effective Wii really is for rehab purposes. In the meantime, you can listen to an audio NPR.org. account of how therapists look to Wii games for rehab benefits. At last, couch potatoes can show how athletic they really are.

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

Detroit Hospice Volunteer Interview (Podcast) with Frances Shani Parker: Patient Advocacy, Nursing Homes, Acceptance of Death

You can listen to this Detroit Today podcast interview hosted by Craig Fahle at WDET 101.9 FM Radio.

The following conversation is from Becoming Dead Right. It is an example of a hospice patient’s acceptance of death that I refer to in the Detroit radio interview above. The patient is having this discussion with me:

“How old did you tell me I was?”

“You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”
“A hundred years old is too old. I don’t think I want to be that old.”

“There are three other ladies in this nursing home who are older than that. One is a hundred three. We talked to her last week during your wheelchair ride.”

“How much longer will it be before I make a hundred? I don’t know if I want to wait too much longer.”

“It’s only one more month. I remember you said you had spiritual talks with your minister. If you decide to wait, I’ll get you a big balloon that looks like a birthday cake.”

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.” And that’s exactly what she did.

Praise for Frances Shani Parker's book 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 turned 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."

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

Brain Atrophy of Elderly in Nursing Homes: Racism, Social Inappropriateness, Depression, and Problem Gambling

An African American, I have experienced racism my entire life. A child raised in the Jim Crow South, I was reminded every day of my unimportance. Up North in Michigan, I live in one of the most segregated states in America. The continuing documentation of racial-ethnic healthcare disparities in America speaks for itself.

I wasn’t surprised at all when several African American nursing assistants (CNA’s) I spoke to at nursing homes in both Michigan and Massachusetts complained about being targets of racist comments by their elderly white patients. What was interesting in a few instances was that the comments were overheard by the patients’ relatives who said they were shocked after hearing them. Some relatives even apologized to the nursing assistants for the behavior of the patients. According to these relatives, they had never heard the patients make racist statements during all the years they had known them.

These incidents came to mind when I read this research from “Current Directions in Psychological Science” about brain atrophy, which is a gradual shrinking of the brain that includes significant atrophy in the frontal lobes where executive functioning occurs. The study reports that the results of this atrophy include decreased inhibitory ability in late adulthood that can lead to unintended prejudice, social inappropriateness (such as publicly asking personal questions), depression, and problem gambling. University of Queensland psychologist Bill von Hippel explains that older white adults showed greater stereotyping toward African Americans than younger white adults did. Despite being more motivated to control their prejudices, older whites’ attempts to inhibit their prejudices failed.

The study proposes that some of the negative social behaviors attributed to the elderly may be resulting from their loss of inhibition. You can read more about this research on brain atrophy in the elderly at the “Medical News Today” website.

Note: A study from the Buehler Center on Aging at Northwestern University’s Feinberg School of Medicine states that nearly 75 percent of nursing assistants (CNA’s) working in nursing homes experience racism on the job. This research showed that racism is expressed by nursing home residents as well as residents' families and nursing home co-workers.

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

Spirituality and Elderly, Black, Hurricane Katrina Survivors

Since the publication of my book, "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” I have spoken to a cross-section of groups from healthcare, academic, and general public arenas. Clergy members have often been in attendance. As a hospice volunteer, I am careful not to impose any religious views on my patients, but patients do request counseling from clergy members about religion and spirituality.

I was reminded of this when I read some research about older, black, Katrina survivors. New Orleans is my hometown, and I am particularly concerned about the slow recovery progress, which I witnessed firsthand again during a recent visit there. As I stated in previous posts, elderly residents who have remained in New Orleans or who have evacuated across the country have often experienced difficult adjustments.

The research I read explored coping strategies of these older evacuees living at a retirement apartment complex in Texas. The study states, “Without exception, the findings indicate that this population coped with Katrina and its aftermath through reliance on a Higher Power.” It explains further that the relationship with a Higher Power was not necessarily connected with church membership. This is important because many people who are spiritual are not religious in the church-going sense.

These are the spiritual coping themes that resulted from a series of interviews with these older Katrina survivors:

“1) regular communication with a supernatural power; 2) miracles of faith through this source of guidance and protection; 3) daily reading of the Bible and various spiritual and devotional materials; and 4) helping others as a consequence of faith and devotion to a supreme being.” During traumatic times, spirituality clearly promotes emotional resilience for many.

You can read more about this University of North Texas study at this website.

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

Perspectives on Dying from Hospice Patients and Healthcare Professionals: (Video 4:28 mins.)

Too often, I talk to adult children who haven't discussed death matters with their elderly parents. Sometimes when they try, parents won’t participate in the discussion. Most people die in institutions, and planning ahead is very important. Advance directives, wills, and other death-related documents should be completed before a crisis occurs and should be readily available.

A research study by the University of Georgia Institute of Gerontology focused on end-of-life preparations and preferences of elders and adult children of elders. Interviews were held with the two groups. The study determined that barriers to discussions about end-of-life preparation and preferences were fear of death, trust in others to make decisions, family dynamics, and uncertainty about preferences. Factors that promoted these discussions were acceptance of the reality of death, prior experience with death, religion or spirituality, and a desire to help the family.

Casually approaching end-of life discussions and creating written records of preparation and preferences were considered successful strategies for expanding communication on this sensitive topic. Knowing good solutions to overcome obstacles and promote these discussions can assist healthcare professionals in encouraging elders and their families in planning ahead.

What are the needs of the dying? How can the end of life be integrated as a natural and sacred human process? This video titled “Solace: Wisdom of the Dying” presents perspectives on dying from hospice patients and healthcare professionals.

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

Hospice Volunteer Inmates in Louisiana Prison (Video 4:17 mins.)

When you think about prison, what usually comes to mind? You probably imagine depression, fear, violence, and razorwire fences. And you would be right, but not completely. One example of expressed compassion in prison is demonstrated in the caregiving of inmate hospice volunteers who serve terminally ill inmates.

These volunteers provide comfort that may be missing in the lives of some prisoners, especially those who no longer have attentive relationships beyond prison walls. Many serving life sentences, including some volunteers, know they will die in confinement. Nurturing support given by familiar faces of those who have also experienced the prison system can enhance prisoners’ quality of life during the dying process.

This video titled “Will Anybody Cry When I Die?” shows hospice inmates helping a fellow prisoner during his end-of-life journey at the Louisiana State Penitentiary in Angola, Louisiana. Later, they prepare and honor him with a death ritual. Watching this video, you might find yourself feeling distant from negative aspects commonly associated with prison life. You might be feeling the love.

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

Hospice and Nursing Home Story: Patient's Life Review (Video 4:25 mins.)

Something I have enjoyed doing as a writer and hospice volunteer is recording patients’ life reviews. A life review is a legacy that is put in written, audio, or video form for family and friends to treasure after the patient has died. I could not do this with patients who had dementia or those who were too ill physically. Patients who were able to participate in this process enjoyed creating this record that added permanence to their history.

Jackie (pseudonym), a talkative patient with a sharp mind, was glad she could still remember what had happened in her life and eager to tell me her story. During several visits, she answered a series of questions that I recorded on tape and transcribed later. Her story started with descriptions of her parents, their values, and their impact on her life. Later, she included memories of her siblings and incidents that happened to her over eighty years ago.

Speaking with a knowing that only comes with age, she told me about happy times that drenched her with joy, and heartbreaking struggles that drowned her in misery. When she spoke about being hospitalized years ago due to physical abuse by a former husband, I reminded her that others would read the information in her booklet. She responded that her husband’s maltreatment of her was common knowledge. Her family and friends had advised her often to divorce him. “I’m proud now that I finally left with my children and started a better life,” she added smiling. The most important life message she wanted to leave was the truth of her experience.

This video, titled "Hello in There," reminds us that there’s a special story inside each person. Be sure to wait for words accompanying the music.

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

Nurses and Nurse Assistants (CNA’s): Stress in Nursing Homes

Who knows stress better than the people who carry it around everyday? These research results came directly from nurses and nurse assistants (CNA’s) in twenty-five nursing homes in North Carolina. This is what they had to say:

Nurses:

The situations most stressful for nurses were not having enough staff, having too much work to do, interruptions, having non-health professionals determine how they do their jobs, poor pay, and being responsible for patients' outcomes. Nurses were more likely than nurse assistants to report stress because non-health professionals (e.g. surveyors) determine how they must perform their services.

Nurse Assistants (CNA’s):

The most stressful situations for nurse assistants included poor pay, not enough staff, and too much work to do. Nurse assistants were more likely than nurses to report stress because they do not have adequate information regarding patients' conditions.

Conclusions:

The findings of this study support the need to increase recognition for nursing, improve staffing, and provide competitive compensation in nursing homes. Were you surprised by these results? I wasn’t either. But it’s still another validation of the staff stress problems and the need for positive changes in nursing home reform.

You can read more about this research in the "Journal of the American Medical Directors Association.”

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

Hospice Team: Jewish Funeral Practices (Video 4:15 mins.)

Being aware of various cultural and religious traditions in our diverse society is especially important for hospice workers because we are often invited to attend rituals such as funerals of deceased patients. Families appreciate sensitivity and respect regarding practices they embrace. However, even within various cultures and religions, there are differences, so asking family members questions is far better than making assumptions or creating stereotypes about large groups of people.

The first time I attended a Jewish funeral, I was surprised by how different it was from Christian funerals I had experienced. The casket was closed; there were no flowers; the service was short and simple. I welcomed the new ritual and asked questions about procedures I didn’t understand. After I became a hospice volunteer, I benefited from the knowledge gained at that Jewish service and services of other groups.

These are some examples and explanations regarding Jewish funerals:

1) The casket is closed out of respect for the deceased.
2) Embalming and cremation are not allowed, so the body can deteriorate naturally.
3) Flowers are not killed to honor someone who has died.
4) Burial takes place soon out of respect for the deceased.

This video titled Jewish Funeral Practices 101 gives a detailed description of Jewish funeral practices.

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

“The Bucket List” Movie: A Hospice Nursing Home Volunteer’s Review (Video Trailer 2:28 mins.)

All these years, we’ve joked about “kicking the bucket,” and now we learn there’s a list inside the bucket. “The Bucket List” is a movie starring Jack Nicholson and Morgan Freeman as terminally ill cancer patients. They meet as strangers with seemingly nothing in common, except a hospital room they share. Gradually, they bond and commit to leaving the hospital in order to accomplish adventurous goals on their bucket list. Fortunately, Nicholson’s character is a billionaire who can foot the globetrotting bills. With only months to live, the two men forge a special friendship through laughter and tears. They savor some of life’s final thrills by skydiving, racing cars, and visiting world wonders.

That’s a summary of the movie I saw today while enjoying my “kiddie pack” refreshments. What the summary doesn't mention is that the movie nudges audiences into thoughts of personal end-of-life journeys, that it helps them unravel philosophical lessons they tend to ignore, that it attracts people in large numbers in spite of critics who pan it. There are those who snicker with condescension and label "The Bucket List” a feel-good movie about death and mortality. A hospice volunteer, I smile, just thinking what a compliment that is.

What’s on your bucket list?

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

Therapy Dogs and Cats Improve Human Health (Video 2:37 mins.)

A few years ago, my elderly friend and her dog were in a serious car accident. The experience was very traumatic for her and the dog. Because of my friend’s physical injuries, she and her dog were separated immediately after the accident, so she could stay at a rehabilitation center.

Slowly, my friend made progress, but she missed her dog a lot. The picture with this post shows their happy reunion the day I brought her dog to visit. I also noticed the heightened joy of many staff members when they interacted with the dog. His presence brought many smiles.

I didn’t need research to tell me that some healing had taken place, but it’s good to know that the results of positive exchanges between pets and people are scientifically measurable. The American Heart Association verifies that heart failure patients who spent 12 minutes with a dog or cat had lower stress hormones and blood pressure levels.

Pets are being certified to improve patients’ health in nursing homes and hospitals. Pets’ many contributions include helping stroke survivors with physical therapy and assisting mentally disabled patients in learning chores. It doesn’t matter what breed the pets are, as long as they have sound temperaments and can pass the AKC Canine Good Citizen Test. Thousands of dogs and smaller numbers of cats serve as therapy pets. They seem to know instinctively that they are there to help patients. And this video shows that’s exactly what they do.

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

Nursing Homes and Hospice Organizations, How Can Students Serve You?

Note: Winner of the National Service-Learning Partnership Trailblazer Award, Frances Shani Parker, a national consultant and former schoolwide service-learning principal, has been instrumental in implementing service-learning in school districts across the country. Her book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes includes a chapter on intergenerational partnerships between schools and nursing homes.

Nursing homes and hospice organizations, how can students serve you, at your locations or elsewhere, under the supervision of their teachers or service coordinators? Service-learning is a teaching and learning approach that connects classroom learning with meeting community needs. For example, after learning how to write letters, students extend that learning into the community by writing real letters to nursing home residents, if that meets a need at that nursing home. Everyone involved benefits from the experience. As a former school principal of an urban public school with all 600 students involved in service-learning, I know how successful this approach can be.

Hospice organizations, most students have no idea what hospice is or the role students (K-college) can play in supporting you in the office or elsewhere. This kind of early hospice involvement with young people will do a lot to promote hospice on a long-term basis. While student involvement in nursing homes is more well known, perhaps the kinds of involvement can be extended. This is how students are introduced early to healthcare career choices in fields that have serious staff shortages today.

So, what are your needs? These are the grade-level categories to consider:
Elementary School, Middle School, High School, and College
If you would leave me a few comments stating what students in any or all these grade-level categories can do that would meet needs of nursing homes or hospice organizations, I will compile this information and pass it on to teachers and service coordinators I consult with across the country. Please state the grade-level categories and the service students can perform.

This is a sample response that you can write at the bottom of this post on the right. Just click "Comments" (next to the pencil).

1) Your Name or Name of Organization, City/State (all optional)

2) Grade-Level Category (elementary school, middle school, high school, college) You can choose more than one category.

3) Student Service Activities:

We need students to provide these services:

1)____________________________________________

2)____________________________________________

Thank you for your participation in supporting service-learning partnerships. There is a chapter on school partnerships and nursing homes in my book,Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.You can also read more about service-learning at this previous post titled “Service Learning and Nursing Homes: Intergenerational Partnerships.”

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

Latinos, African Americans, and Alzheimer’s Disease (Audio 5:55 mins.)

According to a study reported in “Neurology®,”
Latinos and African Americans with Alzheimer's disease live longer than Caucasians who have the disease. Variables such as education level, age when symptoms began, living situation, and other factors that could affect how long the study participants lived did not change the results. The study involved about 31,000 people who had Alzheimer’s disease.

Latino participants lived about 40 percent longer than Caucasian participants, and African American participants lived 15 percent longer than Caucasians. Asian and American Indian participants lived about as long as Caucasians. Author of the study, Kala Mehta, DSc, said, "Possible explanations may be underlying genetic or cultural factors." Other possible factors were varying levels of social support from extended family, varying levels of health and diseases in addition to Alzheimer's disease, varying levels of treatment of other diseases, and differences in measurement or earlier diagnosis in some groups. Another factor could be length of stay in the United States. These findings can impact healthcare planning of Alzheimer’s disease.

You can hear more about Alzheimer’s disease and treatment, including additional information about African Americans, at this NPR.org. website.

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

Culture Change: Transformation of Four Nursing Homes (Video: 5:16 mins.)

The following includes an excerpt from 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.

“Welcome to Baby Boomer Haven! It’s a treasure to have you. My name is Ruth, and I’ll be your tour guide today. The first thing you need to know about our nursing home is that it’s real for some, but imaginary for too many others. Everything we enjoy here already exists in nursing homes scattered throughout America, but not in nearly enough. We’re having this tour today, so you can become familiar with possibilities that all nursing home residents should be experiencing, no matter where they are located.

When baby boomers seeking institutional healthcare show up in the millions, nursing homes like ours should be ready to receive them with welcoming lights shining in every window. Now, more than ever, nursing homes should be focused on ongoing state-of-the-art improvements. The comfortable life we live is as close as society’s handshake with commitment to quality healthcare, particularly for the ill and elderly.

We love many things about living here, but what we enjoy most is that we’re treated with dignity as adults. Our feelings and opinions matter. You’ll understand this better during the tour when you see our physical environment, the freedom we have in deciding how we live within our limitations, and the nurturing manner in which all employees interact with us.”

There are several models of culture change for nursing homes. They all respect and incorporate input from residents and staff members in such areas as decision-making and scheduling. This video from the Pioneer Network captures the transformation of four nursing homes in Anywhere, USA.

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

Hospice and Palliative Care Reflections: Quality of Life for Elderly, Ill Dogs (Video 3:49 mins.)

Today’s post may seem different from my usual ones. There’s no link to scientific data or a story about humans receiving hospice or palliative care. The featured topic literally goes to the dogs, rescued dogs that are mostly elderly and ill.

Living at a refuge similar to a nursing home for dogs, they struggled with health challenges ranging from deafness, epilepsy, hip dysplasia, heart murmur, and a lymphatic mass on one “hospice” dog predicted to live only a few more weeks.

Caregiving humans decided it was high time these canine seniors had their chance at smelling the roses we humans have to remind ourselves to smell. A great way to do this was to take all the dogs on a wonderful trip to dog-friendly locations immersed in adventure and nature.

This post shows another application of “quality of life” care for an elderly, ill population that has so often supported others. A soul-stirring video, “Seven Days with Seven Dogs” takes us on a “dog-centered” trip where floral fragrances permeate the air, where wounded spirits soar, and where we are reminded that the best things in life are not things.

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

Hospice Art Therapy (Audio 5:59 mins.)

Julia Balzer Riley is a holistic nurse and artist from Florida who helps hospice patients through art therapy. She visits them wherever they receive hospice care. Starting this art therapy with cancer patients, she introduced them to painting on silk pieces.

Riley's therapy begins with centering exercises to encourage patients to set the intention for a healing image to come. Emphasis is on the art process, not the product. Patients say they don’t feel pain while they are painting.

Riley explains that patients move into a relaxation response, “fall into the process,” and often smile. Because images are in patients’ minds before words, they represent patients’ emotions. Riley believes art therapy promotes expressions of patients’ feelings and improves their well-being.

You can listen to a more detailed description of this form of hospice art therapy at this website.

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

Hospice and Nursing Home Poem: Inside Dementia, Alzheimer's Disease

This post includes the poem “Pieces of Our Minds” from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” Each chapter ends with an original poem.

Do you ever wonder what it might be like inside the minds of patients with dementia? I do. Dementia refers to a group of conditions that gradually destroy brain cells and lead to mental decline. Alzheimer’s (Ahlz-high-merz) disease is the leading cause. Most people who have the disease are over sixty-five, with eighty being the average age of diagnosis. There is no cure for patients with dementia, and they eventually need complete care.

As a hospice volunteer, I have spent many hours, individually and in groups, interacting with patients who have dementia. When I am with them, I consciously try to view the world from their perspectives. This helps me understand them better and interpret needs they can’t always verbalize. That process inspired me to write this poem:

Pieces of Our Minds

On the border, on the brink,
we shiver like quivering tears
swollen to fullness with distress,
reluctant to spill an excess.

Strapped in delusions
wondrous and weird, we ride
roller coasters of reality
through joy and fear.

On the brim, on the rim,
like balls circling in frustration,
we scramble for thoughts
lost in nets of uncertainty.

Invaded by memories,
peeping, creeping, weeping,
we laugh and cry to the
rhythm of nostalgia.

On the fringe, on the edge,
changing, adjusting, impacting,
we crave compassion in our
search for society’s sanctuary.

© Frances Shani Parker



You can hear me reciting this poem on YouTube.

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

Conversation with Dr. Ira Byock on End-of-Life Care (Video 7:19 mins.)

Dr. Ira Byock is Director of Palliative Medicine, Dartmouth-Hitchcock Medical Center and a major advocate for improving end-of-life care. Past president of the American Academy of Hospice and Palliative Medicine, he is the author of several books, the most recent one being “The Four Things that Matter Most.”

This video conversation with Dr. Byock covers beneficial information for the healthcare profession and society in general regarding what should be done to improve the final chapter in our lives. His comments include the following:

1) Palliative care and how it differs from current medical practice
2) Personal preparation for the last chapter in life
3) Family preparations for one another’s end-of-life care

Dr. Byock explains that nationally we must face the inevitability of death and stop making prolonged life the main goal of mortal beings. He emphasizes the importance of addressing our emotional, social, and spiritual needs by deciding what our values are, considering what matters most, sharing with our families in whatever forms they exist, and putting our decisions in writing. April 16, which is National Healthcare Decision Day, and Thanksgiving Day are days selected to encourage end-of-life conversations; however, any day is a good day to discuss this crucial information.

You can view this video of Dr. Byock’s conversation about what we should be doing individually and nationally to improve end-of–life care.

Frances Shani Parker
Hospice and Nursing Homes Blog

Nursing Home Residents’ Vision and Quality of Life

Imagine that life is a blur with moving shadows of people wearing fading faces. What if you have to give up reading newspapers and watching television because they’re too hard to figure out? Suppose a time when you really could see well was only a memory, and you miss the joy you felt when life was sharp and clear. Did you know that large numbers of nursing home residents see the world in a blurred manner? Sure, it’s expected that eyesight could be declining in later years. But did you know that the lack of eye care for nursing home residents is widespread in America? If any population needs regular eye exams, it’s seniors in nursing homes.


University of Alabama researchers studied nursing home residents and discovered that residents who received eyeglasses had higher scores for general vision, reading, activities, hobbies, social interaction, and fewer depressive symptoms. It’s no surprise they concluded that basic eye care services (spectacle correction) have significant implications for improving quality of life.

Patients with vision that can be corrected easily should not have to guess which foods are on their dinner plates or wonder how their surroundings and people in them really look. Our seniors deserve so much more. The study states that steps should be taken to improve delivery and eye care utilization in America. I certainly hope this “revelation” opens eyes and produces results. This research study can be found in the JAMA Archives of Ophthalmology.

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