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

2008 Post-Katrina Elderly Deaths and New Orleans Healthcare Services (Video 4:30 mins.)

The third anniversary of Hurricane Katrina’s impact on New Orleans, my hometown, arrives with continuing concerns about the elderly and healthcare services in the city.

The journal “Disaster Medicine and Public Health Preparedness” reports the following statistics regarding elderly deaths and Hurricane Katrina:

1. Most Louisiana deaths resulting from Hurricane Katrina were in New Orleans. According to researchers, of the nearly 1,000 who died, almost half were age 75 or older. Keep in mind that even more deaths were indirectly related to the storm.

2. Most elderly persons drowned on the day of the flooding, and more than a third died at home. Many old people refused to abandon their homes, due to potential looting, fear of the unknown, and the possibility that hurricane warnings were a false alarm.

Three years after Hurricane Katrina, the people of New Orleans are still waiting for adequate healthcare services. Even though flooding only occurred in the basement of the famous Charity Hospital, the second-largest hospital in the nation and a primary trauma center, the hospital still remains closed in 2008.

The basement had been cleaned up and ready to reopen in October of 2005, but that never happened. Unresolved issues over plans to build a newer hospital continue to delay progress. To build a new hospital would take years and millions of dollars. Charity Hospital stands empty, while many people must rely heavily on free health clinics or wait in long lines to be seen at smaller remaining hospitals, while their health deteriorates.

This video examines the healthcare crisis in New Orleans.

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

Impact of Hospice-Palliative Care Service on Volunteers (Sarah House Video 4:45 mins.)

People sometimes make untrue assumptions about hospice-palliative care volunteers. A common one is that we are all depressed saints. They probably say this because death in our society has so much sadness surrounding it. The truth is that most of us don’t find hospice volunteering depressing at all. I know it has made me a better person.

Recent research made me consider more specific ways that volunteering impacts lives of direct-patient care volunteers. Results were gathered through in-depth interviews. These are some of the findings:

1) Over half of the participants became volunteers because of previous death experiences with friends or family.

2) Most volunteers said they had been changed, that their outlook on life had changed, and that they learned the importance of living one day at a time.

3) Volunteers found ways to prevent compassion fatigue or burnout.

4) Volunteers said they would encourage others to volunteer.

5) Many volunteers offered suggestions for changing their programs.

Only 23 volunteers were interviewed for this study. I would have preferred that there were more. However, I think these five general findings can still be applied to a broad section of volunteers. Differences in demographics, culture, personalities, etc. would be more evident during discussions of specifics, particularly regarding numbers 3 and 5. Discussion among volunteers and their managers about these kinds of issues and more provide the open communication that enriches the workplace culture.

You can read more here about this study reported in the “American Journal of Hospice Palliative Care.”

This video features Sarah House, a "social model" hospice dedicated to end-of-life care for homeless and low-income residents, including those with AIDS who may or may not be near death. Sarah House is located in Santa Barbara, California.

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

Nursing Home Culture Change: Working with State Regulators (Pioneer Network Video 2:36 mins.)

Many people don’t plan to live their last days in nursing homes. However, with over 37 million Americans over the age of 65, a large segment of them will live and die in nursing homes. Culture change, which focuses on living life with dignity, can include the following:

1) Flexible Schedules

Everybody doesn’t have to eat, sleep, and bathe at the same times.

2) Intergenerational Activities

Relationships between children and the elderly are encouraged. The unique, beneficial exchanges that take place in this context are lacking too often in today’s society.

3) Interactions with Animals

Appropriate animals provide companionship and improved health.

4) Independent and Social Activities

Nursing home residents feel respected when their input is welcome regarding activities they can do independently. They also appreciate social activities that keep them connected with others.

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. The Household Model is a product of the Pioneer Movement. Small groups of residents form households resembling "homes" where they have opportunities to develop quality relationships in a calm environment.

In this Pioneer Network video, Steve Shields describes how his organization approached working with state regulators to remodel an existing nursing home into the Household Model.

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

Service-Learning, Schools, and Nursing Homes: Intergenerational Partnerships (Video 3:30 mins.)

This excerpt is from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, which includes a chapter titled “School-Nursing Home Partnership:"

“The most effective learning usually does not come from classroom lectures or always translate on standardized tests. I witnessed academic and affective growth by students as a direct result of their interactions with the elderly. Growth occurred when the two groups became involved in meaningful projects such as letter writing, storytelling, biography writing, arts and crafts, and performing arts. This excellent educational approach to teaching and learning that connects classroom learning with meeting community needs is called service-learning. Research shows that students derive many benefits in areas of academic achievement, enthusiasm for learning, caring for others, and greater civic and political engagement through involvement in service learning."

When I was a teacher, I took students on service-learning field trips to nursing homes. Students practiced educational skills, showcased their talents, and provided entertainment and companionship to residents. Residents also benefited from these exchanges. Our trips came about after extensive preparation between the intergenerational partners and included ongoing reflection and evaluation.

I encouraged schoolwide service learning with all staff and students. We became a national model for research-based, schoolwide service-learning. You can read research our fourth graders did in partnership with nursing home residents on ageism stereotypes here: https://www.linkedin.com/pulse/intergenerational-service-learning-student-nursing-home-parker?trk=mp-author-card

What is service-learning in practice? This Better TV video defines service-learning and explains how it is used by schools and community groups to improve communities and promote positive development in young people.

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

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

Hospice and Nursing Home Poem: Hospice Volunteer Reflections

Over 400,000 hospice volunteers across America enhance life in patients’ days. This poem is from my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” which includes an original poem after each chapter:

Reflections of a Hospice Volunteer

I leave my car and walk into a world with many fates.
The people live reality where three words dominate:
“Nostalgia” brings memories that make them question why.
“Delusions” create fantasies that often come alive.
“Anticipation” beckons the beginning of each day.
A visit, party, special news⎯what is on the way?

Sedonia tells me stories of how life used to be.
Many things seem different now. She’s almost ninety-three.
Moochie shields unseen friends he pledges to protect.
I wonder if he sees and hears the friends he manifests.

Dexter smiles and says with pride while waiting for his son,
“All my children visit me, and each is Number One.”
Pearl yells, “I want some cake, and bring it just for me!”
She thinks that I’m employed here. She sees me every week.

An empty bed reminds me that someone else has gone.
Next week, I’ll see someone new. Life’s cycle will go on.
Juan trails me through each room while planning his escape.
“I have somewhere to go,” he pleads. I stop him at the gate.

I leave this special world today with wisdom strong and rare,
Respecting every circumstance that brought each person there.
Our futures are unknown to us like roads with endless curves.
I drive away feeling good, happy that I served.

© 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

Alzheimer’s Disease: Research on Hispanics, African Americans, and Whites (Caregiver Video 2:48 mins.)

Alzheimer’s disease has both similarities and differences in knowledge, awareness, and cultural beliefs among groups defined by race and ethnicity. This has been documented in research by the University of Michigan School of Public Health in Ann Arbor, MI.

For example, both African American and Hispanic respondents tend to believe that Alzheimer’s disease is a normal part of aging. These groups were more optimistic about future research advances than whites were. On the other hand, more than whites and African Americans, Hispanics were more likely to report feeling well-prepared for handling a diagnosis of Alzheimer’s disease in a family member. In general, the research results support the need for more public education about the disease.

In this video titled “Extended Interview with Alzheimer's Caregiver, Ric Gomez,” an Hispanic caregiver, who quit his job so he could take care of his father, speaks honestly about ongoing challenges and good times they experience. His father is in the middle stages of Alzheimer’s disease.

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

Sexuality, Hospice-Palliative Care and Senior Citizens (Video: 3:56 mins.)

Like death, sex is another American taboo that many people avoid discussing, particularly when it relates to senior citizens. Including palliative or hospice care in the discussion can be even more difficult. Inaccurate stereotypes often surface during sexuality conversations. Why is an old man interested in sex called a “dirty old man,” but an interested young man isn’t? Why do people think the elderly outgrow all their sexual desires? Sex doesn’t belong to youth, and safe sex practices belong to all ages.

Living with terminal illness can be traumatic to patients’ sexual well-being. Communication is critical for making good sexual adjustments during this vulnerable time. Professional help can often make this transition easier. According to the American Journal of Hospice and Palliative Care, there is a place for sexuality, depending on patients’ conditions, during a terminal illness. Health professionals should acknowledge and support patients’ desires to function sexually within their abilities. In fact, health professionals should initiate this discussion.

Seniors who are not terminally ill should also have their sexuality recognized and accepted. Dr. Myrtle Wilhite, medical director of A Woman’s Touch Sexuality Resources, does this by teaching a sexuality class for seniors. She says she teaches them the same things she teaches nurses. Whether it’s technique, anatomy, and everything else in between, she makes sure they leave with all the information she can give them to enjoy their sexuality, including tips on what to do when sex doesn’t work out right.

As one senior stated, “I still enjoy hearing about sex and all that.” Now, if we can just get more seniors and others to say, “I enjoy hearing about death and all that.” Hopefully, millions of baby boomers will make that statement a common one in the near future.

This video gives a classroom view of the senior sexuality class.

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

Hospice and Nursing Homes: Granting Dying Patients’ Last Wishes (Video 2:05 mins.)

This post includes an excerpt from my book, "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” In the last chapter, titled “Baby Boomer Haven,” a patient named Ruth takes readers on a tour of her nursing home, which is based on best practices of limited numbers of nursing homes around the country. This is how she describes the hospice wing:

“Serenity permeates everything that goes on here. Many of our hospice patients enjoy music therapy to help soothe them through various stages of their illnesses. One of our community partners finances a “Wishing Well” project for hospice patients by making a wish come true for them. Recently, a patient had a special visit from a close friend with whom he had lost track for many years. The friend’s trip was financed through the “Wishing Well” project. Two days after their heartwarming reunion, the patient died. At the family’s request, the hospice chaplain coordinated a memorial service held here in our chapel. I was one of many who paid my respects to that kind gentleman.”

© Frances Shani Parker

Granting last wishes of hospice patients is a service provided to enhance quality of life during death journeys. This video shows another example of how fulfilled wishes can enrich patients’ lives.

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

Nursing Home Technology: Aibo, the Robotic Dog, Eases Loneliness (Video 1:53 mins.)

I first read about Aibo, Sony’s robotic dog, in 2006 when it was being tested in nursing homes. I was so impressed with the pleasing possibilities this little charmer could bring to patients, especially lonely ones, that I included robotic dogs in my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. In the chapter titled Baby Boomer Haven, in which an imaginary tour of a nursing home based on current best practices is described, I say this:

“Watch out for Diva Dog over there, one of several resident pets. She’s just looking you over to make sure you look her over. In her spare time, she’s a certified psychologist. For residents who prefer the convenience of a responsive robotic pet, we have two mechanical dogs that operate with artificial intelligence. They provide playful companionship without the need for feeding, walking, and cleaning up after them. The best part about the mechanical dogs is that the more residents interact with them, the more responsive the dogs become to the residents. All the animals here are like our extended family. For some of us, they are our only family.”

After that testing period, Aibo disappeared, but a few months ago, I was glad to hear strong rumors about an Aibo resurrection. The new Aibo will have downloadable personalities. It will be fully Wi-Fi controllable and able to climb stairs. Referred to as Aibo PS (PlayStation), this mechanical dog awakens itself, senses sounds and motion, and pings e-mail. Wagging its tail, Aibo also bleeps with pleasure when petted, responds to several commands, and enjoys the company of others like a living dog would.

During seven weeks of tests at three nursing homes, researchers compared how residents interacted with Sparky, a living mid-sized dog, and Aibo. According to Dr. William Banks, professor of geriatric medicine at Saint Louis University, “The most surprising thing is they (robotic dogs) worked almost equally well in alleviating loneliness and causing residents to form attachments.” To that I say, “Good dog, Aibo!” You can read more about this nursing home experiment with Aibo at  “Medical News Today” website.

Meet the amazing Aibo:

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

Children Talk About Grandparents and Dementia, Alzheimer's Disease (Video 6:30 mins.)

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 (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.

So often, we hear about responses of adults regarding parents with dementia. But what is dementia like through the eyes of grandchildren? Imagine their emotions when a loved one forgets their names and can’t remember the relationship they have. What about the hurt feelings children experience when an agitated grandparent with dementia strikes out at them verbally or physically and they’ve done nothing to cause this?

Dementia must be explained to children in age-appropriate ways that can support them in their adjustments to the dementia of a grandparent. Listening to children’s concerns and encouraging them to express them are important. Family discussions can be helpful for everyone.

Parents should be aware of changes in children’s behavior at home and school. Children need reassurances that they are not the cause of a grandparent’s mood swings, that they are still loved by the grandparent who has an illness that sometimes interferes with the expression of that love. They should be reminded of the many good times in the past that they shared with a grandparent.

In this video, children talk about their experiences of having grandparents with dementia.

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

Nursing Home Sex Offenders: Predators Living with Prey (Video 6:05 mins.)

Virginia Thurston, almost eighty years old and suffering from dementia, was sexually assaulted by another resident in her Jacksonville, Florida nursing home. The rapist, who had been sent to the home after being found homeless, had a twenty-page criminal record that included sexual assault and child molestation. A judge had declared him vulnerable and in need of protective care.

Unfortunately, most nursing homes are only required to do criminal background checks on employees. Residents with criminal records can be assigned to nursing homes with no one knowing their dangerous histories. Wes Bledsoe, an elder rights advocate, says he has tracked over 1600 sex offenders living in nursing homes. Most homes do not impose different supervision or separation requirements on residents who are known sex offenders.

The man who raped Virginia Thurston was found incompetent to stand trial and placed in a state home. What about all the other predators who remain? While some say that knowledge of residents’ criminal history does not determine their current conditions, others say sexual offenders should be in separate nursing home facilities. Oklahoma is the first state that takes registered sex offenders requiring long-term care out of standard nursing homes. In the meantime, caregivers must be vigilant in checking their patients for signs of emotional or physical abuse and personality changes. They should also be proactive in dealing with nursing home safety measures, including behavioral and physical patient assessments.

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

Eden Alternative for Nursing Homes (Video 6:52 mins.)

The following includes an excerpt from my book, "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” The chapter titled “Baby Boomer Haven” takes readers on a tour through an imaginary nursing home based on best practices of some, but not nearly enough, nursing homes that exist today. Animals and children are important additions to culture change of many nursing homes that are moving away from the stereotypical, traditional model.

“Watch out for Diva Dog over there, one of several resident pets. She’s just looking you over to make sure you look her over. In her spare time, she’s a certified psychologist. Other indoor animals on the site are located in our aviaries of brightly colored birds and in our aquariums with fish that mesmerize us with their antics. We have more animals outdoors such as horses and rabbits. It’s fascinating watching how all of our animals relate. They’re a lot like people, you know, and have much more sense than we think they do.

Employees seem to love working here as much as we love living here. Most have years of seniority, and hardly anybody is ever absent. Low staff turnover saves considerable money in overtime and in hiring temporary help. Two things all employees like are our flexible scheduling and childcare on the premises. This allows them to personalize their time and accomplish more at home and at work with fewer worries. If you look to your left through the window of the childcare center, you can see two employees having lunch with their children. The older gentleman is a resident reading to a small group. I love spending time with the little ones. I jokingly call them my little “ankle biters” when they aren’t around. Some of them call me, “Grandma,” and a few like to say “Big Mama,” which really tickles me because that’s what I called my grandmother.”

© Frances Shani Parker

There are several models of culture change for nursing homes. This video examines an approach known as the Eden Alternative.

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

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.
____________________________________________________

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."

____________________________________________________

"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

____________________________________________________

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)

___________________________________________________

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

__________________________________________________

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