Frances Shani Parker and Anne Marie Gattari Television Interview: Aging Well in America (Video 30:16)

Frances Shani Parker, an eldercare consultant, former school principal, hospice volunteer, and author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, was featured guest on Aging Well in America, a television show hosted by Anne Marie Gattari. The interview covered these topics:

Hospice

Nursing Homes

Volunteering

Caregiving

Dementia

Death Preparations

Intergenerational Partnerships 

Older Adult Stereotypes

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 + Dementia: Are Bereaved Families Satisfied? (Research, Alzheimer’s Video Poem 2:24)

Through the years, I have had many occasions to work with families of hospice patients who had dementia. For many relatives, experiencing a loved one’s mental decline is extremely difficult. Hospice workers can offer greatly needed support to families adjusting to these changes and in maintaining quality of life for patients.

When the death journey is over, how do bereaved families rate the hospice services their deceased loved ones who died from dementia received? Hospice-related dementia research examining the effectives of hospice services was done with 260 of 538 bereaved family member respondents from five states. The following hospice ratings from bereaved families were reported:

1) Fewer unmet needs and concerns with quality of care

2) Higher rating of the quality of care

3)    Better quality of dying than those without hospice services

This research from the perspectives of bereaved family members affirms satisfaction with hospice services for patients with dementia.

My own personal interactions as a hospice volunteer serving nursing home residents with dementia were quite inspiring. I can truthfully say that our time together was mutually beneficial. One thing I know for sure is that I became a better person. Titled Pieces of Our Minds, this original video poem conveys my thoughts about what it is like inside the minds of people with dementia.

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, Long-Term Care, and Dementia Quiz

Hospice, Long-Term Care, and Dementia Quiz

What's your response to these statements?

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

               

1)   Death is a terrible thing.

Fact: Death is a natural part of life that everyone will experience. Accept, discuss, and prepare for becoming dead in your future.

2)   It’s always better to die at home.

Fact: “Home” can be the presence of love and comfort wherever a terminally ill patient may be. Most people die in institutions.

3)   Hospice speeds up death.

Fact: If two similar people had the same terminal illness, the one receiving hospice care would probably live longer.

4)   Pain is a natural part of aging and dying. Under-treated pain slows down the death process.

Fact: Pain medication is available to offer appropriate relief to patients. Under-treated pain worsens the process unnecessarily.

5)   Patients with dementia don’t miss visits from relatives and friends they don’t recognize.

Fact: Patients with dementia are often aware of their surroundings on some level. Loved ones should focus on patients’ current abilities and make every effort to spend quality time with them.

6)   Patients with dementia are always suffering.

Fact: Patients with dementia have varied days like everyone else. Happy memories and enriching activities can slow-dance into their realities and fill them with joy.

7)   Caregivers must only focus on their patients.

Fact: Caregivers must focus on their own care as well. They should seek supportive resources and monitor their sleep habits, irritability, and general health, always with a willingness to seek help when needed.

8)   Caregivers should not question decisions of healthcare professionals who are the experts.

Fact: Caregivers should be proactive as patient advocates. They should stay informed about patients’ symptoms, diseases, treatment purposes, and side effects.

9)   Long-term care facilities are not good places for children to visit.

Fact: Intergenerational experiences help children understand life’s passages. Children should experience opportunities that encourage them to become nurturing people, eliminate ageism stereotypes, and expose them to possible career choices.

10) Hospice work is mostly depressing.

Fact: Millions of hospice workers view their involvement with patients as privileged occasions for mutual growth and fulfillment.

© Frances Shani Parker

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

Burnout Compassion Fatigue: Health Care, Law Enforcement, Other Service Professions (Video 4:20)

Compassion fatigue is a form of burnout experienced in many service professions such as health care and law enforcement. It results from empathizing too much with another person’s pain. Without realizing it, professional and personal relationships may become entwined. Compassion fatigue can cause painful physical, mental, emotional, and spiritual exhaustion. Resentment may build toward the person receiving care. Substance abuse might be used as an escape from the exhaustion of caring too much.

Healthcare workers and others in service professions should monitor their behavior and feelings for signs of compassion fatigue. Treatment often includes counseling and the development of coping strategies.

This video titled Compassion Fatigue: The Stress of Caring Too Much describes compassion fatigue as explained by workers in the mental health, hospice, and law enforcement professions.

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 Hispanics: Doctor-Patient Communication (Research, Video 2:52)

Cultural values play an important role in how racial-ethnic populations make decisions regarding terminal illness, caregiving, end-of-life experiences, and hospice participation. Communication is a critical factor in delivering information that can be understood in the context of these values. Doctors and their background training must reflect general cultural knowledge of racial-ethnic groups in order to communicate well with them, always keeping in mind that there are differences within populations.

With a focus on Hispanics, researchers at the University of South Florida School of Social Work studied factors that doctors use to communicate with patients. Communication involved revealing a terminally ill diagnosis and a hospice referral. Interviews conducted in Spanish and/or English with ten doctors in Central Florida reported these results relating to communication and related themes:

1)   Role of family members and end-of-life decisions

2)   Language barriers and limited knowledge of culture and beliefs relating to end-of-life decisions

3)   Gaps in training and education of doctors

Hispanics and other racial-ethnic populations that continue to be under-represented in hospice care must be included in the entitlement to death with dignity that the hospice philosophy supports. In order to improve representation, barriers such as language communication, knowledge of family roles, and cultural beliefs related to end-of-life decisions must be addressed. Better education and training of doctors and other healthcare workers can greatly improve their communication skills with various cultures.

This video from the Hospice Foundation of America Cares video series shares important information about Hispanic concerns that can help healthcare workers meet patients’ needs. Dorotea Gonzalez, nurse at Capital Hospice in Virginia, shares her perspectives on some of the philosophies at the foundation of Hispanic culture.

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

Approaching Death: Dying Symptoms, Caregiver Support (Video 5:31)

The body knows when it’s time to slow down and die. Each body will die in its own way and in its own time when the process starts. I have been asked on several occasions to explain some of the circumstances that may be present when death is near. This excerpt from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes addresses that:

“Among symptoms of impending death, there might be decreases in food intake, swallowing, communication; and increases in sleep, weakness and spiritual awareness. The latter might include speaking to or appearing to look at, or dreaming about persons who have already died. Patients may become incontinent, agitated, confused, withdrawn, and congested. Bright light in patients’ eyes should be avoided. Patients should be turned gently when necessary. Hospice care should provide every reasonable effort to control pain and stabilize patients to a plateau of comfort. The hospice nurse or doctor can explain any changes that cause concern during the dying process.

Some caregivers become upset when dying patients lose their appetites. Because they view food as nurturing, they want to keep giving patients more food than they need. It is important to keep in mind that dying patients with little or no appetite are not starving or in pain from hunger in the manner that is commonly understood. They are responding normally to the body’s breaking down as part of the dying process. Swallowing may be difficult for them and could lead to choking when food is forced into their mouths. They could also become nauseous and vomit from being forced to take in food they do not want. Dying patients may also want less to drink. The insides of their mouths can be moistened with droplets or a fine spray, and a lip cream can be used, especially if they are breathing through their mouths. It is not unusual for breathing of dying patients to fluctuate from quiet to noisy or to have an irregular rhythm."

As much as possible, caregivers should remain calm and give patients reassuring presence. This video titled “Palliative Curriculum - Part 6 - Last Hours of Living” presents a scenario about a daughter’s concerns during her mother’s final days.

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

Family and Friends Rate End-of-Life Patient Care in Nursing Homes (Research, Hospice Video 1:00)

As much as people say they plan to die at home, most are dying in hospitals and nursing homes. What roles do family and friends who are patient advocates play? How do they feel about their experiences while their loved one is dying? Answers to these questions were topics for research at Brown University.

Telephone interviews were held with 54 close family members or friends of individuals who had spent at least 48 hours in the last month of life of a loved one in a nursing home. Respondents described the last year of life with the deceased loved one and their nursing home experiences.

These were the key themes of their areas of concern:

1)   Families often felt the need to advocate for their dying relative because of low expectations or experiences with poor quality nursing home care.

2)    They noted staff members who did not fully inform them about what to expect in the dying process.

3)    Respondents reported burden and gratification in care they themselves provided which sometimes entailed collaboration with staff.

4)    Interviews also identified ways hospice care impacted families, including helping to relieve family burden.

These themes highlight the urgent need for a reduction in the family’s burden at this critical stage of caregiving a dying loved one. Also needed is improved communication so families can be better prepared at the end of the loved one's life. This includes more information about hospice care. The family’s trust in the nursing home depends on how these supports are enhanced to make their experience with a dying loved one beautiful for everyone.

This one-minute video titled “PSA #9 Nursing Home Hospice QT.mov” is funded by the Pennsylvania Department of Aging and produced by the Take Charge Partnership. The scenario presented introduces a family member to hospice care for their loved one.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” (paperback, e-book)

“Hospice and Nursing Homes Blog”

Hospice Volunteer and Dementia Patient Share Common History: Poem “Deeper Than Words”

Guarded from angry mobs by federal marshals in 1960, first-grader Ruby Bridges integrated William Frantz Public School in New Orleans, LA, my hometown. In protest during the first year, all parents withdrew their children from the school.

Hospice volunteers and patients come together as strangers and often discover that they have common histories or characteristics. These familiar experiences and qualities unite them in special ways that take their bonding to another level of understanding. Shared similarities can include civil rights oppression, languages, disabilities, military service, talents, occupations, travel, values, and other factors.

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

Deeper Than Words

The outside world arrives

wearing my willing face.

Toothless, your smile widens

like a baby’s hungry for attention.

Almost ninety-eight years old,

your inner candle still glows.

A hospice volunteer, I lean closer,

talk into your listening left ear,

“Today is Sunday, Miss Loretta.”

My news drifts away like smoke.

You stare at me through dying coals.

Whatever I ask, you whisper, “Yes.”

I stroke your age-softened arms

while your hazed mind masters sleep.

Watching you, I dream generations

of women black and strong, each one

a book of sustaining stories

about joy, pain, courage, survival.

Within your warm brown frame,

spirits from our common history linger.

Aides say you have dementia,

that you don’t know a word I say.

Our language goes deeper than words.

We speak to each other’s souls.

© Frances Shani Parker

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

Poem About Loneliness in Older Adults/ Seniors

                                         
She waited, grasping like a New Year's resolution...

Festive holidays have brought cherished opportunities for many older adults to enjoy some visitors they seldom see during most of the year. Whether at home or in institutions, loneliness can be both difficult and dangerous for their overall health. Too many of them endure the negative impact of loneliness daily.

“Missing” is one of sixteen original poems at the end of each chapter in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. A hospice volunteer, I wrote it after witnessing the sadness of lonely nursing home residents who were missing the missing. They coped with ongoing loneliness that could easily have been avoided with gifts of time. But some relatives and friends kept putting off visiting them until it was too late.

As this new year begins with resolutions for change, consider making every effort to visit those who are ill or alone. Don’t sentence them to another year of missing you.

Missing

She waited,

hoping her years of caring

endured in grown-up minds,

rested in distant hearts,

conveyed how much she missed them.

She waited,

living real-time movies

of restless nights, anxious days

with inhaled hopes of fellowship,

exhaled sighs of deep despair.

She waited,

wishing nostalgic winds

flowed through cotton curtains,

brought relatives and friends

she cherished through the years.

She waited,

grasping like a New Year's resolution,

like a second suspended in time

until her clock stopped ticking

for visitors who never came.

© Frances Shani Parker

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

The Long and Short of Hospice Time in Nursing Homes (Research)

As a hospice volunteer in Detroit nursing homes, I have had hospice patients stay as short as one day and as long as three years. With little quiet or privacy, almost all of them shared rooms with one to three non-hospice residents. My three-year patient was 94 years old. Having few visits from relatives and friends who lived out of town, her biggest fear was the possibility of being released from hospice care and the nursing home. I’ve also had rare happy patients who were released from hospice because their health improved.

One patient with dementia seemed to have a premonition that she would be leaving soon when she said to me one day, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.” I had never heard her say anything about leaving before. Two weeks later, she was released from hospice care and moved to a nursing home near her son’s house.

Are there characteristics of nursing homes and residents that are associated with long and short hospice stays? Using 13,479 residents enrolled in hospice care, researchers at Harvard Medical School looked for answers to this question. Research results indicated the following:

1)    Nursing home characteristics were not statistically significant predictors of long stays.

2)    The probability of a short stay increased with the facility's nurse staffing ratio and decreased with the share of residents covered by Medicaid.

3)    Men (relative to women) and blacks (relative to whites) were less likely to have a long stay and more likely to have a short stay.

4)    Those 70 years or younger (relative to those 81-90) and residents with Alzheimer's disease/dementia were more likely to have long stays and less likely to have short stays.

5)    Fourteen percent of hospice users were discharged before death because they failed to meet Medicare hospice eligibility criteria. These residents on average had longer lengths of stays.

If you work with hospice patients in nursing homes, have you noticed these occurrences? Researchers concluded “high rates of discharge before death that may reflect a less predictable life trajectory of nursing home residents suggests that further evaluation of the hospice benefit for nursing home residents may be needed.”

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Successful Hospice-Nursing Home Partnerships (Research)

A hospice volunteer in Detroit nursing homes for many years, I am familiar with the benefits and problems that can occur when hospices and nursing homes operate as partners. These partnerships can work very well when certain best practices are followed. What do successful partnerships between hospices and nursing homes look like?

This study by Brown Medical School uses case studies of six nursing homes and hospices working collaboratively. Interviews were held with care providers and chief executive and financial officers regarding seven domains critical to successful collaboration. These were the results:

1) Nursing home-hospice collaborators were philosophically and otherwise aligned; they had similar missions, understood their differing approaches to care, and administrators demonstrated an openness and support for the collaboration.

2) Hospices developed infrastructures to correspond to the uniqueness and complexity of the nursing home environment. For example, they hired nurses with nursing home backgrounds, created teams dedicated to nursing home care, and trained hospice staff in problem solving and conflict resolution.

3) Care collaboration processes focused on the importance of two-way communication by actively soliciting and sharing information with nursing home staff and responding to nursing home staff and administrators' concerns.

This successful partnership model demonstrates how well collaboration can work when hospices and nursing home leaders commit to operating strategically using communication, flexibility, and skills to match staffing to the nursing home environment. 

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Alzheimer’s Dementia Hospice Story: Coping With Grief

“She’ll rise out of her grave…”

This true story about a conversation with my hospice patient is one of many in my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

When Mamie Wilson became my hospice patient, she had several unusual qualities that made me wonder. At sixty-five with Alzheimer’s dementia, she was the youngest patient assigned to me after years of hospice volunteering. She had the same name as my grandmother, and I had her grandmother's name. When we made these discoveries during our first meeting, we took them as signs that we were destined to have a great patient-volunteer relationship. In time, I learned that the most unusual thing about Mamie was what she said.

“Is your mother alive?” Mamie asked me one day.

“No, she died a few years ago in her eighties,” I responded.

“You know, you can still be with her and talk to her if you want to.”

“Oh, I know we can still communicate.”

“No, I mean for real. You can be with her in person. Just get her clothes together and her shoes. Don’t forget her coat. They say it’s cold outside. Take them to the cemetery where she’s buried. Just set them on top of her grave and wait. She’ll rise out of her grave and put them on. Then you can take her home with you. In every way, she’ll be the same person you knew. Other people won’t be able to see her, but you will.”

“Hmm. I’ve never heard that before.”

“Most people haven’t. I know about it because I did it with my two grown sons. They were both murdered on the same day in a drive-by shooting. I didn’t know how I would get through the pain. Finally, I took their clothes to the cemetery and did what I just told you. Both of them came home with me. It was the best day of my life. I got my sons back.” Satisfied, she smiled.

Some people will dismiss this story as crazed comments of a demented woman. But, if you really listen, you’ll hear the magnificent empowerment in her words.

© Frances Shani Parker

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 several other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Hospice Volunteers Share Experiences (Hospice Poem, Video 3:25)

Each hospice volunteer has a unique story to tell.  This is my story poem about my hospice volunteer experiences in Detroit nursing homes:

Reflections of a Hospice Volunteer

By Frances Shani Parker 

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

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

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

Palliative Care or Supportive Care? Which Would You Prefer? (Research, Video 3:04)

Would a rose by any other name smell as sweet?

I have met quite a few people who don’t have a clue as to what palliative care is. Some are even in the healthcare profession. To add to the confusion, many who do know what it is refer to palliative care using various pronunciations (sound pronunciation). Then there are those healthcare organizations such as the American cancer centers that have adopted use of the name palliative care but continue to get referrals late for those needing it. Is this due to an association of the name palliative care with hospice care?  Would all these problems regarding the name palliative care be resolved by just replacing the name with a more user friendly one such as supportive care?

Obviously, the name palliative care carries several barriers that need to be explored. That’s why this research caught my interest. This study by the Anderson Cancer Center in Houston, Texas reports how the name palliative care versus the name supportive care may impact cancer patient referrals.

Can a name be a barrier to patient referrals for care? Medical oncologists and their midlevel providers (advance practice nurses and physician assistants) at a comprehensive cancer center think so. 140 out of 200 of them participated in a survey to determine the impact of the name palliative care compared with the name supportive care on patient referrals and to determine whether there was an association between demographic factors and the perceptions of the two names. What were the results?

1)    The name palliative care compared with the name supportive care was perceived more frequently by medical oncologists and midlevel providers as a barrier to referrals, decreasing hope, and causing distress in patients and families.

2)    Participants significantly preferred the name supportive care compared with palliative care. They also stated more likelihood to refer patients on active primary and advanced cancer treatments to a service named supportive care.

While these results are not surprising, where does this leave the name palliative care? Is this a matter of educating the public more to the meaning and appreciation of what palliative care can provide? Or is this a matter of phasing out usage of the term palliative care with patients and replacing it with the name supportive care? What do you think?

This video explains palliative care: “Palliative Care: What is it and who is it for?”

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Ten Steps to Becoming Dead Right

                    

                                     Ten Steps to Becoming Dead Right

                                        By Frances Shani Parker, Author

             Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1. Accept death as part of life.

Death will come, no matter how often you avoid the topic or how forcefully technology wrestles it to the ground.

2. Listen to the universe.

Some call it the universe, while many use other names. If you believe you are part of an infinite enlightenment, be still and listen.

3. Expect rainbow smiles.

Rainbow smiles are joyous, healing, memorable moments that come more often when you anticipate them.

4. Live a healthy lifestyle.

Practice habits of good health. Commit to including them in your daily living.

5. Be informed and proactive.

Keep abreast of what’s going on. When circumstances arise that can benefit from your knowledge, apply what you know.

6. Do your best.

You can’t solve every problem or be everything to everybody. Just do all you can.

7. Give service to others.

Complement others by fulfilling needs through service. Both server and recipient benefit from this partnership.

8. Be grateful for blessings.

Blessings come like wondrous celebrations held in your honor. Let appreciation reign!

9. Put death wishes in writing.

Fulfillment of your end-of-life wishes will often depend on what you discuss and record now.

10. Have a dignified death journey.

Breathe in your final phase of life with contentment. Experience a dying process that brings beauty and calm to your personal letting go.

Copyright © Frances Shani Parker

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 editions at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice Chaplain Planned Detroit Nursing Home Memorial Service

The need to honor the deceased in an atmosphere of healing and support from others has been a common manner for mourning the dead. But sometimes people die without family and friends available to handle funeral or memorial services that recognize, honor, and bring closure to death. Such was the case with my hospice patient named Lelia, whose memorial service was planned by the hospice chaplain:

Excerpt from Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

A small group gathered in the recreation room at the nursing home. Most people present were other patients who knew Lelia. Essie, Lelia’s sister, came with a friend named Nola. The hospice chaplain opened the memorial ceremony with a prayer and a reading. Taking turns, we shared our memories of Lelia. Some comments were hilarious, while others revealed Lelia’s demons. We all discovered new layers of Lelia that came together in a mental mural of colorful qualities.

Essie spoke last, “I’m sitting here in shock listening to what you all said about my sister. I can’t believe we knew the same person. The Lelia I knew hardly ever said anything funny, and she sure wasn’t thoughtful, at least not to me. Even when I helped her get into this nursing home, she still acted like she hated me. She was grouchy and liked to criticize people all the time. Nobody was really close to her. To tell you the truth, nobody in our family was close to anybody else in the family. There was just too much drama going on all the time. That’s why I’m the only one here. I started not to come myself, but now I’m glad I did. I learned something new today. I feel better about Lelia after hearing your stories.”

Although the chaplain hadn’t known in advance how many would attend the ceremony, she had brought twelve helium balloons, the exact number needed for each person present to have a balloon to release later. Like colorful hula dancers swaying from strings tied to a chair, the balloons added a festive energy to Lelia’s homegoing. Riding down with the group on the elevator, Nola mentioned that she and Essie were both singers. We all agreed they should lead us in song when the balloons were released during our tribute to Lelia.

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, 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