Hospice Volunteer Research, Appreciation (Video 3:25)

Iowa City, Iowa Hospice Volunteer Appreciation Photo

Hospice volunteers play a vital role in the success of hospice organizations throughout the country.  During the month of April, these volunteers and many other volunteers will receive tokens of appreciation for their services. In recent years, several research projects have focused on hospice volunteers’ efforts by examining evidence of their work as end-of-life caregivers. The following hospice volunteer research results were conclusions of 54 studies:

What We Know About Hospice Volunteers

1)     We know the various roles hospice volunteers play, the stresses they experience, and the satisfying rewards they receive from their service.

2)     Less is known about how to successfully recruit, prepare, and retain them.

3)     A small body of information exists regarding the positive contributions volunteers make in the lives of families and in the longevity of patients.

What We Need To Know More About Hospice Volunteers

1)     While we know hospice volunteers play an important role in the lives of patients they serve, more research is needed on their important end-of-life contributions.

2)     Future research should focus more on ways to maximize contributions of hospice volunteers and provide them with needed support.

Thank you to volunteers everywhere for all you do to make the world a better place. “To the world you may be one person. But, to one person, you may be the world. “   Anonymous

        

This Reflections of a Hospice Volunteer video includes a poem highlighting my experiences as a hospice volunteer in Detroit, Michigan nursing homes:

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 booksellers such as Amazon and Barnes and Noble.

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Grandchildren Discuss Dementia, Alzheimer’s (Video 6:30)

So often, we hear views of adults regarding their parents with dementia. But what is dementia like through the eyes of grandchildren? Imagine their emotions when their loved ones forget their names and can’t remember the relationships they have. What about the hurt feelings these young people experience when agitated grandparents with dementia strike out at them verbally or physically, and they’ve done nothing they know of to cause this?

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

Parents should be aware of changes in grandchildren’s behaviors at home and school. These young people need reassurances that they are not the cause of grandparents’ mood swings, that they are still loved by grandparents who have an illness that sometimes interferes with the expression of that love. Children should be reminded of the many good times in the past that they shared with their grandparents.

In this video, young people express their feelings about how their grandparents’ dementia has impacted their lives.

For more intergenerational information about dementia, you can view this post featuring children learning about dementia through school partnerships.

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 booksellers such as Amazon and Barnes and Noble .

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Veterans’ Post-Traumatic Stress Disorder (PTSD), Depression: Clergy, Spiritual Counselors (Research, Video 4:42)

My hospice patient Nat was like many men and women who have served our country during wars. He suffered with repressed fear and sadness resulting from his experiences. 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. These are words he spoke that I remember well:

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

“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. 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.”

Not much research is available about veterans like Nat regarding their search for support from clergy and spiritual counselors for their depression and PTSD. In this Veterans Administration research study, 761 veterans with probable major depression participated in telephone surveys. They were asked about their openness to seeking help and their actual contact with clergy and spiritual counselors during a six-month period. Almost half endorsed this support at some level. Ninety-one participants (12 %) reported actual clergy/spiritual counselor consultation. Others indicated support for primary care providers, psychiatrists and other mental health providers.

Knowing that veterans suffering with PTSD and depression are agreeable to receiving help from clergy and spiritual counselors as well as other providers is important. Including clergy and spiritual counselors, particularly those with specific PTSD training, on care teams for veterans can improve health of patients like Nat.

This video shares the PTSD journey of one marine veteran. Veterans Healing Initiative is a nonprofit dedicated to providing veterans of all eras access to treatment for substance abuse and PTSD. 



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

Nursing Assistants’ (CNA’s) Grief When Patients Die (Research, Video 2:05)

As a hospice volunteer in nursing homes, I worked around certified nursing assistants (CNA's) who often provided front-line patient care. Many were dedicated to doing good jobs, even when conditions were stressful. When nursing homes were understaffed, nursing assistants were glad when I arrived to feed my patients. They usually had good relationships with residents, and their lives were impacted when patients died. 

Grief can be complicated, having both positive and negative consequences. For nursing assistants with strong connections with patients, the death of patients can include negative feelings such as depression, or it can include beneficial feelings such as growth in their ability to cope better. 

A study reported in Research in Gerontological Nursing that surveyed 380 nursing assistants confirmed that participants experienced both distress and growth. Those who reported greater distress from grief also reported higher levels of burnout. In addition, they reported lower levels of psychological and physical well-being. On the other hand, participants who experienced greater personal growth from their grief reported “significantly lower levels of burnout, higher levels of psychological and physical well-being, and higher levels of job satisfaction.”

Apparently, how nursing assistants respond to grief can be another indicator of their well-being at the job and a possible factor in how quality care is impacted. The following video highlights the intimate bond with patients that many nursing assistants develop that goes far beyond everyday healthcare tasks:

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

Older Adult Abuse From Family Caregivers (Daughter’s Video 2:52)

Do people realize the full impact of statements they make about what they would never do, particularly when they are judging others? Many things people said they would never do, regrettably, they have done. This brings up the topic of older adult abuse by caregiving family members. More and more cases are being reported. This abuse can be physical, psychological, and exploitative. It often occurs in shared living situations with caregivers.

Everyone has a breaking point, a moral boundary that must not be crossed. Caregivers overwhelmed with depression, guilt, anger, and other stressors may have difficulty not crossing over this boundary, even when they know they shouldn’t. This is one reason why caregivers must always be mindful of taking care of and monitoring themselves. Assistance from others is not only helpful, but also mandatory to prevent abuse from happening. Healthcare workers can help with these needs and refer caregivers to other resources.

Caregivers need respite time away from patients to share their experiences, gain information from others, and relieve stress. They need programs that save time and make them feel that they are cared about. They need others to be their caregivers by temporarily relieving their burdens, sharing an uplifting activity, being good listeners, and providing encouragement.

What can happen when family caregivers reach their breaking point and cross over? In this video titled Breaking Point, a formerly abusive daughter shares her frightening experience of abuse toward her mother and how she changed:

You can read more about older adult (elder) abuse from a multicultural perspective here: https://www.linkedin.com/pulse/older-adult-abuse-multicultural-views-research-video-parker?trk=mp-reader-card

Frances Shani Parker, Author

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

African American Hospice Caregiver: Patient, Dementia Poem

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

Dying is universal. A hospice volunteer, I come together with my patients as strangers and often discover, even in our differences, that we share similarities that bond us to higher levels of understanding of one another and ourselves. Shared similarities can include race, language, talents, occupations, travel, values, joys and even common pain.

My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes concludes each chapter with an original poem. I was moved to write the poem Deeper Than Words while watching my hospice patient sleep. I thought about our shared African American history that bridged our communication beyond her dementia. This poem is dedicated to Miss Loretta, Ruby Bridges and our awe-inspiring ancestors.

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 and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Alzheimer's Dementia: Love Before and After (Video 4:42)

If you know a good love story, share it. George and Adriana Cuevas have a great love story. Beginning 87 years ago, their love reigns eternal. They met as children with trillions of dreams and no certainties about their futures. Distance sat between them for 15 long years. But they continued as pen pals until love brought them back together like inseparable magnets.

The day finally arrived when their love was celebrated in marriage. Children followed with lots of reasons for George and Adriana to cherish their mutual joy while stringing memories together. But dementia, a terminal illness with many challenges, also became an integral part of their relationship. Sometimes love is too magnificent to explain, but the story must still be told. When The Mind Says Goodbye does that:

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

Mardi Gras Celebrations in Older Adult, Senior Communities (Video 1:25)

Parties and small parades are common in nursing homes and other older adult communities in New Orleans and other cities celebrating the world-famous Mardi Gras or Carnival season. It's a great time for fantasy, food and fun! The Mardi Gras season begins on January 6 and continues until Fat Tuesday, the day before Ash Wednesday begins the Christian season of Lent. Mardi Gras day makes its annual debut this year on February 12, 2013. Street parades attracting huge crowds of local residents and curious tourists occur daily. Parades are held during the day and at night.

Growing up in New Orleans, I loved this magical season. Mardi Gras parades created wonderful memories for me. The excitement of swimming in an ocean of festivities, the buoyancy from living fantastic fantasies thrilled my senses. They connected me with the same wave of wonderment flowing through every child who ever lived on this planet.

As a hospice volunteer and traveler, I have had the good fortune of seeing entertaining Mardi Gras merriment enhancing quality of life in older adult communities in various cities. I store all my Mardi Gras memories in a marvelous, mental, treasure chest painted with purple, green and gold brush strokes, the official colors of Mardi Gras. I always smile when I look inside. No doubt, amused older adults will be smiling this Mardi Gras 2013 and many Mardi Gras seasons to come.

Upcoming Mardi Gras Dates:

(Mardi Gras can fall on any Tuesday between February 3 and March 9.)

• February 28, 2017
• February 13, 2018
• March 5, 2019
• February 25, 2020
• February 16, 2021
• March 1, 2022
• February 21, 2023
• February 13, 2024
• March 4, 2025
• February 17, 2026
• February 9, 2027
• February 29, 2028
  March 5, 2030
  February 25, 2031,
  February 10, 2032
  March 1, 2033
  February 21, 2034
  February 6, 2035
  February 26, 2036
  February 17, 2037
  March 9, 2038
  February 22, 2039
  February 14, 2040
  March 5, 2041
  February 18, 2042
  February 10, 2043
  March 1, 2044
  February 21, 2045
  February 6, 2046
  February 26, 2047
  February 18, 2048
  March 2, 2049
  February 22, 2050

The celebration at the Catholic Charities Program of All-Inclusive Care for the Elderly (PACE)  features older adults celebrating with a Mardi Gras ball including a king, queen, maids and dukes of the royal court. Plenty of sparkling apple juice is provided for toasting! This brief video is an example of Mardi Gras celebrations held in many older adult communities. Let the good times roll!

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

Doctors’ Burnout, Cremation and a Blog Birthday (Research, Video: .51)

Welcome to my sixth Hospice and Nursing Homes Blog birthday party! Now that you’re here, have some mouth-watering chocolate cake while I tell you about blogging predictions. A fantastic aspect of blogging is predicting which posts will be most popular. I’ve been surprised many times. With thousands of pageviews, these are the top two posts over the past six years:

1) Hospice-Palliative Care Doctors and Burnout (Research, Video 5:48) 

Posted in 2010, this post is by far the most viewed of all. I was particularly attracted to writing it because the research and video concerning doctors’ burnout are eye-openers about their personal career suffering.

2) Cremation Process and Storage of Cremains (Video 2:32) 

If there is any doubt that cremation continues to grow in acceptance in America, this post proves it. Posted in 2010, it continues to receive pageviews regularly.

My goodness! The years keep ending and beginning, and now it's 2013. Blogging is a challenging, rewarding and service-oriented activity for me. A solitary process, it still gives me opportunities to meet and exchange ideas with interesting, like-minded people all over the world. My objectives are to promote more interest in hospice and palliative care, share my personal journey and insights as a hospice volunteer, increase person-centered nursing homes, and improve quality of life for older adults in general.

Thank you for dropping by my blog birthday party and for any other times you have visited this site. Commemorating this milestone with the Happy Birthday song sponsored by the American Cancer Society is singer, actress and spokesperson Jennifer Hudson:

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

Hospice Book Review by Reader Scared of Death

The reading audience of hospice and other books about death includes many who approach this subject with fear. They also avoid talking, writing or reading about the end of life. An author, eldercare consultant and hospice volunteer, I have been told on numerous occasions that dying is just too depressing and final to share openly.

This reluctance to deal with mortality visited a friendship of mine. I had given a casual friend a copy of my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Wanting to be sensitive and not knowing her feelings about death, I decided not to talk to her about the book unless she mentioned it. Eventually, she did. I’ll call her Alice. She approved my writing this blog post.

Because Alice works in the healthcare profession, I was surprised to discover that she feels strongly that death, a frightening stalker of her dreams, is an enemy that terrifies her. She shared that death has stolen too many of her loved ones, including pets. She helplessly dreads the thought of losing even more. My own acceptance of death, which comes across clearly in my conversations and writings, seems inappropriate to her. She finds my views too accepting of her adversary, too casual a regard for life. While she says she would consider hospice care along with other options in the future, she admits she could never be even an average hospice volunteer. It would be too painful.

What is her review of Becoming Dead Right? She loves the patients’ stories and my comments about interactions with various people in the nursing home world. The original poetry, which concludes each chapter and probably nudges her own poetic abilities, pleases her. She finds the discussions on hospice, nursing homes, caregiving, dementia, death and bereavement informative. The explanations about intergenerational school-nursing home partnerships and the ideal nursing home described in the last chapter are particularly enjoyable. But she dislikes emphatically the premise that there is a “right” way to die.

I am not sure if her hostility toward death has changed much, but I hope that this book meeting with what she refers to as “the monster” has impacted her positively on some level. Those of us who embrace the reality of dying and death will continue to be viewed with dismay by those who cope with mortality through avoidance and resignation of themselves and loved ones as victims of malicious end-of-life  powers.

Alice’s revelations reinforce the importance of promoting dying as a natural part of life that should be experienced with calm and dignity by everyone. I believe conversations and writings enhance lives of the naysayers one person at a time. These efforts empower them slowly with death acceptance even as they resist the message. I appreciate Alice’s frankness in sharing death’s distressful presence in her life and in giving feedback on my book. Most of all, I commend her willingness to become a ball of courage rolling into the high weeds where the death monster lives.

You can read book endorsements, excerpts, and more at my website.

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