Hospice and Nursing Homes Blog

Poem: Volunteer Honors Alzheimer’s Patient and African American Ancestors

2012-02-01T10:12:00.003-05:00

Guarded from angry mobs by federal marshals 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.

Because my hospice volunteering is primarily in Detroit, Michigan, many people assume that all of my patients are African American. Actually, I have had several Caucasian patients who were in my care for years. Dying is universal. My patients and I come together as strangers and often discover 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 pains.

I was inspired to write this poem while watching my hospice patient sleep. I thought about our shared African American heritage that bridged our communication beyond her Alzheimer's disease. This poem is dedicated to her and our ancestors, especially those strong and inspirational like Ruby Bridges.

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.

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

Community Service By Older Adults Living in Nursing Homes, Assisted Living

2012-01-27T03:33:00.005-05:00

Lettie Miller Frye, an assisted living resident of Greenfield makes quilts to raise funds for the Edinburg Volunteer Fire Department. Photo by Rich Cooley/Northern Virginia Daily News

When I was writing my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, I created a chapter about a nursing home called Baby Boomer Haven based on best practices of various nursing homes, but not nearly enough, around America. This imaginary nursing home includes older adults performing community service. In this book excerpt, Ruth, a wheelchair –riding resident, takes readers on a tour and explains some of the service activities they perform:

“At Baby Boomer Heaven, I mean Haven, we emphasize win-win community service. We’ve learned that when we join with the community and put all of our notes together, we create some fine songs. Of course, we appreciate service from others, but we want to serve people, too. We want to feel like we are doing our part to make the world a better place now and for future generations.

Our gift shop sells crafts we make to help fund service projects. Among several services we provide, residents help Fetching Feasts provide meals delivered to seniors at their homes. We perform tasks here that make the process easier for them. We sew blankets for newborns. We often tutor and read to children at our childcare center."

Ruth goes on to explain other service activities in which residents demonstrate their reciprocal partnership with the local community. Do you have community service activities to share about residents in older adult communities?

If you would like to know more about positive and negative aspects of nursing home life and how families can transition loved ones to long-term care facilities, Jonathan Rosenfeld, writer of Nursing Homes Abuse Blog recommends ten helpful resources there that can assist you.

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.

Happy Birthday to Hospice and Nursing Homes Blog (Video: .29)

2012-01-15T20:01:00.004-05:00

Five years ago in January 2007, I decided to commit to writing Hospice and Nursing Homes Blog. Anybody who’s ever written a blog for years knows “commit” is the only word to use here, especially if you're the only writer. Cyberspace is a humongous place, but I firmly believe one person can make a positive difference.

Why do I blog? I want 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 eldercare and quality of life for older adults in general. There are various ways to achieve this, and blogging is one of mine. Using stories, poems, news, research, interviews, photos, and videos, I present universal information that includes the often-missing voices of people of color and concerns of urban areas.

The years keep ending and beginning, and now it's 2012. I can hardly believe it's been five years. Blogging is a challenging, rewarding, and service-oriented activity for me. It's given me the opportunity to meet and exchange ideas with interesting and diverse people all over the world.

Thank you to all my wonderful readers for your support during my five years of blogging Hospice and Nursing Homes Blog. Commemorating this milestone with song are older adults DameEdithDivine and HerHandyman whistling “Happy Birthday to You!”

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

Homeless Older Adults: Geriatric Problems and Hospice Care (Research, Video 5:15)

2012-01-12T01:42:00.000-05:00

Living in a large urban city, I see homeless people a lot. At one point, the public school where I was principal had more homeless students than any school in Michigan. Having interacted with homeless people at various age levels, I often wonder about their life stories. Of particular concern are older adults who have been homeless for many years. What brought them to this condition? What’s really going on with them physically, mentally, and emotionally? What happens to those living in shelters and on the streets when they are actively dying?

The average age of America’s homeless population continues to increase along with the geriatric syndromes many of them have. Research is important to understand and improve the plight of homeless older adults. With this in mind, researchers at Beth Israel Deaconess Medical Center studied two hundred forty-seven homeless adults aged 50-69 who were recruited from eight homeless shelters in Boston, MA. Their goal was to determine the prevalence of common geriatric syndromes of older adult homeless. Among their key findings are these percentages involving research participants:

1. Difficulty in performing at least one activity of daily living was reported in 30%.

2. Cognitive impairment was present in 24.3%.

3. Impaired executive function was present in 28.3%.

4. Criteria for frailty were met by 16%.

5. Major depression was present in 39.8%.

6. Self-reported hearing and visual impairment was present among 29.7% and 30.0% of subjects.

7. Urinary incontinence was reported by 49.8%.

In summary, homeless older adults were more likely to have functional impairment, frailty, depression, visual impairment, and urinary incontinence compared to three population-based cohorts of older persons. Geriatric problems that are potentially treatable are common in older homeless adults and are experienced at higher rates than in the general older population

If homeless people are living ill on the streets, they are also dying on the streets. What can be done to help homeless older adults in need of hospice care? Alpha Project for the Homeless has launched one of the only Hospices for the Homeless programs in the country. Living with Dignity, a program inspired by Kyla Winters, is located in San Diego, California. This video describes how hospice care supports the homeless.

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

When Older Adults, Seniors Want to Die (Hospice Nursing Home Story, Research)

2012-01-06T02:53:00.005-05:00

Some people think being around dying patients must always be sad because everybody fears death, and no one really wants to die. As a hospice volunteer, I have had several patients who could prove them wrong. These nursing home residents actually stated they looked forward to death and gave reasons that had nothing to do with depression. This is what hospice patient Rose said to me about her upcoming death:

“How old did you tell me I was?” Rose asked.

“You’re ninety-nine, and you’ll be a hundred years old on your next birthday.”

“A hundred years old is too old. I don’t think I want to be that old.”

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

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

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

“I guess I could wait. Yes, I think I will wait. That way I can celebrate my hundredth birthday. When I do get to heaven, I can tell everybody I lived to be one hundred.”

And that’s exactly what she did.

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

But wanting to die is not always that simple. According to this VU University Medical Center research study in Amsterdam about older adults’ death thoughts and wishes, 81.3% never had them. Among those who did, 67% had depressive symptoms, and 20% suffered from a depressive disorder. Wanting to die was associated with depressive symptoms, a depressive disorder, lower perceived mastery, financial problems, loneliness, small network, involuntary urine loss, being divorced, and having a speech impediment.

What can we learn from this research? Certain situations increase the likelihood that an older person wants to die. Although the desire to die may not be related to depressive symptoms, depression should be cause for investigation about death wishes and should be treated.

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)

2012-01-03T15:13:00.000-05:00

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

Ten Steps to Becoming Dead Right: Hospice Volunteer Perspective

2011-12-27T03:27:00.001-05:00

If there’s one thing I’ve learned from years of hospice volunteering, it’s that death will come when it comes. Grappling with death can be so much easier when it’s approached like any other important life event. Preparation includes following a workable plan that brings comforting closure when that ultimate destination is reached. Consider using these ten steps featuring scenic routes on your journey to becoming dead right:

Ten Steps to Becoming Dead Right

1. Accept death as part of life.

Death will come no matter how often the topic is avoided or how forcefully technology wrestles it to the ground.

2. Listen to the Universe.

Some say it’s the Universe. Many use God, Higher Power or 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 anticipated.

4. Live a healthy lifestyle.

Practice habits of healthy living in all areas of your life.

5. Be informed and proactive.

Keep abreast of what’s happening in life. When circumstances arise that can benefit from your input, apply what you know.

6. Do your best.

You can’t solve every problem or be everything to everybody. Do what 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. Get medical, financial, and property decisions in order.

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.

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

Older Adult Religion and Spirituality (Research, Hospice Nurse Video 2:51)

2011-12-19T17:43:00.001-05:00

Are most religious older adults spiritual? Are the most spiritual ones religious? Topics related to spirituality and religion can get very personal. That’s why many people avoid them. As hospice volunteers, we are advised not to impose our personal religious or spiritual beliefs on patients. Some people have daily spiritual experiences that are a core part of their lives. At the same time, they may have varying levels of praying or attending formal religious services.

When older adults come together and live in a community, they bring all their varied personal religious and spiritual beliefs and practices, including no beliefs and practices. Rush University Medical Center researchers studied the levels of daily spiritual experiences of 6,534 older adults living in biracial communities. These are the reported results of that study:

1) Most participants had daily spiritual experiences. African Americans and women had more than Whites and men.

2) Prayer and worship were moderately connected with daily spiritual experiences.

3) African American race, older age, female gender, better self-rated health, and greater social networks were associated with higher daily spiritual experiences scores. Higher levels of education and depressive symptoms were associated with lower daily spiritual experiences scores.

Overall, these findings are consistent with other research findings on religion and spirituality in the lives of older adults.

In this video titled I Wanna Go, hospice nurse Mary Peakes sings an afterlife spiritual song at the family’s request for patient Pamela Rucker. Ms. Rucker died from ALS, also known as Lou Gehrig’s disease, four days later after peaceful closure with family members. Her daughter stated, “My life will be okay if I know she is waiting for me at the end of it. I want to thank all the hospice nurses. I am so grateful for these angels who helped my mother and her family through this difficult time.”

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

Male Caregiver of Mother: Interview with Frank Gasiorek and Frances Shani Parker

2011-12-14T10:15:00.007-05:00

Catherine and Frank Gasiorek

Frank Gasiorek is a man devoted to his terminally ill mother. He belongs to a growing group of 14.5 million men who make up one out of three caregivers in America. Like millions of people carrying personal stories most of us will never know, he told me he was a caregiver only after I happened to mention my involvement with eldercare. From our conversations, I have come to view him as an excellent role model for caregivers in general, especially men. In this interview with me, he shares his caregiving journey:

1) Frank, how did you become your mother’s primary caregiver?

I began my role as my mother's primary caregiver due to being an only son with siblings living out of state. Also, having a strong bond with a person who was a dedicated single parent and mentor during my early childhood years gave me the desire to give back and return the service.

2) What concerns do you think are unique to caregiving of a parent by an adult child, especially one of the opposite sex?

Sometimes different interests and backgrounds may be a factor. However, the realization that I only get one of these, a unique person and mother, is important. As the years passed and more personal care and attention were needed, my mother stated she did not want to live her final years outside of her home. She also did not want outsider care assistance.

Acceptance of my role as a male caregiver had to be addressed. No longer am I the son. I had to explain to my mother that, when I step in as the caregiver, she needs to respect the care she receives. I am the professional person providing home care. There have been times when she returned from the hospital and then to rehab and back home. I did contract some part-time assistance with homecare nursing for the short term.

3) Has your being a male made you less prepared or efficient as a caregiver?

Having worked previously within the healthcare system has exposed me to the assistance that comes with caregiving. In addition, having been rooted in human sensitivity has provided me with a foundation to complement the needs of the healthcare person.

4) What are some resources that you have found to be especially helpful and that you would recommend for others?

Always consider the local church, community and city services that offer guidance and support. Public and private agencies are easy to research via the Internet.

5) Do you communicate regularly with other caregivers for support?

Having a network of colleagues associated with caregiving is essential to maintaining balance. A support group with other caregivers creates a bond of positive feedback. Primary physician support staff members are often good individuals for consultations.

6) Caregiving can be stressful and socially isolating. Have you experienced this? If so, how do you cope with these challenges?

My network of support helps to keep me balanced when I experience challenges. We allow one another to vent our daily drama of caring for loved ones.

7) What rewards have you enjoyed as a caregiver?

Spiritually satisfying, caregiving brings the joy of assisting another person for the common good. Keeping a person exposed to dignity and love is uplifting to the spirit.

8) What advice would you give to other caregivers now that you understand what this responsibity entails?

Beware. Caregiving is not for everyone. Caregiving is not easy. Caregiving takes planning and involves orchestrating many daily human needs of an individual. Always maintain space between caregiving assignments and appointments to recharge.

9) How can those who are not caregivers support those who are?

Financial support would seem to be the easy answer. Nonetheless, periodic backup team members who are not caregivers can greatly assist primary caregivers. For example, team members can provide helpful phone calls to caregivers and homebound individuals.

10) Do you have any final words?

Caregiving is a rewarding experience that is not for everyone. As our mature population continues to live longer and more independently, there is an increasing need for caregiving at different levels. Respect for life must be admired, honored and planned for to create quality life.

Frank, thank you for sharing your caregiving journey. Your firsthand knowledge will be beneficial to caregivers, patients and many others involved in improving quality of life for those in need of caregiving assistance.

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

Service-Learning Reflection Poem (School-Nursing Home Partnership, Dementia)

2011-12-07T10:49:00.001-05:00

A national service-learning consultant and former schoolwide service-learning principal, I have had many occasions to witness intergenerational partnerships. Service-learning is a teaching and learning approach that connects learning with meeting community needs. Included in curriculum learning objectives, service-learning is used by many school and community organizations. For example, after students learn how to write letters, service-learning could include writing letters to older adults or hospitalized children who would benefit from receiving their letters. Of course, service recipients might show their appreciation by writing students letters in response. The exchange is always win-win, even when the rewards are intangible. And they usually are.

Nursing homes are ideal places for students to visit and share what they are learning in school. A growing body of service-learning research shows that students benefit academically and affectively as a result of service-learning. Because teachers prepare students well before their nursing home visits, students know what to expect. If a resident falls asleep or cries, students understand why that’s okay. The word "dementia" can be added to their vocabulary with relevance and meaning. They are open to the experience of being with the elderly and the challenged. They take pride in the roles they play in enriching lives.

After students return to school, they reflect on how the nursing home visit affected them, what they learned, and ways to share that information with others. While reflections can take many forms (written, oral, dance, music, art, etc.), the poem below is an example of poetic reflections from my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes, which includes a chapter on intergenerational partnerships between schools and nursing homes.

Student Reflections

I know you forget

you have a roommate,

imagine you take distant trips,

see me as a short brown blur

when I visit your nursing home.

I know your childhood

friends whisper secrets,

your favorite dress has ruffles,

my cards touch you with sunshine,

you love the stories I tell.

I know that carrots

make you frown,

my visits swing you higher,

loneliness glues you down,

you miss your friends who died.

I know you teach me

about new things,

praise me when I’m good,

help me care about others

the way you care about me.

Note: Winner of the National Service-Learning Partnership Trailblazer Award, Frances Shani Parker, a national consultant and former schoolwide service-learning principal, has been instrumental in implementing service-learning in school districts across the country.

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.

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Are You Satisfied With Your Hospice Job? (Research, Video 1: 22)

2011-11-30T02:52:00.001-05:00

Pictured are members of the Guardian Hospice Care Team in Alexandria, LA.

Are you satisfied with your hospice job? If a poll were taken today, do you think most of your fellow employees would share your feelings? How people feel about their jobs can impact their lives greatly. Taking time to evaluate job satisfaction can be informative, particularly for improving quality of life.

Hospice workers face unique challenges as they interact regularly with terminally ill patients and their families. How do workers in the various hospice disciplines rate their job satisfaction? Researchers at the Center for Bioethics at the University of Pennsylvania School of Medicine evaluated 8,495 staff members from 177 participating hospices in 41 states. They used the Survey of Team Attitudes and Relationships (STAR) with these results:

The mean score was 28 on a 0-100 scale. Hospice-level scores ranged from 15 to 44 with 44 being the highest level of satisfaction. The following are categories and scores:

Physicians -- 42

Chaplains -- 30

Nurses' Aides – 29

Nonclinical staff and clinical staff -- 28

Bereavement Coordinators -- 27

Nurses -- 26

Social Workers -- 25

This research concluded that variation in job satisfaction among hospices and disciplines is significant. Do these results surprise you, or did you expect them to be different?

In this video, Dr. Martha Twaddle, Chief Medical Officer of Midwest Palliative & Hospice CareCenter, explains the role of the hospice interdisciplinary team.

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

Holiday Blues Grief Support

2011-11-23T14:56:00.001-05:00

The holidays can be a troubling time for many who are adjusting to the loss of loved ones. Through the years, people associate holiday traditions with familiar people and places. These suggestions from Becoming Dead Right offer bereavement support for those grieving during the holidays:

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

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

Frances Shani Parker, 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

Holiday End-of-Life Conversations

2011-11-17T11:27:00.004-05:00

The holidays often provide opportunities for families and close friends to get together, reminisce, and have a joyful time. But what about happiness in the future? Why not take advantage of this time together to engage in important end-of life conversations that can be crucial later in honoring end-of-life wishes of those you love and yourself.

Engage With Grace is a a movement aimed at promoting these kinds of conversations using the five questions below. They’re not easy questions, but they are important and shouldn’t be ignored. Sometimes we think we know what loved ones want, and we really don’t. Later in life, when several people are involved in making inevitable decisions about life threatening health matters, guessing, confusion, and hurt feelings can easily hinder progress. The key to preventing this negativity is having end-of-life conversations when they can be positive with personal input regarding what loved ones really want. Fortunately, many people actually enjoy discussing their answers with loved ones.

Add new meaning to your holidays by including thoughtful conversations that can improve quality of life. No one knows what the circumstances could be at future family gatherings during a healthcare crisis. You and your loved ones can benefit greatly from answering these questions and implementing the suggestions given. The Caring Connections website has information to help you with your plans. (Click on the questions below to make them larger):

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

Nurses’ Burnout (Research, Video 1:43)

2011-11-14T03:20:00.000-05:00

Burnout among nurses can be costly, not only for nurses personally, but also in terms of litigation, staff turnover, and risks to patient care. While many nurses love their jobs, when frustration becomes overwhelming, burnout can set in. A University of Pennsylvania study of 95,499 nurses revealed that the highest job dissatisfaction was among nurses who worked directly with patients in hospitals and nursing homes.

One irony is that a major concern of nurses is healthcare benefits, which are less than other white-collar workers. Satisfaction levels of patients in hospitals are lowered when there are more dissatisfied or burned out nurses working among them. This can also negatively impact the quality of care patients receive. There is no one easy solution to the problem of nurses’ burnout. Various job issues have to be addressed.

At personal levels, nurses can benefit from the caregiving of others while they serve as caregivers themselves. Ohio State University Medical Center has started the Stress, Trauma and Resilience (STAR) program to do just that. Nurses and other healthcare providers receive support, particularly on reducing stress, crisis management, and peer counseling. This video describes the program:

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

Veterans: Hospice and Palliative Care Trends (Research, Video 4:46)

2011-11-09T19:16:00.000-05:00

If you are involved in hospice-palliative care work, you have probably had the opportunity to serve a veteran. Nat was my most memorable veteran patient. Although he had fought in Viet Nam years before we met as hospice volunteer and patient, his stories about his life and military service were as raw and real as any I have heard:

“I’ve seen and done things you couldn’t imagine. Some of them were horrible, I mean really horrible. Don’t ask me to tell you what they were, because I can’t talk about it. They say time heals all wounds, but it’s a lie. I left Viet Nam, but Viet Nam never left me. I carry it with me everywhere I go. All these years later, I still have nightmares like you wouldn’t believe. The doctor says it’s post-traumatic stress disorder or PTSD. I wake up shaking, gasping for breath with tears in my eyes. In my dreams, I’m always running hard, trying to escape. Sometimes my enemies are close enough for me to touch. I almost stop breathing to keep them from hearing me. I’m constantly thinking I’m not going to make it. Some nights they kill me before I wake up.” (Excerpt from Becoming Dead Right)

Nat is like many men and women who have served our country and now find themselves in need of hospice care. The number of veterans receiving hospice care continues to become a major area of expansion for the Veterans Health Administration. Research by the Department of Aging and Mental Health Disparities at the University of South Florida reports that, of the millions of dollars being spent on veterans in hospice care, most of the funds are spent on younger veterans. Future trends indicate a growing need to allocate more funds for end-of-life care. Support and appreciation for the horrific sacrifices veterans have made are especially important during their death journeys.

This video titled Reaching Out to Those Who Served was produced by the Tennessee Hospice Association as part of a grant through the Veterans Administration and the National Hospice and Palliative Care Organization. It presents a detailed overview of hospice and palliative care services for veterans.

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 Sleep Problems: Drug-Free Solutions (Research, Video .25)

2011-11-04T04:12:00.001-04:00

Older adults have sleep problems just like millions of others do. Unfortunately, they often find inappropriate treatments that they may think are effective. This sleep research, conducted by the University of Pennsylvania School of Medicine, focused on the perceived effectiveness of older adults’ various sleep treatments. Information was gathered through a mailed questionnaire to a community-based sample of older adults with 242 responding. These are examples of the sleep interventions older adults used:

1) Watching television, listening to the radio, and reading were the most popular interventions.

2) Taking medications such as pain medication and prescription sleeping pills were also common. Older adults perceived sleeping pills as being most effective.

3) Drinking alcohol was another form of self-treatment.

About half of those using alcohol and prescribed over the-counter sleep aids had not discussed their sleep problems with their doctor. Not discussing sleep problems and treatments they are using with their doctors can worsen their problems and possibly put them in serious danger healthwise. Healthcare providers and caregivers should make it a point to initiate conversations with older adults about sleeping patterns.

In this video, Dr. David Schulman, Sleep Specialist at Emory University, recommends the following seven drug-free sleep tips. Older adults, in addition to keeping their healthcare providers informed, can use them:

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

Becoming a Hospice Volunteer Against My Will

2011-10-28T01:23:00.009-04:00

People often ask me how I became a hospice volunteer. For the record, nobody is more surprised than I am. You know how some people can walk into a patient’s room, plump pillows, and make all the right comments? Years ago, I was not that person. I never really felt comfortable visiting sick people. Working in the healthcare arena seemed depressing. Besides, I had made a conscious decision to become an educator when I was in fifth grade. Unlike many who have chosen hospice volunteering, my motivation had no connection with professional choice or with anyone close to me dying, although I had experienced that several times.

So, how did I get into this situation? I was principal of an urban public school located in an area of high poverty, crime, drugs, prostitution, and homelessness. Major problems of others clamored for space on my always-crowded plate. Over a three-year period, I was thrust into life-threatening predicaments of two men I didn’t know well who were suffering with AIDS, an infectious disease of the immune system caused by the HIV virus. They were my introduction to serious caregiving of the terminally ill.

The first man, who was in total denial about his condition, also had dementia that included daily harassment by invisible people. After he died, I sighed, thinking that scenario would never happen to me again. A year later, the second man showed up. Both men lacked strong support systems, which were crucial during the 1990’s when infected people were ostracized and dying quickly. My mother warned me to stay away from them or I might “catch” it.

But I didn’t stay away. I served as these men’s hospice volunteer without even realizing I was one. It just made good sense, and we all benefited from the experience. I discovered significant layers of myself that I never knew. After my involvement with the men ended, I ran into a friend who said she was performing service as a hospice volunteer. Her description of what she did sounded very familiar. A few weeks later, I read a newspaper ad about hospice volunteer training classes. I decided to get certified to do what I had already been doing and become even more prepared if somebody else ill showed up.

As an official hospice volunteer for many years, I have served numerous terminally ill patients who showed up. In addition, I have been writing Hospice and Nursing Homes Blog for several years and have recorded my hospice volunteer experiences and insights in a published book titled Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. I enjoy consulting with groups, advocating for patients, and educating caregivers, healthcare workers, policy makers, and the general public.

End-of-life care for millions of aging baby boomers continues to challenge our healthcare system and society. More people are needed to dig into wells of themselves and provide solutions to these growing concerns. Consider becoming a hospice volunteer. Various assignments are available to accommodate your personal comfort zone. Your service as a hospice volunteer can be a win-win experience, even if you didn’t plan to be one.

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

Informal Bereavement-Grief Rituals After the Death Ritual (Research, Video 3:46)

2011-10-21T08:52:00.000-04:00

Honoring a loved one who has died is not a single act, but a unique personal journey that may consist of many small tributes. With various options available for bringing formal closure to life such as funerals, hospice services, and other memorials, the majority of family members and friends of the deceased still do not attend these traditions. This is not to say that formal death rituals are not appreciated and viewed as significant. But many people rely more on informal grief expressions to help them cope in their daily lives after formal events.

A grief ritual study in Palliative Medicine reports that these important informal rituals, which maintain an ongoing bond with the deceased and ensure remembrance, fall into these four categories:

1) Rituals to maintain a “direct link” to the deceased

2) Rituals undertaken “for” the deceased

3) Rituals that remember the deceased within the community

4) Rituals viewed as acts of remembrance.

For most people, these informal activities are endearing expressions that sustain them during their long-term adjustment to loss. Death rituals continue to evolve with the passage of time. Choosing how to bring closure to the lives of deceased loved ones becomes more personalized. Increasing numbers of relatives and friends unfasten their earthly connections with loved ones and move forward with informal rituals. Do you have any informal rituals connected to deceased loved ones?

This video titled In Memory of My Grandma is an example of how a family member copes with loss and honors grandmother Agnes Rehfeldt.

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 Volunteers for Pet Owners: Pet Peace of Mind (Video 8:06)

2011-10-13T20:45:00.001-04:00

What would you do if you were dying with no one to care for your pet? What would happen to your pet if you actually died? If you had no reliable support system in place, your pet could end up at an animal control shelter where it might not be adopted within a certain time frame and could be euthanized. A national program for non-profit hospices, Pet Peace of Mind provides help to hospice patients experiencing these problems. Funded by Banfield Charitable Trust, this program works with hospices in providing temporary and permanent care for pets of hospice patients. Care includes training materials, routine pet care, and tools to facilitate adoption.

For many people, their pets are their family, sometimes their only family. They love and worry about their pets in the same ways others express concern about their children. When hospice patients are too ill to care for pets or need others to take full ownership of pets after they die, knowing a hospice volunteer will provide that care can be the difference between having a death journey with peace of mind or having one feeling depressed and anxious about the pet’s well-being.

This video titled Pet Peace of Mind from Banfield Charitable Trust shows the importance of having a pet adoption program available for hospice patients.

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

Hispanic, Mexican American Male Caregivers (Alzheimer’s Video 2:48)

2011-10-07T01:05:00.000-04:00

According to the National Alliance for Caregiving, in collaboration with AARP, more than 65 million people, 29% of America’s population, are caregivers for the chronically ill, disabled, or aged family members or friends. A family caregiver is usually a woman. Typically, she is 49 years old and caring for her widowed 69-year-old mother who does not live with her. She is married and employed. More than 37% have children or grandchildren under 18 years old living with them.

With these statistics, it’s little wonder we seldom hear about male caregivers, but they are out there with stories that need to be told. This post focuses on Hispanic, Mexican American male caregivers, particularly those taking care of parents. In a federally-funded study of 110 Mexican Americans who were caregivers in lieu of a female relative, the following results were reported:

1) Caregiving strain and burden in Mexican American males may have more to do with physical and emotional costs than financial ones.

2) Mexican American males providing personal care for their mothers adopt a matter-of-fact approach as they act "against taboo."

3) This caregiving approach is a new way to fulfill family obligations

Ric Gomez quit his job and became a caregiver for his father who has Alzheimer’s disease. In this video interview with KPBS reporter Amita Sharma, Ric shares the triumphs and challenges of his caregiving experience.

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

Sexuality of Older Adult Residents: Nursing Staff (Research, Dementia Video 3:09)

2011-10-01T02:01:00.007-04:00

“You just made me throw-up in my mouth a little.”

“How about old people just stop having sex?”

These are a few of the negative stereotypical responses, including “funny” photos of diapered seniors, that I received at a social media site. Some are too vulgar to print here. I was attempting to initiate an intelligent discussion on the life-threatening topic of older adults and the prevention of HIV/AIDS. No one took this matter seriously. Disgust and ignorance are still perpetuated by many regarding adults having sex during their senior years.

Sometimes healthcare workers also reflect these biases, particularly regarding older residents with dementia. Examples are discomfort, denial, and other reluctance by some staff members when they are confronted with the sexual behavior of older residents in nursing homes and long-term care facilities. A study involving an extensive search of electronic databases of nursing staff and reported in the International Journal of Nursing Studies revealed the following:

1) Nursing staff shows rather positive attitudes toward later-life sexuality.

2) The extent of the staff’s knowledge regarding sexuality in the aged seemed to be very limited.

3) Staff caregivers hold rather conservative attitudes toward sexuality of institutionalized elderly.

4) Responses to residents' sexual behavior were influenced by the nursing staff’s own level of comfort related to sexuality issues and the culture within the institution where they work.

More research and education programs are needed on this topic in order to foster positive attitudes about sexuality of older adults. This video titled Freedom of Sexual Expression presents sexual expression as a basic human right for all residents, including those 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

Want Hospice Care? Refer Yourself. (Video 3:11)

2011-09-23T02:20:00.001-04:00

How do you get hospice care? The usual response to this question is that you have to be referred, and doctors have to sign off to make it official. Many people assume this means a family member or a healthcare professional must initiate the referral procedure. Wrong. You can refer yourself.

Maria Hodges suffered for many years with emphysema. Eventually, her body deteriorated to a point where she knew she was dying and couldn’t handle it alone. She went to the Hospice & Palliative CareCenter in North Carolina and referred herself. Her biggest surprise was her discovery that they would treat her in her own home. This is Maria’s story about “the hospice touch” that made her feel cared for and safe after she referred herself:

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

Intergenerational Volunteering Relieves Dementia Stress (Research, Video 1:38)

2011-09-15T01:07:00.000-04:00

I watched them playing together, both mesmerized by the rolling magic of a colorful ball slowly passing between them. One was two years old, and the other was eighty years old with dementia. I couldn’t help but smile. They had discovered the bridge that eludes many of the wisest and most educated.

The bridge is that universal connection between two people that makes them one in the moment. Too often, it is assumed that people with dementia, who may not even recognize their own children, are no longer capable of truly connecting as volunteers for others. Thoughts of having them improving their quality of life while performing intergenerational service can easily be dismissed. That’s when we have to be reminded about the bridge. The Department of Humanities at Penn State College of Medicine did just that when they set out to research whether an intergenerational volunteering intervention could enhance quality of life for persons with mild to moderate dementia.

This research involved fifteen participants forming intervention and control groups. Volunteering in hour-long sessions with kindergarteners and older elementary students, intervention group members participated in alternating weeks over a five-month period. Data were collected and analyzed regarding their cognitive functioning, stress, depression, sense of purpose, and sense of usefulness.

Results indicated significant decrease in stress and improved quality of life in three main areas: perceived health benefits, sense of purpose, sense of usefulness, and relationships. Results didn’t mention the bridge, but I know it was there. That’s what the bridge does when appropriate opportunities are created for it to transform lives.

In this video from the Alzheimer’s Society (UK), Lesley, who has dementia, has been fortunate in discovering many bridges that improve the quality of her life. She discusses her previous work with children, her current volunteering with learning disabled adults, and the “lucky” moments that inspire her to be herself.

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

Ground Zero Poem: Hotel Room View

2011-09-07T00:50:00.002-04:00

Frances Shani Parker

Like many others, I felt compelled to visit Ground Zero in New York City after the September 11, 2001 terrorists’ attacks on the World Trade Center. I requested a hotel room with a view overlooking the excavation. An aura of heartache permeated the air, while numerous memorial displays comforted those who sought healing. After taking this picture, I wrote these poetic reflections:

Ground Zero

Scattered images of causalities,

thousands of love notes

blanket a former battlefield.

Whispered memories,

flowered tributes coax

closure of doors left ajar by trauma.

From my hotel window, I watch

the Ground Zero real-time movie

of a 21st century grave excavation

where the World Trade Center

stood and fell, a kindling target

for terrorists’ fires.

Hills with human remains

transport like treasures

to a Staten Island landfill.

Conveyor trucks beep

warning chants of danger

to a world in global doom denial.

I view the sixteen-acre hole

in the heart of a grieving nation,

listen to victims’ voices

share their haunting horror:

“We fought to live and love

trapped in a fatal inferno,

marooned in a tomb of ruins.

We nursed at the breast of fear

until our spirits were free.”

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

Training Hospice-Palliative Volunteers for Cultural Competence (Research, Video 1:42)

2011-09-02T01:30:00.006-04:00

Hospice-palliative volunteers and other healthcare workers can operate with a higher level of confidence and efficiency when they display cultural competence during their interactions with diverse patients. This competency is greatly needed to foster increased participation of ethnic groups that continue to underutilize hospice-palliative services.

A study in the Greater Toronto Area (GTA) examined the current state of culturally competent care. Using 14 hospice volunteers, researchers from the Department of Sociology at McMaster University did in-depth interviews with them to gain more understanding about their cultural competency status and challenges such as misunderstandings resulting in hurt feelings. Volunteers revealed the following in their responses to the questions:

1) Volunteers with weak levels of cultural competence said they encountered cultural clashes with patients.

2) Volunteers revealed that they needed more education in cultural competence as part of their hospice training.

3) There was a lack of ethnic, cultural, and linguistic diversity among the hospice volunteers.

While this research was done with a small group, it serves as an example to hospice-palliative organizations and other healthcare institutions that cultural competence issues must be addressed. Ongoing staff education is a necessary component for the successful delivery of healthcare. In addition to improving patient-staff relations, eliminating cultural insensitivity and miscommunication will positively impact patients’ quality of life.

This video explores the importance of cultural competence training for workers in a cross-cultural healthcare environment. Examples of various cultural groups and how to interact with them are explained:

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

A Nursing Home is Like a School: Person-Centered Culture Change (Video 3:06)

2011-08-26T02:16:00.001-04:00

I started hospice volunteering in Detroit nursing homes while I was a public school principal. It didn’t take long before I observed that nursing homes and schools have several important similarities. Both have cultures that impact people in institutions. A paradigm shift in how some of these institutions are often perceived, not only by the public, but also by those who work in them, is long overdue. This needed transformation is often referred to as person- centered culture change, a movement that focuses on values and practices that respect the input of everyone involved with the institution. Through the eyes of an educator, I will mainly address culture change regarding residents.

In order for a person-centered climate to fully enhance quality of life in nursing homes and other residential institutions for older adults, residents must have experiences similar to what students should have in schools. Like students, residents must first know that the nursing home is a real “home” where they are welcomed and cherished at all times. They must feel that their environments are safe, that trustworthy employees care about them and listen to them with their hearts. Residents must know that their progress as individuals with specialized needs is the primary motivation for everything that goes on. Those with dementia should be challenged to learn new skills in non-threatening ways.

Residents must know that the personal histories they bring matter. These life stories help create who they are, not labels used to judge them and put them in stereotypical categories during their later years. They need ongoing encouragement to use their strengths in productive ways to improve their self-esteem and enhance lives of others. Their talents and accomplishments should be shared with the larger group so they can be appreciated and praised. Finally, their “graduations” (deaths) should be recognized as revered events.

For many institutions, person-centered culture change may seem overwhelming. But the rewards are immense when sincere efforts begin with everyone’s ongoing commitment to succeed. This video titled Where to Start shares an example of person-centered culture change being implemented in a nursing home:

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

Ten Steps to Being a Great Hospice Volunteer

2011-08-19T01:18:00.008-04:00

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1) Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2) Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3) Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4) Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5) Know your piece in the puzzle.

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6) Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7) Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8) Pick up a turtle.

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

9) Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

10) Expect rainbow smiles.

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing experiences for you to positively impact lives. When you do, rainbow smiles will come.

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

Should Loved Ones Watch CPR (Cardiopulmonary Resuscitation)? (Research, Video 2:13)

2011-08-11T03:15:00.000-04:00

Your loved one is in the throes of cardiac arrest. Tension engulfs the air as medical personnel proceed to perform CPR. Should you be allowed to watch? Do you even want to? Many will say you shouldn’t watch because of possible anguish and confusion involved. Some medical personnel may be concerned about liability and possible interference by you or family members witnessing this traumatic event.

But research supports having family members present. Witnessing CPR of a loved one helps observers understand the severity of the situation, appreciate the care being given, and even supports healthy grieving by confirming that everything was done. With the development of appropriate policies and proper training of staff, the presence of family members during CPR can be a fulfilling experience.

This video shares positive views on this topic from Dr. Tammie Quest, Director of Education in Palliative and End-of-Life Care - Emergency Medicine Project, Associate Professor, Department of Emergency Medicine, Emory University School of Medicine:

Contact your local American Red Cross for CPR training.

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)

2011-08-05T01:37:00.000-04:00

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

Patient Violence Against Healthcare Staff (Research, Video 2:46)

2011-07-29T02:54:00.001-04:00

The first time I saw a female nursing home resident with dementia attack a female nursing assistant (CNA), I really wasn’t surprised. Violence has become so embedded in our society that it’s expected, even in healthcare facilities. I was a hospice volunteer in an urban nursing home. The incident happened so quickly, I almost missed the facial punch that struck the CNA so hard I thought she would fall to the floor. What followed the punch is what impressed me most. There was a brief pause while the CNA steadied herself and walked away. Another CNA immediately interceded and calmed the resident who may have forgotten what she did later.

Long-tern care staff members are at high risk for experiencing aggression from residents. They need ongoing safety information to prepare themselves. Reported in the Journal of Clinical Nursing, results of a focus group study involving the interviewing of 30 nursing home staff caregivers revealed these three caregiver themes regarding patient aggression:

1) Caregiver explanations regarding the occurrence of aggressive behavior and contributions of residents and caregivers

2) Measures for handling the aggression of residents

3) Caregiver self protection and coping with aggression

While staff caregivers use many interventions to reduce aggression, too often they ignore their own practical knowledge about connections between aggressive behavior, pain, and other physiological issues that may cause aggression. More education and emphasis on a systematic approach, including factors leading to aggression, is needed to help staff caregivers better manage resident aggression and their own coping strategies.

This video reminds us that violence against healthcare workers impacts everyone:

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 Chaplains: Who Wants Them? (Research, Video 1:11)

2011-07-22T01:17:00.000-04:00

Being diagnosed as terminally ill can trigger many thoughts in a person’s mind. Considerations may include if or how their lives matter, what they can do to make their final journey more productive, what happens after death. For those who are inclined toward beliefs in religious or spiritual truths, the hospice chaplain is someone they may want to counsel them with answers.

What do patients expect to receive from hospice chaplain visitation? Who are the people who request this support? Why are these visits important to them? These are questions that the Department of Chaplain Services at the Mayo Clinic in Minnesota researched with 4500 eligible medical and hospital patients in Minnesota, Arizona, and Florida. About one-third of the mostly male, married, over age 55 Protestants and Catholics responded from each site with these results:

1) Nearly 70% of patients reported wanting chaplain visitation.

2) Chaplains visited 43%.

3) Indicating that visitation by a chaplain was important were 81% of patients.

4) The strongest predictor of wanting chaplain visitation was denomination vs. no indicated religious affiliation.

5) The most important reason for patients wanting chaplain visitation was that chaplains served as reminders of God's care and presence.

Being religiously affiliated is a very strong predictor of wanting chaplain visitation. In this video, Sig Jaeger, chaplain of Hospice Palm Beach County in Florida, and a patient share their mutually beneficial visitation experiences together:

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

Nursebot Pearl, a Robotic Assistant for Older Adults (Video 5:21)

2011-07-14T01:28:00.002-04:00

Meet Nursebot Pearl, a robot that will make you rethink your vision of how a caregiver can look and interact with you. Whenever I mention the use of robots for improving the quality of life of older adults, someone feels compelled to remind me that robots can’t replace people. I totally agree. But the reality is that people are living longer, and the population of older adults with ongoing health concerns continues to increase. Those living at home with chronic disorders are particularly in need of support that robotic technology can provide.

Several years ago, researchers from the University of Pittsburgh and Carnegie ‎Mellon University started the Personal Robotic Assistants for the Elderly project, an inter-‎disciplinary multi-university research initiative focused on robotic technology for the ‎elderly. The project goal is to develop mobile, personal-service robots that assist older adults suffering from chronic disorders in their everyday lives. Pearl continues to be researched and improved. The National Science Foundation funds her development.

A talking robot, Pearl’s face has interchangeable parts that display various emotions. Among many tasks, she can help seniors maintain their independence by reminding them about hygiene, medications, doctor’s visits, and other important information they might forget. She can send information remotely to caregivers and provide needed strength for manipulating objects. A major benefit for older adults living alone is the social interaction they can enjoy in her company.

Robotic technology provides many ways to assist older adults. New techniques are slowly becoming an integral part of our present and future. You can view Pearl in action on this video:

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

Join Hospice Community Forum: An Interactive Website for the Hospice Community

2011-07-07T21:54:00.003-04:00

Hospice Community Forum is a welcoming haven for topics of interest to hospice workers and supporters of the hospice-palliative care philosophy. This informative cyber meeting place is sponsored by the Hospice Volunteer Association, the world’s leading association for hospice volunteers and their managers. Greg Schneider, who has been a patient-care volunteer for adults and children since 1996, founded the Hospice Volunteer Association and the Hospice Community Forum.

An interactive website, Hospice Community Forum serves as a networking tool bringing people with similar interests together. Each member has a personal web page, and input from participants is welcome. Many networking components are available. They include forum discussions, news, videos, special interest groups, photographs, and events.

These are just a few of the many groups (35) that members can join:

Volunteer Management, Volunteer Vigiling, Caregiver Volunteer Training, Bereavement, Books, Cultural Diversity, Poetry and Quotes, Hospice Caregiving Stories, Alternative Therapies, and Employment Opportunities.

Lively forum discussions have included, among other topics, discussions about successful volunteer coordinator strategies, hospice recruitment, spirit sightings, prison hospice, communication with non-verbal patients, and pet therapy.

Many videos and photos are available for viewing, and members can upload and share their own. Popular videos have included So You Want to be a Hospice Volunteer, Solace: Wisdom of the Dying, Young@Heart Movie Trailer, Being With the Dying, Dementia Caregiving With Patience, Our Deepest Fear, and How a Miracle Happens.

Join us at Hospice Community Forum. Get to know others who share your interest in topics relating to quality end-of-life care.

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

Dolls and Other Dementia Therapy (Research, Video 2:32)

2011-07-01T02:57:00.002-04:00

“What’s your baby’s name?” I asked while exploring my hospice dementia patient’s reality. Susan and her doll stared at each other, grinning as if they knew secrets from ancient times. And maybe they did. She looked at me, pointed to her doll and said, “She’ll tell you her name when you come back with cookies.” (excerpt from my book Becoming Dead Right)

Patients with dementia find various stimuli engaging, some more than others. It’s important for caregivers to know which approaches are more likely to be successful when working with patients. The Research Institute on Aging of Charles E. Smith Life Communities in Maryland did research to determine stimulus engagement with193 residents of seven Maryland nursing homes. These results were reported in the American Journal of Geriatric Psychiatry:

1) One-on-one socializing with a research assistant, a real baby, personalized stimuli based on the person's self-identity, a lifelike doll, a respite video, and envelopes to stamp were the most engaging stimuli.

2) Refusal of stimuli was higher among those with higher levels of cognitive function and related to the stimulus' social appropriateness.

3) Women showed more attention and had more positive attitudes for live social stimuli, simulated social stimuli, and artistic tasks than did men.

4) Persons with comparatively higher levels of cognitive functioning were more likely to be engaged in manipulative and work tasks, whereas those with low levels of cognitive functioning spent relatively more time responding to social stimuli.

5) The most effective stimuli did not differ for those most likely to be engaged and those least likely to be engaged.

Caregivers, particularly those in long-term care facilities, can use these dementia therapy research results when planning engagement stimuli and one-on-one socialization schedules for residents with dementia. This will help caregivers maximize benefits for patients.

As a hospice volunteer in Detroit nursing homes, I observed how easily many patients with dementia enjoyed their close relationships with dolls and stuffed animals. In this video, a daughter does doll therapy with her mother, who is past middle stage dementia. I found this video particularly interesting because, unlike many patients I have observed, this mother freely admits she knows her doll is not a real baby. But she still enjoys nurturing the doll and pretending it is real. The daughter wonders if the doll therapy is truly age appropriate for her mother. This video shares the mother’s response.

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 Racial-Ethnic Outreach: African American Brochures (Research, Video 1:47)

2011-06-24T03:15:00.001-04:00

Hospice services are underutilized nationally among racial-ethnic communities. While several barriers to utilization have been studied, solutions always include the necessity of more outreach to racial-ethnic groups by hospice organizations.

The Leonard Davis School of Gerontology at the University of Southern California researched the outreach possibilities of comprising a brochure of hospice patient role model stories aimed at improving attitudes and knowledge of hospice among older African Americans. They used community-based organizations that included senior centers, community exercise programs, churches, and senior care management services in the greater Los Angeles area. Participants were seventy-one African Americans aged 65 and older.

Hospice brochures with role model stories showcased African Americans who had experienced successful hospice programs. They shared their initial attitudes, beliefs, influences affecting their enrollment in the hospice programs, and outcomes resulting from their participation. The conclusion of this pre-post pilot study revealed that "exposure to a hospice brochure containing theoretically driven, culturally parallel, role model stories was effective in improving knowledge of and attitudes toward hospice as well as intentions to enroll a family member or self in hospice care.”

The hospice philosophy promotes the entitlement of quality end-of-life care for everyone. Culturally sensitive brochures are among many examples of what hospices organizations committed to that philosophy can do to enhance community outreach. In this video, Treasure Coast Hospice of Florida shares testimony from role model Marian about her positive hospice experience while caring for her sister Valerie.

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

Patients Rate Communication With Doctors (Research, Video: 52)

2011-06-17T01:48:00.001-04:00

Does your doctor communicate well with you? Can you ask any question and feel heard, cared for, and unrushed? Are you involved in treatment decisions? Good communication includes compassion, respect, and attentive listening skills. To some degree, these skills can be taught, which is why medical students are given formal training in them. What are the mutual benefits? Doctors can benefit from fewer lawsuits and better reputations, which can enhance their careers. Patients benefit with happier healthcare experiences and better health, even in terms of life and death.

But what is too often the reality of patient-doctor communication from patients’ perspectives? A study reported in Cancer revealed these research results from questionnaires answered by 276 white, black, and Hispanic patients in various stages of lung cancer:

1) For most topics, the majority of respondents reported that physicians communicated "not at all" or "a little bit."

2) Low ratings were frequent for discussion of emotional symptoms, confidence interval, practical needs, spiritual concerns, proxy appointment, living will preparation, life support preferences, and hospice.

3) Communication was inadequate for patients of different ages, stages, and races, although Hispanics were less likely than non-Hispanic whites and blacks to report inadequate communication.

Unfortunately, many of the topics reporting low rates of physician-patient communication impact patients’ health in very detrimental ways, including additional stress, impaired decision-making, and compromised outcomes. These results support research from Massachusetts General Hospital regarding the link between doctor –patient communication and outcomes. This video shares research results and insights for the future.

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-Palliative Volunteer Ethics Boundaries (Research)

2011-06-09T22:41:00.002-04:00

Does your hospice-palliative care organization have clear guidelines regarding boundaries for volunteers? If not, consider creating or modifying them to prevent future problems. Mount Allison University in Canada researched this ethics concern with two community-based hospice programs. When 79 hospice-palliative volunteers responded to a 27-item Boundary Issues Questionnaire, they indicated the boundary of each item. These are examples of one item in each of the three major categories:

Definite Boundary Issues

(things volunteers should never do).

1) Accept money from a patient or family.

Potential Boundary Issues

(things volunteers should stop and think twice about doing)

2) Accept a gift from a patient or family.

Questionable Boundary Issues

(things volunteers should be aware of doing)

3) Give your home phone number to a patient or family.

Would you agree with the three major labels? What are other items that volunteers might place under the three various categories? It would be interesting to know what volunteers perceive as their individual items of concerns and how they differ or agree on the boundaries relating to various items.

This research confirms the need for official boundary statements. This is information volunteers can benefit from through discussion and implementation with written policies. Keep in mind that having no clear boundary policies may lead to negative consequences later.

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 booksellers.

Hospice and Nursing Homes Blog

Volunteer Program for Older Adults: RSVP (Retired and Senior Volunteer Program, Video 3:45)

2011-06-02T21:26:00.003-04:00

Years ago, I shared a conference keynote speaking engagement with Arun Gandhi, Mahatma Gandhi’s grandson. Although we had not met before, we both spoke highly and at length about how our grandparents’ example had inspired us to embrace service.

Mahatma Gandhi was the spiritual leader of India during the Indian independence movement against foreign domination. He implemented a nonviolent philosophy of civil disobedience that inspired civil rights movements globally. Growing up in apartheid South Africa, Arun Gandhi had already learned from his grandfather the power of transforming the opponent through love and suffering.

My grandmother modeled service in her daily living. I observed her caring for others many times in ways such as giving food to strangers who knocked on her door. I recall comments some observers made about how she was being used, and she shouldn’t be giving her food away to strangers. But I saw her smiling as she looked out the window and watched recipients gobbling up her sandwiches and fruit. And she kept right on giving, never knowing that one day her granddaughter would praise her on something called the Internet. If she were alive today, she would be telling everybody at her church.

Thank goodness for all the older adults who continue to strive to make the world a better place by giving service to others. Fortunately, they don’t have to look far to find an organization like RSVP that can channel their enthusiasm into volunteer programs where their many skills can be matched appropriately with others’ needs. RSVP means Retired and Senior Volunteer Program. This federal program, which partners with local agencies across most states, is administered locally by both public and private organizations that serve the public in some way. Because of the wide range of services available, over 500,000 RSVP volunteers choose services they feel confident and comfortable in doing. Free training is included when necessary.

Of course, true service is always a win-win opportunity. Volunteers benefit with improved self-esteem, better health, more social interactions, and more learning experiences. They can also get reimbursed for some job-related costs. Research studies indicate that volunteering leads to a more positive mental attitude and to a longer life. This video explains the many services and rewards of volunteering with RSVP:

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

Should Hospice Prison Inmates Be Released Early? (Video 1:56)

2011-05-26T02:47:00.004-04:00

Quality end-of-life care in prison continues to grow as more prisons establish hospice programs, particularly for an aging prison population. Inmate hospice volunteers play an important role. If a terminally ill patient is in prison, attentive caregiving can be especially beneficial when given by familiar faces of those who have also experienced the prison system.

Controversial discussions continue to surround the topic of early release options for older adult inmates who are infirm and ill. Referred to as “compassionate release” and “medical parole,” supporters feel that placing these inmates in private medical facilities would be more cost effective for the prison system, especially for prisoners serving life terms and no longer considered a danger to society. Others who support victims of heinous crimes are adamant that prisoners should serve their life terms in prison regardless of their age and severity of their illness. What do you think?

Note: Grace Before Dying by Lori Waselchuk is an award-winning photographic documentary that chronicles the prison-run hospice at Angola State Penitentiary in Louisiana. She photographed the picture of the two men above. Read more about her work here.

This video presents the pros and cons of early release of aging, infirm, and ill inmates who are housed at the California Medical Facility where a hospice unit currently provides end-of-life care.  

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

Grief Support for Co-Workers and Classmates (Video 1:05)

2011-05-20T04:02:00.002-04:00

Comforting co-workers and classmates who are struggling with grief symptoms is uncomfortable for many people. While they may have good intentions, they often lack confidence regarding what to say or do that will help mourners adjust to a loss. At the workplace and at school, many staff members and classmates may feel that only experts should handle grief support. Worried that they might cause hurt feelings, they may remain distant from those mourning. Holding back their support, however, can negatively impact their colleagues who are suffering.

Although counselors and others trained in grief management play an important role, colleagues can also make beneficial contributions. Workshops, meetings, and classes at the workplace and at schools should include time for sharing strategies everyone can incorporate to alleviate grief as a community representing individuals of the organization. Implementation of these strategies can help create workplace and school cultures where everyone feels inspired to support one another in whatever ways they can during times of grief.

Sandi Sunter, director of community development for the Hospice of the Florida Suncoast, offers suggestions for coping with a co-worker’s death  in this video titled “Hospice Care & Grief Counseling: Dealing With a Co-Worker's Death.”

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

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

2011-05-13T16:26:00.007-04:00

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

Fears of Lesbian, Gay, Bisexual, and Transgender (LGBT) Older Adults: Healthcare Staff Training and Housing (Research, Video 5:11)

2011-05-06T02:13:00.005-04:00

Lesbian, gay, bisexual, and transgender (LGBT) older adults living in nursing homes, long-term care, assisted living, and even those receiving home care from healthcare workers have increasingly been discriminated against and abused by staff and fellow residents. Damage to their emotional and physical health has been so devastating that some LGBT residents have resorted to suicide.

In a study at Yeshiva University in New York, elderly participants in community and long-term care settings reported the following fears:

1) Fear of being rejected or neglected by healthcare providers, particularly personal care aides

2) Fear of not being accepted or respected by other residents

3) Fear of having to go back into the closet and pretend their sexual orientation is different

Important solutions to this problem include a national drive to train long-term care providers in equitable and compassionate care. University of Iowa findings from a nationally representative mail-in survey of over a thousand nursing home and social service directors revealed that three-fourths of the sample had not received even one hour of homophobia training over the past five years. Directors with the most experience reported having the least training. More development and dissemination of homophobia training is critically needed along with policy changes that positively impact the quality of life of LGBT older adults.

A move for separate, but equal housing is another solution that has been implemented to counteract the inequities many LGBT seniors experience. The nonprofit, 104-unit Gay and Lesbian Elder Housing (GLEH) Triangle Square in Los Angeles, California is the first affordable housing facility for lesbian and gay seniors. “A Place To Live - The GLEH Triangle Square Story,” a film by Carolyn Coal and Cynthia Childs, chronicles the journey of seven seniors attempting to secure a home there before it opened a few years ago.

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

Massage Therapy in Hospice and Palliative Care (Research, Video 3:35)

2011-04-29T02:34:00.007-04:00

When I reached over and held my hospice patient’s hand, she smiled saying, “Now, that’s nice.” This simple meeting of skin and energy represented her treasure for the day, week, month, or whatever amount of time had passed since her last encounter with physical affection from another human being. For many patients in nursing homes, these moments seldom came.

Although little research on the use of touch with older adults has been done, it is obvious that touching can be a positive form of communication. But touch can do so much more. When used during massage therapy with older adults, particularly those receiving hospice-palliative care, touching can improve their quality of life significantly on several levels. The Gerontology Department at the University of Kentucky compared self-reported health outcome scores among older adults regarding their use of massage therapy. Those who reported massage therapy usage in the past year had significantly better health outcome scores in the following domains:

1) Emotional well-being

2) Limitations due to physical issues

3) Limitations due to emotional issues

These research results reinforce the beneficial role massage can play in hospice-palliative care.

This video from Everflowing showcases a touch exercise during a hospice caregivers’ training workshop. Irene Smith, who believes the healing of touch is reciprocal, narrates “The Language of Touch.”

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

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

2011-04-22T03:02:00.002-04:00

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones 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. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1) One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2) One in six (16.5%) would only "probably care again."

3) Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4) Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

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

Diabetic, Hospice Amputee Outruns Death: “World Champion” Poem

2011-04-15T01:56:00.009-04:00

Skoney, a diabetic amputee who was also mute and partially blind, epitomized “down, but not out.” My hospice volunteer experiences with him at the nursing home inspired me to write “World Champion,” a poem about his long-distance death journey. Although Skoney endured several close calls with death, he repeatedly overcame them until he eventually died one day. Observers couldn’t understand why he didn't give up sooner. Didn’t he know that death would make him free? Because he had no legs and was such a determined survivor, I viewed him as an Olympic marathon runner.

World Champion

Your bedridden body

wins survival marathons,

breaks records in life's

Olympic Games.

I touch your skeletal chest,

feel spirit of an aging heart

that outruns the Grim Reaper

in back-to-back wins.

Some pity your amputated legs,

anguished moans, unexpected

comebacks when death

competes with bare existence.

No one claps or cheers

for your personal-best pace

toward the final race

when you clear each hurdle.

They don't understand

why you won't give up

when you defend each challenge

to clock more blocks of time.

Your laps for life press onward

as you struggle to the finish,

grin like a World Champion

each time you grab the gold.

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

Quality of Life for the Oldest Old With or Without Dementia (Quiz, Research, Video 1:06)

2011-04-08T02:44:00.007-04:00

How happy will you be when you’re 100 with or without dementia? Little research has been done regarding the quality of life of the oldest of the old, particularly those with dementia. With more people living longer, information concerning this age group is becoming more of a priority. Due to their interactions and observations of those aging in their care, caregivers can also add insightful information on this topic.

The following questions are worth considering regarding this geriatric population. See if you can guess the answers after you read the questions:

Do the oldest old perceive their quality of life as good or not so good?

Are their perceptions of quality different from or the same as the perceptions of their caregivers?

What if the oldest old have dementia? Do they perceive their quality of life as better or worse? Do their caregivers agree or disagree with the oldsters’ perceptions?

If you were guessing the answers as you read the questions, you may be surprised by the results of a Mayo Clinic investigation involving 144 community dwellers with mean ages ranging from 93 to 94.

Research Results:

Although the overall functional ability was higher in groups without dementia, all subjects reported high overall quality of life.

And the caregivers? Caregivers perceived the subjects' overall quality of life to be lower with increasing severity of dementia. The difference in subjects' and caregivers' perception is more pronounced for the groups with dementia. Apparently, quality of life is more strongly correlated with depression than with dementia severity.

The photo above showcases Mississippi Winn, a 113-year-old woman who was believed to have been the oldest living African-American in the country and the world's seventh-oldest person. She died January 14, 2011. This video features a reportedly 130-year-old Russian woman named Antisa who may have been the oldest woman in the world at one time.

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)

2011-04-01T02:15:00.004-04:00

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”

Death Ritual Celebrating Unknown Friends: Unclaimed Dead Funeral

2011-03-24T00:24:00.004-04:00

Rest in peace.

On this third Wednesday of the month, I join with eight others at a funeral home. We are here to pay our respects to 28 deceased people who are both strangers and new friends to us. Our purpose is to provide a final send-off to celebrate their lives. For various reasons such as abandonment at the Wayne County morgue and hospitals, or families not providing a funeral, these spirits of adults, children, and “little angels who died without taking a breath” have found their way to Perry Funeral Home in Detroit, Michigan.

Paul Betts started this monthly ritual about three years ago. He says he was driving in his car while listening to the radio one day and heard about unclaimed bodies stacking up in cold storage behind the morgue. Concerned about this increasing problem, he contacted the coroner who directed him to Perry Funeral Home where bodies were being sent for burial. Eventually, Paul and Betsy Deak, Perry Funeral Home operations manager, made arrangements for members of his St. Christopher and St. Paul Episcopal Church to become involved. They started the Celebration of Friends memorial services to bring formal closure to the lives of those with no other means of having this observance. Everyone is welcome to attend the rituals.

Carolyn and Frank Gamble, who are members of Paul’s church, are accompanied today by their granddaughter Kaitlin, age 12. Kaitlin, a regular participant who plays an important role assisting with activities during the service, says that being a part of celebrating these friends makes her feel special. Representing Transforming Love Community Church are Della Woodwall and Roberta Watson. Mike Mireles, funeral home clerk, orchestrates service preparations that include printed programs, American flags, candles, and beautiful white roses representing each deceased honoree. Roses are distributed to participants at the end of the service. Attendees are encouraged to give them to others to pray in honor of the deceased.

I sense something powerful in the room when each departed person’s earthly existence is acknowledged with an oral reading stating name (if known), date of birth, and death. Our sincere and enthusiastic response of “May he/she rest in peace” feels empowering, knowing our presence serves as testimony to their lives and our hopes for their future peace. We settle into satisfied and sing in celebration of this momentous occasion. Each one of our new friends has been claimed.

Frances Shani Parker, Author

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

Hospice and Nursing Homes Blog

How Do Hospice Volunteers Cope? (Research, Video)

2011-03-17T11:13:00.001-04:00

There is a common perception that hospice volunteers must have a difficult time being with people who are dying. Many times I have been told, “I don’t see how anybody can volunteer to work under those conditions. It must be depressing.” I reassure them that my hospice volunteer experiences are rewarding and uplifting. Sometimes I ask them, “Do you really think I would visit dying people week after week for years so I could be depressed? Give me a break.”

While hospice volunteers generally embrace their positive win-win service experiences, they also have challenges that require good coping skills to benefit themselves and their patients. A study by researchers at Utah Valley University reported on volunteer feedback from interviews addressing this topic. What are some coping techniques volunteers incorporated?

1) Problem-focused coping (seeking advice from members of the hospice interdisciplinary team)

2) Emotion-focused coping (talking with others, going to funerals)

3) Meaning making through appraisal (religious beliefs, downward comparison of oneself with others)

4) Physical techniques (walking, deep breathing)

5) Talking with the volunteer coordinator

Conversing with volunteer coordinators was the most significant coping mechanism of all. This further emphasizes the importance of their role in helping volunteers succeed.

This unique video showcases Tzu Chi (Chinese) hospice volunteers who serve in Scotch Plains, New Jersey at the Peggy Coloney House at Hope Village. This is a freestanding hospice that is part of the Center for Hope Hospice and Palliative Care.

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

Organ Donations: Family Response to the Experience (Research, Video 2:47)

2011-03-12T13:47:00.001-05:00

People have interesting ideas about donating their organs to others after they die. Perhaps you have heard someone say they wouldn’t donate their organs because their bodies would not be complete in the afterlife or on Judgment Day when they returned. With those kinds of thoughts, imagine how difficult it must be for some people to make the decision to donate organs of a loved one. Even families who view organ donation as a means for the loved one to live on in another person may find the ordeal distressful on some level.

What do people who have been involved in the organ donation process think about their experience? Response to a 20-question survey of organ and tissue donors' families in San Diego and Imperial County (California) reported these results:

1) Most respondents (84%) indicated that family support was the most helpful thing in dealing with their grief, followed by the support of friends (74%) and religious and cultural beliefs (37%).

2) Most (75%) indicated that they agreed to the donation so that something positive could result from their loss.

3) Most respondents (93%) felt that they were given enough information to make an informed decision about donation.

4) 6% indicated that the donation process interfered with funeral or memorial arrangements.

5) More than 95% understood that their loved one had died before they were approached for consent.

6) 12% said they still had unanswered questions about aspects of donation.

7) 15% indicated that discussing organ donation added more emotional stress to their overall experience.

While most respondents seem to have had a satisfying experience participating in the organ donor process and regarding grief management, some have troubling concerns that can impact them negatively over time if they are not resolved. Healthcare workers have to be especially sensitive to those involved with organ donations both before and after the loved one’s death in terms of support and grief management.

Steve Ferkau has lived with cystic fibrosis his entire life. He has almost died on more than one occasion. His life changed eight years ago when he received a new set of lungs from a young woman named Kari. This video tells their story:  

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”

2011-03-04T00:42:00.002-05:00

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, 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

Grandparents as Parents (GAP): Help for Grandparents Raising Grandchildren (Video)

2011-02-25T01:53:00.002-05:00

They thought they were finished living with children and definitely finished raising them. But that is not their reality. At a time when they are dealing with their own aging and illnesses, many grandparents and even some great grandparents are raising children. They belong to a growing population of older adults responsible for millions of children whose biological parents are not taking care of them. These caregivers never reached that cherished destination of unending childfree years after their own adult children left home. Even grandparents in their seventies are part of this widening circle.

Although we usually hear about couples or grandmothers raising their grandchildren, I have a male friend in his sixties who is raising his two grandchildren alone. Like many others, he is surprised that he has had to assume these life-changing responsibilities during the retirement years he planned most of his working life. Unfortunate circumstances usually are the cause of these unexpected caregiving roles. The amazing part, however, is how well many grandparents and grandchildren adjust to their new lifestyle changes. But the financial, physical, and emotional challenges involved can be very stressful.

The Grandparents as Parents (GAP) program is a community based organization in the Los Angeles County area that provides emotional support, educational services, counseling, funding for social activities, and other resources for grandparents and their grandchildren. Other nonbiological caregivers rasing children are also assisted. Visit this AARP site for more information about support for grandparents raising grandchildren.

This video titled “Grandparents Raising Kids” highlights the Henderson family:

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Hospice-Palliative Volunteers: Ranking and Rating Services (Research, Video 2:05)

2011-02-18T02:06:00.000-05:00

Denver Hospice Volunteer Training Class

Imagine you were recently diagnosed with a life-threatening illness. Would you want a hospice-palliative care volunteer to join this journey with you and your family? More and more adults see the value in this decision. Their concern centers around, not only the services they will receive, but also the benefits their families can reap at this critical time. Mount Alison University researchers familiarized 143 adults with the services of volunteers and asked them to simply imagine having a terminal illness. The vast majority (94.4%) wanted volunteer support.

Hospice-palliative volunteers provide many services that can be categorized as emotional, social, practical, informational, and religious/spiritual. When these groupings were narrowed down to 23 specific volunteer tasks and presented to research participants for ranking, they chose practical support most. Practical support includes tasks such as running errands, writing letters, feeding, and grooming. Gender differences in participants’ emotional and social support preferences were significant, with women rating them more important than men did. Emotional support includes holding hands, playing music, saying words of comfort. Social support includes tasks such as sharing hobbies, pushing wheelchairs, and participating in recreational activities.

In this video, Annie, a Hospice of the Western Reserve volunteer, shares her experience

in providing supportive visits to patients and families.

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”

Holocaust Survivors and Offspring: How Are They Coping? (Research, Video 2:17)

2011-02-12T02:20:00.000-05:00

Erika is my Jewish friend who was a child during the Holocaust. The Holocaust refers to the Nazis' systematic murder of more than six million European Jews, as well as members of other persecuted groups such as gypsies, homosexuals, and the disabled.

Her firsthand stories give history a name and face that validate the plight of those murdered during that horrific period. She attributes her current existence to a sympathetic family that hid her in their home from Nazi soldiers. Like many survivors who are older adults now, Erika continues to cope with the trauma of her childhood experiences.

Because of their backgrounds, Holocaust survivors may find aging more stressful. Their children may find maintaining their parents’ daily satisfaction with life more challenging at times as a direct result of parents’ posttraumatic stress disorder (PTSD). PTSD is an anxiety disorder that occurs after witnessing or experiencing a traumatic event.

How are the two generations faring in general? The University of Haifa in Israel researched Holocaust survivors and their offspring for information on their lives. They studied them using a case study design with 174 participants of two generations with four groups: 32 elderly female Holocaust survivors and 47 daughters, and 33 elderly women in the comparison group, and 32 daughters. Mental health, physical health, and cognitive functioning were examined

Results revealed that “Holocaust survivors still display posttraumatic stress symptoms almost 70 years after the trauma.” On a positive note, adult offspring of Holocaust survivors showed no differences in their physical, psychological, and cognitive functioning as compared to matched controls. I noticed they used the word “functioning,” which is quite different from saying they carry no negative impact regarding that part of their history.

This video titled “Holocaust Survivor Testimony: Menachem Frenkel” showcases another Jewish child who survived the Holocaust due to the extraordinary goodwill of others who risked their own lives. Rescue attempts were made by three organizations -- the OSE (Children's Aid Society), Amitie Chretienne, and the Jewish Underground in Lyons -- to remove some 100 Jewish children from a concentration camp. Menachem and his sister were among those rescued one night. They escaped being among the 1.5 million Holocaust victims under the age of twelve.

Frances Shani Parker, Author

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

“Hospice and Nursing Homes Blog”