Pages

Monday, July 24, 2017

Dementia, Long-Term Care Sexual Intimacy Views (Research, Video 4:54)


When the topic of long-term care sexual intimacy regarding people who have dementia arises, family members, loved ones, and staff have varied views. While research is limited on the best ways these residents can express themselves sexually within guidelines respectful of others, this particular study investigated this issue.

Through interviews, this dementia long-term care sexual intimacy research
explored the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia who were still married to other people. The following themes emerged:

1) The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes.

2) A light-hearted or non-physical connection between residents is deemed acceptable. The moment it becomes a sexual relationship, decision-making becomes more complicated.

3) Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern.


4) Relatives were considerate of the difficulties and dilemmas faced by care home staff.


Older adults with dementia can and do express sexual intimacy that is appropriate. Mutual consent is an important factor.  However, sometimes sexual behaviors can be inappropriate. Dr. David Conn explains in this video some causes of inappropriate sexual behavior and how these behaviors can be addressed by caregivers and family members:


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Monday, July 17, 2017

Age-Friendly Communities for Older Adults (Research, Video 3:41)

Older adults have made their voices very clear about wanting to age in place at home. But without a great deal of support from the community in addition to varied and better services, aging in place will be hard to meet mental and physical needs of a rapidly growing population. More emphasis should be on prevention-focused and community-based approaches.

Fortunately, initiatives such as the World Health Organization's Global Age-Friendly Communities (AFC) Network, with 287 communities in 33 countries, and AARP's Network of AFCs with 77 communities in the United States have stepped up to meet the challenge. What should be provided to create successful age-friendly communitiesThese are necessary considerations:

1) Older adults should be actively involved, valued, and supported with necessary infrastructure and services.

2)  There should be affordable housing, safe outdoor spaces and built environments conducive to active living, inexpensive and convenient transportation options.

3)  There should be opportunities for social participation, community leadership, and accessible health and wellness services.

4)  Active, culture-based approaches, supported and developed by local communities, and including an intergenerational component are important.

5)  Academic geriatric psychiatry needs to play a major role in the evolving AFC movement to ensure that mental healthcare is considered and delivered on par with physical care.

Age-friendly West Chester, PA, which is featured in this video, is a great example of a World Health Organization's Global Network of Age-Friendly Cities and Communities. Older adults there are socially integrated, diverse, and connected to younger generations.



Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Monday, July 10, 2017

Family Caregivers Managing End-of-Life Pain (Research, Video 2:05)


This is the face of serious pain, a face that many who work in the healthcare fields have seen. I remember describing in a poem a hospice patient of mine in this way: “Eyes that have seen ninety years squint tightly as daggers of pain pierce his cancerous form.” Imagine how family caregivers must feel witnessing their loved ones experiencing intermittent frustration and distress of an internal battlefield of pain.

According to several research studies, pain management was the most identified burden faced by family caregivers in end-of-life caregiving. These fourteen research papers focused on family caregivers' experience of pain management and strategies in end-of-life care. 
These were the major areas of pain management research focus:

1) Family caregivers' engagement in pain management and
    communication with the hospice care team about pain control

2) Family caregivers' knowledge, skills, and effectiveness in treating pain

3) Family caregivers' concerns and experience of pain management


Results confirmed what previous studies have already reported with these themes:

1) Inadequate knowledge and assessment skills in pain management

2) Misunderstanding of pain medications

3) Poor communication with the care team


Efforts in understanding and supporting family caregiving pain management needs are areas that must be addressed far better if patient-centered care is to be realized. Implementation is critical to patients’ care and family caregiver empowerment. In addition, more diverse patients and caregivers must be participants in the research. In this video, Dr. Mimi Pattison, Director of Franciscan Hospice, discusses beneficial pain management for those who are dying:



Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Monday, July 3, 2017

Volunteering, Making Friends with People Who Have Dementia (Research)


A hospice volunteer many years in Detroit, Michigan nursing homes with residents who had dementia, I was delighted to find research about volunteers “befriending” people with this disease. This study included a small group of nine volunteers who were younger and older adults. Responding to interview questions, they shared their friendship experiences in detail. They emphasized numerous complex and unique processes that generated issues of power, equality, and boundaries. These are some of the rewards they received from volunteering. Remember, good volunteering is always win-win:

1)   Making friends with people who have dementia was described as “a deeply personal and human experience, often with emotional power and profound meaning.”
2)   Volunteers were able to see past dementia stereotypes.
3)   Volunteers’ personal assumptions and boundaries were challenged.
4)   Volunteers became more reflective about love, life, and humanness.

This research concluded that future studies should consider the experiences of those receiving the volunteer service, ways of making the mutual friendship more effective, and more exploration of volunteer difficulties and support.

The recommendation that I would make to all volunteers and anyone else making friends with people who have dementia is based on what I have learned while making friends with my hospice patients and others who have dementia. I have included this advice in number four of my list titled Hospice Volunteer Success in 10 Steps:” 

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.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Monday, June 26, 2017

Lesbian, Gay, Bisexual, Transgender (LGBT) Patients: Research on Nursing Students (Doctors' Support Video 2:43)



Lesbian, gay, bisexual, and transgender (LGBT) patients have a history of being discriminated against in the healthcare system and society in general. Very little research is available on the attitudes of nursing students toward this marginalized population. The purpose of this research on LGBT nursing students’ attitudes was to appraise findings on this issue through an electronic search. Medical subject headings using search terms such as gay, lesbian, transgender, bisexual, LGBT, nursing students, etc. were used.

These were the results:

1) Fewer than 50 percent of the studies (5 out of 12) suggested more positive attitudes of nursing students toward LGBT persons.

2) Six studies reported negative attitudes, and one study reported neutral attitudes.

These studies indicate that nursing students' attitudes are becoming more positive. Studies published before 2000 reported a preponderance of negative attitudes toward LGBT patients. Negative attitudes impact disparities.


UC Davis Health System has incorporated a practice with doctors that provide LGBT support they believe can reduce LGBT healthcare disparities. Doctors ask patients sexual orientation and gender identity questions as part of the routine clinical assessment. By standardizing the collection of this information through the electronic health record, UC Davis officials believe this gives doctors a better understanding of each patient and helps them provide more well-informed medical advice and care. The following video explains the outcomes:




Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Monday, June 19, 2017

Hospice Staff, Volunteers Cope with Death, Burnout (Research, Ritual)



Hospice workers develop relationships with many patients who die while receiving their care. Just like other people, they experience varieties of grief responses in their need to commemorate the deceased. Honoring the life of someone who has died is not a single act, but a unique personal journey that may consist of many small tributes. While closure to life may include formal funerals and death rituals, caregivers of the deceased do not always 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 personal grief expressions to help them cope in their daily lives after formal events have taken place.

This research on hospice staff and volunteers examines the role of personal death rituals in increasing compassion and decreasing burnout. Members of the National Hospice and Palliative Care Organization (NHPCO) completed an online survey which inquired about personal death ritual practices. Included was the Professional Quality of Life (ProQOL) scale to measure current levels of Compassion Satisfaction, Burnout, and Secondary Traumatic Stress. Responses came from 340 participants, mostly Caucasian females, from 38 states.

Results indicated that 71% did use personally meaningful rituals after the death of their patients to help them cope. In addition, those who used rituals demonstrated significantly higher compassion satisfaction and significantly lower burnout with professional support, social support, and age playing significant roles. We can conclude from this research that informal rituals can play an important role in increasing compassion and decreasing burnout among hospice staff and volunteers.

Sometimes patients die without family and friends available to handle any death rituals that recognize, honor, and bring closure to death. Such was the case with my hospice patient named Lelia, whose memorial service at the nursing home was planned by the hospice chaplain. This informal ritual of only 12 participants included staff, residents, one relative, one personal friend, and myself.

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

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

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

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

Our humble circle stood in the front yard of a Detroit nursing home to perform our final death ritual for Lelia. People riding by in cars on a busy street observed a lively group of ecstatic mourners looking upward, enthusiastically singing “Going to Shout All Over God’s Heaven.” Passionate voices resonated like rockets. We released our buoyant balls of bliss floating in a hurry to get somewhere. I imagined Lelia looking on, bobbing her head to the gospel beat. She grinned her toothless rainbow smile that colored our hearts with joy from the Other Side of Through when we all yelled, “Bye, Lelia! Have yourself a good time!”

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Monday, June 12, 2017

Role Models for Aging (Research, Video 2:05)



Do you have a role model for aging? Many young, middle-aged, and older adults do. Their role models are people they admire and want to emulate in their own aging. In a study on role models for aging, there were 150 people ages 18-99 who were asked if they had role models for aging and why. Results showed 85% indicating that they had at least one. Who are these people who play such important roles in the lives of others?

1) Most role models are family members such as parents and grandparents. Those with family role models had more positive views on aging.

2) Role models usually share the same gender as the people choosing them.

3) Role models promote successful aging.


With the average life expectancy continuing to extend to later years, we can all learn something from the increasing group of older adults living beyond 100 years and living well. These centenarians enjoy sharing their secrets. While genetics can play a role, there are several suggestions many of the centenarians agree we can do that are easy to incorporate into our personal lifestyles. Check them out in this video:




Frances Shani Parker, Author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Monday, June 5, 2017

Hospice Volunteer’s Alzheimer’s Dementia Poem Praising Ancestors


This sign from America's Jim Crow era reminds me of a history I share with many. After the Civil War ended in 1865 and continuing to the Civil Rights Act of 1964, government Jim Crow laws legally enforced racial discrimination, particularly against Negroes. These laws institutionalized numerous inferior economic, educational, and social practices far below and sometimes non-existent compared to advantages white people received. Negative ramifications continue today impacting victims, their families, their communities, and the entire nation with long-term burdens and losses of productivity.

In an urban nursing home, I was inspired to write this poem while watching my African American hospice patient sleep. I thought about our shared heritage that bridged our communication beyond her Alzheimer’s dementia. This poem is written in praise of her and everyone’s ancestors who have endured racial-ethnic oppression. Their resilience gifted us with sustaining stories of joy, pain, courage, and survival that go far deeper than words.

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


1) Visiting Someone With Alzheimer’s: Emotions Without Memories (Research)


The post link below reminds us that the emotional lives of individuals with Alzheimer's can be greatly influenced by experiences, people, and places they do not recall. 


https://hospiceandnursinghomes.blogspot.com/2015/11/visiting-someone-with-alzheimers.html


2) Children Learn About Dementia, Alzheimer's: School, Family Support (Video 3:51)

An educator who has been actively involved with introducing elementary-middle school children to the nursing home world and dementia for many years, I have always been impressed with the sensitive ways they embrace knowledge about this disease. Click link below for more information about this form of teaching-learning called service-learning.

https://hospiceandnursinghomes.blogspot.com/2016/03/children-learn-about-dementia.html


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers

Monday, May 29, 2017

Older Adult Couples Living Apart Together (LAT): (Caregiving Research, Video 7:48)

Can absence really make the heart grow fonder? You’re middle-aged or over, divorced, widowed, never married, and basically content with living in your own space. Someone comes along that you love romantically, and you are confronted with the decision of living with this person in one household or not. What would you do? An increasing number of older adults are choosing to have a living apart together (LAT) relationship.

Many couples want a monogamous relationship without living together for various reasons. These may include financial and property considerations, lifestyle preferences, family issues, and just plain privacy, particularly for those who enjoy the freedom of living alone. Keep in mind that trust is a major factor that must be addressed in a long-term committed relationship under these circumstances.

What about caregiving if serious illness occurs? The reality is that many men want someone to take care of them if they become ill. They are usually more persistent than women about living together in a single household. Women, however, may not want to be caregivers, particularly in their own aging years. In research involving couples living apart together, interviews took place with 25 LAT partners and a comparison group of 17 remarried older adults.

What were the results? About half of the LAT partners said they would exchange caregiving if needed. The other half had ambiguous feelings or intentions to refuse caregiving. For those LAT partners already confronted with illness in their current relationship, all provided care for the partner in need. The minority of LAT partners who would not exchange care reciprocally were more likely to give as opposed to receive care.

This video features several facets of Canadian LAT partnerships of both young and older adult couples. It’s interesting to see how these two age groupings approach and sustain this growing trend of loving and living:


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Monday, May 22, 2017

Aging Veterans' Post-Traumatic Stress Disorder (PTSD), (Story, Recovery Video 3:22 )

My hospice patient Nat was like many aging men and women who have served our country during various wars. A Viet Nam veteran, he suffered with repressed fear and sadness resulting from his war experiences. We had many conversations about his life during my weekly visits with him. His story is typical of many veterans who suffer with post-traumatic stress disorder (PTSD). (Excerpt from BecomingDead Right: A Hospice Volunteer in Urban Nursing Homes)

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

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

“I fought in a war years ago. Gave the best I could give. I’ve seen and done things you couldn’t imagine. Some of them were horrible, I mean really horrible. Don’t ask me to tell you what they were, because I can’t talk about it. They say time heals all wounds, but it’s a lie. I left Viet Nam, but Viet Nam never left me. I carry it with me everywhere I go.

All these years later, I still have nightmares like you wouldn’t believe. The doctor says it’s post-traumatic stress disorder or PTSD. I wake up shaking, gasping for breath with tears in my eyes. In my dreams, I’m always running hard trying to escape. Sometimes my enemies are close enough for me to touch. I almost stop breathing to keep them from hearing me. I’m constantly thinking I’m not going to make it. Some nights they kill me before I wake up. My dreams are so raw, so real they turn my soul inside out.

In real life, I came back alive. A lot of people who served, some of them my friends, didn’t come back. That’s why I keep that flag there all the time. It’s out of respect for those who came back in body bags; it’s for those still struggling with physical and mental injuries. It’s the least I can do for them.”

What help is available for veterans with PTSD? In this video a Marine Corp veteran named Warren details the horror of his life living with PTSD and how he recovered by facing his demons. He received help from the U.S. Department of Veteran Affairs. Warren encourages all veterans to get the help they deserve after fighting for this country. 


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Monday, May 15, 2017

Win-Win Hospice Volunteering

By Frances Shani Parker

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 improvement. 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 life from their perspectives. Focus on advocacy for improving their quality of living.

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 own 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 of 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 and e-book editions in America and other countries at online and offline booksellers.

Monday, May 8, 2017

Grandparents, Grandchildren Cancer Support (Research, Video 1:48)


Holding hugs and holding hearts are what grandparents and grandchildren do best. During sickness and health, they can play crucial roles in one another’s lives. A grandchild with cancer greatly impacts a grandparent’s quality of life. In a research study including grandparents of children with and without cancer, grandparents were assessed regarding sleep, medications, and hospitalizations.

The following results were reported:

1) Grandparents of children with cancer reported significantly worse quality of life. They also reported more problems with anxiety, depression, and pain.

2) Grandparents of children with cancer reported taking longer to fall asleep and taking more medications in the last 4 weeks.

3) Hospitalizations across groups were comparable. But grandmothers living in urban locations, and retired/unemployed grandparents experienced reduced quality of life.


Cancer of a grandchild affects a grandparent in significant ways. Given that four or more individuals may be affected per child, and that a grandparent’s well-being can influence the whole family, interventions targeting at-risk grandparents are needed.

Sometimes, the grandparent is the person with cancer who needs support. While many family members and friends may rally around the grandparent, loving attention of a grandchild can also be very helpful. This video shows how Cheryl Gerald's granddaughter stepped up to do her part in helping her grandmother, especially while she went through chemotherapy for breast cancer.


Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog

Monday, May 1, 2017

Doctors’ Religions, Spirituality, Influence on Patients (Research, Video 2:31)


So much medical focus is placed on doctors, it’s easy to forget that they are people just like everybody else. They come into the world and evolve while embracing various ideas and philosophies that mold them into the people they are at any given time. Religion and spirituality can play important roles in their becoming doctors and in their everyday decisions. Do most doctors believe in God? Do most doctors within a particular specialty tend to believe in agnosticism and have no certainty God exists or not? Are most doctors atheists who don't believe in God? Do doctors pray with patients or try to influence them toward their religions? These are questions with answers that may be of interest to you.

This research study examines the influence of religion and spirituality on doctors’ decisions to pursue medicine, daily medical practice, and their interactions with patients. Emailed anonymous surveys were completed by 2,097 responding doctors whose practicing years ranged from ≤1 to ≥ 30 years. Medical fields represented included primary care, medical specialties, surgical specialties, and psychiatry.

The following results were reported:

1) The majority of doctors believe in God (65.2 %), and 51.2 % reported themselves as religious, 24.8 % spiritual, 12.4 % agnostic, and 11.6 % atheist.

2) Most doctors consider themselves religious or spiritual, but the rates of agnosticism and atheism are higher than the general population.

3) Psychiatrists were more likely to report agnosticism and were the least religious group.

4) Frequent prayer was reported by 44.7 % of doctors, but only 20.7 % reported having prayed with patients.


Although the influence of religion on doctors’ lives and medical practices did not influence the majority of them to incorporate prayer with patients, there are times when doctors and other healthcare workers may try to sway patients’ beliefs to be more in line with their own religious and spiritual beliefs. This video presents a scenario including a patient's charge of religious discrimination by a doctor.




Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.