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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.

Monday, April 24, 2017

Gerontology Students Living in Older Adult Communities (Research, Video 5:33)

The UN predicts that by 2050 more than 20% of the world population will be over age 60. In recent years, inclusion of gerontology students living with older adults has become more common in the United States and internationally. Using elements of service-learning, community participation, and residential immersion, gerontology students are receiving broader field experience in gerontology education.

This research, which involved a gerontology student living in older adult housing for 3.5 years, is among the longest and most intensive gerontological field experience ever reported.  Based on more than 2,000 hours of observations and conversational interviews with 14 elderly residents, this study reflects the importance of shared history, support for one another, negotiation of environmental tensions, and demand for attention on the part of residents. This unique combination of physical and social proximity in an intergenerational alliance enables life enhancement for older adults and learning opportunities for students.

The research reported above recommends that student live-in roles with older adults become more formal. This video features an innovative retirement home in the Netherlands that has opened its doors to college students who live on site and help residents in return for free lodgings while they carry out their studies.



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, April 10, 2017

Cancer: Telling Family and Friends (Research, Video 3:11)

You’ve received the phone call about a positive biopsy. Yes, it’s cancer. Now what? At some point after the diagnosis, a decision must be made about how family and friends will be told this information. This may be difficult, particularly for those who don’t want to burden others with their problems or who are used to handling their problems independently. But sharing this information is supported by research as contributing to quality of life.

In a study including 45 cancer patients, researchers investigated the association between cancer patients' ability to share information about their illness with selected others and their quality of life. This was the conclusion:

Encouraging patients to share information about their experience of cancer may help to improve their quality of life. Attachment security (emotional bonding with others) seems to promote social sharing.

In this video, Tamarin Severin, who was diagnosed with cancer in both breasts, shares the plan she created to inform her husband, son, mother, and later her friends. She put a lot of thought into how to do this and was very pleased with the results.


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, April 3, 2017

Older Adults Raising Intellectually Disabled Children (Research, Video 1:33)

The numbers of older adults raising intellectually disabled children through adulthood continues to increase and will be very significant over the next 30 years. What they undergo in their parenting roles is often not fully known or understood by most people, particularly regarding their unpleasant experiences. Through unstructured in-depth interviews, research regarding older adult parenting of intellectually disabled children revealed several themes.

Bitterness is one of the four emergent themes extracted in this study, which has these five theme clusters:

1) Inappropriate behavior toward the child in society

2) Society's failure to support the child with intellectual disability

3) Sorrows experienced by parents

4) The child's problems

5) Barriers in the care of the child with intellectual disability

6) Limitations due to aging


These results suggest that older adult parents of children with intellectual disabilities experience many sorrows and unpleasant feelings. However, further investigation reveals that they mostly consider the social factors as the cause of problems and not the presence of the child. Results also indicate that older parents cannot look after the child in their old age as they did in earlier years. This gives them another level of concern. More research s needed on how these older adults can be supported better by society while maintaining their own quality of life.

This video features CJE Senior Life's Linkages program, which identifies and addresses the issues, needs and challenges of older adults and families with adult children with disabilities. Monthly support groups offer parents the opportunity to discuss their mutual concerns. Located in the Chicago, IL area, they provide a wide range of services.


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, March 20, 2017

Euthanasia, Physician-Assisted Suicide Update (Research, Video 2:07)

Euthanasia and physician-assisted suicide continue to become legalized in various countries. Whether individuals agree or disagree with these practices, it is important that healthcare communities stay informed about them and how they are perceived by the public.

In this euthanasia and physician-assisted suicide research, polling data and published surveys of the public and physicians, official state and country databases, interview studies with physicians, and death certificate studies were reviewed for the period 1947 to 2016 with these results:

1) Euthanasia or physician-assisted suicide can be legally practiced in the Netherlands, Belgium, Luxembourg, Colombia, and Canada (Quebec since 2014, nationally as of June 2016).

2) Physician-assisted suicide, excluding euthanasia, is legal in 5 US states (Oregon, Washington, Montana, Vermont, and California) and Switzerland.

3) Public support for euthanasia and physician-assisted suicide in the United States has plateaued since the 1990s (range, 47%-69%).

4) In Western Europe, increasing and strong public support for euthanasia and physician-assisted suicide has been reported. In Central and Eastern Europe, support is decreasing.

5) In the United States, fewer than 20% of physicians report having received requests for euthanasia or physician-assisted suicide, and 5% or fewer have complied.

6) In Oregon and Washington state, fewer than 1% of licensed physicians write prescriptions for physician-assisted suicide per year.

7) In the Netherlands and Belgium, about half or more of physicians reported ever having received a request; 60% of Dutch physicians have ever granted such requests.

8) Between 0.3% to 4.6% of all deaths are reported as euthanasia or physician-assisted suicide in jurisdictions where they are legal. The frequency of these deaths increased after legalization.

9) More than 70% of cases involved patients with cancer.

10) Typical patients are older, white, and well-educated.

11) Pain is mostly not reported as the primary motivation.

12) In no jurisdiction was there evidence that vulnerable patients have been receiving euthanasia or physician-assisted suicide at rates higher than those in the general population.

13) Most patients receiving physician-assisted suicide in Oregon, Washington, and Belgium reported being enrolled in hospice or palliative care.


From these findings, we can conclude that euthanasia and physician-assisted suicide primarily involve patients with cancer and that the existing data on these practices do not indicate they are widely abused. The following video presents a more visual and detailed review of these findings:



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, March 13, 2017

Funeral Therapy Dog Comforts Mourners (Research, Video 2:20)


Meet Lulu, a therapy dog making positive contributions in the lives of humans. Animals’ ability to positively impact people in terms of anxiety has been demonstrated innumerable times with animal assisted therapy in the treatment of PTSD patients. In one study of the effect of dogs with patients, psychologists noted an 82% reduction in symptoms. It seems only fitting that animals should continue their successful caregiving during commemorations of death with mourners during funerals.

A death ritual is an opportunity where a dog like Lulu can provide her therapy services. A gorgeous golden doodle, she’s a trained and certified therapy dog at the Westchester County funeral homes. Like healthcare dogs in service in many locations such as hospitals and nursing homes, Lulu goes to funerals and provides comfort to loved ones of the deceased. While some people don’t know what to say or do at funerals, Lulu, who is introduced to families at their request, seems to know just what they need. She takes her job seriously. Funeral director Matthew Fiorillo, Lulu’s owner, says the dog has an uncanny knack for knowing who might want to be near her for comfort. Lulu with all of her eagerness to serve has a way of replacing the anxiety some mourners feel with a calmness that makes life and death seem easier.




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, March 6, 2017

Unwilling, End-of-Life, Family Caregivers (Research, Video 2:29)


Let’s be honest about end-of-life caregivers. While their contributions can be significant, they don’t always choose to have that role. Some caregivers enjoy nurturing loved ones and find the experience challenging and  rewarding. But few people talk about family caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. 

Maybe unwilling caregivers were the only siblings living near the loved ones, the only relatives or friends with resources to provide care, or the only persons willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of their situations. If they had a choice, would they do it again? Some say they would not.

In a study about family caregivers and unwillingness to serve again, questions were asked about the following:

1)   Whether someone close to them died within past 5 years (25%)
2)   Relationship to the deceased
3)   Provision, intensity, and duration of care
4)   Supportive/palliative care services used
5)   Willingness to care again 

Former caregivers (9%) indicated they would be unwilling to provide care again regardless of time since the death, duration of care, education, and income.

It is interesting to note that older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome. Clearly, caregiving a loved one at the end of life can have negative ramifications that need to be addressed. In this video from the National Hospice and Palliative Care Organization, Anita Brikman explains caregiver stress and how to cope with it.


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